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...!!!

 

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