Considering ileostomy - what do I need to know?

Hello, I have Crohn's Disease and am dealing with recurrent rectal abscesses that we cannot get under control. My surgeon wants me to have a temporary ileostomy to give my bowels a rest and time to heal. As I consider this, and consider the possibility that "temporary" will be become permanent, what things do I need to know? I am just starting to research this now and would value people's experiences and opinions on this.

Sorry to hear you have to make such a decision...but there is light at the end of the tunnel!!

My shortened version:

Many years of abscesses and fistulas w/setons as well as some small bowel issues. After a resection I had a pin hole (not even detectable on xray) that was causing havoc with a leak. The result was a temporary ileo for 3 months. No biggie, had it reversed, and thought I'd go back to life...WRONG. During the 3 months with the temp ileo I had a life, very little fistula pain, went skiing, traveled without issues and I could go on!

Once I had it reversed my quality of life declined again. I made the choice to go back to a loop ileo but kept my colon/rectum. While I didn't experience any new abscesses/fistulas the 3 pesky ones stayed along for the duration (setons included). I felt good, but still had to take meds to keep them under control. about 8 years in the meds really stopped helping and I made the decision to have a proctocolectomy...which wasn't an easy surgery, but it was the best thing I ever did for myself.

You hear UC patients say that they knew they were free of disease when they woke up. While that wasn't my case, about 4 months into recovery I woke up on day and felt GREAT! I know Crohn's is always going to be there but the statistics of having issues decrease every year...so I am now at 6 years post proctocolectomy and having the best time of my life.

Now, while we are all different, for me the steps I took really helped me come to terms with the permanence of my decision. Would I have had the last surgery sooner if I knew, yes, but hindsight is 20/20.

You will get a lot of info here to help with your decision. The biggest suggestion I have is find a doctor who is a specialist (but I think you already have that). I don't dress any differently than I did before, but I'm 46 now, so I don't do low rise jeans!! I do have to watch what I eat but it's for the calories because after years of not being able to eat I eat EVERYTHING and they add up quickly:-(

Do you have any specific questions?

Thanks for the replies. Most people seem to be happier (and healthier) after having ileostomies. I guess I'm just curious about things the doctor may not advertise. For example, is it true I will never be sleeping through the night since the bag would have to be emptied every 3 hours or so? Could I take baths or go swimming? How often do you have problems at the stoma site? What's the recovery from the surgery like?

I do have to wake up most nights to empty my bag...but usually it is because of gas causing it to balloon, though there is also a good bit of output as well. On average I wake up about 4 hours after I fall asleep, empty and go right back to sleep. Sometimes I make it 6 hours...which is a full night's sleep for me anyway. I tend to snack a lot at night. I also eat pretty healthily, which I find increases my output. The days I eat junk, I have much less output.

I've only had my ileo for a little over a year, but I exercise, do yard work, and sweaty stuff like that with no problems. I have gone swimming in the ocean, take baths...no problems there either. My wafers usually last about a week...though it took some trial and error to find my perfect set up.

I was VERY sick at the time of my surgery, and my surgeon thought it would take me longer than average to recover. I surprised everyone and recovered quicker than expected. Each day I felt better than the last, and I have felt pretty much totally normal for at least a few months now.

Hi Bania

I got my perm ileo 5 months ago. I eat supper around 530/6pm (sometimes a bit later if I'm going out for dinner with friends). I go to bed around 11pm and empty my bag before tucking in for the night. I'm still off work recovering so I can sleep in, so I don't get out of bed again until 9am - and I empty my bag then. It may be a bit gassy with some stool in it, but it isn't enough for me to get out of bed earlier. If I get up in the night to pee, that's when I will take the extra minute to empty my bag.

I am sleeping a million times better than before my surgery :)

As for clothes, I have been wearing leggings and yoga pants so far. I have to buy new jeans because I've lost a bit of weight, but that's the only reason I have yet to wear jeans. I did buy a few pairs of higher waisted panties, and some boy short underwear that support my bag really well.

I have worn dresses to events and just last night met a friend for dinner and the first thing she said was, wow, I expected to be able to see a bulge but I can't even tell where it is!.....and this friend is a medical professional and knows exactly wear to look!

Post Edited (PoucherInTO) : 3/22/2014 8:55:04 AM (GMT-6)