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12 replies

Lesson learned, don't fix what isn't broken

D dukee11Member
Feeling the need to vent. I have been following discussions on here for the past year and a half since being diagnosed with UC. I now have a jpouch which was connected this past May.

I'm sitting here thinking to myself, why change the way my body works. Why would I fix something that doesn't need to be fixed? At least with an ileostomy you aren't changing how your digestion system functions, merely removing a sick portion. Food is still taking its same path just exiting a little sooner because there is no longer a colon.

The jpouch goes against all of this logic - tampering and altering how your small intestine functions, on its own, when it worked just how it should and always had pre being stitched into a "J". Then connected to a "still diseased" portion of the rectum. Yeah that very small portion of diseased rectum "might" not matter in the long run but why risk that when everything is going great with an ileostomy. Completely disconnected and away from that diseased rectum. No worries at all...

Its funny how I am just beginning to see this but now a little too late.

I cant say I regret going through with the jpouch surgery because then I would have always wondered "what if?".

But now I think, what if I had kept the ileostomy...what if...
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D dukee11Member
Good question.

I guess it seemed like the best option in terms of appearing "normal" again. Having a bag attached to the outside of your abdomen didn't really strike me as getting back to "normal" or as normal as one could get in this condition.

But I guess I only thought of it in terms of an appearance standpoint and how others would perceive me, instead of how much better it made me feel.

Comes down to fitting in, in the end. Sad to say.
C CeeeeCeeeeMember
I'll be forever grateful that I had a great experience with my temporary ileostomy. I would have no problem returning to it if need be. However, even after much reticence, I went ahead with the takedown after a year of living well with the ileostomy. That was ten years ago. I've been fortunate. My J-pouch works well. My small intestine still functions as a small intestine save the portion which was used to form the J-pouch. It, too, works as intended. I guess it is all a matter of personal preference and one person's choice may not be that of another's. It is okay!
mgmt10mgmt10Member
I suppose it's a gamble. I had a very difficult time with my ileostomy so my experience is the opposite of yours. The ileo was nothing short of torture for me...bad skin breakdown, burning and itching. Ugh and the leaks. So my j pouch is a gazillon times better than my ileo was. A lot of people have wonderful ostomies (God bless them) that give them no trouble. Sounds like you had a good one. Then others like me do better with the j pouch. Hope you and your j pouch get along better in the future. The what ifs will make you crazy. Smiler
minnieminnieMember
You just got your pouch connected May 2012, right? So about 3-4 months out, correct? I am about 9 weeks out, and according to many people on this site it will take up to a year or so to adjust. I loved my ostomy and had no problems. I am not crazy about my j-pouch right now and I'm dealing with some complications. But that's not to say I may not like it better some day. I am keeping hopeful based on people who have helped me on this site. Maybe we will be success stories someday! Both surgeries comes with pros and cons. I guess we don't always know what will happen.
Epic ScotsmanEpic ScotsmanMember
The body is capable is ridiculous feats of adaptation if it is given a good reason to adapt. That being said, it's all up to the individual as to what works best for them. I for one hated every single second with the ileostomy and would be loathe to ever go back to it.

I decided, from day one, to make this new organ of mine do exactly what I want it to. I throw ridiculous foods at it so that it can learn how to handle them. I hold it in way longer than necessary to give the thing a reason to stretch out (my goal is to get it to the size of a normal rectum because hey, there's room for it down there).

In the end though, everyone's different and you've gotta do what's best for you. I certainly wouldn't recommend everyone eat half a large pizza for lunch and a double quarter-pounder for dinner.
skn69skn69Member
There is always the K pouch or BRIR as an alternative to either end ileos or unhappy j pouches...it is still a pouch but one that has an abdominal stoma and a much lower incidence of pouchitis and problems other than an somewhat and occasionnaly fragile valve.
If you do not want an ileo for whatever reason (skin breakdown, esthetics, personal reasons etc) and you have a very discontented j pouch that makes your life miserable then please look into what a k pouch is or PM me and I will give you any infor that you may need.
I hope that your j pouch is just temporarily having a tantrum and that once it figures out its role it will give your years of peace and happines but please do not throw the baby out with the bathwater just yet...give it time to learn its job...you may be happily surprised in the long-run and if not...Then there are solutions.
Sharon
R RLCMember
I, too, feel the same with dukee11. I had a takedown 4/30/2012 and this j pouch is like having UC all over again. I have contractions/pain when going and go anywhere from 4 - 15 times a day. Is that normal at this time? I have been on a picc line (nutrition) since June 20th. I am down to every other day. Running mild fever 100.4 that comes and goes and they still can't figure out why. Waiting to see GI in Sept. hopefully, she can shed some light on this very dark tunnel. Still waiting for it to get better.....Smiler

Roberta
georgiegirlgeorgiegirlMember
Personally I didn't mind the end ileostomy I had first - it was such a relief not to have UC. The loop was a different story, leaks, skin breakdown and hyperactivity at most bag changes. I am thrilled with my Jpouch but then it is functioning well and I feel healthy now.I did feel self conscious with the bag especially during summer - this summer am looking forward to getting in my bathing suit and swimming again (I know they say you can swim with an ileostomy but I didn't want to). However if the worst happened and I had to go back to an end ileo then I would deal with that too.

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