New here, old pro with Crohns

[bbr]

Hi to all of you. I was diagnosed with Crohns at 25 years of age, about 30 years ago. I have used every available drug for Crohns, been through several lengthy hospital stays--every time the doctor was sure I would have to undergo surgery to began the road to recovery. Yet, I have never had any type of surgery, and am currently in remission, with Remicade as the only medication currently taken. I have a recurring problem right now with low potassium absorption, which causes muscle twitches in my feet and legs when I lay down at night for bed. Potassium supplements don't seem to help very much, and I have begun drinking a glass of soy milk (considerable potassium content here) before bed and that seems to help.
My first Remicade treatment was in about 1996 or so, and it backfired terribly. I experienced a break out of fissures, fistulae and other really nasty sores covering my genitals and rectum, as my body reacted violently against the drug. So my doctor put me back on the dreaded prednisone and sulfa drugs for about 6 months to get things back under control, and then used a Z-Pack prep before trying the Remicade again. The second time was a charm, and it has been smooth sailing ever since. My infusions are every 6 weeks, and compared to the flare-ups I've had in the past, the time spent hooked up to an IV is well worth it. To those who are just starting, I pray God blesses you to enjoy the success He continues to afford me, and let's all pray that one day there will be a cure for this debilitating disease.:dance:

 

[Ckt]

Thank you so much for your story!wowie..I'm so happy you are in remission! That's a long time in having crohns and you seem to be keeping a positive outlook..can you tell me how you do keep positive?i struggle at times with feeling down and that there's no end to it..I try to keep up and I love to hear how others do!!

 

[Angrybird]

Hello and welcome to the forum

I am so pleased you are doing well on the Remicade, we do have a sub forum dedicated to this if you would like to have a chat with the folks here about it. With regards to the low Potassium are the supplements you take over the counter tablets of something prescribed by your doc?

AB
xx

 

[David]

Hi there and welcome to the community!

When they tested your potassium levels, did they also test your magnesium levels? If your not having much luck raising your potassium, it's likely because your magnesium is low as well. And magnesium deficiency is known to cause the twitches you describe.

I'm glad the Remicade is working wonders for you by the way