Multiple questions rolled into one - Remicade, surgery, prednisone, etc.

[CassMarie]

Hi everyone,

I'm new here. I'm 24 years old and I was diagnosed with Crohn's Disease back in January of this year. I had been very sick for about a year before I got diagnosed and if I had not switched my primary care to Massachusetts General Hospital, I may have never found out.. my old primary told me I was lactose intolerant and never did ANY tests.

Anyway.. since I was diagnosed I have tried the following:

Azathioprine (which gave me severe joint pain to the point that I was crying if I tried to move.. got off of this quickly)

I have been on prednisone for 3 months.. with a dose as high as 40mg per day
I've also been on budesonide 90mg per day for about 2 months now

As of yesterday he has taken me off ofthe budesonide and I am going to start coming off the prednisone (I demanded this since as you can read below, it isn't working and I have gained 20 lbs since starting it.. I went from a size 1 to a size 7.. and at my age, that's not okay with me) My face has also been very red and breaking out when I normally have porcelain like skin. It's awful enough feeling the way I do.. I don't enjoy looking bad too.

I just went in for a follow up MRI because I haven't felt much better and it turns out that since my colonoscopy and diagnosis, the inflammation in my ileum has gotten worse and there's now a stricture that my doctor didn't see before so he thinks it's new.

He has given me two options: Remicade or laprascopic surgery to remove the affected parts of my intestines.

Since I haven't had luck with any medication so far, I am nervous to start remicade.. especially considering the side effects of it. What has been peoples experiences with it? I was also told each treatment is at least an hour plus the hospital is 25 minutes away (in the middle of Boston) so I am looking at close to 3 hours for each treatment with traffic and such.

For those of you who have had surgery, what is the procedure like? Scarring? Post-op difficulties? How long until you can go back to regular activities? How long until your bowels return to normal? How long prior to surgery do they make you stop eating (I love food, I have an issue with not eating).. how long after til you can eat again?

Any information would be VERY helpful. I go see my GI on May 9th and with the way things have gone so far.. whatever I choose will take place fairly quickly after that. Thanks so much!

 

[Mia E]

Hi cassmarie,

I just had surgery (3weeks ago) have a look at my profile for photos of the incision 1wk after surgery and look at some of my earlier posts to see how the surgery was for me. Obviously there may be some differences in how thy approach it for you if you decide to go that way, but it might be useful anyway!

I was never offered remicade so I can't comment on that.

Good luck! I'd ask your dr too which he thinks would be the best option,he's supposed to know best!!!

Ps your delayed diagnosis sucks....I had the same experience of my old family dr dismissing my symptoms (as ibs) and no tests, until a newly qualified dr joined the practice and got on the case for me :dance:

 

[Switalski]

Cass Marie,
I had surgery 3 weeks ago. Prior to that I was on remicade. I am scheduled to go back on remicade May 10. Remicade is fine for me - no ill effects. Each infusion takes about 2.5 to 3 hours for me. I am scheduled to go every 8 weeks. When you start, however, you have the first three infusions in a six week period.

In my case, Remicade was used to reduce inflammation. I am now using it as a maintenance drug because I still have some Crohn's in the portion of my colon that was not removed.

Make sure to ask your GI what he/she wants to accomplish by using Remicade and if you do end up having surgery, whether Remicade will be part of the plan post surgery.