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.

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?

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. 

Last edited by SJAN810

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. 

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