Is it Time to Slice and Dice?

Introduction:

My name is Megan and I am from Victoria in Australia and am 22. I was diagnosed in Feb 2012 after months of living in the bathroom!

Some more about me:

I have just finished by degree in Biomedical science and I’m now doing honours in the area of cancer, although lots about UC keeps popping up! I enjoy (try to anyway) being outside and the beach, and just being with family and friends :)

Symptoms:

Multiple BM a day, about 10, blood, mucous, urgency, pain: the usual!

Is it Time to Slice and Dice?

After only having this disease for just over a year, I am meeting with a surgeon to discuss getting my colon out! I know its a big operation but I have tried sulfasalazine, mesalazine (tablets and enemas), imuran (which caused me to vomit every night) and the dreaded prednisolone, and nothing seems to work. My specialist has suggested another drug if I decide not to have surgery, but I am worried about the fact their are serious long term side effects and that I would have to come off it to have a family (the thought of getting better and then having to stop another medication is too much!)

Although I know that I would be lucky to achieve a complete remission, I mourn for my old life of rowing, swimming, horse riding and being able to eat a meal without having to jump up and race to the loo! My family and partner are very supportive of my decision, and I am happy, although I have no idea how other people put up with this disease for decades! I am just wanting some feedback from other people around my age (Im 22) that have had the surgery, and if they love or hate it, and if they have a J pouch or stayed with the bag. I would love to have the J pouch eventually, although the sound of frequent BM with this procedure doesn’t sound good to me, and it might be nice not having to ever have to sprint to a toilet again haha. Also, did people contact any support groups/ ostomy nurses for this surgery and if so, how did they go about it?

Any feedback that anyone can give me regarding the surgery and if they are happy they had it done (or not) other medications and support groups would be awesome! I am happy to be contacted on meganlearls@gmail.com if anyone is willing to share their stories with me!

Medications:

currently:
15mg prednisolone
1 x enema per day
4.8g of mezavant tablets/day

written by Megan

submitted in the colitis venting area