Questions for anyone with perm ileo from UC...

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DocwithUC
Regular Member


Date Joined Aug 2006
Total Posts : 28
   Posted 9/2/2008 9:56 AM (GMT -6)   
Hey guys. My UC is driving me crazy...I feel that I can barely leave the house and it is preventing me from going on trips and enjoying life. I've tried prednisone, mesalamine, and now on remicade every 6 weeks. Although it's not as bad as before, it still isn't great. That's why I'm thinking about a perm ileo. I have a few questions for you that would really help me out.

1. How often do you have to empty?
2. Can you sleep through the night?
3. Do you feel more comfortable with the ostomy support/belt? Can you wear this even when you sleep?
4. How long did it take before you could get back to work [assuming it is desk work]?

Thanks!

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 9/2/2008 12:19 PM (GMT -6)   
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.

nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 9/2/2008 3:58 PM (GMT -6)   
I had UC for 20 years. It started out as proctitis. Then became full-blown UC. At that point, life became a living he**! There was bleeding to the point I was anemic, bloating, pain, and uncontrollable urges to go. I just hung in there because I was not willing give up, and I took sooo much medicine which just made things worse to tell the truth. A year ago, I had an ileostomy because finally I could not put it off any longer. The colonoscopy found dysplasia. (I waited too long.) However, after the surgery I was told that no cancer was found.

Life is okay now. I wear a bag which I empty about 4 or 5 times a day. It really depends on how much food I consume. I change the wafer and bag every 5 or 6 days. As for sleeping through the night, no problem. I sleep much better that I did with UC. My quality of life is much better. UC tried to kill me, but I won the battle and don't regret doing what I did.

Oh yes, I do wear an ostomy belt during the day, not at night.

I may go back to work part-time soon. I'm not working now.

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 9/2/2008 5:21 PM (GMT -6)   

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


Total Colectomy with End Ileostomy May 27th, 2008


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/2/2008 6:39 PM (GMT -6)   
I empty mine whenver i go and pee, which i pee alot, lol. I wouldn't have to empty but probaby four or five times but i just do it whenever i go, that way i dont' have to worry about it.
I could sleep through the night with it, but again, i get up to pee so i just empty it.
I don't wear a belt, i dont' know what they are.
I don't work, but i was backup and around in about 6 weeks.

I don't think it's too early for you to consider surgery, if you are unhappy with your life, and don't want to keep wasting time on meds that may or may not work and that have horrible side effects, then go for it! I wish i had done it right away, and not wasted 8 years trying stuff, honestly i didn't try very manythings, and i wouldnt' try rectal meds at all. I didnt' want to waste time on things once i decided to have surgery.

DocwithUC
Regular Member


Date Joined Aug 2006
Total Posts : 28
   Posted 9/3/2008 8:39 AM (GMT -6)   
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.

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1245
   Posted 9/4/2008 5:02 AM (GMT -6)   
1. How often do you have to empty?
 
I usually empty about 4 - 6 times a day. Once first thing in the morning, then just before lunch, then just before I leave work to go home then about 2 - 3 times before bed. As Summerstorm said, it's usually only when I pee anyway, no extra trips really.

2. Can you sleep through the night?
 
I usually have to get up to pee so empty then, but if I didn't have to get up to pee, I could usually go through the night. I say 'usually' cos there are times when I should have gotten up to empty but slept through and have woken up in a mess - but those times are rare.

3. Do you feel more comfortable with the ostomy support/belt? Can you wear this even when you sleep?
 
I've never worn a belt.

4. How long did it take before you could get back to work [assuming it is desk work]?
Most people tend to be able to get back to work after about 6 - 8 weeks. I was a kid when I had my surgery and was back in the pool swimming a month after my surgery (but, as you probably know, kids are way more resiliant than adults).
 
Good luck with your decision.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


mikeg999
Regular Member


Date Joined Apr 2008
Total Posts : 61
   Posted 9/4/2008 3:19 PM (GMT -6)   
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
55 yo male
First UC flare at age 49
All medical approaches failed (including Humira) and opted for total colectomy on 6/17/08. Permanent Ileostomy


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/5/2008 11:36 AM (GMT -6)   
1. I also empty when I pee...just saves time and energy (would be about 4 times if I just went to empty).

2. I can sleep through the night as long as I don't stuff myself silly at dinner!! I try to eat before 7pm (doesn't always happen) and have a small snack(usually 2-3 crackers) before bed.

3. I only wore a belt when I had surgery and my appliance overlapped my incision to a point where only half of the tape was secure to my skin. Once I could secure the whole wafer I stopped using the belt.

4. If you are a candidate for laproscopic surgery, your recovery time will be ALOT quicker then if you have to have open surgery. Personally when I had my proctocolectomy (open surgery) I was down for a good 8 weeks before I could get back to life. I DID feel better each day, I just wasn't 100%. I also work from home, so I was able to work after the second week (I don't think I would have been able to go to an office everyday).

Good luck with your decision...it is a hard one to make (it took me 7 years) but in the end, you have to be comfortable with it.
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