Another exciting new Crohn's story from a new member!

[mharvey90]

So I'm 19 years old and was diagnosed with Crohn's disease when I was only 9 years old after years and years of suffering with no answers! I of course was blasted with steroids and after a week or so in the hospital I started to make an awesome recovery, gained weight (of course) after being skeleton-like in figure. A few years later when I was 12 I had another nasty flare up and I had 6 inches of bowel (the ileum) removed along with my appendix. Not much later I was diagnosed with osteoporosis due to excessive steroid use, which I went on Fosamax to repair. I had 3 doses of Remicade and ended up going into another remission, which actually lasted about 7 years, until I had another nasty flare up in March of this year just as I was wrapping up my second semester of college. I was out of school for a week and almost had to drop my (very expensive) second semester on medical leave. However, I fought it out and refused steroids for about 2 months hoping the asacol and pentasa and eventually Remicade (after a long painful struggle with the insurance company) would work. They didn't of course and I gave in and started up on 40mg of Prednisone per day for 1 week. After a week I started to taper down, and it's been about 6 weeks now and I'm finally off of the prednisone, and feeling a hell of a lot better. I'm also on Remicade and just had my 3rd dose a couple of weeks ago. However, it seems that the Remicade only helps temporarily; after my first dose I felt better for only a week. After my second dose I felt better for 3 weeks. And it's only been a couple weeks since my third dose so I'm still feeling good, but we'll see how long that lasts. Is anyone else on Remicade that can give me some insight as to if it has put you into a complete remission, or if it is a temporary fix? I have an infusion every 8 weeks so I can hope that if it is temporary, it is at least 8 weeks so that I feel good until my next infusion!

 

[fenway1971]

hi harvey -
welcome to the forum. i've never had remicade treatments but there are plenty of folks on here who have.

have you looked into altering diet to manage your symptoms?

 

[Nancy Lee]

Hello and welcome to the Crohns Forum.

You've come to the right place to meet up with other Crohnies,
ask questions and browse through the wealth of information
throughout the forums.

I have not had Remicade as a treatment myself but
I know others here have....
and they will be able to answer your questions
on that subject.

Right now I just wanted to hop in and say WELCOME!!

Healing hugs~Nancy

 

[sandylou]

Hi!
I have had several sets of Remicade infusions. I feel like WonderWoman for a bit, but slowly go back to my 'Crohn's normal'. I have completed 2 Masters degrees since my diagnosis 19 years ago! I am on Pentasa, I hate Prednisone! It makes me a very grouchy insomniac. I do a good bit of 'diet' thereapy. My Gastro Doctor is also quite wholistic in this approach. When I feel the pain and cramping coming on, I drop back to a diet of saltine crackers, bananas, and hard cheddar cheese.
This works for me! My docotr knows that if I ask for Prednisone, I am really hurting! Good luck my friend!

 

[mharvey90]

Thanks! I know what you mean about the wonderwoman feeling after Remicade for awhile! and I definitely got a bad case of insomnia while i was on the prednisone as well.

My issue with setting up a diet plan is that I just recently found out that I have hypoglycemia, so now I am supposed to be on a diabetic-like diet, which eliminates the carbs that I used to love and helped to bind me up during bad flare ups. I have to get with a nutritionist some time soon to sort that all out.

 

[RobK]

Look into Low Dose Naltrexone (LDN). It has very little side effects and is cheap. The sad thing is its not a mainstream treatment since it's a cheap generic drug. I also follow Specific Carb Diet (SCD) and this combo has helped me get off of prednisone hopefully for good.

RobK