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New ileostomy, does it get better?

Fri, June 10, 2016 10:36 AM

I am 3 weeks post op, had my colon removed from UC and am letting my j pouch heal with a reversal planned for future. Trying to adjust to ileostomy but get so freaked out. I've lost a lot of weight and get full fast. Trying to eat small meals. Now starting to have stuff come out my rear, nurse said it was normal but will it be all the time? Does anyone or has anyone dealt with these issues? I'm so anxious all the time.

goofygutz
Joined May 24, 2013

Sun, June 12, 2016 4:09 AM

Reply posted for shell1115.

You're welcome...oh, I forgot, and the stuff coming out of there now is temporary, don't worry. It's just crazy "leftovers" in there from before surgery (that was my understanding of it, anyway). I'll be praying for you! Hang in there!

shell1115
Joined Jun 15, 2013

Sat, June 11, 2016 9:50 AM

Reply posted for shell1115.

Thank you shell1115! It gives me such hope to hear you are doing great 15 years later! The gave me the hollister brand bags and they do work great. The stoma nurse said with the new products now's the best time to have a stoma lol. I agree with sense of humor I do laugh when my stoma decides to pass gas. I'm glad to hear it does get better, I definitely have that to look forward to! :)

goofygutz
Joined May 24, 2013

Sat, June 11, 2016 9:29 AM

Reply posted for goofygutz.

The ileostomy DOES get better. I had to have a temp one due to Crohn's in 2001. Mine drove me insane,so I do understand your concerns! I had to use the "stick a tampon in it" to stop the flow method, then multiple adhesive products to get mine to stay/not leak. Hollister is a brand I remember, but not sure if they're still in business. It was EXHAUSTING until I finally learned what worked. So much trial & error! That was 15 years ago, so I am sure the products are quite different now, so I can't really help with brand info. (sorry) but I can assure you that I had mine the 3 months to let my bowel rest & heal, like the surgeon said, and I have NOT had to have one again in 15 years! It is a difficult thing to adjust to, you are a tough cookie for going through it all, and you will learn & develop certain tricks to getting those bastards to stay in place and not leak. You will find that it was worth it in the end, and will be even stronger for it! Tip: be careful with the surgical site after the bag is gone (I have developed a hernia there) so watch how much heavy lifting you are doing. From one bad-ass bag wearer to another...You are stronger than most people and you will get through this...one day at a time! Try and laugh, makes goofy jokes about what foods you see in there or how the bag literally fills with air when you "fart", laughter is best medicine!!!!! 😝

shell1115
Joined Jun 15, 2013

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