J-Pouch not as effective as it was

Edie A.Member

Just gonna post here to rant a bit, I’ve had my J-Pouch for like 5 years after a total colectomy. Bad UC but then my diagnosis had changed to indeterminate Crohn’s. Ever since thanksgiving I’ve been having bad diarrhea and feelings of needing to evacuate with nothing coming out and cramping pain down by the pouch area. I got scoped not too long ago and it revealed I have inflammation at the area of rectum they had left and also a bit higher up in my pouch. I’ve had inflammation before and was put on different biologics, for the longest time I was on humira and living so happily, eating (mostly) anything and going only about four times a day with near solid stool!! Now I’m on entyvio and taking Cort enemas along with Canasa suppositories. I’m not with liquid diarrhea anymore but things aren’t the same. I also had mild gastritis and it’s been bothering me a bit more lately. I’ve been really anxious because my GI has been throwing the words “surgery” around and “redo pouch” and what not. I’ve been so happy with my pouch despite having indeterminate Crohn’s and being on biologics. Idk if it’s just bad luck hitting my pouch or WHAT but I’ve been on edge. I don’t wanna lose my pouch or have to go into more surgeries... I’m kinda tramautized with having a loop ostomy too since the output was pure liquid and constantly coming out. It left a really bad wound back then all around the stoma no matter what I did. Just feeling slumped like I’m sure many of us have 😔

12/26/203:30 AM

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CTBarristerMember

Edie,

I have carried "indeterminate Crohn's" as a diagnosis since 2007, and in that time my pouch has been maintained with proper treatment. I am now on Remicade for 5 years and although I have some inflammation it's been kept in check and my quality of life is excellent. I would suggest that you do not need an ileostomy until such time as all treatments have been exhausted and are proven ineffective. You do not indicate how long you have been on Entyvio? Biologics can take time to prove effective. You need to speak to GI about other possible treatments if Entyvio doesn't ultimately prove effective. Remicade and Stelara could be options. You also could just be going through a bad stretch. Have you been scoped since starting Entyvio? The inflammation getting worse is the issue. That is shown over a series of scopes. The analysis should be how are the treatments working, how is the inflammation progressing or being treated, and what do your scopes show in that regard post treatment and then go from there. You have not posted enough information for anyone to conclude it's time for you to get an ileostomy. But at some point it's possible if no treatments are working. It's just not clear from what you have posted that you have reached that point.

Indeterminact Crohn's is a very common diagnosis and it could be simply as a result of backsplash stool creating inflammation high in the pouch and lower in the neoterminal ileum. That's the exact same pattern I have and reason for my diagnosis. The change in diagnosis is irrelevant. What's relevant is your response to the treatment.

12/26/201:47 PM

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Former Member

@Edie A. You wrote “my GI has been throwing the words “surgery” around and “redo pouch”‘.

You might want to see a surgeon who is specialized in pouch redo for a second opinion, such as Dr Remzi at NYU or someone at Cleveland clinic. You should not trust a random colorectal surgeon for a pouch redo. This is critical.

It might well turn out that you don’t even need a redo, just a better GI. I would recommend you to find a GI at a tertiary center whose main specialty and “research” is focused on IBD specifically. Search Google scholar for the number of publications the GI has on IBD, UC, IPAA, Chron’s etc. If they have none or a few publications, definitely find another GI.

The GI’s at IBD research centers usually have hundreds of publications on IBD. You cannot see a random GI at this point. Due to COVID, many IBD research centers accept virtual appointments, you don’t need to travel to talk to one of those GIs. You might try a GI at the same group that could also offer a redo, those GIs are experienced in patients that need a redo vs a different treatment. I can recommend a few: Mt Sinai IBD research center, NYU IBD research center, Cleveland IBD research center. Maybe others will recommend more research centers.

If a redo surgery is really warranted, than this does not mean you need to have an ileostomy forever. It would be only temporary ileostomy. I know it sucks, but it would only last a few months. Some people on this forum really like pushing the idea of an “end ileostomy” in totally inappropriate contexts as soon as the topic tangentially implies the remote possibility of pouch failure, all the while not comprehending the emotional toll of such a suggestion, either due to low emotional IQ or a weird satisfaction of shadenfraude. You should not be discouraged from exploring the large number of treatment avenues available to you before the remote possibility of getting an end ileostomy. Simply ignore such inappropriate comments/questions for your emotional well-being.

12/26/203:47 PM

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CTBarristerMember

@Former Member posted:
Some people on this forum really like pushing the idea of an “end ileostomy” in totally inappropriate contexts as soon as the topic tangentially implies the remote possibility of pouch failure, all the while not comprehending the emotional toll of such a suggestion, either due to low emotional IQ or a weird satisfaction of shadenfraude. You should not be discouraged from exploring a large number of treatment avenues available to you before the remote possibility of getting an end ileostomy. Simply ignore such inappropriate comments/questions for your emotional well-being.

Elif- I totally agree with you on all of the above. It is totally, totally inappropriate to be pushing the idea of end ileostomy at this stage and based on the information posted by Edie. It's vastly premature, at a minimum.

12/26/203:54 PM