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Crohn's Disease Forum » Surgery » Stoma vs J Pouch output


11-19-2013, 04:05 PM   #1
BowelMeOver
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Stoma vs J Pouch output

We were just told yesterday, after having the contrast enema and flex scope, that everything looks excellent in there, and we are proceeding with our plans for take down/stoma reversal surgery in mid December.

We've really had a great experience with the stoma, except for a few bumps early on. We never experienced any of the horror stories such as high output or bag blow outs due to gas, etc. In fact, while were were prescribed up to 8 lomotils daily along with immodium and metamucil as needed, the most medication we've ever taken in one day were 3 lomotils spread out over a 24 hour period.

I am mentioning these details specifically because I am hoping against hope that our experience with the j pouch will be just as smooth as it was with the stoma, even though we are aware and are prepared for the worst, just in case.

My question is, for those that have had the reversal, would you say that your output with the j pouch was similar, if not identical (or better!) than the output via the stoma? My thoughts are such that the amount and consistency shouldn't change much at all, and in fact should only get better, as the only difference now is the waste has a place to collect for a bit as opposed to an immediate release, and we just have to get to the point where we are able to control it prior to getting to the restroom.

I'd appreciate anyone's thoughts on my theory, as well as what your experience was like. Thank you in advance.
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Proctocolectomy/Ileal Pouch-Anal Anastomosis 9-6-2013
Contrast enema + flex scope 11-18-2013 = approved for reversal!
Reversal scheduled for December 19th. Egads!

Sometimes hope is the best medicine. Don't give up!
11-22-2013, 08:43 AM   #2
QueenGothel
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IMO my DD has a jpouch and currently has her second diverted ostomy. Granted my perspective is from kids as I also run a parents of kids with a jpouch FB group. For one everybody is different. For my DD she had really not much issues. Yes incontinence and butt burn we're typical in the beginning. Is this normal, I would say 100% yes. My daugther after food was introduced she actually never needed lomotil or loperamide. She has a perfect control. My DD was not the normal in the group her experience was much better than others. Many had a lot of night time leakage for a long while. The issue being the anus is not meant to hold pure liquid. So it will happen. Over time though Kegel and floor exercise improve this and you figure out what to eat. I think the stoma is easy, always has been always will be. Expect the worse hope for the best.

Many experience success. Unfortunately we have been subjects of Murphy's Law. My best advice is if the stoma is not a problem hang onto it as long as you can. If issues arise having a takedown could alleviate the issues. You never know how the pouch is going to work. Best of luck to you.

Last edited by QueenGothel; 11-22-2013 at 09:23 AM.
11-23-2013, 02:22 PM   #3
2thFairy
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My best advice is if the stoma is not a problem hang onto it as long as you can. If issues arise having a takedown could alleviate the issues. You never know how the pouch is going to work.
This is my thought, too. I have had such success with my stoma, that I have chosen to hang on to it for now. My J-pouch is fully healed and ready to go, but I like the ease of the stoma. It's been almost 2 years and no regrets!
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11-25-2013, 08:45 AM   #4
BowelMeOver
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I appreciate you both taking the time to share your thoughts with me regarding reversal surgery, and can understand your opinion to stay with the stoma. However, to live our lives based on worst case scenarios would be rather stifling. We are very much aware of the potential for long lasting issues with the j pouch, yet we feel we would be cheating ourselves out of the opportunity to live stoma free.

I had been following Rowan's story here long before I became a member, and it's good to read that she had some positive experiences with the j pouch. I continue to wish for good health and happiness to the both of you, and hope I can return here to share some positive experiences as well.
11-25-2013, 09:58 AM   #5
QueenGothel
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Well keep in mind Rowan is not the norm nor has she ever followed any text book in regards to her disease. We are having her j-pouch remove due to pouch failure. They think it is from having too long of a rectal cuff and possibly Crohns. Possibly doing a SIAA which is similar to a IPAA just no J in the pouch. I do run the site with a lot of happy parents. That being said though we do have many dealing with chronic pouchitis as well. Granted that can happen with an ileostomy as well.

In my experience, and this is coming from a few very good GIs and surgeons. They really do not know how long a jpouch will last they "think" a lifetime. The longest time frame I have met online is 20 years. That being said I recommend what I recommend because I am usually talking to parents rather than adult jpouchers. We have a lot longer road to think about as well. This has a lot to do with why I say what I say.

Good luck and I hope all goes well.
12-14-2013, 09:50 PM   #6
BowelMeOver
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My question is, for those that have had the reversal, would you say that your output with the j pouch was similar, if not identical (or better!) than the output via the stoma?
With the surgery date fast approaching, I would like to clarify this question in hopes of getting more feedback from those that have been through this already. I'm wondering, will the same tricks to manage ostomy output, such as eating marshmallows and other such foods, work in the same way for output via the jpouch? Did you have to increase or decrease use of motility drugs, such as Lomotil or Immodium? We have gotten into a pretty good pattern with diet and medication in managing stoma output, and are hoping to continue to do once we have the reversal.
12-14-2013, 10:09 PM   #7
2thFairy
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My surgeon told me that whatever works with a stoma will be the same after the reconnect with a J-pouch since it is all small bowel and no colon remaining. I would imagine there will be a period of adjustment after reconnect since your bowels are once again being assaulted, but after the swelling goes down I bet it will go back to how things are now with the stoma.

I have not experienced any of this personally--just speculation mixed with words of my personal surgeon.
12-15-2013, 09:03 PM   #8
QueenGothel
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It was the same foods and my daugther didn't need any loperamide at all. You get a good 12cm extra if not more of intestines to absorb more. Hoping all goes well.
12-17-2013, 01:04 PM   #9
BowelMeOver
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Thanks again, ladies, for your advice and words of encouragement.
06-23-2014, 02:54 AM   #10
maria
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For me the consistency is very loose, i do have to take somethings to help with that. Im able to hold it for longer periods of time. When you feel the urgency to go feels like deep cramps if i hold it for longer periods of time. I know this may be gross but basically every time i have to pee i have to empty pouch I cant really control that. I get lots of gas! To be honest its the magor problem with the pouch for me. In the begging you will have about 10 trips to the bathroom... its been 2 yrs and noticed my pouch can hold more so its about 5 trips to the bathroom, it all depends on what you eat though but thats about average. Im so thankful for my jpouch
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