Seeking Support for Post-Ileostomy Fistulas

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spiceseller

Hi
I have two post-ileostomy op fistulas.
I am very interested in contacting anyone else with the same problem.
I am struggling to cope with them and would love some advice, and perhaps to swap some tips on how to manage them.
Thanks

Michspo
Hello!

I too am new to this. I had my ileostomy 8 weeks ago and I'm having a hard time dealing with it as well. In my case, my stools are very watery, no matter what I eat. I cannot gain any weight. I lost over 40 pounds and gained a whole six pounds. I look like hell. All my clothes just hang on me. Leakage hasn't been too bad, as I change my bag every three days.
I had two abscesses on my colon and then a fistula, which is what prompted my ileostomy. I have been told that the abscesses started because of something I ate in Mexico, then I was told I have diverticulitis and then Crohn's disease. I am so lost. I do cry a lot. I am so weak. So you are not alone.
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wend

Hi all, I've just found out that bicarbonate of soda is good for keeping stools firm!!!

I've had my colostomy for 4 years (due to cancer) and had to have a liver resection in January this year as it started to spread. Recently, I had cystitis and used bicarbonate of soda to ease symptoms. Really good stuff!! x

spiceseller

Hi
Thanks for the posts.
It's good to hear from a fellow sufferer. I really know what you're going through, especially the bit about the clothes hanging off your body. I just can't seem to put any weight on. I look so thin. I hate looking in a mirror. My self-esteem is very low at the moment. I think the worst for me is that I constantly feel dehydrated. I just feel thirsty, but when I drink, it literally spurts out almost immediately from my fistulas. So, I dare not drink too much, as if the bag leaks, then I'm dead, as the fistulas during the day are deadly. My dream is to drink a huge bottle of lemonade all at once, one day perhaps. The only window I have to change the bag is in the morning when I get up, as I haven't eaten anything and they are relatively inactive. So, I can change the bag reasonably well without having to deal with an erupting volcano all the time. The real bummer is that the damn bags, no matter what method I use, always leak after a day or a day and a half. So, I literally have to change every morning. The stoma bag stays on for two or three days, but I generally change after two as I get itchy.
Slowly getting into a routine, but it's hard to come to terms with the fact that you're never going to be what you were before.
I cry a lot too. I have lost control of my emotions. I just sometimes spontaneously burst out in tears. It's hard to explain to people who don't understand.
Thank goodness for the local stoma nurses. They're brilliant. I don't know what I would have done without them.
I'll try bicarbonate of soda, but I hate the taste. I would love to know how to hide the taste.

redrockhiker

I had a colostomy in Dec, completely unexpected but a result of radiation for my cancer. I also developed a fistula and have leakage on my back so I wear two pouches. At first, I thought I could not live like this, especially since the one on my back leaked so much I could barely go out. I have learned techniques to deal with all of this and plan to go back to teaching part-time in Aug. My tumor has shrunk so all the rest seems doable. Any specific questions? Catherine

 
Words of Encouragement from Ostomy Advocates I Hollister
marisa.s

It took me a good two months before my output started to get thicker. With an ileostomy, output tends to be on the watery side.

Try eating pretzels, bananas, and peanut butter. I also heard that cream of wheat helps thicken output.

I had fistulas that developed prior to surgery, but once they removed my colon, the fistula resolved.

It's okay to be emotional. You have been through a lot, and so much of our self-esteem is based on our physical well-being. Be patient - it takes time to adjust to our new bodies - you will get there eventually.

I tend to go to several sites that are similar to this one. You can go to the UOAA site - it contains a lot of information about diet, traveling, etc. and also has a discussion board. I found I needed all the help I could get!

Take care, be good to yourself. Marisa

Michspo

Thanks, Marisa. I am staying away from dairy for a week and see if that helps too. Even though I love my cheese.

spiceseller

I just wanted to say that it's nice to know that you're not alone.
I don't mean that I'm happy to see others suffering just as much as me or more.
I just mean that it's nice to know that someone else understands what you're going through and it makes my resolve to fight what I've got stronger.
So thanks and keep the tips coming because they all help.

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