UC --> Bowel perforated-->Total colectomy--> Jpouch --> Pouchitis--> now Crohns?

[Gutless Wonder]

Just as the title says:
I had UC for one year, then while in hospital with a bad bout of UC my bowel perforated under the unwatchful eye of the GI.
I knew I was about to die from the perforation, and I actually felt euphoric. After a month in extreme pain in the hospital and worrying about my children, I suddenly knew everything was ok and that dying was not to be feared when it is time to go.

I had an emergency total colectomy.
I am happy I didn't die that day, as I have enjoyed seeing my children grow up, but I am certainly not worried about death anymore.

I have since had reconstructive bowel surgery to remove the ileostomy, and now have a J pouch.
A year after the Jpouch I had a kink in the bowel and more surgery.

The past 14 years with my pouch have been very difficult. The pouch has never emptied well for me, and it gives me so much pain every day when it is full.
Gas is so painful and I struggle to go to the toilet so badly if there is any gas in there.
Anyway I am not expecting a lot of people on this board to know much about Jpouches, but recently I had a sigmoidoscopy in my pouch and terminal ileum, and I have inflammation and aphthous ulcers in my pouch and my small bowel.

I am currently on a dose of entocort to see if this helps and to determine if my UC has morphed into crohns. Or maybe it always was crohns.

So far the entocort hasn't really helped and I am in week 4 of taking it. Maybe it has slowed things down a bit, but not stopped the pain of before, during and after going to the toilet.

Sooooooo yeah ! Feeling pi$$ed off !

 

[Jessi]

Hello Gutless, and welcome to the forum.

I'm sorry you're still going through all this garbage. It's one of my fears in the back of my mind, too. I still have my colon and am in remission, but I think about it every once in awhile. What a wasted thought pattern, right?!

I'm hoping that this problem will get figured out for you soon. And resolved...

Hang in there. :hug: I hope to see you around the forum often.

 

[Terriernut]

Well Gutless. J pouches as you know arent recommended for Crohnies, and now you know why. We always seem to flare in the J pouch. And you know what....THAT SUCKS!!!! I'd give my first grandchild to have a J pouch, but it isnt to be. (ok...he's never seen, so I cant give him away..perhaps his mother instead? oh..step daughter not blood, dont get angry peoples!)

What is the GI saying since this last dose of entocourt isnt doing the job for you? Step it up to pred? Try biologics?

 

[xJillx]

Hi and welcome! I am sorry you have struggled so much with your JPouch. I think the main reason is you its likely you do have CD, not UC. To be honest, we have had several members with the same story - diagnosed with UC, got a JPouch, rediagnosed with CD. It is very, very upsetting to think you had been cured and to then have that taken away.

However, hopefully you will start to feel better once the real issue (Crohn's) is addressed. I sure hope that is the case for you. Hang in there!

 

[jstover]

Hi All, I think I have a similar story but its still playing out so I am looking from input from anyone else that may have had this experience and how it turned out.

I was diagnosed with UC long ago and had a total colectomy and Jpouch about 15 years ago. Things were fabulous for so long that I stopped thinking about UC all together (yeah that good). Then about 2-3 years ago. I started having more difficulty completely evacuating the pouch. It would require a lot of straining and was even more challenging if there was a lot of air in there. First my surgeon dilated the sphincter muscle on several occasions which resolved the issue initially but then seem to resolve for shorter and shorter periods of time and about the same time, with the help of my OB, we discovered a ileo-vaginal or pouch-vaginal fistula (surgeon could never identify the exact location) So.... I was finally referred back to a GI who tried some cipro and Flagyl in several combinations to try to clear up the fistula. They did work like a charm for a while and eliminated all symptoms that I complained about earlier but the fistula never fully healed and the staining symptoms would return if we stopped the antibiotics. Finally after about a year, the antibiotics seemed to be working for shorter and shorter periods of time as well so Dr. moved me to Pred, again, instantly things were great but every time I tapered symptoms would be back a week later and often both pred and cipro/flaygl would be required to get things back to normal and now it just seems that I have to keep shuffling the medication every few weeks to maintain normal bowel behavior. Now we are trying Humira and my diagnosis has been moved over to Crohn's mostly due to the presence of the fistula. The Humira seemed like a good bet back when the Pred was quieting everything so nicely but over the several months it took insurance toget set up to cover it I noticed the Pred would seem less effective and anitbiotics seemed to be doing the trick. I am going ahead with the Humira anyways as its better than long term Pred but don't have high hopes at this point.

Anyways, apologies for the long story (but it is) but I feel like there's something that we are missing as to why these meds work for a while and then don't but are effective again later on, cycle after cycle.

I would be interested in hearing if others have experienced similar problems and have any ideas of things I might not have asked about.

 

[David]

Hi jstover, I'm glad they moved the diagnosis to Crohn's as that was what I was thinking halfway through your post. I'm glad I wasn't the one that had to break that one to you

Have they discussed the idea of Remicade with you? Remicade is shown to be pretty good at closing fistulas.

I hope they get this worked out soon for you!