HI folks,
I am considering a permanent ileostomy. I now I don't suffer some of the problems like fistulas and so on that some of you have had, but I am sick of 8-10BMs night and feeling tired all the time. It has only been 4-5 years since I had a year with my ostomy but I have forgotten so much.

Can I ask you some questions...
Do you think you can manage a bag while camping for a week or 2 without showers? I seem to think its possible but am I being delusional?

Is it easy to conceal your bag for swimming?

Can you have baths with your bag on?

How much do you get up at night to empty it?
I think I used to have to empty it once a night.

Can they make your new stoma at the old stoma site?

I look forward to your advice.
I think I will have a better QoL with a bag somehow.

Hi Saff,

I don't have a permanent ileo, but I did only recently trade in my end for a loop so I remember it well.

1. I don't see why you couldn't go camping. It would be a little bit of a hassle, but certainly do-able, especially if it was a few months after surgery when everything had healed and the swelling had receded. (I could usually get 5-7 days wear time, so you would likely only have 1 or 2 changes, although you might try to wash it a little bit unless you have been swimming a lot to keep the major dirt off.)

2. I go swimming all the time and nobody has ever guessed I had a bag. I do prefer a 1-piece pouch as it lays flatter against my abdomen, and I do feel more comfortable in a 1-piece bathing suit as well.

3. If I couldn't take baths my life would be miserable! Of course you can take baths as soon as your incision has healed sufficiently.

4. I used to get up 0-2 times a night to empty, depending on what I had eaten.

Good luck with your decision!

Hi Saff,
Just to add to Saff, yes, I had my stoma placed at the same site both times with no problems....

Thanks Lorsall, and Diane,
I am going to meet a stoma nurse tomorrow to talk it over, find out about new supplies etc. She is in her thirties too so I think it would be good to talk to her. I don't even feel well enough to work at the moment. I am just sleeping alot. So feel like the decision for an ileo is looming.
Thanks for your support.

Hello Saff

My stoma is in the exact same location. The surgeon said before the surgery that he would try to put it in the same place.

I usually get up only once at night to empty, like clock work at 4:00 a.m. Sometimes I sleep thru the night, just depends on how late I eat.

More importantly, life is good again, I wouldn't go back for anything! Good luck to you!

Saff,
Feel free to PM or email me I have a perm now after 7 years with UC and 14 months with a failed jpouch. I love it and the freedom it has given me!

THanks everyone for your feedback, After debating the decision over some time I am now booked for per. ileo surgery next wednesday and I can't wait! Im sure ill be back on this section browing your wisdom with stomas. Bring on a better life!

I love my ostomy! Well, I have a loop now, but I had my end ileo for 6 months. Best 6 months I had in a long time!!!
1. My wafer stays on longer when I don't shower every day, so I'd say yes to the camping!! I actually emptied my bag in the woods one day b/c there wasn't a bathroom around!

2. I tend to be a bit extra modest with swimming anyway, but I wear a 1- piece w/ board shorts so I can wear a regular bag.

3. yes to baths! I love, love them. Ditto to waiting until the incision heals. I think your surgon could tell you when you can soak in baths.

4. I usually wake up once in the middle of the night. Only a couple of times did I make it through the whole night without getting up.

Sounds like you have a great attitude about all this! You'll be so happy to be healthy again. Nothing better in life then having good health. Best of luck to you!

Hey folks, Thought I would update - it is now 2 weeks since my surgery. I am doing well. My qual. of life has already improved with getting good sleep, and having a much broader diet. I have a pretty flat stoma which outputs right next to my skin so I am trialling different products to minimise the leaks. I am happy I did it.

Saff, I'm so glad to hear that things are going well. You should try a convex bag, and perhaps also Eakin seals (the slim variety). Good luck

Great to hear!!

My stoma was partly flush to my skin after my first surgery. This is a lifetime thing. So I went back and had the surgeon revise it, get it done right. Glad I did. Now its perfectly round so I can buy precut wafers and it sticks out an inch so I no longer have skin problems.

Maybe yours will change as it heals.

But don't settle for their mistakes.

Best to you.

HI Winnie, how long did you wait for redo surgery? Was it a complicated surgery/ recovery?

Waited 3-4 weeks, working with the ostomy nurses during that time. With skin issues that were not improving I went back to the surgeon so he could see his mistake. He owned up to it and scheduled a revision.

It was a easy compared to the first one. 60 min surgery. Just had to stay one night in the the hospital. Took 4-5 weeks for the skin seal to heal around the stoma. Only missed 4 days work.

This message has been edited. Last edited by: WinniethePooh,

So happy for you Saff! I am 4 weeks out from having the perm ileostomy, and feeling great. I was surprised to hear that your stoma is flush with your skin. Mine sticks out some, and I haven't had any issues with my skin. Hope it all works out.
Ann