So I have had horrible pouchitis since my take down was complete in 2003. Over the last couple years I have this horrible drop me to the ground pains in my abdomin. The only thing thats makes it even remotly better is to puke up air. It is extreamly painful. And only seems to happen when im under a ton of stress. When I get this pain I cant stand up strait or anything. Its absolutly horrible. By the time im able to get in to see the doctor, the pain has passed and there is nothing for him to see. Everytime I just go to the emergency room. They just pump me full of pain meds and send me a huge bill. It is very frustrating. So I try to just stay home and grit my teeth through the pain. But after having problems since day one. This has me worried that there is another problem going on. After it taking so long to get diagnosed with UC in the first place, now 9 gastro docs under my belt and 3 surgeries. I dont always have the faith i should have or the patiences to jump through there hoops. Has anyone one else experienced this?
Replies sorted oldest to newest
It is possible that you have a partial obstruction.
Have any of your Doctors suggested a CT scan? This test might shed some light.
Solomin
Have any of your Doctors suggested a CT scan? This test might shed some light.
Solomin
solomin
That has been my concern. I have had a full obstruction in the past that resulted in my second gi surgery. I have asked for a ct many times. There responce is always just to a partcial scope. They see i have pouchitis and put me on cipro. i will then feel better for alittle while. Then everything goes back to bad. its just very frustrating especially when it seems that all the back and forth just makes it so much worse. Due to the amount of stress that is involved with much of it.
That has been my concern. I have had a full obstruction in the past that resulted in my second gi surgery. I have asked for a ct many times. There responce is always just to a partcial scope. They see i have pouchitis and put me on cipro. i will then feel better for alittle while. Then everything goes back to bad. its just very frustrating especially when it seems that all the back and forth just makes it so much worse. Due to the amount of stress that is involved with much of it.
I have a very similar issue. I will have horrible pain, go to the ER, get pain meds and sent home. I've had xrays, and ct scans not show anything. I know how frustrated you must feel. My wife is especially frustrated because she sees how much pain I'm in, and then the docs tell us that they don't see anything wrong with me! I hope that you can find some reason for your pain and get it resolved. If you do find something, please pass it on so maybe I can have my doc look for the same thing.
dennyp3
I most definitly will. Im curious how long it has been since your last surgery? Maybe it has something to with with that.
I most definitly will. Im curious how long it has been since your last surgery? Maybe it has something to with with that.
Sonja6
I had two surgeries done in 1996. First in May, second in August. I think I have some issues that need to be fixed because it's been quite a while since the surgeries. I think I adhesions and I also think that I have problems absorbing the proper nutrients and that sort of thing. I'm going to a new GI doc soon, but it's not until January 17th. I just don't want to have to go to the ER again before then.
I had two surgeries done in 1996. First in May, second in August. I think I have some issues that need to be fixed because it's been quite a while since the surgeries. I think I adhesions and I also think that I have problems absorbing the proper nutrients and that sort of thing. I'm going to a new GI doc soon, but it's not until January 17th. I just don't want to have to go to the ER again before then.
Sure sounds like adhesion related obstructions, but the bad news is that, as you've found, by the time you get in for treatment, the obstruction has passed. Unfortunately, surgery to release the adhesiosn can cause more to form. A dilema, to be sure.
Jan
Jan
denny3
I used to have a really hard time with proper absorption. But since i have totaly switched to gluten free that hasnt been a problem. Ive even gained 7 pounds. I havent been able to pass 120 since before my 1st surgery. And now I'm 124. Thats alot when your a small person.
Jan
I did have a adhesion in 2001. That resulted with a small section of my small having to be removed. This was in between my first and my take down. Perhaps there is a abnormal amount of scar tissue built up there. And that could be whats causing my problems. The scar tissue does seem to cause alot of problems.
I used to have a really hard time with proper absorption. But since i have totaly switched to gluten free that hasnt been a problem. Ive even gained 7 pounds. I havent been able to pass 120 since before my 1st surgery. And now I'm 124. Thats alot when your a small person.
Jan
I did have a adhesion in 2001. That resulted with a small section of my small having to be removed. This was in between my first and my take down. Perhaps there is a abnormal amount of scar tissue built up there. And that could be whats causing my problems. The scar tissue does seem to cause alot of problems.
Heavier they tested you for c.diff? Cipro can elevate the chances of getting it. And getting c.diff could also cause an ileus. Just got out of the hospital with my daugther for a c.diff infection and she had not one symptom of it beyond the slowed bowels. I your belly really full feeling?
Rowans mom,
I dont think so, what kind of a procedure is it? Blood work? Scope? Biopsy? I rarely go to the doctor anymore. I mean Im sick all the time. But Ive always been sick all the time. Before and after my surgeries. So I only go when I really really think something is wrong. I found that for me, the stress that was involved with them just tossing up there hands every week. Just made it so much worse. So when I get really really bad. I go in they toss up there hands. I get pissed and then they put me on Cipro. Regardless I still think something is really really wrong. I have a extremely well regarded gasto doc. And have seen many other docs here, but no one will do any kind of exploritory sugery. Because of the amount of abdomidal scar tissue I have. They say I also have extremly bad endometriosis. All wrapped with all that other scar tissue. And I wont just go on the pill without real answers. Those doctors also just toss there hands up. I know i need to travel to another state to get the attention my body needs. But I really just dont have it in me. Im tired, were all tired im sure. But Im 29 years old and this has been a constant since i was 15 years old. Ive never went into remission. I constantly worry that by the time I get up the energy to make someone listen to me. Something is going to be really really really wrong. And this disease is going to take me to the very end.
Sorry about the rant, but sometimes it just helps to get it out.
I dont think so, what kind of a procedure is it? Blood work? Scope? Biopsy? I rarely go to the doctor anymore. I mean Im sick all the time. But Ive always been sick all the time. Before and after my surgeries. So I only go when I really really think something is wrong. I found that for me, the stress that was involved with them just tossing up there hands every week. Just made it so much worse. So when I get really really bad. I go in they toss up there hands. I get pissed and then they put me on Cipro. Regardless I still think something is really really wrong. I have a extremely well regarded gasto doc. And have seen many other docs here, but no one will do any kind of exploritory sugery. Because of the amount of abdomidal scar tissue I have. They say I also have extremly bad endometriosis. All wrapped with all that other scar tissue. And I wont just go on the pill without real answers. Those doctors also just toss there hands up. I know i need to travel to another state to get the attention my body needs. But I really just dont have it in me. Im tired, were all tired im sure. But Im 29 years old and this has been a constant since i was 15 years old. Ive never went into remission. I constantly worry that by the time I get up the energy to make someone listen to me. Something is going to be really really really wrong. And this disease is going to take me to the very end.
Sorry about the rant, but sometimes it just helps to get it out.
SIBO? Are you bloated? Distended? A good link I found about jpouch issues.
http://www.practicalgastro.com...icle_ShenArticle.pdf
http://usagiedu.com/articles/p...is09/pouchitis09.pdf
http://www.practicalgastro.com...icle_ShenArticle.pdf
http://usagiedu.com/articles/p...is09/pouchitis09.pdf
Low FODMAP diet for gas? If yes
Add Reply
Sign In To Reply
45 online (0 members
/
45 guests)