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6 replies

For those of you with "bad" pouches...

I Inflamed&UntamedMember
This isn't about me, I am just curious. And asking completely open mindedly, I just want to hear what people have to say and what experiences you have to share...

For those of you with pouches that give you more trouble than joy, why do you keep them? For those of you with chronic pouchitis or cuffitis or are on long term antibiotics...why do you do it?

For those of you who had your j-pouch removed and went to a permanent ostomy what were your reasons? What are your reasons for keeping the pouch?

I'm not going through this personally but I am looking for answers to this question based on a few people in my life who are struggling to save terrible j-pouches. If it were me I would be done with it and go to a permanent ostomy. I wouldn't fight with taking antibiotics all the time and other meds and still living like I had a terrible UC flare going to the bathroom all the time, worrying about accidents, not traveling, and not really living life. I'm curious to hear opinions and know that there are two very good sides to the story here.
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skn69skn69Member
Inflamed,
I have a k pouch that has had a number of challenges in the last 12yrs (19 pouch related surgeries)...that said I am very attached to my pouch. I have a gimpy valve that has its good days and suffer leakage too.
All in all I know what I have and work my way around it...live my life according to my pouch's moods..But I am fine with it because for me, personally, I prefer the pouch to the end ileo. It is a very personal choice...some people naturally gravitate to the end ileo and are pleased with it...others live in fear of it (of the unknown?)...I am one of them. As long as I can keep fighting I will but in the end I know that I risk losing my pouch and I do not know how I will be able to handle that.
That is just how I feel about it.
Sharon
J jeaneMember
I hold on to my jpouch, despite pouchitis and cuffitis, as I am a hopeful optimistic. I keep thinking things will eventually get better or there will eventually be better drugs for pouchitis and IBD in general and finally because I do not want a permanent ostomy. I know others feel differently, but I did not enjoy one second of having an appliance on my side or caring for it and have put up with A LOT of pain and misery over the last year due to this. I do not like being on antibiotics all the time, but so far, they have helped me maintain my pouch and the latest one (Cipro) has actually made me feel as if I still have a colon and not a jpouch. My cuffitis has also abated. I am due to end the script soon so all hell may break loose again and at that point I may feel differently about retaining my jpouch. I am, however, an incredibly stubborn person who does not give up easily and thanks to 23 years of UC, I have a VERY high threshold to pain.
n/an/aMember
No. 1: I'm a chicken**** - afraid to go through another major surgery, AND, I was not given a guarantee that removal (or redo) would get rid of the fistulas.

2: antibiotics seem to keep things in check, and since I have no major side effects to them (knock on wood), I'll keep using them in the smallest possible doses that do the job;

3: I know there's always time down the road to take action if necessary and have the jpouch removed, but I'm waiting until there are absolutely no alternatives and no question as to whether the time is right.

My bottom line currently: better the devil you know (than the devil you don't)".
KarbearKarbearMember
I keep my pouch with chronic pouchitis because the antibiotics are able to give me quality of life. I also do not care for another major surgery at this point with the missed time off work and the expenses that surgery brings.

That said if my pouch does ever give me fits I cannot resolve with medication I can take by mouth (no more Remicade or Humira for me), than I would not hesitate to trade it in for an ileostomy.

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