New to forum but not to crohns

[JohnathanO]

Hi all, I was diagnosed with crohns in 1996 (21) and have been up and down ever since. From the getgo I have been on Mesasal and still am. I was put on Imuran but ended up in the hospital with a severe reaction to it and a 104 fever for 3 1/2 days. Once my doc found I couldnt take that drug I went for an infusion of Remicade. That worked for some time but I had to go for one more again 3 years ago. I had a scope a year and a half ago and my doc said there was no evidence of crohns at all. About 4 months ago I started to get bad again. I have been on pred for about 4 weeks and it helped a little but I still expeirenced bloating and the pain that goes with it. After several trips to my doc and specialist the decision was made to try Humaira. I was somewhat worried because the nurse that called me to set up the injection training said she works for the company that produces the drug and it works great. I asked if it would put me into remission like the remicade did and she said probally not and i will be on it forever. I have one more appointment before i am supposed to take the drug so I have a huge list of questions to ask before I make up my mind. So about 4 or so days ago I changed my diet and the big thing was chewed my food super long and guess what....bloat, pain, etc. has been gone since. I hope I can get some super advice from all of the people here and maybe i can delay the humira for a while. Thanks for letting me rant! Johnathan

 

[Crohn's 35]

Hey Johnathan! :bigwave: Welcome to the forum. You are two provinces over from me! I was on Remicade but allergic but most people do well and stay on it forever. The Humira works pretty good but petered out for me, but others do well. I too cannot take the immunosuppressors, attacks my liver every time. Prednisone works great but...the second you get down to about 20mg the symptoms come back. There fore you need a maintaince drug or a very stricted diet like the SCD even then there are no guarantees... Flares can come and go, stess is a culprit and bad habits like smoking , drinking alcohol are going to aggrivate it too. Avoid dairy, and take some digestive enzymes if you do eat something risky. I know being on meds is the last thing we all want but.... if you can avoid it you can try, just know that it can be unpredictable or maybe you could be one of the lucky ones. Lots of info and great people here!

Glad you are joining our community!

 

[DustyKat]

Hi Johnathan and :welcome:

Good to see you here. I can't answer any of your questions but would like to say good luck with your diet and treatments. This is a fab place with loads of support and info so please stay around and welcome aboard!

All the best,
Dusty

 

[Dexky]

Hi Johnathon, welcome!! Were you not scheduled for more than one infusion of Remicade??? I've never heard of someone just having one. Did you decide not to continue with it?? I don't blame you for wanting to stay med free, I just hope you can find a course that works for you. Good luck!!

 

[Astra]

Hi Jonathan
and welcome

Check out our Humira Club thread, lots of answers there for you.
I'm the same at the mo, saving the biggies like the biologics as my last resort when all else has failed. On Pred at the mo, so fingers crossed it works this time!
I do the low residue diet when I'm bloated with diarrhea, it works for me, you can find this on the forum.
Glad you found us, lots of friends here for you.
lotsa luv
Joan xxx