remicade or surgery?

I'm 19 years old. Been living with Chrons since the 5th grade. Got on high dosage of meds/steroids. Until they stopped working. Doctor put me on remicade. I
Let me tell you, this drug saved my life. Was on it for about 6 years. Until my hair started falling off. Got sent to a new doctor because I turned 18. I was doing great, but just had hair loss. So doctor took me off. After three months later began to have a severe flare up. Put me on cimiza, cimiza has not helped for nothing. Just made me feel worse. Mostly more pain in my bones and back. Doctor talking about surgery. But I'm too young and don't want to go through that but if I really need it I will do it. But something telling me just to try remicade again and hope for the best. I'm taking 6mp , prenadal, prevacid, and steroids. I weighed 140 now I'm close to 200 pounds. I get depressed sometimes cause of all the pain I go through and weight gain. If anyone has gone through surgery please let me know how it helped you. I'm very nervous and out of thinking.

Hi Cassy,

I'm so sorry to hear all the pain you are going through. I don't have CD, but my husband does and has been through so much the past 18 years. He had it real bad in his early teens, went into remission for about 7 yrs, and has been deteriorating the last 5 years. The last two years have been the worst..he lost over 50 lbs. remicade didn't work so he started Humira and 6mp. we've seen a pretty big improvement, but still quality of life is probably around 3-4. His GI said his colon is in such bad shape the meds can't fix it. so he's going in for surgery next week! he's excited for the fact of "starting his life"

it was a very hard decision, but I think it comes down to what you want in life and how this darn disease is affecting it.

Welcome Cassy.
It's really up to you, but depending on the location and length of the cd, surgery could give you a lot of relief. You *might* be okay for years on maintenance meds, instead of heavy duty meds.

One thing I suggest is if you haven't already, ask your GI about a multi-blend probiotic, especially if you opt for surgery (to start afterward). Studies show that some probiotics are very helpful with CD.

Nanners here always says folic acid helps with hair loss. You might want to look into that too.

Hope you get some relief soon!

Good luck with restarting remicade. It brought me 2 years of remission before I had to increase the frequency of my infusions. I hope you will be feeling better and can avoid surgery.

My husband has been on Remicade now for almost four years. Remicade saved him from surgery and needing a ostomy for life. Not to say that he won't be back at the same situation in the future, but the present and the last four years have been reasonably normal. He's had his ups and downs with crohns and other inflammatory conditions, but for the most part he's been able to tolerate a normal diet, and lead a normal life.

I believe in choosing options that is going to improve your quality of life. You can try Remicade and if it doesn't work, you can always have surgery. However, you don't want to have surgery and then regret it later by thinking that perhaps you should have given Remicade another try. Thisnis why my husband and I chose for him to try Remicade before surgery. If there was a chance he could avoid it, it was worth exploring, and our gamble so far has paid off.

Good luck, and I hope Remicade worka wonders for you.

PV