Hello there, im a newbie and i am considering getting a j pouch. But i have a rare health condition where cold causes me to have watery diarrhea. Right now the cold also triggers UC inflammation. This sensitivity to the cold is extreme. So i was wondering if after a year of having a j pouch would i have issues with incontinence (leakage) or would i still be able to hold in the watery stool?
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Hi, @MoeK18. It’s hard to be sure, especially without knowing more about your condition. If your condition makes your anal sphincter function poorly then you could still have the same problem. If your condition makes your rectum overactive then J-pouch surgery could help, since the rectum (the very last part of the large intestine) is removed. A healthy J-pouch can hold watery stool just fine, though everyone seems to be happier with stool that’s a bit thicker than that.
When I met with each surgeon they all performed a DRE to see what my sphincter tone felt like, as this would be an indicator of the ability to hold in stool between BM s .
they were all satisfied with results and told me I was a good candidate despite being 63 at the time of evaluation.
Right now, I am 60 days out from second takedown. At this point I have a small amount of leakage in the middle of the night, which I am told is not uncommon at this point.
I take an Imodium before bedtime or around 3 or 4 am to get thru the night.
I personally think you should be fine, i think its worth the risk. What state/country do you live in? Might be better to move to a warmer climate?
I live in Montreal Canada, a very a cold city in the winter. I would like to move to Palm Springs but i also have severely damaged lungs to the extent whereby if inhale smoke from forest fires then i would suffocate and die. And after what happened last year with the california wildfires then the US is not a good candidate. I am considering moving to Dubai where my brother lives. But its a radical change of life and im not sure i can get a visa. I would also be imposing on my brother as my income would be a problem.
The thing is i have many more concerns with a jpouch, such as what happens if i get c difficile again, or pouchitis, or hemorrhoids, and the many restrictions of foods that i cant eat due to hemorrhoids. It really is a difficult decision to go with a stoma or jpouch. The only thing i can do is inquire, assess and list the pros and cons.
Hi Moe,
I answered earlier but I have reread your posts and want to answer you from a different prospective.
Unfortunately, no one can predict your outcome on the other side of the procedure. The majority of folks on here have issues such as myself, the majority of the jpouchers out there probably have had good outcomes and are living their life having never eyeballed this site or have been here and moved on.
you are very smart to do your due diligence and research to make the very best decision for your particular situation which is unique to you.
my personal opinion is that I would never settle for a bag. I had the loop ileostomy for 13 weeks and hated every second of it. That’s my opinion. Others will disagree.
remember, surgery is a guarantee of nothing.
My only reference point was my mother in law who in 2004 at age 69 underwent a one step procedure, and at age 86 has had a perfect outcome for 17 years.
my outcome/experience is a complete opposite of hers in terms of surgeries, osteomy and jpouch functionality.
since this is a life altering surgery, the cold weather that gives you watery stools might continue when you surrender your colon. Also please consider that for me watery stools equals major butt burn! So even if you can hold it in, the BM might be miserable. So take that into account. You might have to consider moving to a warmer climate if that would truly help. I believe the surgery is worth the risk if your body can handle it. Another way to look at this, is from the prospective of what if you went with the bag and never tried the jpouch, how would you feel and would you second guess yourself forever?
please continue to ask questions and Myself and the community will do our best to assist and answer
best regards,
eric
Watery output is best in my opinion. I have no problem holding watery output without leaks. And way easier to empty the pouch. Empty like in seconds. But i do have harder time emptying when it's thicker. But this is me.
Wow Bent-Arne, that really throws me off with New577 saying watery output causes butt burn.
I am really jealous of Bent-Arne…
but kinda proves my point that each individual can have their own unique experience and outcome.
I exchanged emails with my surgeon today and he indicated that my experience thus far is normal as far as he is concerned and I will just have to deal with this via diet and Imodium and placing a cotton ball at my anus to catch any leakage while I sleep.
@New577 posted:I am really jealous of Bent-Arne…
but kinda proves my point that each individual can have their own unique experience and outcome.
I exchanged emails with my surgeon today and he indicated that my experience thus far is normal as far as he is concerned and I will just have to deal with this via diet and Imodium and placing a cotton ball at my anus to catch any leakage while I sleep.
Hope you get better, i wish more surgeons gave their emails to their patients.
@MoeK18 posted:I live in Montreal Canada, a very a cold city in the winter. I would like to move to Palm Springs but i also have severely damaged lungs to the extent whereby if inhale smoke from forest fires then i would suffocate and die. And after what happened last year with the california wildfires then the US is not a good candidate. I am considering moving to Dubai where my brother lives. But its a radical change of life and im not sure i can get a visa. I would also be imposing on my brother as my income would be a problem.
The thing is i have many more concerns with a jpouch, such as what happens if i get c difficile again, or pouchitis, or hemorrhoids, and the many restrictions of foods that i cant eat due to hemorrhoids. It really is a difficult decision to go with a stoma or jpouch. The only thing i can do is inquire, assess and list the pros and cons.
How about FLorida or Texas???
I am sure your brother will not mind, he sounds nice.
Its not that simple for me to pack up and move. I am heavily disabled and restricted with this cold sensitivity issue that i have along with UC. I need two caretakers to care for me, one backup. And before i move i have to get UC under control since i have severe bowel urgency, a symptom that has ravaged my life in the most unprecedented way.
@MoeK18 posted:Its not that simple for me to pack up and move. I am heavily disabled and restricted with this cold sensitivity issue that i have along with UC. I need two caretakers to care for me, one backup. And before i move i have to get UC under control since i have severe bowel urgency, a symptom that has ravaged my life in the most unprecedented way.
Okay, i did not know all of that previously, hope everything works out! Best of luck 
Hi Moe,
I am sorry to learn about all of your troubles.
we are only here to help and suggest. We are not doctors or medical professionals in any sense (except Jan), so it would be highly inappropriate to give any medical advice to you.
Having said that can we assume that you are under the care of GI doctors who understand and are treating your current UC condition?
What do they recommend?
Have you consulted with any surgeons as to their recommendations and what your outcome may look like?
I know you started this thread with a simple question, and it has morphed into something else.
you have a lot to consider, and I promise you that this is life altering surgery and your outcome is not guaranteed. I make this statement from personal experience.
One surgeon did tell me that my life would be worse after surgery. He was telling the truth. And at this point I feel that if I got to make this decision again, I don’t know that I would take this surgical path.
please keep asking questions, doing your research and having trust in your care team.
again, we are here to help you, but since we don't know your medical details coupled with the fact that we are just a bunch of people that share a common condition, any advice or suggestions should be taken as just that.
Best regards,
eric
New577, thanks for the kind words. Sadly right now i am having an emergency situation. Because i periodically throw up while having a bowel movement, i have lost electrolytes and now im feeling very weak to the point where i can hardly walk and really struggle to go up the stairs. I also constantly feel thirsty and cold. I am right now trying to decide if i should wait for my GI to call me any day as he is expected, or if i should just go to the emergency room.
I do know that i take aleve chronically to treat my headaches as nothing else works. And aleve is an NSAID. And NSAIDS if taken in high doses with a jpouch can lead to pouchitis. For me that would be reoccurring pouchitis which would be a big problem. So that alone right there, unless there is an alternative to aleve, like codeine, then i am out of luck with a j pouch. I just dont see doctors giving me a lot of codeine since its an opioid.
Personally I would go to the ER. You sound like you are in distress, and I would want to be checked out if you are dehydrated. And when they pump those fluids in, you will feel a lot better
again, I really don’t know how to address your medical concerns and the what ifs.
what direction is your care team leading you to? If you are not getting answers, find doctors who will help you.
i sense that you feel defeated. I have been there, went to hell and back several times.
please hang in there. I fought hard to be where I am today. I won’t repeat what I have posted previously, but I wound up with a temp ileostomy unexpectedly and I had a perforation post take down which almost killed me.
find the pros who will help you. Please do not assume anything and do not give in to defeat at this point.
I wanted to, many times and my wife pulled me back from the brink.
eric
Thank you.
my thinking is what would happen to me next time I throw up. I would rather be at the hospital when it happens.
