J Pouch Information

Alright people,

After some information about J Pouch Surgery. I suffered for 2 years with UC which led to emergency surgery to create temporary illeostomy with view to create J Pouch.

I had sub total colectomy on 20th Novemeber 2014 and have been told that I have to wait 1 year as my surgeon likes things to settle down.

Meeting surgeon again in October to discuss dates etc. but would like to know the following...

How long is recovery time? I'm a teacher so don't want too much time off?

How long are you in hospital for?

Is it odd that I still have anal discharge almost everyday even tho I've got temp illeostomy.

Is J Pouch better than Illeostomy?

Thanks

Whether or not a J-Pouch is better than an Ileostomy is based on its outcome, which varies from each individual patient. At times mine makes me feel suicidal, something that Ulcerative Colitis and my Ileostomy did not. You roll the dice and take your chances........

Marianne, that's your opinion. Mine is that anything without a guaranteed outcome is a gamble, and j-pouch surgery is hardly a small one.

Which is better is a personal question. Some people really like having the ileo. it's predictable. You know what to expect. I would imagine you want something else if you're even considering an additional surgery. The problem is that you need 2 more surgeries to get to a j-pouch. I don't' think you should let this deter you if it's what you want. I understand that what byebyeUC says is true but it's also true that the results with a pouch vary. Some people go 4x a day, others go 12x a day. You do not know which will be your outcome until you take the plunge. Would you rather have the ileo or go 12x a day? Of course, I am sure more people go 6x a day than 12x but in reality, 6x is quite a bit. Pouches can have complications like pouchitis or chronic pouchitis. The ileo is pretty straightforward but you have to buy supplies and it limits what you can wear. Hiding bag isn't easy. The reason you have anal discharge is because when you have a 3 step, the leave the rectum. They remove it and construct the pouch during step 2. Really, if you have that going on, it may mean you have inflammation in the rectum and you could probably use canasa or rowasa to treat it. If you wanted to make your ileo perm, you would probably benefit from having the rectum removed at some point, so you would be looking at one surgery regardless of what you decide. The pouch would just add one more. The bad thing would be if you went through all that to get the pouch and then you didn't have a good result and you had to go back to the ileo :(

Also if looking at surgery for next May... would you be considering not going on summer holidays next year and maybe look to go possibly in October 2016?

I think you would know if you already had a jpouch. You probably have an end ileo after emergency colectomy without a jpouch.

Jpouch is definitely a gamble, but the odds are in your favor, if you buy the statistics. about 10% of pouches permanently fail, requiring the patient to transition to an ileostomy. What this does not consider is the number of people who accept a lower quality of life with the jpouch because they don't want an ileostomy or don't want to go through more surgery in order to return to an ileostomy.

Personally, after 3 months I am discovering that the results I have are far lower than expectations I was given about frequency in the bathroom, continence, requiring medicines, and pain.

My recommendation is to consider whether you are happy right now with your quality of life. If the answer with that is yes, I do not think it is worth endangering that. If you feel unhappy with being an ostomate, you should try the jpouch but understand that it is a long process (years) and you need to prepare yourself for all the difficulties and long term risks that could come with this. Again, if you really want to get rid of your ostomy, go for it.

If your surgery was done on an emergency basis, it will probably be a 3-step. However, if you recover sufficiently you can ask your surgeon to perform the next two steps together. Just know that the decision is ultimately your surgeon's, not yours. He/she takes into consideration your health; use of prednisone, and other medications. Trust their decision, it's in your best interest, not theirs.

Sue

I'm not actually sure what quantifies a pouch failure? I don't think my frequency is unacceptable, nor am I incontinent, although I do have frequent leakage in small amounts. However, the discomfort I have is MASSIVE and the days when I enjoyed eating, or ate a "proper" meal, are just a fading memory.
Marianne; it's no use splitting hairs over this, our opinions differ, and that's that. I didn't think the Ileostomy was unacceptable in any way. I know there are an unfortunate few that struggle, and to that end, think that surgeons should be spending their time perfecting that procedure, and less on the j-pouch, which I believe has the potential for far more misery.

Thanks for all your replies, I speak to surgeon in October so see what he says then.

Living with stoma ain't so bad but think the surgeon did it temporarily for a reason.

Again, thanks for all advise

Plout

Are you happy with yours?

I can have surgery in November as surgeon wanted to wait 1 year to let bowel settle.

Hi TeacherAxel, yes I'm very happy with my outcome. I'm a medical student now and my pouch doesn't get in the way of anything I need or want to do.

Pluot, I think you're referring to the "Would you repeat the surgery?" question (there's also the "would you suggest to someone else," answer being 98% yes). I find the question objectionable because it wasn't clear whether patients are indicating that they would go through colectomy again or whether they would get a jpouch again. Given the ambiguity of the question, I would question its value. When I was considering pouch surgery I did not always distinguish between colectomy and pouch surgery... the reason being that jpouch was the only option seriously presented to me.

Axel: your stoma is NOT necessarily temporary. It is the same as any other end ileostomy. A stoma only becomes permanent once the natural route of exit (the anus) is closed. You could chose to have your rectum excised and closed, which would make the stoma permanent, despite the operation not touching the stoma at all.

I keep hearing the "you can always go back to a stoma" argument. While this is a true fact, the suggestion is pretty bonkers. The misery and significant damage to your body means that this is not a trivial decision. After j-pouch excision there will be significant adhesions. You run the risk of sexual and urinary dysfunction, and you will be losing another 50-60cm of ileum in addition to the colon you lost. Don't go into this with the thought of returning to a stoma. You need to be very determined going into pouch surgeries.

Everyone has to make a decision for themselves, but I wish that I had had the chance to chose to keep an end ileostomy. Because for me, being happy and healthy is enough. I don't really care about having a bag on belly, or what others think about it.

Just got back from holiday so going to get in touch again on Monday. See what he says.