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KeepMovinOn
Hi all,

My jpouch is still unconnected (have loop ileo), but I am scheduled for takedown surgery on Jan. 7th. Normally, I do not have any trouble emptying my jpouch of it's mucous and little bit of stool that gets down there. However, on 3 occasions, I have had trouble. Here's what happens. My ileostomy bag gets overly full for whatever reason (twice at night with gas and once when I was just super busy) and then I feel a strong cramping low in my abdomen. Feels like I need to go empty my jpouch. Most of the time, by the time I get to the bathroom, the cramping has stopped (it only lasts a minute or so) and I cannot empty the pouch. I don't strain because I have heard you are not supposed to. So, I get off the toilet and go about my day. About 15 minutes, it will happen again. If I am quick enough to get to the restroom while the cramping is happening, then I can empty the pouch. On these occasions, the jpouch has been way fuller than normal. The first time it happened, it happened at night and I got up 3 times that night and tried to empty, but couldn't. I could only empty when I ran to the toilet in the morning to catch it when it was cramping.

Do any of you all know what this is? My surgeon does not have an answer. My concern is that if this is how my jpouch acts when it is fuller, then when I have the takedown surgery, will I only be able to empty when it is cramping and I have to run to the bathroom quick in order to do it? I don't understand why I cannot empty it during these times when it is not cramping...Frowner Any ideas?

Thanks.

Replies sorted oldest to newest

Jan DollarJan DollarModerator, RN, retired
It takes a long time for the pouch tissues to adapt to their new function. The pouch is irritable and sensitive to stool sitting for any length of time. Things gradually improve over the months post take-down, but never really will be the same as with a rectum, because you don't have that musculature that contracts to empty. You have to rely on gravity, peristalsis, internal pressure, and relaxed sphincters.

Once you have a constant flow going in there, the pouch will stretch when full and you will be able to sense it.

Jan Smiler
Jan Dollar
KeepMovinOnKeepMovinOnMember
Thanks,Jan, for your reply. So, after I have the takedown, I will have to learn how to empty the pouch? I feel like the cramping was telling me the pouch was full, but am having a hard time understanding why I could not empty when I needed to? And wondering if that means that I will have problems with that after takedown... When I have less to empty (mucous, stool, etc.), it seems to come out easily when I sit down to empty my bag. Thanks again for helping.
KeepMovinOn
Jan DollarJan DollarModerator, RN, retired
Nah, this is not an omen that you will have troubles after take down. All I was saying was that, yes, there is sort of a learning curve, but it becomes intuitive after some time. Your gut is just sensitive now and easily goes into spasm. That is what keeps you from being able to relax the sphincters to empty. It should not be a permanent thing. Some people do develop persistent pelvic floor dysfunction, but that is more the exception than the rule. I know it is hard not to imagine worst caee scenarios, but worrying about things that have not happened yet do nothing but increase your stress hormones. So try to be Scarlett O'Hara and say, "Fiddle-ly dee; I'll worry about that tomorrow!" Not to be glib, but jst trying to remind you not to borrow trouble. What you are experiencing seems pretty normal to me.

Jan Smiler
Jan Dollar
KeepMovinOnKeepMovinOnMember
"trying to remind you not to borrow trouble" - good advice. Smiler My mind is going pretty crazy these days with trying to make sure I am making the right decision for my family and kids. They lost a lot of time with their mom last year and I am just now starting to get back to myself. Wanting to make sure I research as much as I can to make the right decision and keep improving in quality of life rather than going backward. Stress hormones are not good for anyone, though, are they? Sometimes I guess you have to take a leap of faith...from what I can tell, there is no crystal ball on this procedure. I always try to remind myself to "write my sorrows in sand and my blessings in stone".
KeepMovinOn
Jan DollarJan DollarModerator, RN, retired
Perfect attitude! Also, for many of us we just had to unplug from all the information on the internet, because it is too easy to see ourselves in every catastrophic outcome. Not a good place to be when you need a positive attitude. With every procedure I had, I would go into it with every confidence that things would be OK. Even when I had complications (and I had my share), I just KNEW things would work out. They did.

Be prepared for the worst, but hope and expect the best!

Jan Smiler
Jan Dollar

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