Hi,

I have had a series of 3 surgeries: a total colectomy with an ileostomy in 2014, j-pouch surgery with an ileostomy in 2016 and ileostomy takedown surgery in 2016. I am now experiencing some problems and am wondering if anyone else has had similar experiences.

Over the last 8 months I have had 3 episodes of severe sharp pain on the lower right side of my abdomen. Each episode lasts 4-6 hours and resolves on its own. I went to the ER for the last 2 episodes and all my scans and test results came back normal during these visits and the doctors were unable to do anything for me. My gastroenterologist thinks I have adhesions from surgery that are causing my intestine to twist or bend resulting in a temporary blockage that lasts several hours. In-between these severe episodes of pain I am also feeling soreness in that area and occasional mild sharp pains, especially when moving around, sitting down, bending, lifting something or putting pressure on the area. The pain is always on the lower right side near where my surgical incision & stoma were. 

Has anyone else experienced anything like this? Has anyone else had adhesions after surgery that caused a similar experience or was your experience different? Any thoughts, ideas, suggestions for me?

It is frustrating not knowing exactly what is causing this because every test the doctors run is coming back normal. My next steps are to have a barium test and talk to a surgeon about possibly having surgery to remove any adhesions that are present. An additional surgery could lead to more adhesions though so I am nervous about that, especially because we don't know for sure if adhesions are the problem. I really want to figure out what is causing this & find a solution to resolve the issue.

Has anyone else been through this?

I would love to hear about other people's experiences with this.

Thank you so much! 

Original Post

yes, I have been going through this same situation since 1987. I had an emergency surgery in 1989 to remove a blockage.  Surgeon informed me taht if they hadn't removed that blockage when they did I would have had only one more hour before I would have died.  I have been off work for the last almost 5 months due to blockages, three times I was admitted to hospital. I'm afraid to do surgery to remove adhesions as that would mean major surgery without any guarantee of  o further obstrutions. The occurrences have been much over the last four years.  

I forgot to add that I was admitted into hospital on all of these occurrences for bowel rest.  Thankfully I have been ok without teany further needfor further surgeries due to these issues.  I stay away from hard to digest foods now.  I meditate and have a hobby that takes my mind of stressors in my life.  

Hi MADDIE18,

Thank you for responding to my post.

I am curious how your doctor determined what the problem was because we are still in the stages of trying to figure out exactly what is happening. All of my scans and test results come back normal when I am experiencing the pain. There is nothing showing "proof" that I have a blockage or that there are adhesions or that my intestine is twisting/bending. My doctor is thinking that is what's happening based on my symptoms but we don't know for sure. 

Also, how often do you have episodes of severe pain? Do they last for hours like mine? What do you do when it happens? So far my doctor is telling me to go to the ER if it happens but it is exhausting to go through the ER experience each time just to have them tell me everything looks normal and send me home. I know it's better to be safe than sorry but I wish there was a better option.

Have you been able to go long periods of time without experiencing an episode? Are dietary changes helping? So far this has happened once every few months since it started, even with dietary changes.

Thank you again!

The only way they can tell is through x-ray. My x-rays are hard to read (too many scars and adhesions, I'm told) because I've had 8 abdominal surgeries. So when they see an obstruction it's a very good guess made together with my symptoms. I vomit and I'm in extreme pain and I can't go number 2 when I have these pains. Do you have any other symptoms at all when you're in pain? I have to have a very strong pain killers, morphine doesn't help my pain at all. I need Dilaudid.

MADDIE18,

My symptoms sound very similar to what you’re describing: severe sharp pain that comes on suddenly and randomly, trouble going to the bathroom, vomitting. No other symptoms like fever or anything else that I can think of. It has always happened in the evening after eating. 

At my first ER visit they gave me morphine and it didn’t help at all. That is interesting that it doesn’t help your pain either. 

You said this started in 1987, how many times has this happened to you since then? I really don’t want this to become something that happens frequently, it is so hard to go through. I’m so sorry you have been dealing with this for so long, that sounds really hard.

Do you go to the ER everytime it happens or does it get better on its own if you wait it out at home? Does pain medicine help? 

It sounds very difficult to live with long term, I’m sorry you are dealing with this too! 

Let me know if you can think of anything else that might help me. I really appreciate it. 

Thank you again! 

A few things about adhesions:

1) Most of us have adhesions after abdominal surgery. Most adhesions are inconsequential. Some adhesions are bothersome, and some adhesions are very bothersome.

2) Adhesions (causing the bowel to twist or kink) can rarely be proven as the cause of abdominal pain or obstruction (unless you get opened up and the problem is visible). They can be strongly suspected if the behavior is suggestive and other possibilities have been ruled out.

3) Adhesion surgery is indeed risky, since it really can make things worse. Nevertheless, there are plenty of people who have gotten their life back from it. It’s a very tricky decision.

4) The reasons to get medical attention for obstructions are a) hydration, if you can’t take in fluid, b) access to emergency assessment and surgery in case a bowel rupture or infarction is imminent, and c) pain relief. Many folks appropriately delay emergency care once they get to know their bodies, and recognize a partial obstruction or one in its early stages that might clear on its own. Many do clear on their own.

This read's just like my story the past year--sorry you are going through it. I ave all my pain on the lower right side too. I finally saw a colorectal surgeon who saw things on scans that others didn't and said the right sided pain/attacks--just like yours--are from blockages from adhesions. I have been admitted 6 times to hospital for them and had another 7 at home, but they are always partial blockages. Sadly there isn't anything they can do and I am trying to find a way to live with them. Just wanted to let you know you are not alone, and to not listen when they say "it's fine" or "all the scans are fine. You know your body, and pain like that isn't normal! I had every scan under the sun and it took this surgeon to sort it out. At least I get some pain meds and maxaran at home so I can get through them at home without wanting to claw my eyes out in pain or have to go to the ER every time. 

DUCK11,

Thank you for sharing your story, I’m so sorry you are dealing with this too! I am meeting with a surgeon in a couple weeks and it will be interesting to see what she says. I’m worried it might just be something I have to live with too. Thank you for letting me know I’m not alone. I hope at the very least the episodes will be few and far between. 

I can't take anything for pain.  Plus that isn't recommended.  Pain meds slow down the bowel.  I take enzymes bowthat break down the foods I eat.  I usually take them with my biggest meals.  Trust me, these are saving my life.  You should try them.  

Blockages acan be fatal.  Symptoms should not be covered up with pain meds.  Your bowel needs to go on a rest. No foods, just IV fluids.

I almost died with my first episode.  The surgeon said I had one hour.

Where are you residing?

Hi maddie 18,

I think your situation and ours are very different. The blockages you can die from are full blockages, and no amount of pain meds would cover up the pain! Partial blockages are different in that they are just awful enough to make you bedridden, but can usually be managed at home with fluids and pain/nauseau ,management. A small amount fo air/fluid passes through so you know it isn't fully blocked. I've had full and partial, and believe me, you can tell the difference. The full i would definitely go to the hospital for, but the partial you can sometimes manage at home. I don't think anyone is suggesting to avoid hospitals and self-medicate wth painkillers, just that there are varying degrees of blockages. 

I have been hospitalized 17 times for blockages. I have had surgeries for these blockages twice. The first to m e in 2012 . I remain mhm ed symptom free f or approximately 4 years after that surgery. Then they began again. I had the second surgery in October 2017 but have had 3 hospitalizations t ions since then. It's always the same CT scan. NG tube, severe pain which only responds to dilaudid not morphine , versed for the vomiting, I vs , no food and usually a 3 day stay in the hospital. I usually try to get to the nearest and largest medical Center where they have a colorectal surgeon on staff in case they have to do emergency surgery. These attacks have always occurred in the evening. Has anyone been told how to prevent them other than staying on a low residue diet? These attacks have happened when I have been on vacation out of state and in Europe. I am afraid to travel anymore.

 

I experienced another, shorter episode of intense pain last night and this time it happended 8 hours after I had last eaten anything and I was having BMs up until the pain got intense. These painful episodes seem so random. I’m still not even sure if they are blockages since the hospital tests never show anything, but I don’t know what else could be causing the pain. I also have milder pain in the same lower right area pretty much everyday and I feel mild pain when doing different things like standing, stretching, laying down, lifting something, bending, etc. When I’ve been to the hospital they don’t find anything wrong so they just send me home. I wish I knew how to keep this from happening. I’ve tried eating smaller meals, resting, drinking plenty of fluids, avoiding food that is hard to digest but nothing seems to work. I’m meeting with a surgeon and another gastroenterologist in a couple weeks, it will be interesting to hear what they have to say. 

Gosh your symptoms are exactly like mine, sorry to have a partner in misery When I saw the second surgeon, she said all these can be caused by adhesions even if nothing shows on scans. The bowel can twist/untwist at random which is why diet doesn't seem to affect it and why the pain level can vary so much. I feel like I have chronic pain in the lower right and when the pain gets bad, it's the same place/kind of pain but just a greater intensity. I too tried fluid diets, low residue, everything, but nothing seemed to make a difference. She said diet wouldn't matter if the pain is from adhesions, although it can sometimes help. Please do post back on what your dr.'s say--I'm really curious to hear if there is a different prognosis possible then what I was told.....I am at the end of my rope too  

DUCK11,

Wow your symptoms do sound like mine! I’m sorry you are going through this too!! How long has this been going on for you? How often do you have severe pain? How often have you had to go to the hospital? Are your doctors suggesting surgery or anything else or is this something you just have to deal with? I’m meeting with the surgeon next week, really interested to see what she says. Also getting a second opinion from another GI doc the following week & then following up with my regular GI doc in May (there’s a long wait for an appointment). So far the only other advice I received was from my OBGYN who said it’s possible that this could be endometriosis because some of the symptoms are similar. She said I don’t have the “classic signs” but that doesn’t completely rule it out. So I’m trying out skipping my periods with continuous birth control (skipping the sugar pills) because if I have endometriosis that will help and she said it won’t hurt anything to try this. If it helps great, if not we can rule that out. I still think this is probably GI related but I’m willing to try almost anything at this point. 

I thought I would write before I see the new GI doctor and ask you some questions. I assume that you have had C T SCANS. when you go to the hospital. What about MRI and scans with contrasting medium? What about any swallowing tests with contrast medium? Do you have copies of these tests and the CDs to take with you to the doctor? Are you going to be seeing doctors that is a colorectal surgeon and a GI that actually are familiar with J Pouch surgery. I think you are smart to have the endometriosis looked at too. My problem shows up on scans as being around the area of the anastomosis I have been told that I will have to deal with these episodes (bowel obstructions )as long as I respond to the treatment that I mentioned N G tube , pain meds , hospitalization andbowel rest. More surgery would only be done if it was an emergency such as a strsngulated bowel or gangrene. Crazy thing is the condition or the j pouch on the pouchscope is good. I continue to be told by my doctors that they can't tell me if there is anything to do to prevent t hem.  I will be anxious t o hear what you are told and will let you know after my next appointment in April if I learn anything else. Hopefully we can stay out of the emergency room in the meantime.

Have you corresponded with anyone else on this site that has chronic obstructions?   

 

 

 

MARJ,

I have had CT scans, ultrasounds & a small bowel follow through with barium & every test has come back “normal”. I haven’t had an MRI with contrast, maybe that would show something? My GI doctor says it is really hard to catch something like this on a scan so I’m not too incredibly hopeful about that. I don’t have copies of the test but everyone is connected to the same system so they should be able to pull stuff up on the computer. The GI doctor I’ve been seeing is at the #1 ranked hospital in my state and he is one of the doctors with the most experience with j-pouch patients in the area. He recommended a few others that also have a lot of experience so I am going to see one of them too. The surgeon I’m seeing is with the same hospital and she is the chief of colorectal surgery & I’ve been told she’s great so that is positive. I find it interesting that everyone has mentioned being admitted to the hospital, being put on bowel rest, etc but when I’ve been to the ER they run tests, say everything is normal and send me home. Maybe in other people’s experiences the doctors found something so that’s why they treated the situation differently. My doctor also hasn’t been able to tell me much about how to prevent this from happening. I’m guessing it’s just so unpredictable that there’s not a lot that can be done to prevent it. So far all of my correspondence about this is in this thread of conversation. Good luck at your appointment, I hope you get some good information & help! 

Yeah the ER dr's are always like 'everything is clear" for me but I insist on them calling the surgeons anyway and that is who admits me. ER doctors don't have the expertise to deal with us I have learned. My "scans" are always clear ut the surgeons admit me for bowel rest etc. anyway for 3-4 days. They say they can tell by the symptoms/how we respond to the treatment. Maybe next time you are in the ER, insist o a colorectal surgical consult and make your case. I had one surgeon at another hospital who, too said "go home", so now I go to another hospital where I found a more caring surgical team. It is amazing how different medical opinions can be...!!! I am just shocked to see here how many of us are dealing with this. It seems like a major downfall of pouch surgery. I am at the point of considering disability because I deal with theme minimum of 15 days/month. I don't know how one is suppose to hold a job like this. i think we need to start a patient uproar to encourage more research into these long term side affects...!!!

 

SJAN810 posted:

MARJ,

I have had CT scans, ultrasounds & a small bowel follow through with barium & every test has come back “normal”. I haven’t had an MRI with contrast, maybe that would show something? My GI doctor says it is really hard to catch something like this on a scan so I’m not too incredibly hopeful about that. I don’t have copies of the test but everyone is connected to the same system so they should be able to pull stuff up on the computer. The GI doctor I’ve been seeing is at the #1 ranked hospital in my state and he is one of the doctors with the most experience with j-pouch patients in the area. He recommended a few others that also have a lot of experience so I am going to see one of them too. The surgeon I’m seeing is with the same hospital and she is the chief of colorectal surgery & I’ve been told she’s great so that is positive. I find it interesting that everyone has mentioned being admitted to the hospital, being put on bowel rest, etc but when I’ve been to the ER they run tests, say everything is normal and send me home. Maybe in other people’s experiences the doctors found something so that’s why they treated the situation differently. My doctor also hasn’t been able to tell me much about how to prevent this from happening. I’m guessing it’s just so unpredictable that there’s not a lot that can be done to prevent it. So far all of my correspondence about this is in this thread of conversation. Good luck at your appointment, I hope you get some good information & help! 

'My GI doctor says it is really hard to catch something like this on a scan.'  Sounds like GI has an idea if he said this...have you asked him to explain what he or she means?

 

 

 

MARJ,

That is a good suggestion to ask for a consult from colorectal surgery and maybe gastroenterology too. I’m sorry you are dealing with this so often, that must be so hard! Also, I agree that it is really hard to work with these kinds of issues going on. 

MADDIE18,

My GI doctor thinks that based on everything that’s happened and everything I’ve told him, I have adhesions from jpouch surgery that are causing my small intestine to twist or bend at random and cause some sort of blockage and pain. He thinks this even though so far all of my scans and tests have come back “normal”. He said maybe by the time they do the test it isn’t twisted anymore and basically said that even though this is probably happening it is not necessary going to show up on any kind of imaging they do, especially after the fact since I’m not in severe pain 24/7, it is episodic, that makes it harder to “catch”. That is my understanding anyway. 

Not much feedback on how to prevent the episodes besides eating small meals throughout the day rather than a few big meals because when I get overly full feeling it’s just going to put added pressure on the area which probably isn’t going to help the situation. 

I’ve been prescribed medicine to relax the intestine which I can try if the pain starts up. I first tried dicyclomine and then hyoscyamine, neither one seemed to make much of a difference for me but maybe it would help others. I was also given pain medicine with the understanding that I will only take one pill and if I’m still in pain & not having BMs after a few hours I will go to the ER. This helped me get through an episode the other day where after a couple hours I was feeling better and didn’t need to go to the hospital which was really nice because going there is such an ordeal. He only gave me a small number of pain pills though and is focused on me following up with the surgeon so I’m really curious to see what she says and then what my GI doc says after that. I want to know what to do long term. Right now I’m just waiting for all my appointments to take place. 

Thanks for posting. My appointment isn't until the second week in April but I will post something then . I have had a lot of vomiting by the time I get t o the Emergency Room so I need medication by injection. The wait is always so long in the Emergency .Room .😢

 

Marg and SJan810,

Thank you for sharing your stories here--not that I am glad others are going through what I am, but somehow comforting to see other physicians giving the exact same information and advice as mine have. And you are right Marg, the ER wait is so dreadful

The "twist/untwist" scenario you mention is also what my Dr. said and why it isn't showing on scans and also why it seems to come and go at random. Sometimes it is partially blocked for 4 days and sometimes it is just suddenly painful for a few hours and seems to pass. I'm alarmed how many narcotics I've taken the past few months to cope but honestly don't know what else to do--I don't think I could function without them with how often I am in pain from this-at least they make it less awful. I'd be in the ER twice a week. And going to the ER is SUCH a ordeal. My surgeon told me today the only reason I need to go to the ER at this point is if I started vomiting a lot, have a fever, or have intolerable pain, otherwise it is Ok to try to soldier it out at home. She also said there are no surgeries that can help since they don't know where the mechanical problem is. She said to mentally prepare for disability and I am trying to process it all and how to care for my infant son. Really looking forward to hearing what your dr.'s tell you as I am at my witt's end  

May I ask, and it might have been asked and answered, but do you have a J, S or W pouch?  I have a W pouch and a year ago had pain in my lower right quadron, after i threw up I went to the ER.  It was a complete obstruction that needed surgery yesterday.  I haven't had any problems since, but I do know that I am über sensitive to pains now.

 

I have a j-pouch, my surgery was at the end of 2016 and I just started having this pain mid 2018. I’m sorry to hear so many of you are dealing with these challenging issues & I’m thankful for the support & encouragement from all of you too. It’s nice to know I’m not alone in this. I was diagnosed with ulcerative colitis as a kid and I knew I would be dealing with the effects of it for the rest of my life but the issues/challenges that have come from it seem to be getting more and more complicated with time. When I was a kid it was just about avoiding a few foods and taking medication, now it’s random pain that puts me in the ER with no idea how to avoid it. It’s hard but I feel like all I can do is try to make the most of the times when I’m feeling okay and take life one day at a time. I’m really lucky to have a supportive husband and I was able to stop working last year because it became too much with everything I’m dealing with but it makes me think there needs to be a lot more support out there for people dealing with these issues. I often think - what would I do if I were single and had to support myself, it’s really scary! I’m grateful for online communities like this that I can reach out to for advice, suggestions, support & encouragement. 

Hi! My first time ever posting or joining a support group. You have no idea how thankful I am to have found this! I have been having abdominal pain as you have all described for years and never has my surgeon really found any answers!  I sometimes feel I’m going crazy.  Sometimes I’m scared one of my “episodes” won’t work itself out on its own and I’ll have to decide what to do... I’m so sorry you all go through this pain, but I’m comforted to know I’m not alone with this proble in the j-pouch world. Thank you so much for sharing!!!

I wish we could mobilize these thoughts somehow to communicate to the medical community what it is "actually" like to live with a J pouch and adhesions (and other problems)  and find a way to encourage more research in these areas. All the dr.s I have ever met are like "oh yeah, it's fine, you just might need to adjust your diet and go to the bathroom more". Reading on these forums this is so far from the truth most of us live, and it honestly seems like they are oblivious to it and the affect on our quality of life. I wonder if it is a cause the Chrons and Colitis Foundation could take up or advise on. 

Sidenote-I just spent a hellish day and night in the ER with more adhesion issues with incredibly uncompassionate doctors. Feeling very beaten down  

BANDITGURL,

I am sorry to hear that you are dealing with this too & I‘m glad that finding this forum offered some comfort. I thought I was alone in this too before so many people started responding saying they are having the same issues. 

DUCK11,

I’m so sorry to hear you had another episode and had to go to the ER! Hopefully you were able to get some rest today and are feeling a little bit better. I understand your frustration with all of this. I sometimes wonder if I would have chosen to have the jpouch surgery if I knew things were going to end up the way they are now. I think a lot of people who have jpouches do okay with them and doctors don’t want to scare us by telling us everything that could possibly go wrong but then it is really frustrating when things go wrong that you never expected. I don’t have any regrets because my choices were to stay sick with ulcerative colitis, have an ostomy forever or do the jpouch surgery and I couldn’t continue the way I was being so sick and I knew that if I opted for a permanent ostomy I would always wonder if life would have been better with a jpouch so even though I’m dealing with some really hard stuff right now, I feel that I made the best decision I could. If I could have chosen to be totally healthy & not deal with any of this I would have chosen that of course but it wasn’t an option. The biggest lesson I’m learning is how to accept my reality and make the most of it, it’s so hard sometimes but it seems to be the only way to keep moving forward. Have you tried reaching out to the Crohn’s & Colitis Foundation to find out if any research is being done about all of this? It would be great if someone was able to figure out better ways to help all of us! 

I learned a lot from everything I have read on here! A lot of this information has never. Even given to me by my doctor.  I have had my j pouch now for 19 years and didn’t start having these issues until probably the last 8-9 years. I’ve really been very lucky!!  Having some research done for the future would be great!

Duck11, 

Sorry for your day!  Yikes, makes me thankful for the moderately pain filled week I’ve had.  😜 Gotta look for that silver lining sometimes!  I hope you are filling better by now. The Dr’s just not getting it and not realizing what your going through just makes it so much worse!  Thoughts and prayers for better days for you and everyone on here!

 

Adhesions really make life miserable for some folks. They aren’t specific to J-pouches, though. Any abdominal surgery (including an end ileostomy) can leave behind adhesions that may cause intermittent problems. There’s no specific diet, but at the first sign of trouble it’s best to switch to liquids, so solid food doesn’t back up behind a temporarily narrowed area.

Just Some thoughts:

I think what would help is medical knowledge on how to prevent adhesions from forming in the first place or w hat to do to break them up once they have formed. I can understand why the doctors don't want to do more surgery unless you are in crisis and they have to operate.  Adhesion problems can occur after other surgeries but it would be good to know how much higher the rate of adhesion problems are after j pouch surgery and is there anything that can be done prior to,during, or after surgery to prevent them from causing problems. Other abdominal surgeries can cause adhesions including ileostomy surgery but is the risk and By higher when you have jpouch surgery? If the risk is that much higher for jpouch surge rises then that should be explained before surgery.         

Has anyone been told to get rid of the jpouch as a solution?

I hate the uncertainty of when these attacks might occur and not having anything that we can do to prevent them from occurring.

 

 

 

 

 

 

 

 

 

 

 

 

I had a total colectomy with 'W' pouch in 2016. After about a year I had sharp pain on my right side and I couldn't pass anything.  I threw up after about three hours of pain and went to the ER.  I had adhesions.  They didn't know until a contrast scan was performed and then rushed me to surgery.  The surgeon that was there told me that my pouch was almost dead when they got in there due to being flipped over itself and the blood supply was cut off.  I am wondering if this happens more with people that have larger pouches, i.e. S pouch and W pouch.  

My surgeon said that once you have adhesions the likelihood of getting them again is almost a foregone conclusion.  I am going to keep my fingers and toes crossed that he is wrong!

Scott,

Thank you for sharing that info about adhesions, it was really good information to read through. It is also helpful to share with my family so they can better understand what I’m going through. 

STOLEMYCOLON,

Wow that sounds like a really scary experience you went through! I hope you haven’t had anything as serious as that happen since then. It sounds like these obstructions can get really bad so it makes even more sense now that my doctor was pushing for me to go to the ER if I have an episode of pain just to make sure everything is okay. 

SJAN810,

I was just re-reading this thread and see you mentioned endometriosis. I have this as well and was diagnosed a few years ago and can say the "type" of pain from endometriosis is very, very different than the pain we are all talking about here. For me, it was more diffuse--like my entire lower abdomen was on fire all over with thousands of needles poking me everywhere, not the one-sided sharp and focused pain the adhesions are causing. It also didn't make me sick, bloated and blocked up like adhesions do. My GI tract functioned fine despite the endo pain. Maybe it depends where the endo lesions are though. Anyway, I have had my endo under control (thank goodness) for 2 years now, and still have all the pain we are discussing here. I'm not saying don't look into getting it treated to see if it is there, but just don't let them dismiss your  gut symptoms and blame it on that. After my endo was under control and I still had this other kind of abdominal pain, they gave up on me. It was like, "well, we did all these tests and you have treated endometriosis, so you shouldn't be in pain anymore". Flashforward 2 years where I started having blockages all the time, and I can see that pain was the start of all of this adhesion business. 

 

DUCK11,

Wow it’s really interesting that you have endometriosis on top of everything else and it is interesting to know how the pain is different. My hunch is that I don’t have it but I’ll still look into it just in case. I wonder if there is any correlation between endometriosis and abdominal adhesions. That is a lot for one person to deal with! I’m sorry to hear you have it but it’s great that it’s under control. One less thing for you to worry about at least. 

Well I met with the surgeon today and she didn’t have much to add. She basically said she doesn’t know why I’m having pain, she doesn’t know why it’s happening, doesn’t know what to do about it, doesn’t recommend surgery since she doesn’t know what’s causing it. My gastroenterologist said he thinks the pain I’ve been having is from adhesions causing my intestine to twist or bend and cause an obstruction but the surgeon thinks that is unlikely because she said they would have seen the obstruction when they did the CT scan. So now I’m even more confused that I was before because I’m being told that my symptoms are a complete mystery. Feeling frustrated. 

Sjan810,

How frustrating-I'm sorry you didn't get any answers. Can you get a second opinion with another surgeon? I had one surgeon tell me what you heard, but the other one said adhesions cause all of this and they aren't usually able to catch them on scans. Have the scans caught anything related, like dilated bowel loops or anything? That is what my surgeon saw on mine despite not seeing a clear obstruction point--they said this only happens if something is blocked. 

All of the scans I’ve had have been normal, no signs of anything abnormal whatsoever. My next step is to go back to my gastroenterologist and basically ask: now what?? I feel like I’m just going to have to live with this and I don’t think there’s mugh I can do about it since no one can say for sure what is going on and they can’t treat an unknown issue. Ugh. 

DUCK11,

Yes, when I’m in pain it usually happens after eating & I either have no BMs or only watery ones during the painful episode which usually lasts about 5 hours. I sometimes have bloating & I vomited one of the times mostly because I was drinking a lot of water thinking it would help things pass through but I just ended up getting bloated & vomiting. I tend to feel bloated after eating even a smaller sized meal, I often have to push a lot to have a BM. It seems like I’m having some sort of obstruction but I don’t know why nothing shows up on scans. Maybe it’s something different, I just wish someone could tell me what’s wrong & what to do about it. 

Hello!  I am new here.  I had a total colectomy with J-pouch in 2008 and I have been dealing with abdominal pain and nausea for the last 2 years and like you all of my test are coming back pretty much normal.  I have had some liver test that have been slightly abnormal and they saw mild dilation on my MRI but my surgeon and GI doctors are all saying nothing that should be causing the pain I am having.  They explored endo, I even had a complete hysterectomy to try and alleviate the pain but even after that I am still having the same pain as before.  I had a capsule study done in 2017 and they said I had a portion of my small bowel that was slow moving and told me to try laxatives, but that didn't provide any relief either.  I am seeing a new GI doctor and they are repeating the capsule study this Monday to see if there was something missed or something that has changed since the last one.  I'm hoping it will provide some answers.  As bad as I feel that there are others going through the same pain as I am it is nice to know that I'm not crazy.  Thank you for sharing your stories.

I saw a new gastroenterologist yesterday who also said he thinks my pain is caused by adhesions. He thinks I’m either experiencing partial obstructions that resolve on their own or that I’m just not able to go to the bathroom while in pain because it’s too painful to push with my abdomen & try to go when I’m in pain. He doesn’t know what causes the episodes or how to avoid them. Basically the adhesions pull on whatever they’re attached too & that causes pain but there’s no way of knowing exactly what triggers this. He said a low fiber diet  may help but there are no guarantees there. He said surgery to remove adhesions would likely make things worse and since this is only happening once every few months he wouldn’t recommend going down that road. He said unfortunately there’s not much we can do but treat the symptoms when these painful episodes occur. This has been a crazy journey trying to figure all of this out over the last 6 months or so! I’m starting to feel a little more okay with this new reality. As long as it’s not happening all the time and I can get through the episodes with some pain medication I can live with this. 

If adhesions are what cause a lot of the pain, do they also cause stool not being able to pass through?  Or are the painful episodes experienced from adhesions and the ones from partial obstructions completely unrelated?  I’m guessing unrelated...

I have been on a low fiber diet for a long while now. It does seem that it has caused my episodes to be less frequent?!  They still just pop up randomly.  But I’m thankful for less.

AmberQ, what is a capsule study? I thought I’d had everything, but I’m not sure what that is. 🤨

Adhesions themselves are painless, but they can lead to pain in two ways. Since they can’t stretch they can pull on the gut when it moves, and that can hurt. They can also cause the gut to kink or twist a bit, which can narrow the opening. If food or liquid get caught behind the narrowed opening the trapped material will increase the pressure inside the gut, which hurts like heck.

Adhesions are very, very common after abdominal surgery (they occur 93% of the time). Most of them don’t cause any trouble at all. 

A capsule study is where you swallow a pill that is a camera and it takes thousands of pictures as it goes through your digestive track.  The last time I did it the results showed that there was dilation midway through my small intestine, right after where it was slow moving but the doctor I had never did anything to look into what was causing it, just prescribed mild laxatives.  When I had my hysterectomy my surgeon said they didn't see many adhesion's so they didn't believe the pain was coming from that.  Do any of you have any other symptoms besides the abdominal pain?  I get blood in my stool almost daily (sometimes I go a few days without) that usually comes along with the pain.

Amber, blood in the stool usually points to something other than adhesions as a cause, especially if the blood is associated with the pain. If the blood comes *after* the pain it could perhaps be due to straining to try to push past a partial obstruction, though.

AmberQ,  

That capsule test is interesting.  Sorry for all the problems you are having.  😕.   I’m not sure if I have adhesions or not, not really sure if anyone on here knows for sure...when I have had my most painful episodes I’m fairly certain it’s from an obstruction.  Sometimes if it goes to long I vomit. Then I’m sore for days afterwards. As far as bleeding, I agree that sounds like it could be something else.  Like Scott said, maybe from straining, or maybe hemorrhoids?  Good Luck with everything.

Scott,  Thank you for clarifying more about what adhesions can do/cause. 

Hi all,

A little update. I've been on a super duper strict low residue diet--and quite often puree my food. It's gross ad time consuming but I do feel like the episodes have been less often and less intense the past month so maybe it does help. I've even resorted to eating my sons baby food! Anyway, just thought I'd pass it along incase you want to try it. I've had 2 obstruction type episodes instead of 6 and they didn't require ER visits so I'll take it. 

duck11 posted:

Hi all,

A little update. I've been on a super duper strict low residue diet--and quite often puree my food. It's gross ad time consuming but I do feel like the episodes have been less often and less intense the past month so maybe it does help. I've even resorted to eating my sons baby food! Anyway, just thought I'd pass it along incase you want to try it. I've had 2 obstruction type episodes instead of 6 and they didn't require ER visits so I'll take it. 

I think you are on to something. I’ve been having the episodes of severe pain every 1-2 months for 10 months now. I’ve been trying to figure out what is triggering the episodes and I think it may be food related. After an episode I restrict my diet to about 1/2 of what I normally eat and I think after a month or two has gone by I’ve gradually increased my intake to a more normal amount. I also purée my vegetables and follow a low residue diet. I don’t think it’s what I’m eating so much as the volume. When I eat “too much” (which is really not that much” I think it might be causing partial obstructions. Now I’m cutting back on foods that thicken my stool and taking a 1/2 dose of MiraLax daily for a week as recommended by my doctor. This is to try to clear out any partial obstruction that may be present and to try to avoid another one. I’ve had so many doctors tell me they don’t know what is causing my pain and they don’t know what to do for me. Now my doctor is leaving his practice and I’m going through the process of finding a new one. I’m still on the journey of trying to figure out what to do and how to cope with this. Wish me luck! 

maddie18 posted:

Try taking super enzymes by Now.  Look it up online.  This product helps digest our meals.  I also avoid fiber.

I’ve been taking Better Bitters which is supposed to help your body produce more of it’s own enzymes. I haven’t noticed much of a difference though so I might try the enzyme supplement next. 

All of the symptoms that have been described are either a partial or full blockage!  I have had so many of them and have had 5 scar adhesion surgeries.  It is unfortunately a endless cycle.  If you have severe onset of pain and can not go to the bathroom that eventually leads to vomiting, it is an obstruction.  My doctor has always told me that if I go 4 hours after the vomiting starts and still not resolved to always go to ER.  I am immediately administered fluids with IV Reglin to promote bowels to move and Dilaudid for pain.  Regular xrays will not always show blockages but Cat scans usually will.   My blockages usually pass either on their own or with help at ER.   One of my surgeries was emergency to unblock them though.  Twice I have had areas of my small bowel just start closing and have had two resections.  I just had the last surgery in December.  It was a resection and adhesion removal yet again.  I am now looking in to getting Clear Passage Therapy because I have already had a major blockage since my surgery!  Ugh.  I am a very active healthy person and hate having to be set back by surgery.  One of the members on here has had the Clear Passage Therapy twice and they have had good results so far.  I am also experimenting with Intermittent fasting to let the bowel have periods of rest.  I had severe pouchitus going into my last surgery.  I had to go for quite sometime without eating before and after surgery.  They didn't do anything while I was in hospital to help my pouchitus get better.  But the Pouchitus is gone!  I think the healing is a result of fasting.  I am only eating between 11 am and 9 pm.  So it isn't really that hard.  Also increasing my water intake during the periods that I can't eat food.  I wish I had kept up with the number of blockages that I have had in the last 17 years.   I think that I am very fortunate that my GI doctor is also my GI surgeon.  He has saved my life many times now.

If anyone that sees this has looked into the Clear Passage therapy as well let me know.  It is know as the Wurn technique.  Check it out.  www.clearpassage.com

It is very interesting and they have some very significant studies that show unbelievable results.  The person that is on here that had it done was able to get her insurance company to cover it.  It is pricey.  $8000 .  It is 5 days of therapy 4 hours a day.  Also they only have 6 facilities in the US.

 

Hi Jackie--Please let us know if you do get the clear passage treatment. I've heard about it on other threads but wasn't clear if it helped long term.

For the rest of us, I just found this very helpful diet source. it's basically what i have been following, but offered graduated levels of diet depending on symptoms. 
http://www.clearpassage.com/si...ive-health-guide.pdf

I'm having another blockage this week though, so i guess it isn't perfect 

 

Haven't posted in a long time, just thought I'd throw my hat in the ring and say that I am going through something similar as well.  

First surgery was over 30 years ago when I was 14.  After s-pouch revision in 2002, Ive had approximately 6 full obstructions lasting 12-24 excruciating hours that all resolved without surgery, and a steady increase in partial obstructions (from a few per year to presently a few per month) leading me to this thread today.

I would like to give my thanks for the clear passage info.  I may consider it.  Also enzymes as someone suggested is potentially a good idea for experimentation.  I am also interested in laproscopic options but have not gone down that road yet or heard much from others about it.

In case it might resonate with anyone, I can offer my 2 cents about obstructive symotoms and antibiotics.  While they may help with pouchitis and other symptoms, I am convinced that (for me personally) antibiotics have been a contributing factor to adhesion related obstruction.   Before giving them up 4 years ago, I'd taken them on and off for decades, and slowly was able to deduce a correlation.  If your # of bm's are reduced on antibiotics, then it just may be for someone with adhesions, the likelihood of obstruction may increase without enough bacteria in there doing what they do.  I am only speaking from my personal experience and what I believe to be true for myself. Obviously these things are very subjective, but it feels worth sharing anecdotally because there's very likely never been any studies on this, and your GI is likely to never  consider the possibility when prescribing (I could be wrong though, just my impression).

I am single and live alone and work full time.   I just keep adapting as best I can.  I can't eat normal sized meals any more without paying for it and try my best to restrict meal size.  Very difficult if you have done something taxing or athletic and your body is telling you to eat.  Just gotta do whatever it takes.  I'm also a big proponent of the low fodmap diet. 

Lately I've been having having chronic mild to moderate pain mid-abdomen and mild partial obstructive symptoms lasting for two continuous weeks.  This is new to me.  I'm worried it may become more serious in terms of obstruction, but for now, holding steady and hoping I can deal with it.

After many surgeries, procedures, exams, and consultations, I've learned that simple mindfulness (paying attention to my body) has probably been the most effective form of treatment available to me.  Obviously that's only going to get you so far and sometimes/ultimately it's out of our hands. I would never wait too long to seek medical help or emergency medicine when it is needed.  

Stay strong everybody!  Wishing you peace when you need it most!  And how 'bout a nice long run of good luck?  I think we deserve one of those too!

b_logan posted:

Haven't posted in a long time, just thought I'd throw my hat in the ring and say that I am going through something similar as well.  

First surgery was over 30 years ago when I was 14.  After s-pouch revision in 2002, Ive had approximately 6 full obstructions lasting 12-24 excruciating hours that all resolved without surgery, and a steady increase in partial obstructions (from a few per year to presently a few per month) leading me to this thread today.

I would like to give my thanks for the clear passage info.  I may consider it.  Also enzymes as someone suggested is potentially a good idea for experimentation.  I am also interested in laproscopic options but have not gone down that road yet or heard much from others about it.

In case it might resonate with anyone, I can offer my 2 cents about obstructive symotoms and antibiotics.  While they may help with pouchitis and other symptoms, I am convinced that (for me personally) antibiotics have been a contributing factor to adhesion related obstruction.   Before giving them up 4 years ago, I'd taken them on and off for decades, and slowly was able to deduce a correlation.  If your # of bm's are reduced on antibiotics, then it just may be for someone with adhesions, the likelihood of obstruction may increase without enough bacteria in there doing what they do.  I am only speaking from my personal experience and what I believe to be true for myself. Obviously these things are very subjective, but it feels worth sharing anecdotally because there's very likely never been any studies on this, and your GI is likely to never  consider the possibility when prescribing (I could be wrong though, just my impression).

I am single and live alone and work full time.   I just keep adapting as best I can.  I can't eat normal sized meals any more without paying for it and try my best to restrict meal size.  Very difficult if you have done something taxing or athletic and your body is telling you to eat.  Just gotta do whatever it takes.  I'm also a big proponent of the low fodmap diet. 

Lately I've been having having chronic mild to moderate pain mid-abdomen and mild partial obstructive symptoms lasting for two continuous weeks.  This is new to me.  I'm worried it may become more serious in terms of obstruction, but for now, holding steady and hoping I can deal with it.

After many surgeries, procedures, exams, and consultations, I've learned that simple mindfulness (paying attention to my body) has probably been the most effective form of treatment available to me.  Obviously that's only going to get you so far and sometimes/ultimately it's out of our hands. I would never wait too long to seek medical help or emergency medicine when it is needed.  

Stay strong everybody!  Wishing you peace when you need it most!  And how 'bout a nice long run of good luck?  I think we deserve one of those too!

Thank you for sharing! I’m sorry to hear that you have been dealing with this for so long! Your attitude is encouraging though. I agree that listening to our bodies is one of the best things we can do. I’ve been dealing with this for about a year now and so far doctors haven’t really been able to help me much. Limiting my food intake is the only thing that seems to help. Like you said, it’s not ideal, but I don’t want to be in pain either. I hope your situation gets better. Stay strong! 

b_logan posted:

Haven't posted in a long time, just thought I'd throw my hat in the ring and say that I am going through something similar as well.  

First surgery was over 30 years ago when I was 14.  After s-pouch revision in 2002, Ive had approximately 6 full obstructions lasting 12-24 excruciating hours that all resolved without surgery, and a steady increase in partial obstructions (from a few per year to presently a few per month) leading me to this thread today.

I would like to give my thanks for the clear passage info.  I may consider it.  Also enzymes as someone suggested is potentially a good idea for experimentation.  I am also interested in laproscopic options but have not gone down that road yet or heard much from others about it.

In case it might resonate with anyone, I can offer my 2 cents about obstructive symotoms and antibiotics.  While they may help with pouchitis and other symptoms, I am convinced that (for me personally) antibiotics have been a contributing factor to adhesion related obstruction.   Before giving them up 4 years ago, I'd taken them on and off for decades, and slowly was able to deduce a correlation.  If your # of bm's are reduced on antibiotics, then it just may be for someone with adhesions, the likelihood of obstruction may increase without enough bacteria in there doing what they do.  I am only speaking from my personal experience and what I believe to be true for myself. Obviously these things are very subjective, but it feels worth sharing anecdotally because there's very likely never been any studies on this, and your GI is likely to never  consider the possibility when prescribing (I could be wrong though, just my impression).

I am single and live alone and work full time.   I just keep adapting as best I can.  I can't eat normal sized meals any more without paying for it and try my best to restrict meal size.  Very difficult if you have done something taxing or athletic and your body is telling you to eat.  Just gotta do whatever it takes.  I'm also a big proponent of the low fodmap diet. 

Lately I've been having having chronic mild to moderate pain mid-abdomen and mild partial obstructive symptoms lasting for two continuous weeks.  This is new to me.  I'm worried it may become more serious in terms of obstruction, but for now, holding steady and hoping I can deal with it.

After many surgeries, procedures, exams, and consultations, I've learned that simple mindfulness (paying attention to my body) has probably been the most effective form of treatment available to me.  Obviously that's only going to get you so far and sometimes/ultimately it's out of our hands. I would never wait too long to seek medical help or emergency medicine when it is needed.  

Stay strong everybody!  Wishing you peace when you need it most!  And how 'bout a nice long run of good luck?  I think we deserve one of those too!

I have been through the same things. I find that when I eat meals and I'm feeling of struct it because I forgot to take a super enzyme if I take the enzyme I end up going to the washroom and I feel a great relief. Please try the enzymes with your meals and you'll find a big difference. I never put two and two together but yes the antibiotic condition that comes about with taking antibiotics seems to be a good diagnosis. From now on I will try to avoid antibiotics at all costs that makes a lot of sense.

Thanks for sharing that. Let me know how the enzymes help you. I can guarantee that you'll get great relief.

I wish I had known this years ago. I've been suffering with obstructions one almost killed me about 30 years ago I only had an hour to go my bowel was completed blocked.

SJAN810 posted:
b_logan posted:

Haven't posted in a long time, just thought I'd throw my hat in the ring and say that I am going through something similar as well.  

First surgery was over 30 years ago when I was 14.  After s-pouch revision in 2002, Ive had approximately 6 full obstructions lasting 12-24 excruciating hours that all resolved without surgery, and a steady increase in partial obstructions (from a few per year to presently a few per month) leading me to this thread today.

I would like to give my thanks for the clear passage info.  I may consider it.  Also enzymes as someone suggested is potentially a good idea for experimentation.  I am also interested in laproscopic options but have not gone down that road yet or heard much from others about it.

In case it might resonate with anyone, I can offer my 2 cents about obstructive symotoms and antibiotics.  While they may help with pouchitis and other symptoms, I am convinced that (for me personally) antibiotics have been a contributing factor to adhesion related obstruction.   Before giving them up 4 years ago, I'd taken them on and off for decades, and slowly was able to deduce a correlation.  If your # of bm's are reduced on antibiotics, then it just may be for someone with adhesions, the likelihood of obstruction may increase without enough bacteria in there doing what they do.  I am only speaking from my personal experience and what I believe to be true for myself. Obviously these things are very subjective, but it feels worth sharing anecdotally because there's very likely never been any studies on this, and your GI is likely to never  consider the possibility when prescribing (I could be wrong though, just my impression).

I am single and live alone and work full time.   I just keep adapting as best I can.  I can't eat normal sized meals any more without paying for it and try my best to restrict meal size.  Very difficult if you have done something taxing or athletic and your body is telling you to eat.  Just gotta do whatever it takes.  I'm also a big proponent of the low fodmap diet. 

Lately I've been having having chronic mild to moderate pain mid-abdomen and mild partial obstructive symptoms lasting for two continuous weeks.  This is new to me.  I'm worried it may become more serious in terms of obstruction, but for now, holding steady and hoping I can deal with it.

After many surgeries, procedures, exams, and consultations, I've learned that simple mindfulness (paying attention to my body) has probably been the most effective form of treatment available to me.  Obviously that's only going to get you so far and sometimes/ultimately it's out of our hands. I would never wait too long to seek medical help or emergency medicine when it is needed.  

Stay strong everybody!  Wishing you peace when you need it most!  And how 'bout a nice long run of good luck?  I think we deserve one of those too!

Thank you for sharing! I’m sorry to hear that you have been dealing with this for so long! Your attitude is encouraging though. I agree that listening to our bodies is one of the best things we can do. I’ve been dealing with this for about a year now and so far doctors haven’t really been able to help me much. Limiting my food intake is the only thing that seems to help. Like you said, it’s not ideal, but I don’t want to be in pain either. I hope your situation gets better. Stay strong! 

Doctors would never suggest super enzymes. I actually went to an osteopath for Clear passage therapy, where she manipulates my bowels and tries to separate adhesions and scarring. That helped for a little while, it did actually also clear one small blockage that I was having but in the long-term it doesn't help. You would have to do that on a regular basis and that can get very expensive. She was the one that recommended super enzymes and I'm grateful for that, extremely grateful please everyone, try them!

I am having the Clear Passage Therapy at the Gainsville, Fl location starting May 27th.  I will try to keep you guys updated.   The real Clear Passage Therapy can only be done at one of the official Clear Passage Clinics.  The therapist have special training specifically for adhesion therapy.  One of you mentioned that you went to an Osteopath for this treatment.  Unless it was done at one of their facilities it was not the true Clear Passage Therapy.  They also train you while you are there to do maintenance Therapy on your own.  I am hoping that his will be my miracle.  I am so tired of the blockages and the surgeries.    

I know I won't know immediately if it works but have talked to a couple of patients that said the way their bowels moved  after therapy was immediately better.  Only time will tell if it will keep me from more blockages and surgery!

I talked to my surgeon about the Super digestive Enzymes when I went to get his okay for the therapy and he wanted me to only do one thing at a time.

 

 

 

maddie18 posted:

Does anyone think cheddar cheese can cause obstructions.  I've heard cheese is the hardest food to digest.

I generally avoid dairy because it makes me feel sick if I eat too much of it but this would be another good reason to avoid cheese. I think if you have a tiny bit once in a while it might be okay but eating a lot of cheese could probably cause a problem. When I first had my j-pouch surgery I was told to eat “thickening” foods so that my BMs would be thicker and not so watery. Now I’ve been told to limit my intake of those foods (things like bread, pasta, rice, peanut butter, applesauce). It seems to help to eat less of those foods and to eat less food overall so that I don’t get overly full. It means that most of my BMs are liquid or mush but that seems to make it easier for everything to pass through without getting stuck. 

I have experienced several severe intestinal blockages as a result of a lot of post-surgical adhesions, after two colorectal cancer surgeries, in 2015 and for construction of a j-pouch in 2016, (both major abdominal resections, big zippers). Anything to avoid this horror! ....  I now take super full-spectrum digestive enzymes every day, three capsules at each meal. And drink lots of water. (I have read that so-called 'pyrolytic' enzymes might help to reduce adhesions over time. Trying them, too.) Triggers include extreme stress. Food triggers: accidentally eating even a tiny amount of palm oil puts me in hospital every time!!!! ... very bad (in almost all prepared foods, so I read the labels EVERY time that I buy anything, and no restaurant meals any more, either).  Also eating too much fresh vegetables or fruit at one time, including peppers, apples or broccoli. (Well-cooked, and small amounts is okay, well-chewed. No heavy fibre, either.) Small meals, no matter how hungry. .... Each episode, searingly painful abdominal cramps beginning in two locations (CT scan showed large adhesions wrapped around small intestines), rapidly getting worse, and unrelenting, violent vomiting. At the hospital, given large amounts of natural morphine sulphate for pain, and large amounts of Gravol-type anti-emetic to relieve vomiting. Each time, hospitalized for 3-5 days to rest bowel, nasal-gastro tube to continuously remove stomach secretions (otherwise, unbelievable vomiting, torn stomach lining). I have managed to stave off four more severe episodes (thank god) by walking around for hours, deep and very slow (mindful) breathing, while slowly sucking on 90 mg of children's chewable Gravol, as SOON as symptoms start, and taking 15 mg of morphine sulphate for pain. (Prescription, I keep a small amount handy.) Definitely a horrible thing to experience. (I am very lucky to receive compassionate care when I show up at emergency with my 'puke bucket'. Too sick to drive, barely able to get dressed. Grateful for a ride.) Sure hope some of this helps.

maddie18 posted:

Do any of my fellow j pouches think coffee or espresso affects us in a bad way?

I think it can, especially if it’s caffeinated. Personally, caffeine makes me feel shaky and nauseous so I generally avoid it. Several years ago, before my surgeries, I saw a nutritionist and she said caffeine has an effect that is basically like putting your intestines on a treadmill and overworking them so it can trigger IBD & IBS symptoms. Knowing that, I assume it could trigger symptoms for people with j-pouches too. I also remember my surgeon saying coffee is one of the foods that can trigger symptoms for people with j-pouches...this was a few years ago and I don’t remember exactly what he was referring to but I think we were talking about skin irritation from having lots of watery BMs. 

Every time I check this thread I am so disheartened how many of us have this problem. It’s a huge quality of life side effect on f the surgery that no one warned me about. I would have needed the surgery anyway, but it would just have been nice to know my healthy days were numbered. 

Related to the coffee discussion, I wonder this to. I’ve been trying to figure out why I suddenly have this obstruction problem after 20 years of good health and the only major change was the arrival of my son (he was adopted so no physical changes from that) and with it, a huge increase in coffee consumption! I wonder if it messes with our electrolytes enough to cause issues in bowel contractions, or stool consistency, or other things. Might be worth cutting out (but oh so hard with a 10 month old who is not a good sleeper yet...!) Anyone tried no caffeine? I got the enzymes maddie mentioned-I’ll let u know how they work for me.

Interestingly enough, I gave up coffee 7 years ago and only reintroduced it 3 months ago... And while I've had obstructions that have been very acute and severe during that time (aporox one per year), the symptoms I've been having recently have been different... they're almost constantly with me and partially obstructive and hurt.  Since posting here a week ago, I've given coffee up again and am possibly starting to turn the corner. At least I hope so.  We'll see    It takes months to years to figure out if one particular thing you are doing bears a greater responsibility than another thing you may be doing or simply have going on.  When I gave coffee up originally it was for the usual reasons... It exasperated any digestive discomfort or indigestion of which I had plenty.  After getting my diet in order, and avoiding antibiotics for years, I thought I could handle it.  Either my adhedions have worsened or it's coffee or possibly both.  I'm back to green tea for the foreseeable future.  I drink Japanese sencha. Avoid herbal like the plague.  The Japanese steam their leaves to cure them whereas most other tea leaves are roasted.  Less bitter more 'umami.'  I get it from an outfit in Japan called O-Cha.  Takes a while to get a system down with brewing it, you really need a japanese teapot, but great stuff.  The caffeine takes more liquid volume and longer in time to build up in your system, but it's much more even than coffee   Less highs/lows.

Ps.  They key to replacing coffee with tea, especially drinking sencha, is to get a hot water heater with an adjutable temperature gauge.  You want to use water that is not boiling hot!  Many workplace water coolers have hot on demand, that temp is on the cool end but works great.  I never use the hot water attached to coffee brewers, that temp is almost 200 degres F, way too hot... in terms of bitterness and drinkability makes a big difference. Could I make it any more obvious that I'm a fan of green tea?  

To the OP:

Yes!  I had the most horrific pain where my stoma was and now I have a hernia.  As for the pain, it was due to adhesions or scar tissue.  It caused ascites and I had 1100cc of fluid sucked out of me.  It came back and the pain continued, so my surgeon cut me open and fixed me up.  He inserted a mesh.  So far so good.  

I will have another surgery next month to fix the hernia.  And another mesh.  It feels like a never ending battle.  Unfortunately, I still feel a lot of pain when not taking meds.  The only meds that really address it is Suboxone.  Better than regular pain meds.  Except it is now more of a dull, throbbing pain vs sharp pain that feels like shards of glass.

I don't know of other options other than surgery.  Good luck.

ADHESIONS. The more I learn about them more I hate them. I have a jpouch. Keep having reoccurring bowel obstructions with hospitalizations requiring dilaudid, n/ g tube, I.V.s and medicine for vomiting.  I go to Johns Hopkins in Baltimore. The blockages usually resolve in 4 days.  I have had 2 surgeries for lysis of adhesions with only fair results. After one surgery I was free of blockages for approx. 4 years but after the second surgery I was only free of the hospitalizations for approx. 7 months. Has anyone had sucess having release of structions? Who is doing most of the problem surgery now at Cleveland Clinic? I feel so trapped with no options other than to wait for the next obstruction. My doctor does not feel diet and exercise contribute to the bowel obstructions. 

 

  

 

 

 

Cleveland Clinic is why I'm in this position.  I hate those @@%*! The colorectal surgeon blatantly lied to me and said she could do laparoscopic.  She never disclosed the success rate was only 10% and that I'd most likely need a laparotomy.  Sold us a false bill of goods. I would have never agreed to being cut open again.  The entire experience was nightmarish including the hospital stay.

On another note, I also have endometriosis and, according to the tactless doctor on the Cleveland Clinic surgical team, a uterus the size of a grapefruit that calls for a hysterectomy.  I wonder if it is contributing to my pain.

As for solutions, I had lysis of adhesions and the surgery was done by Dr Phillip Fleshner.  However, he is in Los Angeles.  He is highly regarded and a rock star in the OR.  If you have options, I'd consider seeing him.  

As for day to day solutions, there is a Chinese herbal tea that aids in digestion.  It is known as red tea or Pu-Erh.  It breaks down all the food in one's stomach.  My son even remarked how well it worked.  It's worth a try.  I use loose leaf.

I also use a portable Shiatsu massager you can buy off Amazon.  I swear by heat therapy and massage.  I place it under my lower back and it alleviates pain.  Especially for menstrual cramps and post surgery.

This thread is helpful.  It sounds just like my experience.

I have had my j pouch for 19 years now, with no problems with it till last week.

That's when the abdominal pains, then later vomiting, started.  It got better until Thursday, when the painful cramps started again.  That was a holiday, with family and food, and events, so I just powered through, not wanting to upset everyone, and figuring it would go away.  That night was so painful, I decided to call my DR. the next morning.

Office was closed for the Holiday weekend, so I went to a walk- in urgent care.  They took blood and did an x ray, which showed either "fluid filled bowel loops" or a "mass" in my abdomen. They said to go to the ER for a scan to determine what the "mass" is.  

In the ER, I had to get an IV and more blood drawn.  (By the way-is finding a vein as terribly difficult for everyone here as it is for me?  Mine have still not recovered from all of the needles involved with my original hospitalizations.)  

My CT shows no blockages.  There are some adhesions, but not in the area of where my pain is. So the ER doctor basically tells me I'm just constipated, I need more fiber, and suggests a laxative.  She sends me home with a prescription for Bentyl, to calm the cramps.  Now I feel silly explaining to waiting family members that I caused all of this drama over constipation.

That night I was even worse, vomiting horribly, and not able to "go".   Stomach swollen and tender.  

Finally, yesterday morning, I was able to "go" -  what a relief!  And it was not at all firm, not what I would expect if this were just constipation.   In fact it was very fluid.  Something was clearly blocking the path, because once it cleared, I was cleaned out very quickly.  This is gross, but I lost 5 lbs between the day before yesterday and yesterday.

I am going to see a different Colon/Rectal surgeon, as mine is now retired.  I'll see what he says,  but I'm really worried that this may occur again.  I haven't started eating normally yet.

I just can't figure out why all of a sudden after 19 years, this is happening now.  

 

 

DisneyMom posted:

This thread is helpful.  It sounds just like my experience.

I have had my j pouch for 19 years now, with no problems with it till last week.

That's when the abdominal pains, then later vomiting, started.  It got better until Thursday, when the painful cramps started again.  That was a holiday, with family and food, and events, so I just powered through, not wanting to upset everyone, and figuring it would go away.  That night was so painful, I decided to call my DR. the next morning.

Office was closed for the Holiday weekend, so I went to a walk- in urgent care.  They took blood and did an x ray, which showed either "fluid filled bowel loops" or a "mass" in my abdomen. They said to go to the ER for a scan to determine what the "mass" is.  

In the ER, I had to get an IV and more blood drawn.  (By the way-is finding a vein as terribly difficult for everyone here as it is for me?  Mine have still not recovered from all of the needles involved with my original hospitalizations.)  

My CT shows no blockages.  There are some adhesions, but not in the area of where my pain is. So the ER doctor basically tells me I'm just constipated, I need more fiber, and suggests a laxative.  She sends me home with a prescription for Bentyl, to calm the cramps.  Now I feel silly explaining to waiting family members that I caused all of this drama over constipation.

That night I was even worse, vomiting horribly, and not able to "go".   Stomach swollen and tender.  

Finally, yesterday morning, I was able to "go" -  what a relief!  And it was not at all firm, not what I would expect if this were just constipation.   In fact it was very fluid.  Something was clearly blocking the path, because once it cleared, I was cleaned out very quickly.  This is gross, but I lost 5 lbs between the day before yesterday and yesterday.

I am going to see a different Colon/Rectal surgeon, as mine is now retired.  I'll see what he says,  but I'm really worried that this may occur again.  I haven't started eating normally yet.

I just can't figure out why all of a sudden after 19 years, this is happening now.  

 

 

Sorry to hear you are dealing with this too! It sounds similar to what I’ve experienced. I have to wonder too what would cause this after you have had your pouch for so long. My pain started after 2 years which seemed like a while but after 19 years I can imagine it would seem very random and strange. Keep us posted, I’m really interested to hear if your doctors figure out exactly what is going on! I hope they do! I hope you feel better and don’t have any more pain. 

Hi Disney mom--mine started after exactly 19 years too-must be a jinxed number! I hope you only have one episode and they go away which can happen--these are awful to live with. I'm still kind of bitter and trying to process mentally having to live in chronic intestinal pain--I thought that once my colitis was cured by this surgery way back when,  those days would be done  Anyway, my surgeon said it isn't unheard of for blockages to start decades after surgery--something about adhesions getting stronger over time and/or our bodies slightly shifting with age. She also said many adhesion problems don't show up--even on CT's. It's frustrating because I don't think this is something regular, unspecialized doctors know (i.e. ER doctors). Every ER dr. I've seen says "oh you're fine" (despite being doubled over in pain and puking) and 1 hour later the surgeons come in and say "no, she has a blockage". It gets old having to keep proving this to ER physicians.  Please keep us updated on how things go, and good luck. 

I feel like eating smaller meals and intermittent fasting is the only thing keeping me going.  Given normal life demands and the hidden nature of what we have going on, we're expected to behave and work like we have a normal body, but if I eat like a normal person needs to, on a normal person's schedule, my body just can't handle it.  I eat more when I actually have down time.   After any vigorous activity or exercise, I also need to be very careful and wait for things to "wake up." 

I swear, it's almost like after 30years of pouch, my small intestines all the way up to my stomach are taking on properties of the large.  It's as if they've learned to hold waste like a large intestine because I need them too!  It also means constipation can be a serious problem and lead to the ER.

After a pouchoscopy, the surgeon has determined that I have a narrowing right where the small intestines attach to the pouch.  They are doing a biopsy of that, and will treat with steroids if inflamed.  If/when no inflammation is present, he will go back in with a balloon to dilate.  I don't know if I have all the terms correct, 

 If this goes as smoothly as he makes it sound- great.   At least it sounds more promising than the cycle of adhesions and surgeries that is possible.  Of course this could be its own cycle - we will see.  

I actually feel good right now- yesterday was the first day I've felt like myself in almost two weeks.

duck11 posted:

Hi Disney mom--mine started after exactly 19 years too-must be a jinxed number! I hope you only have one episode and they go away which can happen--these are awful to live with. I'm still kind of bitter and trying to process mentally having to live in chronic intestinal pain--I thought that once my colitis was cured by this surgery way back when,  those days would be done  Anyway, my surgeon said it isn't unheard of for blockages to start decades after surgery--something about adhesions getting stronger over time and/or our bodies slightly shifting with age. She also said many adhesion problems don't show up--even on CT's. It's frustrating because I don't think this is something regular, unspecialized doctors know (i.e. ER doctors). Every ER dr. I've seen says "oh you're fine" (despite being doubled over in pain and puking) and 1 hour later the surgeons come in and say "no, she has a blockage". It gets old having to keep proving this to ER physicians.  Please keep us updated on how things go, and good luck. 

Duck- I would fear that the ER Docs think I'm just looking for pain meds, and am faking this horrible pain, when they see "nothing" on the scan.  I understand, I'm sure they have to watch out for that.   But really we all want answers and solutions.  The last thing I want is to be back on piles of drugs to treat symptoms.  I had my j pouch surgery to crawl out of my medication "haze" and don't want to go back there! 

Thanks and I wish you no more problems!

SJAN810 posted

 

 

Sorry to hear you are dealing with this too! It sounds similar to what I’ve experienced. I have to wonder too what would cause this after you have had your pouch for so long. My pain started after 2 years which seemed like a while but after 19 years I can imagine it would seem very random and strange. Keep us posted, I’m really interested to hear if your doctors figure out exactly what is going on! I hope they do! I hope you feel better and don’t have any more pain. 

Thank you- you too!

 

 

Disney mom

It sounds like your surgeon has a good idea to try to stretch the area where you seem to get blockages. My G.I. ,not the surgeon,,thought that that my blockages could be opened up at the time of the  blockage  by using a scope like a scope used during pouchscopes No one has been willing to  try this.

My Emergency visits always seem to happen late at night and I am never seen by a GI or surgeon just the ER doctor and usually just a nurse practitioner. My CT scans always seem to show the problem area is at the anastomosis (or where the small bowel joins the pouch. ) It sounds like that is where you have your blockages. If this procedure  would work for you it would be so much better than the n/g tube etc. and certainly better than the problems associated with surgery. My j pouch was done in 1998 and I have had approx 20 hospitalizations for blockages and 2 laproscopy surgeries. I hope you have success with this treatment. Would you mind sharing the name of this doctor or the state where he works. Hopefully someone will come up with better treatments for bowel obstructions than they have now. GOOD LUCK and please post what I hope is good news

 

MARJI

 

 

 

Marj posted:

Disney mom

It sounds like your surgeon has a good idea to try to stretch the area where you seem to get blockages. My G.I. ,not the surgeon,,thought that that my blockages could be opened up at the time of the  blockage  by using a scope like a scope used during pouchscopes No one has been willing to  try this.

My Emergency visits always seem to happen late at night and I am never seen by a GI or surgeon just the ER doctor and usually just a nurse practitioner. My CT scans always seem to show the problem area is at the anastomosis (or where the small bowel joins the pouch. ) It sounds like that is where you have your blockages. If this procedure  would work for you it would be so much better than the n/g tube etc. and certainly better than the problems associated with surgery. My j pouch was done in 1998 and I have had approx 20 hospitalizations for blockages and 2 laproscopy surgeries. I hope you have success with this treatment. Would you mind sharing the name of this doctor or the state where he works. Hopefully someone will come up with better treatments for bowel obstructions than they have now. GOOD LUCK and please post what I hope is good news

 

MARJI

 

 

 

Marj, I hope your Dr is able to figure out what could work for you.  The surgeon who did this pouchoscopy said he could not get the scope through the narrow portion so I guess mine could not be stretched that way, but maybe the balloon would work?  I guess we will see and I will report back. 

I am in the Richmond, VA area, and I go to Colon Rectal Specialists.  The Dr. who did my recent scope is Dr. Charron.  He seems very good, as far as I can tell, having just met him. My original surgeon who did my pouch in 2000 was Dr. Sean O’Donavan and he was great, but he has retired.  

 

Disney mom

Thanks for getting back with the information .  I have been receiving my care from the Johns Hopkins surgeons but I plan to go to New York in. August to See Dr. F. Remzi at N Y U. I had differring opinions about whether to do surgery or not  from the Hopkins doctors and I want to see what another doctor  thinks.  In the meantime the Hopkins surgeons have ordered a barium enema to see if the pouch has any leaks etc. I will post again after both.

I've also had many obstructions. They are truly the worst. About 6 years ago I started taking an enzyme called serrapeptase and it absolutely helped dissolve the scar tissue around my anastomosis.  I could actually feel the knots within the scar and today it's completely soft.  I only took the enzymes for 6 months or less. I used Doctor's Best brand. And I've not had an obstruction since.  I do still have a stricture at the site so I sometimes still have some discomfort and distention but not 1 obstruction. 

Here's an article:

https://blog.bulletproof.com/s...ase-benefits-dosage/

Or just google serrapeptase for adhesions.

I was also doing the SCD diet along with the serrapeptase which I think may have helped as well.  But if you suffer from obstructions, it's worth a try for $20 or so.  I'm not sure if this has been mentioned before as I have not read the entire thread!

I tried them not really sure if they would work or not. I thought the most I have to lose is $20 but if they do work, I have a lot to gain.  Again this has been my experience, I don't know if it works for everyone.

Docs will almost never recommend this stuff because supplements are not studied or FDA approved like medications. 

I have successfully used full-spectrum enzymes to help reduce the pain and intestinal blockages from adhesions, following two abdominal surgeries for colorectal cancer and construction of a j-pouch. And I have far less pain and fewer hospital visits for blockages... (fingers crossed!). I take them with every meal. I use ones containing pancreatin, protease, amylase, lipase, ox bile, papain, and betain hydrochloride. Two brands I like are New Roots and Enzyme Force. And they are reasonably priced, worth a try. (I find that even small amounts of serrapeptase makes me nauseated. Guts easily upset these days. But it is recommended for adhesions.)

HI all,

I've been waiting months to go see a third surgeon on the other side of the country for another opinion. I'll let you know if anything comes of it that might be helpful to all of us with adhesion/obstruction problems. One of the tests she is doing is called CT enteroclysis (not CT enterography, which I have had.) Anyone had this before? Curious what it might show differently than the others I've had. This clinic is in Toronto and is suppose to be a leader in J pouch surgeries and IBD research/treatment, hoping perhaps they have new ideas to help.

 

Cheers.

It’s been about a year since my first experience with severe abdominal pain which seems to be from partial obstructions related to adhesions. It has been two months since the last time it happened and I am hopeful that I’m moving in a positive direction. I’ve changed my diet and am eating less carbs, more smoothies & puréed vegetables. I’m taking Benefiber twice a day. I’m taking digestive enzymes with most meals. I’m taking a 1/4 dose of MiraLax 3 times a day. I started going to a different hospital for gastroenterology care last month and I am hopeful that they will be able to help me going forward. I am also starting physical therapy for abdominal adhesions and abdominal massage this week. I’m trying so many different things, it feels like a full time job staying on top of it all. I really hope I am on the right track so that the severe pain I’ve experienced will not happen again or at least be a very rare occurrence. Wish me luck! 

Jackie,

I am going to a local physical therapist that is part of  the IRG group (www.irgpt.com). I went to my insurance company’s website & called the closest PT places until I found one that sounded confident that they could help. My first appointment is today, hopefully it goes well! I also had my first abdominal massage this week and it went well so hopefully that will help too. 

I went to Gainsville in May and had the Physical Therapy with the Clear Passage clinic.  I would love to find some place to help me maintain all that they did for me.  Clear Passage is the Larry Wurn technique.  I did therapy for a week there 4 hours a day.  I think it helped but can't go to Gainsville frequently.  They only have about 8 clinics in the US.

An unusual thing to try, perhaps, an off label use for Children's Gravol. When severe cramping heralding a partial intestinal blockage begins (lots of adhesions around small bowel), I immediately start taking children's 15 mg chewable Gravol (dramamine), which I carry in my purse. I start with three, let them dissolve in my mouth (45 mg). If cramps continue, I take up to 90 mg (6 pills). Sometimes, it seems to noticeably relax the rippling blockage spasm. To ease the cramping, I always stand up and walk right away, for a couple of hours, if necessary. (sitting or lying down makes things much worse and more likely to progress to vomiting, I find). And I do slow breathing, in and out, consciously using the diaphragm. I have managed to head off what looked to be yet another hospitalization and dreaded NG. (But if the severe vomiting starts, even with this protocol, I know that I have to go and get help in emergency) .... worth a try, perhaps.

I had bowel obstructions begin just shy of two years post-reconnect. Was told at the time if I got past two years, I should be home free. I suffered through it for about two years before taking the strong advice to have the adhesions removed. My original surgeries were at Mount Sinai NY. Adhesions were removed at Johns Hopkins about 25 years ago with no obstructions since. I do have a lot of scar tissue and adhesions still, as is typical with abdominal surgery, but nothing that interfers with bowel function.

Sjan810

Hi, I know it was as months ago you first posted about abdo pain/ adhesions. However I am currently going through a very similar experience and would value an update from you- how are you doing now, did you get a definitive diagnosis, have you had successful treatment? 

Ive suffered from chronic adhesion pain for over 12 yrs (colectomy 17 yrs ago) in June this year I suddenly developed acute, agonising lower abdomens pain requiring hospital inpatient treatment for pain. All blood work was normal, as was X-ray and CT scan. I was discharged after 5 days as pain had decreased.

then 3 weeks ago the same thing happened- I went to work in the morning- still don’t know how I managed (I do office work though so not strenuous) I had a GP appointment at noon, my GP took my vitals and found blood pressure very low and temperature slightly high.given my history she called our local hospital who advised I should visit them. This time I was hospitalised for 9 days.had I out from the pain team who put me on a Ketamine infusion as my normal OxyContin and morphine were not helping. I pushed to try oral Ketamine so I could return home, this was sanctioned however I cannot as only given 1 weeks worth as apparently prolonged use can cause serious bladder issues. So now I’m at home, taking quadruple the dosage of usual pain meds (OxyContin modified release and immediate release) Buscopan. I can barely function and am stuck in house as cannot drive or work. I’m waiting on an “urgent” appointment to see pain specialist. I’m in the UK so at the mercy of NHS waiting lists. However every single member of nursing staff/ doctors have been wonderful.

The “diagnosis “ if you call it that is acute adhesion also pain, nerve pain/ damage/ pelvic prolapse (although CT was normal) all bloods within normal values also) this makes me feel like it’s “ all in my head”” although 1 of the hospital doctors was quick to point out that if it was as psychosomatic I wouldn’t be able to converse so clearly with him while on such a high dose of OxyContin and Ketamine- he said I was remarkable for still being “compose mentos” despite the dose I was given. I’m at my wits end. Hoping against hope that someone else in this fabulous community can reach out to me with possible answers.

apologies for rambling on, it’s 2.20am and I cannot sleep - Ive been searching the web in and off for days looking for answers.

wishing everyone on this forum the very best and hopefully we all get the answers/ help we require/ desire. 

Much love and very best wishes xxx

SJAN810 posted:

Jackie,

I am going to a local physical therapist that is part of  the IRG group (www.irgpt.com). I went to my insurance company’s website & called the closest PT places until I found one that sounded confident that they could help. My first appointment is today, hopefully it goes well! I also had my first abdominal massage this week and it went well so hopefully that will help too. 

Hey I was wondering how your therapy is going?  If still doing it is it working and what type of training does your therapist have.  I am trying to find a therapist close to me and don't really know what to look for!

Wee sylv posted:

Sjan810

Hi, I know it was as months ago you first posted about abdo pain/ adhesions. However I am currently going through a very similar experience and would value an update from you- how are you doing now, did you get a definitive diagnosis, have you had successful treatment? 

Ive suffered from chronic adhesion pain for over 12 yrs (colectomy 17 yrs ago) in June this year I suddenly developed acute, agonising lower abdomens pain requiring hospital inpatient treatment for pain. All blood work was normal, as was X-ray and CT scan. I was discharged after 5 days as pain had decreased.

then 3 weeks ago the same thing happened- I went to work in the morning- still don’t know how I managed (I do office work though so not strenuous) I had a GP appointment at noon, my GP took my vitals and found blood pressure very low and temperature slightly high.given my history she called our local hospital who advised I should visit them. This time I was hospitalised for 9 days.had I out from the pain team who put me on a Ketamine infusion as my normal OxyContin and morphine were not helping. I pushed to try oral Ketamine so I could return home, this was sanctioned however I cannot as only given 1 weeks worth as apparently prolonged use can cause serious bladder issues. So now I’m at home, taking quadruple the dosage of usual pain meds (OxyContin modified release and immediate release) Buscopan. I can barely function and am stuck in house as cannot drive or work. I’m waiting on an “urgent” appointment to see pain specialist. I’m in the UK so at the mercy of NHS waiting lists. However every single member of nursing staff/ doctors have been wonderful.

The “diagnosis “ if you call it that is acute adhesion also pain, nerve pain/ damage/ pelvic prolapse (although CT was normal) all bloods within normal values also) this makes me feel like it’s “ all in my head”” although 1 of the hospital doctors was quick to point out that if it was as psychosomatic I wouldn’t be able to converse so clearly with him while on such a high dose of OxyContin and Ketamine- he said I was remarkable for still being “compose mentos” despite the dose I was given. I’m at my wits end. Hoping against hope that someone else in this fabulous community can reach out to me with possible answers.

apologies for rambling on, it’s 2.20am and I cannot sleep - Ive been searching the web in and off for days looking for answers.

wishing everyone on this forum the very best and hopefully we all get the answers/ help we require/ desire. 

Much love and very best wishes xxx

It sounds like you need to have adhesion removal surgery.  I do believe that physical therapy like they do at clear passage makes a huge difference as well.  I had my last adhesion surgery in December of last year and then in May had the Clear Passage therapy done.  I was taught how to do some of the therapy on myself and try to do it often to keep the adhesions from causing problems and keeping them loosened up...if that makes sense.    I am currently trying to find a physical therapist closer to me that does internal scar tissue therapy because it does really help.  Do some research on it and talk to your doctors about considering prescribing this therapy for you.  Good luck and I hope you get some relief soon.   Blockages are miserable and scary and so very painful.  I wouldn't wish them on my worst enemy.  Hang in there!  and know that I pray for you and all of the folks on this page!

I am sorry that you are still having so much pain. When I have obstructions the only drug that seems to help is Dilaudid I.V. also anti nausea medicine.. I have a j pouch and one doctor thinks that it becomes twisted at times causing the obstruction. The other doctor thinks that adhesions are causing the obstructions. Adhesion surgery in the past did not take care of the obstructions for me.   

 

I've been able to adapt somewhat and mostly avoid full obstructions over the past 6 months by managing my diet. I've had obstructive symptoms, but been able to pull myself back from the edge (meaning either just a partial obstruction, or a full that lasted less than 4hrs or so).  Im constantly thinking about what might get me into trouble and reacting to it.  Hope it's more than luck.  Going to keep trying.  Surgery for me last resort.  I just hiked the grand canyon, going on 33 years with pouch.

Wanting to offer some hope.  Despite improvement from revision, still have problems going and am in discomfort everyday.   Diet, exercise, stress reduction help with symptoms of indigestion because of functional issues.  Surgery is never easy and there are always risks, my back was against the wall and revision to s-pouch was mostly succesful and easier than first rounds of surgery but still hard.  FODMAP diet is great.  Also when and how much to eat sometimes takes priority as does what you choose.  So much trial and error, always taking mental notes and experimenting.

I would like to offer another possibility for the root of your abdominal pain. I was in the hospital for six days when doctors discovered fluid collecting in my stomach once again. Except this time it was not ascites, which I was successfully treated for a year and a half ago or so.  Radiology discovered five sacs along the lining of my stomach that would fill up with fluid.  The on call colon team felt it was pushing against a section in my small intestine that was already twisted, thus causing pain.  They drained me and I felt significantly better and could go to the bathroom with much ease again.  They decided to schedule a very weird procedure that no one, not even my colon surgeon, has heard of. It was suggested by a gynecologist who originally thought I was filling up with water due to an ovarian cyst (he now doubts that).  He has a patient who is in a similar situation (thank goodness for her!), therefore he was able to help me figure this out!

Within six weeks I filled back up again and by the time my appt came around, I already had 300ml of fluid inside of me again.  I can tell when I fill up because it is harder to go to the bathroom, and my stomach is concave after they drain me. Now I understand why bodybuilders take diuretics before they compete. You can see abs! The procedure is called a CT assisted pelvic cyst drain, I believe, and they go into your pelvic area while you are under twilight anesthesia, drain you, insert some type of liquid to burn the cysts to keep them from filling with water, then after you awaken they roll you around like a rotisserie chicken for a few hours while the liquid does its magic, then you are drained again and good to go home! There's a 30 percent chance the fluid will come back, which in that case they do it again with an even stronger liquid, and again if need be until they knock it out.  This is considered the conservative approach before they decide on surgery.

The bad news is it burns like HELL!  The good news is IV Dilaudid kills most of the pain and knocks you out while they rotisserie chicken turn you on each side.  

It's only been three weeks and I'm waiting to see what happens after my period, and to see if I fill back up with water. So far so good!  I am crossing my fingers and hoping it's successful.  I had hernia surgery for an incisional hernia several weeks ago and will probably have to get a revision because it still pokes out.  If I can knock that out AND not have fluid collect once again, I might have a great 2020!

If you are feeling bloated, you may want to have your doctor schedule a scan to see if you have fluid in the area. I would have never dreamt of such a thing happening because it's so odd.  I joke with my friends that I took out the alien sacs in order to save Earth and that I was almost the Mother of Aliens.

 

Sylvia, thank you for reaching out, I’m sorry to hear you are having similar problems! Your pain sounds awful and I’m so sorry to hear you are going through that! It’s been almost a year a half since I first started having pain that comes and goes on my lower right side. I’ve seen several different doctors and my latest one thinks there could be a narrow spot in my small intestine where my stoma used to be so next month he is going to do a pouchoscopy with a smaller pediatric scope so that he can go further up and look at that spot and dilate it if necessary. I had a loop ileostomy while I was waiting for my j-pouch to heal and he said when it’s stitched up and put back in then that part of the small intestine can be a little kinked and not perfectly smooth like it used to be so it can create a narrow spot that food can get temporarily stuck in causing partial obstructions that resolve on their own when the food finds it’s way through. This would cause pain but wouldn’t necessarily show anything on tests. If this is what he finds and he’s able to fix it that would be great! If he takes a look & finds nothing unusual then we’re back to the idea that I’m having partial obstructions because of some sort of adhesion interference. Initially when this started happening the pain was unbearable! It’s still happening every 1-2 months but now the pain reaches about 7/10 instead of like 12/10 and only lasts an hour or two instead of lasting 5-8 hours. I think the reason for the improvement is related to changes I’ve made such as eating smaller meals, eating less bread, rice, pasta and other things that cause thicker stool and taking Miralax every day (these were all recommendations from my doctor). I tried physical therapy once but the therapist didn’t seem to be very knowledgeable about my issues even though I was told she could help me when I scheduled the appointment. I was feeling overwhelmed by the number of different kinds of appointments I was going to so I haven’t been back. I have been seeing a massage therapist that has been doing abdominal massage and that has been interesting because she has been able to pinpoint the area of the pain and replicate the pain by pushing on certain spots. I’ve only done this a couple times so I’m not sure if it is helping yet but it doesn’t seem to be hurting anything so I’ll try to keep up with it and see what happens. So, that’s where I’m at. Most of the time I feel okay but when I end up in pain and don’t know why it is really stressful and frustrating. I will keep searching for answers! I hope that you feel better soon and I hope that you find the help you need too!

 

Jackie, I did see a physical therapist once but haven’t been back. I found the one I went to by seeing which ones were covered by my insurance and calling around explaining my situation & asking if they could help me. The one I saw was nice but didn’t seem to know a lot about what I’m dealing with. Maybe she could have helped me if I stuck with it but I needed a break from having my life revolve around appointments. I did the same thing with massage therapists and I’m liking that better than the physical therapy for now. I wish there were more therapists that worked specifically on these issues but they seem to be pretty hard to find so I just looked for someone who knew a lot about the body and how everything is connected and who felt comfortable working with me on that area. I hope you find someone who can help you!

 

Marj, I tried to find help for the pain itself since no one has been able to fix whatever is causing the pain and I just seemed to run into a lot of dead ends. After pushing a lot I was given a low dose of oxycodone but my doctor was super reluctant to give it to me and said he wouldn’t give me any more and recommended not taking it. I tried it a couple of times when I was in pain and it didn’t help very much. I was also told by other doctors not to take opioids because they cause constipation and will make it take longer for the obstruction to work itself out so even if I could get something that would help with the pain I’m scared it would make things worse. I was finally sent to a pain specialist who said he didn’t know what to do with me because he’s used to treating people with chronic back pain and things like that. He prescribed me methocarbomol, a muscle relaxer and when I asked how that would help me he said something about how there could be a placebo effect from taking it and that might help me. That was really frustrating! I never took it because I didn’t see the point. He also offered to prescribe medications such as antidepressants that can help with nerve pain even though he couldn’t tell me how that would help this situation. I’ve reached a point where I don’t think I’m going to get any help with the pain and I just have to find a way to get through it mentally when it happens, which really sucks!! I don’t know what else to do though. All the doctors I’ve seen seem to be so freaked out by the opioid crisis that they won’t even acknowledge or discuss the pain itself.

 

CALIFORNICATION, wow! I’m so sorry to hear you are going through this but also really happy that you were able to find out what was wrong! I’ve never heard of this so it is a really interesting to hear about a new theory of what might be causing this. I do get bloated a lot. I’ve figured it’s just because there’s not as much space for anything to go since my large intestine is gone but I’ve also wondered if food and liquid builds up sometimes and then causes obstructions and/or puts pressure on certain things which would cause pain. I have had a lot of scans, CTs, ultrasounds, an MRI, etc, so I’m wondering if it would it have shown up already if I had this, but maybe not. I’ll have to ask my doctor about this. Thank you for sharing what you’ve been through, I hope you feel better and have a great year in 2020!

 

Thank you everyone for your input & responses. I am really grateful to have this community to talk to.

Shaina

Shaina, many thanks for your response. It’s been very educational reading all the varied experiences on this thread alone. 

Once my heads a bit clearer I’ll read through all the reply’s again and hopefully be able to investigate some of the suggestions. Since I’m in the UK I don’t have the same level Or variety of health specialists to consult. The main huge advantage of our National Health Service is that treatment is free of charge at point of administration (however all employed people up to retirement pension age pay National Insurance contributions deducted direct from wages- it’s certainly not a lot of money!) in Scotland where I live even our prescription charges have been abolished. Obviously the knock on effect is that there’s just not as much funding available for the NHS to provide the same variety of specialists as there are in some other countries.

Thanks again, very much appreciated. 

SJAN810 posted:

Hi MADDIE18,

Thank you for responding to my post.

I am curious how your doctor determined what the problem was because we are still in the stages of trying to figure out exactly what is happening. All of my scans and test results come back normal when I am experiencing the pain. There is nothing showing "proof" that I have a blockage or that there are adhesions or that my intestine is twisting/bending. My doctor is thinking that is what's happening based on my symptoms but we don't know for sure. 

Also, how often do you have episodes of severe pain? Do they last for hours like mine? What do you do when it happens? So far my doctor is telling me to go to the ER if it happens but it is exhausting to go through the ER experience each time just to have them tell me everything looks normal and send me home. I know it's better to be safe than sorry but I wish there was a better option.

Have you been able to go long periods of time without experiencing an episode? Are dietary changes helpingSo far this has happened once every few months since it started, even with dietary changes.

Thank you again!

 

Hi. Sorry I’m new to this site and I think I posted something I didn’t mean to. I have had over 25 surgeries I’ve had 3 j pouch’s made and my last one is doing great. First thing is “ I think “ unfortunately scar tissue is undetected in a scan. Also as they cut through scar tissue it grows back. Scar tissue can be very painful. I hope you can find answers I was lucky to get to to to the best in Cleveland Clinic. I’m here if anyone has questions and I’m getting so much great information from everybody. Stay strong ❤️💪🏼🙏🏻

Hi Ashley, welcome! Thanks for reaching out. Wow, I can’t imagine having 25 surgeries, I’ve only had 3 and that seemed like a lot! I admire your strength. Thank you for your encouraging words. I hope we will all find answers and figure out what we need to do to get better and avoid ending up in pain. I’m really hoping my pouchoscopy next month reveals something that is fixable/treatable so I can get better. 

Aaawwwwwww I know you are so overwhelmed but you will get through this. You know your body so if your in pain be persistent with your Drs. I had a situation and I had a lower left side pain but very low and they did scan after scan said nothing was wrong. I finally went to Cleveland and they figured it out. First of all you don’t have to go to Cleveland my point is some of these Drs don’t know what it is so they push you aside in a way. I just want you to make sure you tell them and keep on them if your in pain. You got this stay strong 💪🏼❤️🙏🏻

Ashley Doviny I can't imagine 25 surgies.I am in the hospital at Johns Hopkins now . Another small bowel obstruction. I saw Dr. Remzi last month in New York. He proposed doing a pouch reconstruction. I was overwhelmed and couldn't imagine having this 3 part surgery and surviving it mainly because of my age. I am 78 y.o. Who operated on you at Cleveland and how hard were the surgies on you?

 

 

Omg my heart aches for you. I swear to god I’ve been there and I look back and go how did I do this. I stayed 3 months the first time my colon ruptured because everything that went wrong did. I ended up with candida in my whole body double pneumonia etc etc that was in Atlanta. Obstruction after Obstruction the wheels just came off. I made it through by the grace of god. All this was in Atlanta it just kept hitting me I spent basically 10 yrs of my life in and out of hospitals. Long story short I kept saying I have pain on my left side no one would listen plus it didn’t show up on scans. Finally after moving to Charlotte to be with my mom I was bed ridden for 8 months with TPN and home health care j got a massive fistula that came out of my belly button or where my belly button used to be. I made it to Cleveland and they found a microscopic leak in my Jpouch it had walled itself off from the rest of my body so here we go again. They pulled that out and later long story short my third Jpouch was made. I saw Dr. James Church I’m pretty sure he had something to do with inventing the Jpouch he’s from New Zealand he has people from the Middle East coming to see him. They are building a part of Cleveland Clinic over there. I have been fine with my Jpouch but I get structure a lot and was it’s hospitalized for the second time in  6 months I had some kind of fluid in my abdomen. I’m seeing my surgeon here tomorrow he trained under Dr. Church and I’m going to ask him if I need to go back there just to look at all my scans. My surgeon is wonderful but I have only a little bit of small bowel left and I’m just the 1% it’s scary I only trust him and Dr Church. Its like Disney World there for me. What can I do my god I wish I could come be with you. I have all the contacts at Cleveland let me know. I swear I wish I could talk to you I know where you are in your head because when I think of going through that again I think to myself do I have it in me anymore. You will get through and I hate when people say that but I can 😀 because I’ve been there. Please please let me know how I can help you???!!!!!🙏🏻🙏🏻🙏🏻🙏🏻❤️❤️❤️

Ashley 

I can't imagine all that you have been through. The mental and physical challenges must have been almost overwhelming. I am happy that you are doing well now and that Dr Church will be able to help you feel even better. Does Dr. Church do the 3 part surgery that Dr. Remzi does when he does a jpouch reconstruction?Remzi was at Cleveland before he went to New York about 3 years ago.Thank you so much for posting. I will try to be hopeful and post my decision. My Doctor here in Baltimore thinks that he can probably help me with one surgery but I am not sure about that. Did your surgeons suggest just converting to a permanent ileostomy? I hate to ask you to post such personal information. I am not very knowledgeable when using this site and don't know any other way. 

Marji

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Hi. Omg I don’t cate I’ll tell you anything. I had no choice my colon ruptured but I knew that I could get the Jpouch. The 3 part thing I don’t remember what they are doing now but he’s cutting edge. The first one my colon was taken and I think it was a 3 part. The second and third they pulled down more small bowel and made a Jpouch then bag on for 3 months then just connected right to the Jpouch it was pretty easy to connect it only about an hour operation. It’s amazing what they are doing now. Dr. Church has a woman that trained under him and is supposed to be the new guru. She does complicated surgeries on people with multiple Jpouchs and fistulas etc. I got good news from my surgeon today. They think I had an acute bout of peritonitis and it’s gone he said he would cat scan me in 3 months to see if fluid is still there. They killed me with flagyl and Cipro IV drugs for 3 days and I think that did the trick🤞. What is going on with you? Do you have a Jpouch or colostomy bag? I’m sorry to ask again?

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