I have been cured of my UC (surgery)

I had just finished my second ostomy surgery (takedown procedure) about a month ago. Things are going great for me, and I really suggest doing this from the start if you don't feel like having to go through all the medications that are available for UC. Eventually all your medications will stop working, and surgery is always the last resort. I have known many people who have been on one remedy for 20 years+, and then their treatment fails. But for a few, it seems as if they work forever, and they do; but that population is like 10-20% of the people who have UC. If I could've given anyone advice, it was to remove your colon, because with either UC or Crohn's history, you have increased chances for Colon Cancer. My life is already back to normal, and I'm on a normal diet, I have all my energy back. I highly recommend this for anyone who's hesitating from doing it. It's hard to get used to the ostomy at first, but you'll get used to it. Overall, all my secondary problems (anemia, iron deficiency, etc) have subsided because the primary cause of them was my sick colon. I guarentee taking iron supplements and stuff will not help your anemia that well. Leave your questions here, and I will try to answer them :)

Congrats on getting thru the surgeries! I noticed in a post of yours on the ostomy forum that you're only 16. Sorry you have been through so much at a young age. I have 2 teenage sons and I worry about them inheriting this from me someday. Surgery has been a blessing for me as well. Keep up the good work!

Glad it worked for you; Ill probably be following suit very soon.

But I need to correct yoru assertion that everyone's meds eventually fail. Only about 40% of UC patients ever require surgery in their lifetime and that number is decreasing with improved treatment. So your 10% value is just pulled outta your (now functioning) ass.

NiceCupOfTea said...

Marauder93 said...
Glad it worked for you; Ill probably be following suit very soon.

But I need to correct yoru assertion that everyone's meds eventually fail. Only about 40% of UC patients ever require surgery in their lifetime and that number is decreasing with improved treatment. So your 10% value is just pulled outta your (now functioning) ass.

Most studies I've seen put the surgery rates at 20-25%. Never seen anything which claimed it was as high as 40%.

From the CCFA: http://www.ccfa.org/resources/surgery-for-crohns-uc.html?referrer=https://www.google.ca/

and

http://www.medicinenet.com/ulcerative_colitis_surgery/page2.htm#how_common_is_surgery_for_ulcerative_colitis

Most Ive seen say its on the higher end of the scale towards 40%.

My surgeon said 30% I think. Someone posted something here recently that was interesting. It said that the rate of colectomy hasn't changed with the newer meds available. it seems like that 30% of us, are non-responsive, and no matter why we do, we are going to end up having surgery. I actually think it's a different illness that no one is doing anything to try to treat or cure.

Somebody said...
Surgery is traditionally recommended as salvage therapy when medical management fails, and, despite advances in medical therapy, colectomy rates remain unchanged between 20% and 30%.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3337560/

Congrats Lonesurvivor. That's a tough thing to go through at 16, I give you a lot of credit. Great to hear you're back to your normal life. Did you have a the option of a J-Pouch? Just wondering how you made your decision to go with the ostomy. Not sure which I'd pick.

Uniform Charlie said...
Congrats Lonesurvivor. That's a tough thing to go through at 16, I give you a lot of credit. Great to hear you're back to your normal life. Did you have a the option of a J-Pouch? Just wondering how you made your decision to go with the ostomy. Not sure which I'd pick.

Thanks, I was told the J-pouch was more suitable to my situation. Especially that I'm starting college early, the Jpouch can hold my stool in like a colon, and I have the ability to wait to use the restroom as well. I haven't really heard too much about S-pouches, but I know they're common. Ask your doctor.

That's really good to hear! I do believe that down the road I will probably be one of those who end up getting surgery.

I think my biggest concern is how recovery is. Is it painful? Does it take a long while to feel back to normal? Since it's just a major surgery, I'm just afraid of waking up from it and being in intense pain. I'm a wimp and I don't want to get addicted to pain pills or anything!