After a failed first attempt at a j-pouch due to a leak/ sinus tract/ abscess, I am a little over 2 months out of surgery in which the old pouch was removed, a new pouch created, mucosectomy, and reverted back to temp. ileo. I was miserable at first, as there were complications with the stoma, and daily leaks; but now, the wafer is holding 8 days at a time with no peristomal irritation whatsoever. I have just discovered that I can eat fruits and veggies (with precautions) that I never could eat when the pouch was "working" because it burned or created fissures passing through. I have no abdominal cramping from gas, etc.

So, I'm thinking of just keeping this ostomy, at least for a year to see how it goes. I would like to potty train my son this summer instead of spending the time recovering from another surgery.

What do you think?

By the way, I have never done any water activities (swimming, etc.) with an ostomy. Do you have to change it more in the summer? Is it an issue for you?

Thanks!!!

Hey there. I had step one of three in August 07 due to UC. I've essentially made the decision to keep my end ileostomy. It gives me no trouble, I'm healthy, and frankly don't relish going under the knife twice more, after have numerous complications with my colectomy (clots, cellutis). I can do everything I want, and wear what I want. For me, the devil I know is better than the one I don't know. But, that said, it's SUCH a personal decision, as you know. What's right for me, may not be right for you. I wish you the best in making your decision.

Jane

Timing is everything with a surgery. If you have the option of planning a time to do it then you should do it when you feel ready. I waited to have my pouch removed until my sister was going to be here all summer with me so that she could help with my young son. I think you will be happier getting to work on this milestone with your child and not worry about your bum for the time being. I usually make the mistake of thinking recovery will be quick because I never remember how awful it was. Do what you want, don't feel rushed if you are happy for now.Good luck with potty training...that's my lot in the next few months too!

Sorry I didn't respond to the water changing question. I do few water activities but I have been swimming and just changed the wafer after going. Some people say that if they sweat a lot then they have to change more often. So the Georgia heat might play a roll in your changes.

When I vacation, I swim and hot tub daily (Saturday can't come soon enough - we're off to Disney!!!). I change every 2 days instead of every 3 when I am in the water a lot. Otherwise, I don't do anything different. Oh, sometimes I choose to wear a closed end bag to prevent the possibility of a clip letting go - which has never happened, but you don't want it to happen in a public pool, right?

My ostomy is permanent and I find it so much easier to live with than my problematic pouch. I have a 3 year old and 7 month old and I have no issues doing everything I need and WANT to do with and for them.

Faith, I totally get what you're saying. I'm kind of in the same boat. I'm really dreading another surgery and really dreading more problems. We're going to be potty training in our house soon too and I don't want to be running to the hospital every other week. It's a tough decision. Really tough.

We are about to go on vacation and I'm really nervous about the swimming thing. I'm hoping that I can get by changing every 3 days instead of every 4 (which is what i do now). I'll let you know how that goes. Wish me luck!

Faith;

I recently had my J-pouch taken down, and a permanent illiostomy with my rectum taken out. I too was in your situation all of the years with UC, then a J-pouch. What a horrer story, fistulas, blockages, you name it, miserable, leaking in the anas when I had the J-pouch, until I wanted control back into my life. I made the decision to go permanet in November 2008. I have my life back totally, sure I have to change the appliance, it sure is quite a relief then what I was dealing with. As far as the surgery and recovery, I would wait until you can potty train so that you dont have to deal with two things at the same time.

Good Luck with your decission.

Cheryl

Faith,
I'm sorry things have not worked out the way you had planned.

I will say that I went in for the j-pouch surgery last June. We couldn't make it work at that time so my doc made an end ileo and left part of the rectum so we could try to do the j-pouch later.
In the almost a year since I have been able to remember what living is like again. I've have chosen to keep my ostomy. I took my puppy hiking today. I can't tell you the incredible-ness (I know it's not a word) of this.
1) I've waited for years to get a dog. I could barely take care of myself and my UC for so long. After 14years I accepted what I thought of as the horror of "the Bag".
2) For those 14 years there have been few long walks and non of them strenuous.
Now I think of it as freedom.
I have one more surgery. The stuff we left has to go.
But today was just a beautiful day. Blue sky, new spring wild grass, a happy happy dog, and me hiking up a mountain.
Jane and all of the other ladies are right.
It's such a personal decision. I had wished someone had a crystal ball I could look at.

Whatever you do-
God Bless.
Best to you and your potty training cutie kid.
L.

L.S.

You are so very right about getting out there walking your dog, enjoying the longer walks, having a permanent illiostomy was the best thing in my life after J-pouch and all of the problems I was having with it, incontenence running to the bathroom and shorter walks, I should say fewer ones. Life is good again, enjoying the outdoors without having to run to bathrooms.

Cheryl

Isn't it funny how God prepares us for things.... for years, I have thought an ostomy would be the worst thing ever. I was steroid dependant, had blood transfusions, tried remicaide, and endured crapping my pants on occasion for years in hopes of avoiding this surgery.

I hated my ostomy the first time. This time, it was awful in the beginning; but recently, as I stated in the original post, I have become very comfortable with it and was feeling very healthy... until.... I had a CT showing an abscess at the end of March. When they went in to drain the abscess, they found that the pouch was almost completely detached at the suture site. Probably, I will end up requiring a permanent end ostomy because the pouch may not be able to heal, and I am certainly not going to try for a third pouch after going through all of this crap.

If I had not already made peace with an end ostomy in my mind before this latest complication arose, I would be going completely over the edge right now. But, somehow, by the grace of God, I made the decision on my own without feeling that it was forced before this storm hit.

I have to wait 6 months before my surgeon will do anything else because he said that my body has been through too much in a short time and needs time to heal and grow stronger. I can't wait to get the pouch out and the end ostomy formed so I can stop living this hell of worrying about what the next complication will be.

My, goodness, this is some journey! Thanks so much for your encouragement and support!

Faith,
I hope if I need to have a permanent ostomy (I'll find out next week) I will have the strength and grace you have shown here. You are an inspiration. I wish you well.
KC

Hi Faith,

There is something gratifying about being able to make that decision yourself isn't there? Liked you I fought for years not to have an ileostomy but in the end I welcomed it with open arms. Wee Willie gave me my life back. I may still have the odd complication but that is due to having had so many surgeries. My only regret is that I didn't do it sooner, but then I wasn't ready before then and would probably not have had the same attitude towards Wee Willie if I had done it earlier. You know you have all our support here when the time comes. Personally, I don't know how I would have coped without the good people of this site cheering me along. They are part of the reason I had made my peace with this life-changing decision.

KC, good luck with whatever your outcome is. Please let us know how things go next week.

Luv & hugs

Shell

I know this is an older post, but i came upon it as I was looking for something else and wanted to say that even though my ultimate goal is to have a jpouch - after the past two weeks I can see myself saying enough and ending up with permanent end ileo. I just had step 2 and then had bad fluid build up with infection and back in hospital. Now a butt drain ( which hurt putting in worse than the dickens) and a tricky leaky ileo and still one more surgery.... But like Shell said it is "gratifying" to make that decision for yourself.

Thanks all and i hope you are doing well Faith