Hi I'm new to this site and was hoping to get support from others who are or have gone through similar problems. I'm 30 yrs old and have had a pouch for 11 yrs now. I have tried desperately to hold on to it, only to end up with a rectovaginal fistula that never closed. 2weeks ago I went into the hospital to do the very thing i feared for years and that is to get the perm ileostomy. Physically I am healing fine but emotionally it has hit hard. I don't feel pretty anymore and have a hard time looking at myself in the mirror. I'm apprehensive about this whole situation and almost wish I would have just continued to live with the drainage of the fistula. Has anyone had to give up the pouch and settle for a perm ileostomy? I pray it gets better because I feel its just as difficult as my broken down pouch and demands just as much time and attention.

I'm not in your situation, but there are several on this site who are and who will I'm sure respond with great support for you.

I wanted to point out on this site there is an ostomy and skin section where you may find support... also to let you know there's a great support site at United Ostomy Association of America at www.uoaa.org. Best of luck to you!

Hi Kara,

I'm so sorry you lost your pouch, but don't be so hard on yourself - it will take time for you to get used to your new body - it is a big blow and will take time. Shell and Jill on this site both had to go to perm ileos and now are living very happy healthy active lives. Jill has even had a baby with one on the way with her ileostomy.

I have had 2 pouches fail and done everything I could do to try and save them (9 surgeries and too many tests to count!) - but to no avail. I am scheduled for a perm ileo next week. I am finally ready - I can't even stomach the idea of another test - plus I really don't even have the option. And it is been very hard for me to accept this - especially the body image issue, I have the hardest time in the shower or bath, alone with my naked body - but all the reassurance from Shell and Jill and even Kerianne who is getting her perm ileo the week after me.

Just try to focus on healing, taking it one day at a time and just look forward to feeling good and being active again!

Please PM or e-mail me if you want to talk or need any help or reassure!
Warmly,
-Mikaela

Hi Kara,

It's only natural that you are feeling like this. You are grieving the loss of your j-pouch after putting up a huge fight to keep it. I spent 8 years and as many operations trying to save mine so I know what you are going through.

However you will get your self esteem back when you get more confident with your stoma. There really isn't anything you can't do with your stoma that you could do with your pouch. You'll still be able to wear the clothes you love and there's some really pretty and very sexy underwear out there for those intimate moments.

I've had Wee Willie (my perminent end ileostomy) for 4 1/2 years now and for the most part I forget that I even have him. I still wear my stretch jeans and close fitting tops and I still do all the things that I did before and more because I am feeling so much healthier now. I can eat what I want (in moderation of course) and I can go anywhere without the fear of not finding a toilet in time.

If you need advice or encouragement, or just a shoulder to cry on then please feel free to PM me. There are lots of people here who have gone through losing their j-pouch and we are all here to help in any way we can so please don't hesitate to ask.

Take care.

Shell

Kara, I'm so sorry you are struggling. Obviously, you've had a major change to your life and you can't be expected to adjust to it right away. Give yourself some time to get used to things and don't expect too much too soon.

I think once you start feeling better physically, get a good appliance system going and are able to start doing some of the things you haven't been able to do, you'll find acceptance comes then too. And, over time, you'll find that living your life is a great thing and the ostomy isn't such a big deal (I know it's hard to think of now).

I was 30 when I got my perm ileo (after 3 1/2 years with chronic pouchitis) with a disconnected pouch. I got worse and 18 months later I ahd the pouch out and things have been great since. As Mikaela mentioned, I got pregnant after my pouch came out (through IVF) and my son is almost 2 1/2. We tried again in November and I"m due in 4 weeks. The ostomy is a non issue in my life, except that it made me healthy and allows me to do what I want to do. After years of being restricted unwillingly, that is a beautiful thing.

Hi Kara,
I'm sorry to hear that you have been struggling with your ostomy. That being said I would like to recommend another site, much like this one, but deals more with osotomies. The group that is there is great as is this one and there is lots of support to go around.
I hope you are able to get over your new feelings and realize that no matter what, you are still the same person all along!
Julie
www.ostomates.org
Shaz's Ostomy Board