what is j-pouch surgery?

Probiotic said...
Suebear- what do you mean your stools are normal? Surely no-one with a jpouch can have a normal, solid trophy "turd" anymore? I mean, isn't the consistency at best that of paste? Not that many of us with non-remission UC would find that a big deal. Re. 1,2, or 3 steps, my surgeon consultant says I would need 3 on account of being on Remicade and Humira- he says that the incidence of sepsis after surgery is much, much higher in 2 steps compared to 3 if one has been on biologicals.

I didn't know you should have a 3-step if on Remicade. I was on Remicade and had a 2-step (well, should have but I ended up having much more surgery than normal). My surgeon never suggested otherwise

when you guys with the surgery say that you have control of your bowels after the surgery what exactly does that mean? Lets say youre at a baseball game and you have to use the restroom. Can you stand in line for 15-20 mins no problem? Can you hold it for 30mins - 1hr if need be?

Also I think Im more scared of the catherter(sp) than the surgery itself. The thought of a tube being inserted in yea....

Another few questions, how much weight did you lose through the entire surgery process and how long after surgery could you do mediocre to heavy lifting if you wanted to?

if you can hold it for several hours, why do you have to go 10-12 times a day with the pouch? sorry some of my questions might sound stupid but im looking at getting the surgery after summer and want to go in fully prepared.

Is it possible for people with pancolitis to get the J-Pouch"

ellen

Ellen...yes. My son had pancolitis and is doing great with his new pouch. Due to the fact that he was so sick before surgery he ended up with a three step operation....the first one just being the removal of the colon and allowing him to regain his health and get off the meds before the pouch was built.

I'll be 1 year post take down next month, and I feel that I have complete control over my jpouch. I choose when to use the bathroom, which I never thought I'd be able to say in the final days leading up to my first surgery.

I suppose I go the bathroom around 10-12 times in 24 hrs (i never keep track). BUT before you think that this is an unacceptable amount, i should say that before I had u.c., i used to use the bathroom that many times to pee. And I guess I could go less now, I just choose to go when I want. When i'm at work, I sometimes only go once or twice during an 8 hr day (which is way less than pre u.c. days) because the good bathroom has been polluted by customers or fellow workers, or is being used. So i hold it.

Like everyone else has said regarding fear of a catheter, they inserted mine under anesthesia, and I didn't have one during the 2nd surgery. It was only in for a couple days, many say they are glad to have it because it means they don't' have to get up to use the bathroom and allows for total bed rest immediately following the surgery.

As for weight lost, i lost 30 lbs total. This combines the lbs lost after my last flare, first surgery, second surgery, and a week and a half in the hospital for a blockage (which in total took up about 10 months of my life).

Keep your questions coming, this is a life and anatomy altering surgery so be as informed as you can.

Melissa

Doz, they go more often (at least this is my understanding) because the capacity of the jpouch is limited...think about how long the colon is and how much stuff it can hold! Also, the colon absorbs a lot of water, so when you don't have it, your poop contains more liquid, so I assume that means you have more poop total. I think a lot of jpouchers have a BM each time the urinate...I probably pee 10 times a day, because I drink a LOT of water.

I am sort of with Doz79 on this one - I mean in the sense that we both are trying to grasp more what 10x a day (or whatever- either way it is a higher number than I usually have even in my worst UC flares, and about the same as the number of times I go when I drink that giant colonoscopy prep)- but if it is typically easy to hold in for hours even after it starts to get full, I could handle that. I will say that as a male, the "poop when you pee" analogue doesn't sound that thrilling because, of course, we males are used to the luxury of standing up when we pee and getting in and out of there in 20 seconds or so (plus, for people like me who actually wash their hands, handwashing time). And men's restrooms devote much space to urinals, so that some are lucky if they have one stall, which half the time is broken or occupied by someone sitting there for half an hour. However, if one can comfortably hold it for an hour or even a couple even after it feels "full", then I think I'd be golden.

Doz79.... I am not sure how else to explain it. When you are sick with UC and you are going a lot..when you have to go you HAVE TO GO!...as you all know too well. As well there is very often a lot of pain. With a pouch that is new, yes you go often because it can only hold about 50 mls at the start. However, when you get that feeling you can easily wait, for my son, about 30 minutes and leasurely find a toilet or wait until you are finished what ever else you may be doing. When you do have a BM there is no pain and it is quick and easy. With a little time, usually a few months, the pouch stretches so that it hold a few hundred mls. Thus you need to go much less often....the average is 5-6 per day. However, some people still go more often than that and there are some that have fewer BMs. I believe you are misleading yourself if you think you may only go a couple of times a day with a pouch....according to our surgeon this is almost unheard of. Ask yourself how many times a day you pee? Do you know the answer? Having bowel movements with a pouch is the same idea.

3timechamp.....I think it is important that people try everything that they and their doctors feel appropriate before ever heading toward surgery, but some people are very ill with this crappy disease and no amount of diet change or meds is going to help. Yes, there are a lot of less ill people that can get is this disease into remission and I am happy for you if you are one of them.

However, I think you do a huge in justice to make the blanket statement "You can get this disease into remission". This is simply not true. When my son had his colon removed it almost fell apart in the surgeon's hands. The rounds of prednisone that we had been through had done nothing but slowly destroy his body. He is now 7 month's post having his colon removed and he is doing GREAT. He is completely healthy in every respect.

No one takes surgery more seriously than those that are contemplating it and no one enters into it lightly. They are agonizing over the decision and need to gather as many actual facts as possible.

I apologize if I come across harshly, but these people do not need to read statements like that.

I absolutely agree that no one should rush into surgery. I was bothered by your blanket statement "that this disease can be put into remission"....that is most certainly not always true. You can also see from my earlier post that I agreed that 65 % of people do not need surgery. However, FOR SOME it can be dangerous to wait too long. I truly believe that if we had waited longer my son would have been having surgery under emergency conditions which is very serious.

I think we can agree to disagree. I just want people to be fully informed long before the need MIGHT be there. I also think that most GIs will not rush into surgery....the colorectal surgeons yes....they want to get you while you are as healthy as possible.

I am sorry if I have offended you.

Hey guys,i just want phyrne72 to understand that at the first sight of U.C you don't just jump to surgery. Phyrne72 still hasn't posted on what there symptoms are,i wonder are they bleeding badly or is it just a little bit of blood.Or is it just alot of D-,alot of inflamation?

I think it's good to be as informed as possible about ALL of the possible treatment options, including surgery, when you are first diagnosed. That way, when you're in the midst of a really bad flare and have to make a decision about what course of treatment to take, you've got the information you need to do so. So that's entirely possible what the OP is doing.