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13 replies

Advice

T ThommoMember
Hi

I'm new to this site (and forums in general). I was hoping to get some advice to help me come to my j-pouch versus stoma decision.
To give you a bit of background I am 36 and live in the UK.
Having been previously very healthy and fit I got UC out of the blue in 2011. I suffered with the symptoms for a year quite badly including a couple of hospital stays. Medication didn't make any difference. I ended up having a total collectomy and stoma formation in 2012. Things have been good since then and I am fit and well now. I am also married to a wonderful woman who has supported me throughout as well as having two great young kids. I have also done well in my job over the last couple of years.
I (and my surgeon)now feel that it is time to decide on whether to go for a j-pouch. My basic for and against list is:

FOR
More confidence in my body image
Less worry about bag leaks (occasionally at night and once at the gym - how embarrassing!)
More likely to go on foreign holiday with the family
Would allow me to swim with the kids
I can better fulfil my active lifestyle
I wouldn't have the 'what if I had gone for the J-pouch' question in my mind

AGAINST
Risk of pouchitis
Risk of bladder incontinence
Risk of erectile dysfunction
Soreness around the backside

I was put in touch with someone by the stoma nurses who had a very positive experience. However, I am also aware of a friends relative who had a very bad experience and went back to the stoma.

So basically I'm after others experiences. Did anyone have similar dilemmas? Was it the right or wrong decision? Was life any easier or harder afterwards. In particular I would be really interested to know about pouchitis. Is it as bad as UC (I had really bad urgency and was averaging 20-30 toilet visits over 24 hours).

Sorry for the long winded post.
Original Post

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Scott FScott FMember
For me it wasn't a dilemma - it was important to at least try a J-pouch. Since then I've taken up martial arts with my daughter (and now I teach Japanese jujitsu), become a scuba diver, and gotten back a healthy life. And that's with much worse than average pouchitis.

Pouchitis is usually easily treated with a couple of weeks of Cipro or Flagyl. Less commonly it needs more constant treatment, so (for example) I'm on antibiotics all the time, but other than that am quite healthy intestinally, and eat whatever I want. That's quite a bit different from the prednisone I was on before the surgery, which barely worked but had terrible side effects.

Good luck with your decision, and welcome!
BillVBillVMember
Thommo, welcome to this forum. I originally had a j-pouch at your age and was first advised to have an ileostomy, which I did not want for reasons similar to those you list as “For” a j-pouch. Although I never had pouchitis, I did have some of the complications experienced by some j-pouchers, such as frequent BM’s, anal irritation and some leakage. However, I adapted to these things and kept my j-pouch for 30 years, still not wanting to go on the bag. I was able to enjoy activities I enjoy including alpine skiing, equestrian competitions, hard labor projects, traveling, swimming and experiencing intimacy.

In my opinion, I would opt for the j-pouch, since once your anus is gone, you can never have a j- pouch. There is a very high satisfaction rate for j-pouches. However, if it does not work out well, you can always have an end ileostomy or a continent ileostomy (k pouch or BCIR). If you opt for the j-pouch, I suggest you have a manometry examination beforehand to determine whether your sphincter muscles are strong enough. Kegel exercises will strengthen them.

Best of luck with your decision.
Bill
T ThommoMember
Thanks.

I've had the tests and the muscles back there are working well.

I think deep down my worry is that I feel that I have a lot of control over things with the ileostomyy/bag. It has also got me feeling well and enjoying life again. I fear that if the j-pouch doesn't work then I may lose that control and go back to a life similar to UC.

However, if I don't try then I guess I will never know.
lholdemlholdemMember
Hi thommo,
Not being a man I can't relate to some of your jpouch fears, but I can tell you that even with pouchitis, it has still been much more in control than my UC. I do nearly everything without worrying about accidents anymore - at the most some discomfort from a delayed bowel movement. I would say at least give it a try - I think you won't regret it.
rachelravenrachelravenMember
I was 19 when I had mine constructed. It was a nonissue at that age: avoid the bag. THOUGH after having my loop ileostomy then, I told myself not to ever be afraid to go back to it. I didn't think it was awful, but was glad to avoid it.

I am not a person often afflicted with pouchitis through my (wow - in a day, my pouch will be 24 years old!) years. I did develop a fistula and a murky new IBD dx, though. *shrugs* Things are still better than They ever were with UC, though I was a child afflicted, who, while ill was never "sick" with UC. Never had pain, just multiple bloody poos.

At 24 years:

-How many times do you have to empty (day and night)?

Day, 4-6. Night, usually none. Sometimes one.

-How long can you hold on for when the urge comes?

Long time. Not good to, but I can.

-how long after the operation did it take to settle down into a normal routine.

Takedown for me was May 15, 1991... I was in full time nursing school also working 24 hours a week that September, so pretty fast for me to be out there and "normal." Or, my new normal. Smiler
J Judy1Member
You should know that having an illeostomy should in no way stop you from doing anything you want to do. Send a PM to Jill M, or Shell they will be able to help you a lot. Jill and Shell have done some amazing things. Jill has had 2 babies and done all sorts of things with hers. I myself have been very fortunate with my pouch. It is quite an adjustment but well worth the effort in the end. You will always "go" more times a day than those with a colon but it is easily controlled. Good luck with whatever you choose.
S ShainyMember
I am 37 and currently have the loop ileostomy. waiting for a small sinus to close up before having takedown.

life is fine with the bag. as you say the occasional leak but it is generally managed fine.

I participate in all sports that I did pre surgery.

I have a lovely girlfriend who has been very supportive.

the image of the bag isn't a big deal for me at least when I am with friends. I am a bit conscious of it on holiday and won't walk by the pool/beach topless and I don't swim either.

Anyway I went for the jpouch surgery and fingers crossed the sinus will heal (scan in 10 days) and I can have takedown.

I've managed very well with the end and loop ileostomy so if things don't work out with the pouch I can always go back to that, although I do realize that its not as straight forward as that. Hopefully I wont get any chronic pouchitis or other complications but if I do so be it.

looking forward to life without the bag, even though I can carry on as I am now with the bag and have a vey good quality of life..
Paul HPaul HMember
I'm 5 months post takedown, it's been a rough ride & I questioned my decision but for the past 4 weeks have really noticed an improvement, currently 8 BMs a day with 1 or 2 at night, eating & drinking all sorts without too many problems, walking in the mountains, working on the olive farm & a bit of construction work. I'm very happy with the way it's going. Keep a positive attitude & be patient, good luck.
Paul
ATXGuyATXGuyMember
I had my takedown on Oct. 27th of this year.

In the last two weeks or so, everything seems to have settled down quite a lot (though I still keep looking up, waiting on a shoe to drop). Generally, I sleep through the night, waking and needing to go between 6 and 8 am, after going to bed and emptying around midnight. Generally, though I have to go immediately on waking, it's not a "shoot out of bed and rush to the bathroom" feeling, more of a "guess I better get up and handle this" feeling.

During the day, I usually empty on waking, and then again after breakfast. Sometimes, but not always, after lunch, after work, after dinner and then before bed, so between 4 and 6 trips to the loo.

I'm still in the adjustment stage, so it does vary somewhat, and if I know I'm going to be out and about for a long while, I'll pop an Imodium, more for piece of mind than anything else.

I did have some issues in the few weeks after takedown, and a scope at the start of this month showed minor inflammation at the site of the anastomosis that was causing pain. My surgeon put me on a thirty course of cortisone suppositories which seems to be doing the trick nicely; I've had no pain at all lately, and while they're not my favorite thing to use, they're easy enough to insert.

There is an adjustment period, but for the last few weeks I've largely been free of butt burn, have never had issues with leakage (knock wood), and am lustily expanding my diet.

I went from diagnosis to colon removal in less than a month, so I didn't suffer as long as many others with UC, but I much prefer living with the J-Pouch to the time I spent with both my end and loop ostomies.

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