Crohn's Disease & Ulcerative Colitis Support Group

Hi Mike, Did you gat a J-pouch or do you have a bag?

I am on a J-pouch now, I was on the iliostomy bag for the first two surgeries.

I don't think I am at the point of surgery yet?? I do have some questions for you though. My e-mail is richizy at hotmail.

I remember you from last summer! Welcome back and glad to hear that the surgeries went well. I wish you continued success in battling this beast!

You have to be a great source of information. I have been offered this option and really scared thinking they may find a cure. I am glad you posted and let us know how it is working for you and the pros and cons.

Hi Mike. Thanks for coming back to DS to help those of us who are still suffering with colitis. Now that you are healed it sounds like you are moving on.

I'm a very active person - running, mountain biking, back packing, skiing, etc. Do you see any restictions from these activities after the surgery is complete?

I've had colitis of 25 years and now the drugs don't seem to work. I'm facing the surgery decision right now.... and it scares me because it is soooooo permanent.

Thanks.

Perhaps you can post a journal outlining your experience. I have tons of questions also and I'm sure you'd hate to have to answer the same kinds of questions over and over again.

Here are some of my many, many questions:

How long did your doc give you before you scheduled the surgery?

How long was the actual surgery?

How long did you recover?

When were you able to return to work?

How was the recovery process--very painful?

Was the month consecutive?

How long did you have the pouch?

Is the pouch very inconvenient?

How often did you have to change it?

Did you heal rather quickly?

I am at the point where I am trying Remicade. I am getting all of the tests run in order to get approval for the drug. The thing is, I know that I only have a 40% chance of it working and if he does work, it tends to only work a couple of times before it stops.

Realistically, I believe that my next step will be surgery, my GI says that this is an extreme case, but none of the meds are working for me and I believe that my colitis is getting worse each year.

My greatest concern with surgery is not the surgery itself--I've come terms with that being an option for me--it's how long will be I be recovering.

Like I said, I have TONS of questions! My doc said I could ideally have my surgery during a summer vacation (Yay being a teacher!) and I should be able to heal over that time. I'm just afraid of being off work for a looooooooong time because honestly, I can't afford that and I need my health insurance.

Thanks!

Sugah

my daughter got the j pouch, some people recover faster and better then others, she is now 18 yrs old and still trying to get things under control, the recovery was not nearly as fast as the doctors said it would be, we will be happy to answer any questions

My father (though not a CD / UC sufferer) had colon cancer, however not all of his colon was removed. His recovery was supposed to be 6 weeks, however he was back at work after 3 weeks.

To answer some of the questions here. I

"Do you see any restictions from these activities after the surgery is complete? "
used to be in a football team, a rugby team, and I did judo for two years. Gradually after getting colitis I coudln't do none of it. Its been 4.5 months I can do an hour of cardio + an hour and a half of work out and I keep getting stronger daily. My bowl movements are getting better and better every week. They said it takes a year or two for it to get stable but at this point I am very happy with it. I haven't been this physically active for almost 6 years now. The only thing I can complain about is that because I no longer have a colon it takes three times as much booz to get me drunk so my bar tab is sky high.

Moving on...

"How long did your doc give you before you scheduled the surgery?"
I don't remember exactly but I think my surgery date was less then a month and a half from the day I said "ok lets do the surgery".

"How long was the actual surgery?"
The first surgery was 4 hours, second was 4 hours, and the third was 3 hours. I spent about 4 hours in the first and last surgery simply because when I did wake up in the recovery room I was in a lot of pain as my body showed no reaction to morphine.

First surgery I spend 14 days in the hospital because my intestine would not function and they had to pump my stomach till 10 days after surgery(I had an NG tube). It took 4 days to get back on foods and be released. Second surgery I spent 7 days in the hospital then was released. third I was in the hospital for 7 days then was released.

Recovery for all of them took 1.5 months simply because I was prone to infections. I heal very badly, they suggested that it might been because of the prednisone since I was on it for 5 years. But after 2 weeks after each surgery I could function well. It all depends on you and how self driven you are. You can have a slow recovery or a fast one.

"How long did you recover?"
After my wound infections healed I returned to work, which was in 1.5 months after surgery. But if I didn't have any wound infections I would probably be released from the hospital in 5 days, and would be functional in 2 weeks.

"When were you able to return to work?"
After the third surgery I went on 1.5 months of vacation in the middle east and that was 3 weeks after surgery. That means I was traveling alone for 2 whole days straight till I got to my destination. I was tired from all the international airports and the luggage and the line ups and the searching for the gates and stuff but I did it. If I could do that after 3 weeks believe me anyone can return to work after 3 weeks(unless if your works has some heavy lifting as you are not to do major activities for 2 months after surgery).

"How was the recovery process--very painful?"
My recovery was very painful, but I wouldn't expect any less from it. My illness was always on the extreme and would never be considered the usual case of a person with UC. But once I found out which drugs worked well for me then my recovery went smoothly. Your diet, daily exercise, and pain management are the most important things in your recovery. I tried a lot of stuff. For me in the hospital the best medication I was on at first was katamin and hydro morphone combo. Then they switched me to oxycodon. I did get addicted to the drugs after each surgery but by the time the pain stopped I always stopped taking it as well. But the drugs are very powerful and very addictive. If you have good self control, you will be just fine.

"Was the month consecutive?"
I don't know what you mean by that. Things do get boring if thats what you mean. By the third surgery I knew how everything went, at least the first one had surprises. I would have surgery, a week in hospital, 5 weeks on the bed at home with daily walkings during sunny days, and would return to work for 2 months before next surgery.

"How long did you have the pouch?"
I had the pouch for 8 months. All in all I was out in public with it for 4 months. People wouldn't notice it until I would tell them. The only problem for me was gas as my stomach made a lot of noises, as I am a gasy person. :) but with careful planning and a good diet you can avoid all of that.

"Is the pouch very inconvenient?"
The pouch always reminded me of a new born baby. You have to be very gentle with it, and take good care of it. It needs your attention every couple of hours. Although with medication you can make it much easier on yourself.

"How often did you have to change it?"
If I was at home I would empty it every 2 or so hours because I wouldn't take much medication when I was at home so my stomach was very active. If I was going out, I would watch what I eat and take meds and would have to empty it every 4-6 hours. the bag itself would have to be changed every 3-5 days, depending on your activity. If you sweat a lot then you have to change it sooner but if you don't sweat that much you can go up to 6 days.Personally I liked the ones with the velcro and not the clip ones(the old ones).

"Did you heal rather quickly? "
Healing has two different categories. Healing on the inside, and healing on the outside. Outside could be very fast, two weeks without a wound infection. Inside it takes at least 1.5 months. But everything is healed by 2.5 months normally.