My Whole Crohn's Experience!

[purplegurl]

Hi! I was diagnosed with Crohn's disease when I was 15 and I'm 16 now and was hospitalized in January for three days. My dad also has Crohn's and was diagnosed when he was 15. He's currently in remission for 13 years now. My doctor has put me on tons of different medications. I was on prednisone for about six - seven months on and off and found out I got C.Dif after the prednisone use. After three or four courses of flagyl it was doing nothing for me, and I still had inflammation which the doctor couldn't tell if it was from Crohn's or C.Dif. I am on a 10 day course of Vancomyicin now and I take that four times a day. While going through the C.Dif medications I was also on Entocort to treat my Crohn's after deciding that prednisone was too strong and a short trial of 6MP gave me liver problems. After going through a bone density test that my doctor had recommended, I was diagnosed with steroid induced osteoporosis. I am now going for a second opinion on everything, and going to see a Crohn's disease specialist instead of just a GI. I was just wondering if anybody else had ever experienced the same kind of complications and everything? Remicade also seems to be the next option for treatment since I can't use the Entocort anymore because of the osteoporosis, so I wanted to see the good and bad in Remicade? I'm just hoping that everything will calm down soon and it'll all just get under control!

 

[Jennifer]

Hi and welcome to the forum!

Check out the Remicade subforum here: http://www.crohnsforum.com/forumdisplay.php?f=58 There's lots of threads on it about how well it works, side effects, what it does and all that good stuff. I've never taken it before though.

There are some people on the forum who have had issues with the 6MP and definitely the Prednisone. They are both pretty harsh meds. I've taken both and can't really take the Prednisone anymore because it messes with my blood pressure too much (I've got a heart condition, see my sig) but I did have issues with bone density while on it. I recently had blood work done to check it again since it hasn't been checked since I was about your age (I'm 30 now) so now I'm just waiting for the results.

I was able to tolerate the 6MP for many years (15+) but was just taken off of it yesterday (dunno what the blood work showed yet but apparently wasn't good since both my GI and Rheumy called the same day to come off it. Liver was slightly elevated about a month before). I'm only on Humira now.

Hope the Remicade does the job for you and that you'll be in remission soon!

 

[Angrybird]

Hello and welcome to the forum :bigwave:

Out of interest when you were on the Pred were you ever given any kind of calcium supplement?

Definetly check out the above mentioned forum as this will have lots of info about the Remi. I was on it myself a few years back and for several months it did a good job at keeping me well, unfortunately I then had an allergic reaction to it so it was stopped - this does not happen to everyone though.

Will be keeping fingers crossed you can be feeling better soon.

AB
xx

 

[David]

Hiya purple and welcome to the community!

I'm so sorry to hear of your struggles

With the osteoporosis, I would strongly suggest you request that your vitamin D and magnesium levels be tested as well. People with Crohn's are commonly deficient in those and they are EXTREMELY important for bone health.

I hope you feel better soon!

*hugs*