J-pouch issues

[hangingon]

j-pouch issues

Hi,
so i had a flex-sig yesterday and my GI found that i still have ulcers where my j-pouch meets my intestine. she took biopsies which will come back in 8-10 days. she says i will probably have to have surgery to create another connection site because the ulcers are probably cause by a lack of oxygen. does anyone out there have a j-pouch, or have a similar issue? i am not psyched about another surgery, but really like to feel better sometime in the future...

any information or similar stories would be appreciated.

 

[tiloah]

I have never heard of this. I hope you don't have to have another surgery. I just had a colonoscopy (I had a resection of my right colon) and there was an ulceration near the surgical site, but my GI wasn't terribly concerned about it.

Did she indicate the ulcerations she found were preventing you from "feeling better"?

 

[hangingon]

the ulcers have been there for 1.5 years, they are acting just like a flare. also they are too far in to be treated by enemas and are unlikely to be helped by oral meds. i'm pretty miserable right now, and would really like to have a better quality of life. i will wait until the biopsies come back and i talk to the surgeon before making any decisions... i was just hoping to find someone who had been through something similar.

 

[tiloah]

I'm sorry you're miserable. Unfortunately I can't speak to the J-pouch thing. I know the forum has members who have a j-pouch, but I haven't heard of this particular issue with them. Of course, we can all relate to the symptoms.

It sounds like surgery is your best bet, if enemas and oral meds aren't likely to do the trick. I hope whatever you end up doing it helps you.

 

[Terriernut]

Hanginon, what were you diagnosed with, Crohns or UC? I know those with UC have had success with J Pouches, but those of us with Crohns...no.

Because Crohns tends to flare up in the Ileum, especially for those with J pouches.

I am very sorry you are having this happen to you, I hope they can help you, even if its with a dose of pred.

 

[Mr Bedfordshire]

hanginon,

im a j-poucher after being diagnosed with colitis in 2005, then having a j-pouch formation surgery not long after due to my bowels becoming so inflammed they went pop?!

things were going great guns for me, i had colitis and j-pouch running perfectly, then gradually i went down hill-more cramps, more trips to loo and weight loss. had numerous scopes and tried loads of meds and then after changing consultant, he then said that ive now got crohns:voodoo:

started remicade in october 2011, and im due for my 4th infusion in a few weeks, but ive not noticed any difference, although my most recent scope a few weeks ago showed less inflammation and ulcers so it must be doing something.

im just about to kick start my new yrs resolution and start working out again and eating healthier, so fingers crossed this may kick start me into remission as ive pretty much tried everything else.

keep smiling.:kiss:

 

[hangingon]

Hanginon, what were you diagnosed with, Crohns or UC? I know those with UC have had success with J Pouches, but those of us with Crohns...no.

i was originally diagnosed with uc, had my colon out, got a j-pouch. i had 7 years of perfect health, then i developed a fistula. since then i have had several more fistulas a couple fissures, and loads of other crohns related fun. after much testing my GIs now say i have crohns.

i just know i feel pretty awful most of the time, spend way too much time going to the bathroom and bleeding. also, fistulas.

i will find out more when the biopsies come back, i just get a bit down when they start to mention surgery.

 

[Terriernut]

We all get down when we hear the surgery word. :stinks:

Lets hope it doesnt come to that. Let us know how the biopsies turn out?

:hug: