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Back on the forum after a couple years, with a new ileostomy!

Well here I am again, back in Crohn's world. After a great few years of remission and then me falling into old habits of putting my school and work above my self-care, here I am with an ileostomy. Had a big blockage a few weeks ago and lost what remained of my colon to surgery. Now I have an ileostomy and am about 3 days out of the hospital (surgery was just over a week ago).

I have so much to learn and ask about my stoma and need support, so I turn to Crohn'sforum as I have in previous flares and surgery times for friendship. Hi guys!! What's your advice for an ileostomy newbie? :)

fuzzy butterfly

Well-known member
Hi Emily. Sorry for your need to be back here. What kind of info do you want to know. Anything in particular or just general. I had a temp ileostomy for 11mths. So if i can help i gladly will. Best wishes 💕
Hi Emily. Ask away! I have had an ileostomy for almost 16 years and will be happy to give any help that I can.

I'm off to bed now but will come back in tomorrow.
Thanks guys! Well lets see, I constantly have new questions.

Whats your fave bag system and why?
(so far I've been with a Hollister 2-piece, but just got a nice Coloplast Sensura Mio 2-piece sample from my nurse that I'm loving so far. Curious what brands you like, but also curious about 1-piece vs. 2-piece and what the general consensus is on that)

How do you deal with having to wake up usually at least twice to empty? My sleep schedule is jacked up now. I never, ever used to use the bathroom in the middle of nights.

Do you guys actually keep track of your fluids ins&outs, or is that just a postsurgery routine?

That's all I've got now, but hoping to hear from everyone. This is definitely a new lifestyle but omg, my Crohn's pain is significantly improved now and I feel like my food possibilities have widened so much now that I'm feeling so well. Also, just ordered my first ostomysecrets wrap which I am pumped about. Talk to me! Tell me what you wish you knew when you first got your stoma! :runaway::ybiggrin:

fuzzy butterfly

Well-known member
Hi I used a Coloplast one piece as I felt it most comfortable, I can't remember which one . I had to empty 1/2 times a night but went back to sleep quickly. If you don't eat after 8 pm. It can reduce the amount of times you have to empty in the night.
Fluid input and output only monitored for a while after surgery, then you just carry on as normal.
I wish I had been told that I may still pass a bit of stool from my bottom. The first time that happened I thought the op had gone wrong some how. I was on the loo phoning my doctor to see what the heck was going on. It was old stool from before the op working its way through.
Hope you love your wrap, and things continue to improve for you. Best wishes 💕💕