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.
I’ve heard that has really helped some people. I wish it was local & covered by insurance. For now I’ll try everything that I can locally & see how that goes. 
I hope you can find someone near you that can help you too.
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.
Is that adhesion surgeon still at Hopkins?
Is that adhesion surgeon still at Hopkins?
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.
Congratulations. Did you have to have the original pouch revised ? If you did how bad was that surgery? Any foods that you really must avoid?
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???!!!!!🙏🏻🙏🏻🙏🏻🙏🏻❤️❤️❤️
Just so you know the last surgery from Dr. Church was 8 to 10 hours I felt amazing and I’m not kidding you. I had my own pain team it’s incredible. I flew home in like 10 days.
You will get better ❤️🙏🏻💪🏼
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
.
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?
Ok I just re read your post so you have a blockage and they have to do a takedown to fix it....is that right?
Sorry I’m on the crhons and colitis site so I’m talking to some other people. I’m sorry that is so rude.
Hi. I’m checking on you I hope your ok ❤️💪🏼🙏🏻💕🤗😇
Just want to say Hi and I’m thinking about you 💕❤️🤗🙏🏻 I hope your doing okay. Please know that I’m here ......you hang in there you got this. Hugs and prayers 🤗🙏🏻
After over a year of tests to figure out why I’m having abdominal pain I’ve been told that I have irritable pouch syndrome or IPS. Has anyone else dealt with this? Any helpful tips? I have an appointment coming up with my doctor and then I’ll be able to find out more but I’m really curious about it now! I’m not sure if this explains the severe abdominal pain I’ve had or if this is something else on top of that. It will be interesting to see what he says!
Hi SJan810,
Glad to hear you are finally getting some answers! I wonder if this IPS is different than the extreme pain you described previously. I think in this thread we originally were talking about bowel obstructions and IPS sounds quite different given it is increased frequency/urgency etc, wheres obstructions have nothing coming out. Maybe ask you Dr. their thoughts? Do you get frequency/urgency when you get the awful pain you originally described?
DUCK11,
I am wondering the same thing. I’ve seen 4 doctors, been to the hospital multiple times and have had tons of tests done since I first had the severe abdominal pain that started this thread. My most recent test is the first one that has come back abnormal, indicating I have IPS. Every other test I’ve had has been normal therefore I’ve never received a definitive diagnosis for the severe abdominal pain. It is now less frequent and less severe which I think has to do with diet changes, taking enzymes with meals and taking MiraLax daily. I don’t know if IPS is the explanation for the pain or just something else on top of it. IPS is basically IBS for someone with a pouch so I’ve been reading up on IBS and it sounds like it can cause severe pain although I don’t think that is common. It either presents as going to much or not being able to go (diarrhea or constipation) so I could be on the constipation end of the spectrum. I have to wait until March to see my doctor (there is always a long wait to get in) so hopefully I will find out more then. My gut feeling is that I have adhesions from surgery which make it harder for things to pass through and maybe IPS as well. I’ll probably have to keep doing what I’m doing (enzymes, MiraLax) but maybe I can treat the IPS to get some additional relief. My doctor is recommending amitriptyline for IPS. It sounds like IPS has to do with the body telling the brain that things are worse than they are, basically a hypersensitivity to pressure as things are passing through the system, and the medication is supposed to help with that.
It’s been almost 2 years since I started this thread and I’m pretty much in the same place I was when I started. On 2/26 I had a rough night…severe abdominal pain, a panic attack which caused me to pass out and end up on the floor twice. Last night (3/7) I had severe abdominal pain again. I’ve had the same lower right side pain for almost 2 years. Usually it is mild to moderate but every few months it becomes severe, 10/10 level pain, which only gets better after a BM (I often have to use multiple enemas to make this happen). I thought it was getting better because I’ve been eating small meals and taking Miralax every day, I went a few months without the severe pain, but now it is happening again (and more frequently), even with the changes I’ve made. I’ve seen so many doctors and had so many tests done and all I’ve been told is that it might be partial obstructions related to adhesions or IBS. I’ve been told to eat small meals and take Miralax to avoid constipation/obstruction and go to the ER if I have severe pain. I’ve been told to take amitriptyline for IBS. I’m doing/have done all of these things but I’m still having the same problem. I reached out to my current GI after it happened on 2/25 and all he said was that it’s probably IBS but I should go to the ER/urgent care if the pain is unusually severe. No other advice or suggestions. I’ve been to the ER/urgent care for this exact same pain multiple times and they never know what to do for me because they are unfamiliar with IBD/colectomy/jpouch. They run tests and find nothing wrong. The ER/urgent care tells me to follow up with GI and then I have to wait 3-6 months for an appointment. I am so sick of this. I feel like my only options are to starve myself (which feels horrible) or try to eat and possibly end up in severe pain. I don’t know what to do. This is no way to live. I feel like my quality of life is worse than before the surgeries when I had severe ulcerative colitis. I was in pain all the time but at least it was predictable, I knew the cause of it, and I could still eat. The only time I’ve had any decent quality of life in recent years was after my first surgery when I had an ostomy. I’ve spent the last 4 years since my jpouch surgery dealing with one problem after another and being told that everything is normal (based on exams and test results). This is not normal. I have nothing even close to a normal life. If I could go back in time I probably would have kept the ostomy and not had jpouch surgery but I can’t do that. Even if I opted for an ostomy now it wouldn’t be like it was before because everything is so messed up inside me and I could end up worse off than I am now. I really don’t know what to do anymore.
I had my reversal done in May 19 and I'm currently suffering from inflammation and an acute blockage. I'm not sure what I will do next but I hope you find a solution soon. Have you been on biologicals and probiotics? Sorry if I missed it if you mentioned it already.
ANDRINA,
Sorry to hear you are having trouble too! Are you in the hospital for the blockage? What has your doctor recommended that you to do to treat it & avoid it in the future?
I was on biologics for ulcerative colitis before my jpouch surgeries but now every test that's been done has come back normal...no obstruction, no inflammation, etc., so there hasn't really been a reason to try them again.
I do take probiotics. It's hard to know whether they're doing anything for me or not. Have you noticed a difference from taking them?
No one can seem to figure out the cause of my abdominal pain. It's been suggested that it's either due to adhesions causing partial obstructions or twisting/pulling on the bowel & causing pain, or due to IBS. The only suggestions that have been made treatment-wise are to eat less and take Miralax everyday to avoid obstructions and take amitriptyline for IBS, but even with all that I keep experiencing random episodes of severe abdominal pain, always the same pain, in the same spot (lower right side). I've been dealing with this for 2 years, it's pretty frustrating.
