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First surgery--scared

Mon, September 08, 2008 5:44 PM

Hi,
I am an ulcerative colitis patient for past 3 years. Was in hospital for 10 days with no effect from IV steroids. So now am trying chinese meds, while contemplating surgery this week or next week.
Have a few questions:
1. They are going to an ilesctomy(sp??) for me..basically a pouch outside. How bad is managing the pouch outside--Does it show from under the clothes?
2. Does it leak? What then?
3. Does it cause skin rashes and is unconformatble?
4. Can you swim and do other excercises with it?
5. What are the restrictions once you have a pouch?
6. Anything else that I should know about?

They cannot put an internal pouch for me as am on steroids. I have been recommended an external pouch for 4-6 months, before second surgery for an internal pouch.

kanakab
Joined Sep 8, 2008

Fri, September 19, 2008 11:44 PM

Reply posted for kanakab.

i've been thru *** and back again 5 surgeries in 2 yrs but...........

i do not miss my colon and do not wish its bad behaviour on anyone !!!!

yes i have had ups and downs but living w/o colitis is soooooooooooooooo worth it , go 4 it !!!

lorri
Joined Sep 19, 2008

Mon, September 08, 2008 10:07 PM

Reply posted for kanakab.

I just posted my story on the Personal Stories tab. It stated it could take several days before it is approved.

It answers a lot of your questions, in a lot of detail.

Keep an eye out for it. I think I titled it Jeff's UC Story.

jeffdc
Joined Aug 25, 2008

Mon, September 08, 2008 9:24 PM

Reply posted for kanakab.

Hi,

I just had the surgery that you are contemplating. I had a few leaks in the beginning and it was messy and frustrating. After I got used to putting on the pouch and started working with new adhesives, I haven't had a leak since. I'll be honest with you. For me, the pouch does suck and you just have to keep reminding yourself that it is temporary. For the first 4 to 6 weeks after surgery, you're not going to feel much like getting out of bed or out of the house and will care less about clothes. I recommend getting lots of comfy pajamas. There are times when the adhesive itches. I personally hate the feeling of airbubbles forming; which you will occassionally get as gas builds up and is released in the bag. When you do start going out, always carry an extra bag and wipes in your purse. i've never had an emergency in public; but, it helps my confidence knowing that I'm prepared should an accident happen. Now that the swelling from the surgery has gone down, I can wear almost everything that I did prior to the surgery. I only have four more weeks until I get rid of the bag and I can hardly wait. If you can go a few months without the steroids, you can cut the recovery time almost in half and not have to deal with the bag as long. If at all possible, I would try to get throught the holidays and then do the surgery. I can't imagine having to deal with the bag over Thanksgiving and Christmas. It's just a thought to consider; however, if your life is threatened and you're just sick and tired of being sick, then these other details won't matter. You'll beg for the surgery and probably have no regrets. Best of luck to you whatever you decide.

shawn

ucshawn
Joined Aug 12, 2008

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