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J Pouch not in use!

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Mon Jun 11, 2012 11:40 pm
Is anyone like me...has had a j pouch and then gone back to a loop ileostomy?  I have been like this since 1999...and my life is way better as the J Pouch didn't work for me at all!!!

However, I just had my check up and the results are inflammation in the j pouch area although I don't seem to feel any symptoms etc...I am wondering what this would be from. I did have colitis originally but this is not Crohns according to the results...anyone with any information/insight would be appreciated. Thanks Helen
Tue Jun 12, 2012 4:40 am
I was suppose to have a J-Pouch 16 yrs ago, thus givin a Loop Ostomy in my first surgery as a diversion while the pouch and re-connect healed. during the healing months I had difficulty passing the Mucus the the pouch and lower section of Bowel were producing during those early months of healing. My Dr in his exam discovered that I had 2 strictures in the section of small Bowel below the pouch, so he tried dilating them. a short time later they gave me a barium and Xray to see if the strictures lessened any and in those Xrays they could see barium fluid had gone inside the walls of the bowel due to a tear created in the dilation. So I was agreed upon by both my Dr and I that I go with a Permanent Ilieostomy since they was nothing else that could be done. after a few yrs and I got a computer and discovered the wonderful network of support sites on line and in talking to and reading posts from other people that have or had a J-Pouch and the somewhat low rate of success and having to once again make frequent Bathroom visits along with other frustrating possible side effects like the Butt Burn and Pouchitis -I soon became actually kinda relived that I didnt go through with it, just to appear normal again

as for you question Helen -I too had UC and not Crohns thankfully -so having a total colectomy was basically a cure for me. as you probably know UC is a Disease that only effects the Colon - so having a J-Pouch means you still have you rectal stump and that can still get infected with colitis. After I had my Loop ostomy changed to a permanent stoma, my Dr for some dumb reason lef the empty J-Pouch, the stum and rectum intact (his reasoning was in case i changed my mind ) so for nearly 5 yrs I dealt with constant mucus output and had to go on antibiotics for pouchitis at least once a year. Then after i complained enough he finally said he would remover my rectum and the pouch -and said "well you really shouldn't leave the rectum in anyway if you not gonna be reconnected cause you can still have the disease present down there then" GRRRRR - and i said: Now you finally tell me this!!!! LOL
Tue Jun 12, 2012 8:17 pm
Thanks Jim that is alot of helpful information.  I have had the J Pouch intake now for nearly 13 years and haven't really had alot of trouble with pouchitis etc...only at the beginning...every year I have to go and have an anal stretch (brings tears to one's eyes!!lol) to dilate the section where the J Pouch and small intestine meet as this keeps closing up...

I agree with you...if I had of known all the horror I would experience having a  j pouch I would have just stayed with an ileostomy right from the start!!! it was a nightmare...worse than colitis.  However, I don't wish to go through with such a big operation at this point to remove my rectum ...j pouch etc as I just don't think I could deal with it plus I haven't heard great stories for women when this is done!!! Thanks for your post Cheers Helen
Tue Jun 12, 2012 9:18 pm
well, Ive have 4 surgeries -my colon removal/ J-Pouch, then the permament Ilie -then a stoma re-site to my left side (due to scar tissue), then finally my rectum and pouch removal. and for me the rectum removal was the easiest one of all. I onlt needed to take painkillers for about 3 days, and was never uncomfortable sitting for long periods of time -in fact I was home sitting at my Computer posting on my first Ostomy board 2 days after the operation!
Thu Jun 14, 2012 7:06 pm
All I can say to that Jim is WOW!!!!!
Thu Jun 14, 2012 7:27 pm
A Major surgery can be tough on us both mentally and physically  it took me a very long time to recover from my 1st surgery because i was very ill and weak going in to it. each follow-up surgery there after i spent less time in the hospital then previously because i was able to prepare myself both mentally and physically best I could for what i had in store. I got as much exercise the weeks leading up to the surgery as i could get, and i did a lot of meditating and visualization of the recover time, since i had been there before. You've most likely heard the old adage "A body at rest -tends to stay at rest..." and so the day after my surgery I used every ounce of strength I had (and would have asked for help if I had needed it) to get up out of bed -grab my I.V. pole and start walking. I went as far as as my breathe could take me -then layed down and rested and napped, then when I woke again, I got back up and walked again, and kept doing it. before the following morning I was able to walk all the way around that floor of the hospital. and best off all -all that activity made my digestive system re-awaken and start pushing air in to my Bag -and thats when they'll start you on a liquid diet, and as soon as they see you holding that down they let you have solids -and I dont know about anyone sles -I like to eat REAL FOOD not beef bouillon BLEECH LOL -So my advice to anyone with an impending surgery -don't just lay in bed feeling sorry for yourself while watching TV -if you are physically able to walk - then get up out of bed and get moving! the sooner you do the sooner they'll let you go home!Smile
Sat Jun 16, 2012 12:48 am
Well Jim couldn't agree more but I didn't get a choice of laying in bed as the hospital I was in at the time was so short staffed I remember asking just to have a piece of toast and got so tired of waiting for I was starving tha..t as weak as I was I got out of bed and made my way to the kitchen...however, when I opened the fridge to get the butter out I saw it was at the bottom of the I got down there to get it but then couldn't get back up and couldn't get anyone to come and help me so as I slowly pulled myself back up on the fridge from the floor when the whole thing nearly toppled down on me...that is a good visual isn't it...get through 6 weeks of salmonella poisioning, pregnant, survive a total colectomy only to be killed by a fridge in the hospital!!! LOL
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