Surgery

I had surgery 7 weeks ago this Thursday and apart from last remaining bit of colitis in my rectum I'm doing and feeling great.

Had bad colitis for last 2 years but October - November this year almost killed me... Just when I was in hospital I asked to see the surgeon.

After he put the skids up me with a scary scenario I was ready for the surgery and best thing I've done.

Will discuss full colectomy or reversal next year. I'm looking to go back to work in a few weeks.

My advice... Take the surgery! You will have your life back!!!

I'm only new with my ileostomy (4 weeks tomorrow) but I'll give my input so far!

I was flaring for a year with UC, and tried pretty much all the drugs - even double doses of infliximab; after the last dose, it was making me feel awful and doing nothing for my UC. During November I got sicker & sicker, 10-15+ bloody BMs, urgency, cramps, pain, couldn't eat, couldn't sleep, couldn't leave my house, fevers, anxiety attacks... My GI referred me to an IBD specialist in a university hospital to see what he thought, and I saw him on the 3rd of Dec; he said it sounded like I needed surgery, and to come back on the 8th to talk to the surgeon & for him to do a sigmoidoscopy to show the surgeon what my colon looked like right now.
Even now I don't know how I made it through those few days! When I went to the hospital on the 8th, I saw the surgeon before I even had my scope and he admitted me instantly - I'd a high temperature, I was anaemic, my CRP was "impressively high" (his words!). He said I needed to get my colon out ASAP. So two days later it was gone!

I'm doing pretty good with my ileostomy so far! My post surgery pain is pretty much gone, some aches & gas pains just now. I'm still exhausted, especially in the afternoon - but I was very sick for a long time, so have a lot of strength to build up again!
I empty my bag about 6/7 times a day; my ouput is still quite liquidy. But I'd pee that much or more every day, so it's not a big deal, takes a couple minutes longer. My diet is low residue at the moment, but I've been assured I will be able to eat a normal diet eventually.
I think it's very discreet under my clothes; for me I think tighter clothes are better! I've worn a couple of pairs of very fitted leggings/trousers and you couldn't see anything. I'm very slim too.
I can already see myself getting my life back. Last weekend I could go out with my mother for an hour or two, and I went out for lunch yesterday. Things I couldn't even think of doing in the last few months!

Hope that helps! If you've any more questions, I'd be glad to help.

I had a subtotal colectomy with an ileostomy this past April. I had a Crohn's flare that had been going on for 9 months, many abscesses, infections, lost 30 pounds, and was responding to no medication. I ran out of options. During the surgery they found my colon had all these pockets of infection. Medication never would have fixed it.

I'm doing terrific now. I've gained 40 pounds and I feel great. The bag took some getting used to, but the reality is I have so much more freedom now. I don't have to worry about immediate access to a bathroom, so I can take long car trips, eat meals with friends without fear, etc.

I empty about every two hours during the day, and wake up once in the middle of the night to do so. I change the whole appliance every other day. My diet is somewhat low residue, which is probably unnecessary, but I'm terrified of a blockage. On the plus side, I eat pizza now! I'm sure I'm still lactose intolerant but if it goes right through me it just goes in the bag, no needing to run to the bathroom! (I don't overdo it, though.)

Physically, you have to protect it, as it's an internal organ on the outside. I don't do any full contact sports, but they do make "stoma armor" and other products for protection. I have started ice skating and am loving it. Everyone has their own system for clothes. I have a pocket sewn on the outside of my underwear for the pouch to rest in; it gives me some support. Other than that I wear the same clothes I used to wear and no one can see a thing. Regarding intimacy, my wife is awesome and it's been great!