Questions for anyone with perm ileo from UC...

Well I do not have Ulcerative Colitis, but I do have Crohns disease, which started as Crohns Coiltis. I've had many surgeries. I finally got my rectum removed this past november, which took a long time for me to agree with. I usually am in and out the the ER and admitted multiple times a year, but since november, Ive been admitted once, and been to the ER once, thats a pretty HUGE drop.

But, I wouldnt recommend that for your first surgery. You should get an iliostomy if you'd like to and think its bad enough, but if you've only tried those few medicines, thats not something to make a snap judgement like that too, when theres many more options for medication. Also they can give you an iliostomy without it being permanent and a lot of people by giving their colon and bowel rest , by bypassing the colon through the ostomy, can heal their colon that way.

Is your entire colon involved at the moment?

I sleep with my everynight. It doesnt bother me at all. It depends on the consistency of your ostomy, if your not feeling well, you can easily get dehydrated through it. But usually your Small intestine will take over for the colon in removing most of the liquid from the fecal matter. It learns to compensate. On average I'd say I probably empty it 4 times a day, with some other those being 'premature' meaning I did it only for comfort, or because I didnt know when I could later or not.

I THINK you might be jumping the gun, but maybe not if your Dr. has brought it up.

To answer your questions Doc;

1.  I empty 4 to 5 times a day.  This depends on how much and how often I eat but average 4-5.

2.  I am able to sleep through the night.  Again I think this would have to do with meal timing and amount.

3.  I tried the small belts sold by the manufacturers of the pouches made for the two piece systems but found I didn't need them.

4.  My surgeon said six weeks with my first surgery but I was active by the third week.  I am currently not employed because of the abnormal situation that led to my surgery but I would have felt confident returning on the 4th week.

As far as allowing the colon to rest, with UC the immune system attacks the colon for unknown reasons.  Leaving the colon in with an ileostomy would be of no help since the immune system would continue to attack it.  After my first surgery my rectum and a small portion of my colon were left in for a possible j-pouch solution.  I countinued to have bleeding and mucous in the small portion that was left and made a few trips to the washroom daily because of it.  It was determined that I still had UC in what was left so I was glad to go in recently to have everything removed and make my ileostomy permanent.  I spent five years dealing with this disease and tried most all medicines except Remicade.  Sometimes the side effects of the medicines were worse than the disease itself.  Had I known how things were going to play out I would have opted for surgery when I was first diagnosed.  I can finally leave the house, don't have to pack a change of clothes (just incase) and don't have to spend countless time scoping out the location of every toliet in the area.

The decision for surgery is definately a tough one and very personal for each individual's situation.  I think that the more prepared a person is the more readily they will accept the new lifestyle.  I would encourage you to reserch as much as you can since surgery is a permanent choice that you can not reverse.  After my little fiasco at the first of the year it became apparent that surgery was the only relief of my disease.  I spent countless hours researching it on the internet so I became more comfortable with what I would face after surgery.  I contribute that to my quickness of accepting it all.  Just my thoughts on it though.

John

Thanks everyone for your answers.

As mentioned above, I don't think "colon rest" is much of an option for me. I want it out...the inflammation will continue and eventually lead to dysplasia/cancer, and I'm not looking forward to that.

I have also considered the J-pouch, but I am hesitant for several reasons. There is still the possibility this could be Crohn's and the risk for complications with a j-pouch would be higher. Also, I have quite a bit of urgency and "spasms" so I know my rectal tissue is involved. Although most people don't have problems after the J-pouch, I don't want to even take a chance with it.

Again, thanks for the comments. I'll let you guys know if I decide to have the surgery...probably not this year, but maybe next year.

I am a former UC patient, tried every RX including Humira and ended with surgery this past June. Opted for a permanent illeo because I was unwilling to commit to multiple surgeries and the possibility of having to find a bathroom 8+times each day. Also, my 2 GI and surgeon admitted to me that if they faced the decision they would opt for a illeo and not the j-pouch.

I hedged my bets and kept my anus and associated muscles so have theoption to go the j-pouch route in the future.

I had a hard time post-surgery and was in the hospital for over 3 weeks. My small intestine took forever to wake and I was unable to eat or drink with out vomiting. The md's thought it was because of the severity of my flare, the amount of immodium and Vikoden I had taken in the weeks leading up to surgery. I am now 10 weeks post surgery, have regained the 30 pounds I lost and am able to run, swim and bike.

Keep asking questions and good luck