Looks like this might be my new message board soon.... surgery is my next option

Hi,

I've been posting on the UC board for a while. Well, I had a colonoscopy yesterday and was told that I now have two options due to how bad my colon looks. The first is to start taking Immuran in combination with remicade (I've been on remicade since Aug). But the first thing he said about that was it greatly increases my risk of blood cancer. Not cool with me. My other option is the j-pouch surgery. So I find myself scanning the threads on this board, and I have some questions. I hope my questions aren't too redundant as I'm sure newbies post questions all of the time...

Here are my questions....

How long will I be in the hospital for each surgery (typically of course, I know complications could make it longer)?

I have an office job, so I live in a cubical for 8 hours a day. How soon after each surgery do you think I'll be able to return to work?

After the first surgery, once I have the temp ileo (is that what its called? I'm so new to this.), will I be able to enjoy summer activities like swimming?

How soon after sugery were you able to eat normal foods that you could not eat beforehand?

I have IBS as well - do you think I will still have IBS issues or will the surgery take care of that too? What about lactose intollerance?

I feel so knowledgable about UC after having it for the last 2 1/2 years almost. But I feel clueless about the surgery and what to excpect. So I truly appreciate your help.

 

Wow, looks like we have similar histories in terms of how quickly the disease progressed in such a short period of time after diagnosis.

I was prednisone dependent too, prior to surgery. Due to the extended period of time I had been on prednisone, I require 3 surgeries vs a 2 step, as my surgeon found during surgery #1 that my organ tissue was too friable due to the prednisone use to continue with forming the pouch at that time. So I was told to wait 2-3 months after surgery #1 before going on to surgery #2. I have chosen to put it off for awhile so that I can continue to lose weight and get healthy again. My prednisone was tapered down slightly before surgery (I think I went in on 20 mg/day), but within a month of surgery I was successfully tapered off completely, which was a wonderful feeling.

I can only speak about surgery #1 (total colectomy and temporary ileo), as I've only had part one so far. I was only in the hospital for 5 days following surgery. I was not permitted to drive for 4 weeks following surgery or lift anything heavier than the Sunday Paper (my surgeon's quote). I work from home, and it was about 4 weeks before I was weaned off all pain meds and feeling up to work. I know it takes some people longer, some shorter.

I was advised to have a bland low-residue diet for the first month, and then to slowly add foods back in. By two months post surgery I was eating everything except popcorn and seeds -- SALAD and COFFEE -- I was in heaven. Everyone is different, and you have to chew very carefully and drink lots of water to avoid blockages. There are certain foods like strawberries, blueberries, and grapes, that are uncomfortable if I eat them, so I avoid a few foods. But NOTHING like with UC. I don't have IBS, so can't really advise on that.

You should be able to swim, hike, play. It took me a few months to come to terms with my ileo and get used to it, but you will get there, and it is so much better than feeling sick all the time!

Best of luck to you in your decision-making!

ok, i have a perm ileo, so i can only answer those questions.

I was in the hopstial for 6 days, average time is 4-7 days. But everyone is different.

As for going back to work, for a desk job, probably 4-6 weeks. It will depend on how quickly you heal. the steriods will make you heal slower. Its best to be off them when you have surgery BUT if getting off themmakes you flare really badly, then its better to be on them.

On the way home from the hospital from surgery i drank a milkshake!!! and in the hosptial i was eating foods i hadn't eaten in years. NOW you do have to be on a low residue diet for about 6 weeks, that means no stringy meats, no raw veggies or fruits, no spicy foods. However you ccan start to introduce those things at about 5 or 6 weeks, one at a time.
Just like if you eat a salad, drink a bunch of water and eat some bread too or something. And be aware it comes out like it went in, lol.

I dont know about the IBS or the lactose intolarnce, sorry.

You can do everything you did before! You wont' be able to go swimming until your stitches come out of course. I had my surgery in April 2007 and was swimming in june, at the beach in july and pudding wrestiling in august! so it wont stop you from doing ANYTHING you want!!!

Good luck and YAY for being healthy soon!