J-Pouch surgery questions

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Micheladelfina

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I currently have an ileostomy (hopefully temporary) after having toxic megacolon as a complication of my UC. I am going back to visit the surgeon in a few weeks to talk about the possibility of reconnection via a j-pouch. He wants to make sure there isn't a Crohn's component to the UC before deciding whether or not to perform the surgery. I am keeping my fingers crossed that reconnection is possible, and so I have a few questions about this procedure.

I've heard that the recovery time (both in the hospital and at home) is longer for this surgery than for the creation of the ileostomy (mine was done on an emergency basis, so I have a pretty big incision) because it is more invasive. Is this true?

Once the pouch is created and one is able to start using the bathroom "normally" again, does it hurt?

I've heard that continence is a problem for some with a j-pouch. I realize that using the bathroom will be a more frequent procedure (6-8 times per day), but are you able to "hold it" until you can get to a bathroom or is it difficult to do so? And is leaking during the night a problem?

How common is pouchitis after getting a j-pouch? Any other major complications I should read about?

Please feel free to offer any information on any or all of these questions, as the doctors can only report to me what they've read about. I want to hear it from people who have been through it. Thanks!
 
Hi. Firstly i have a question for u. u say the doctor wants to make sure its not crohns related. Um my surgeon said that (I have UC) if it was crohns, since there is only a small difference in looks and sometimes cannot be detectedfrom a colonoscopy that as soon as he was inside of me, would be able to tell if i was for some reason misdiagnosed. could your surgeon not tell what was the deal?i am just wondering.

for me it took very little hospital recovery time. for the first surgery i was in for around 8 or 9 days, and for the reconnection of the j-pouch i was in about 5 or 6. usually once you start eating again, and have gone to the bathroom they pretty much let you leave. i had some nausia post op and threw up alot of bile on a couple occasions, but they reassured me that this was nothing unusual.

once home the recovering for me anyway was easier because i didnt have to worry about my bag leaking and my skin irritated and such.the only problem is, since not using my butt for about 7 weeks, and then begginning to go the bathroom frequently it caused a bit of irritation. but nothing a little lotion cant fix. actually I got a nice medicated lotion the surgeon told me to get called Calmoseptine ointment, which you can get at the same place you got your ostomy supplies. another trick would be to put a cotton ball "up there" after going to the bathroom as it obsorbs moistore and helps with burning. i found it also helpful the put some of the ointment on the cottonball for added comfort.

I am able to hold going to the bathroom. I know for some people the results may vary, like if they accidentally cut a nerve, or just because they say the sensation is different. but i havent found it to be a problem i think because having colitis made me used to going to thr br so much.at night,on a bad night i will get up 5 times, but on a good nite 0-2. I havent had an accident to date, and my surgery was in early october.

pouchitis is common, but not a huge deal. my surgeon told me that if you get it they give you flagil or another antibiotic and thats how they would treat it, but it is nothing to get extremely worried about.signs of this include:more frequent trips to the bathroom, pretty much a liquidy substance, and bleeding in the stool. also a fever and severe stomach pain.

I dont think there are any real major complications to worry about except maybe the precautions u could take for any surgery. but one problem i have faced is a stricture. that means that the j-pouch has narrowed, and it resulted with me feeling extremely sick and going to the bathroom about 25 times a day. first they will look inside of you to see how the pouch is doing, and if you do have a stricture they will knock you out like u were having surgery and then use a balloon tool thing and blow the pouch back up. after they did that to me i was in bed for a week and feeling rather crappy, but that was about a month ago and now i feel like a miiiiilllion times better.i go to the bathroom less frequently(on a good day 5-7 times). and i can actually eat without feeling extremely awful. last week i went to my surgeon who said he probably wouldnt ever even have to do that again. so it is worth it even though its pretty painful in the meantime.

other things i can tell you is stay away from salad and lots of raw fruit and veggies. a little lettuce on a sandwhich or some raw carrots or peaches is ok, but basically like my surgeon told me, if you eat a whole salad, you will "poop your brains out". ive found really rich things like peanut butter bothers me, but i can generally eat watever i please. i know that it is different for each person wat u can and cannot eat.

also my gastrologist said that things such as benedril(sp) will relax your bowels. i found that out a little to late, as i had been taking it to help me sleep. and i noticed the nites i was taking it i was having to get up more.and i havent taken it since she told me that a couple of weeks ago and ive gotten up 2 times at the most since then.

i can also say that it is easier to get weak and run down after these kinds of surgeries or just havin ibd ingeneral as im sure u already know. so what im trying to say is, eat healthy sturdy meals. either 3, or 6 smaller ones which are supposed to be easier to digest but i have yet to try that with school and all. but i would say it is better to eat good sturdy meals,because its not liek we have to worry about gaining weight. boy i have lost a ton, and ive always been skinny to begin with. also if you feel tired, rest if it is at all possible. if you dont there is a better chance of getting sick. also drink alot of fluids since you dont have a colon to keep the fluid you need extra. drinking a bottle of gatarade is a good idea, and lots of water.

burning can be a problem at first so you might want to avoid spicy foods like buffalo sauce and things with lots of spices. nuts,popcorn,seeds, and also sodas can cause burning. altho i drink sodas and i dont have a burning problem with them, so yet again its the individual who will have to find out.

thats about all i can think of right now, but if u have any other questions or anything just post them and im sure i can at least tell u how it was for me! haha.hope this helped at least a little! =]
--Jen
 
I think there are some complications from j-pouches and thiss is why many surgeons dont recommend or go near it. Thats why the regular illiostomy is used first in most cases. I understand the want of the j-pouch, because its internal...obviously there are benefits to the patient. But we should be thinking of our health also.
 
umm i have a jpouch and havent had any complications...from what my surgoen said that about a year after u have a jpouch surgery u will feel so much better u wont even know what happened...i dont think there r many complications.but thats just from my personal expirience from havin a jpouch.
 
and i think i know what u are talking about complication wise. they usually start with an illeostomy so ur pouch has time to like get bigger and stuff. and if they think the loop is to tight of a fit then they will do the ileostomy first because then u will only have it for about eight weeks instead of forever. but as far as i know(and i had a very thorough meeting with my surgeon about this) theres not any major complications with a jpouch.
 

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