Permanent or j pouch ??

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Kf1986

Joined
Dec 26, 2012
Messages
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Hi everyone i have a date for my surgery ive opted the j pouch but ive heard so many bad things about it i would really appreciate some advice from people living with a j pouch. All th bad points and good points :)
 
Do you have Crohn's or UC? My surgeon told me he wouldn't ever do a J-Pouch on someone with known Crohn's.
 
I have crohns but my wife had UC for over 30years. She had a Jpouch for over 20 years and all was good until scars biuldup and she had a hard time passing a BM. (That was after 20years of great health with the "J") But after 20 years thr Dr. said that the Jpouch only last about 20years so they gave her a perm. ilyostomy and she is well again and is doing so good. The good thing about having a ilyostomy with your colon removed is that you are "Cured" from UC. she is now 57 years old and doing so good. the last 4-5 years with the "J" she was having fever's (low grade) all the time and was in and out of the hosptial all the time. I hope this helps.
 
I have a J-pouch formed, but have opted to stay with my ileostomy for the time being, as it really agrees with me. I made the decision to have a J-pouch done during colectomy rather than go straight to ileo so that I would at least have that option available to me. There are many success stories with J-pouches. There is also a website dedicated to support for people with J-pouch.

http://j-pouch.org/eve

I do like my ileostomy, but many people do not like them and are glad to be done with them once their J-pouch is healed and ready to function. There is a lot to consider. I wish you the best on whatever you decide!
 
Thanks for the replies im going to do the same as you 2th fairy im going to keep my bag for a while to get my life bk as ive been ill for so long ! But if i want th j pouch then i have the option which i think in time i will definitely try :)
 
What is your surgery date?

Do as much research as you can to get prepared. The surgery is hard on your body, but once you get out of the hospital and on the mend, I really think you will be so glad you did it.
 
Im a bit nervous now about th pain i will be in :/ but i have to think of the outcome and being rid of uc !
 
Getting rid of UC pain is worth the inital pain of surgery. Pain wasn't really an issue for me in particular in connection with colectomy, it was the shock to the body of having had such a major surgery and no longer having a colon. It takes a few days for your bowels to wake up and when they do, it's like they just sort of say "what the hell, man?!?!" Dehydration is a big issue. Don't get me wrong--there is pain...just that isn't really the main thing with colectomy. That's why I say to do as much research as possible beforehand so that you are prepared for all of the possible setbacks in the first couple of months and know what to do about them.
 
Yes dukeis its on the 19th march . What do u mean shock to the body what other things should i watch out for ?
 
Suppose it depends how your rear end is? Mine was severely diseased so a j pouch was never an option. Pain was a big issue for me, I had clots on my lungs so couldn't have an epidural. My pain was not managed at all and I didn't know enough to ask for help. Now, if it happened, I would demand help! My proctectomy was so much easier, this time I had the epidural.

Good luck, you will feel so much better xxx
 
Sorry, I don't mean to worry you. Just read that back. If I had been on this forum beforehand I would have known about all the options for pain relief. When I had my first op I was in hospital already and had no time to prepare like you guys. It was the best decision I could have made, I am so glad that I am no longer ill. I hope it is the same for you xxx
 
My DD has a j-pouch and her story is linked in my signature if you would like to read it. She had UC and it was not an easy road, but regardless we are happy with the outcome. I have done A LOT of research about j-pouch issues. It seems most issues involve cuffitis and pouchitis. Pouchitis is controlled usually with antibiotics. Cuffitis is controlled usually with antibiotics as well and or Topical Mesalamine. A way to avoid Cuffitis is to get a mucousectomy during the protocolectomy procedure. Not all surgeons are skilled in this very complicated procedure, if done incorrectly it can lead to pouch failure.

http://www.ncbi.nlm.nih.gov/pubmed/23483639

The surgeons whom performed my DD surgery has published this link as to the same as above. Usually a mucousectomy is hand sewn anastamosis, whereas my DDs is double stapled a new technique being done now.

http://www.ncbi.nlm.nih.gov/pubmed/14555938

The cons with the mucousectomy
http://www.ncbi.nlm.nih.gov/pubmed/17504334

Best to be informed before going in. This is how I survived.
All in all my DD is doing well.
 

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