Sliding back downhill

[chrisnsteph1022]

Quick summary: started Cimzia last February. Had about one decent month (3 bathroom trips/day) then slowly started declining, but bleeding stayed gone. Added Imuran in October. No improvement at all from that. Did an elimination diet and started taking several supplements in November. No improvement. Now going 7-8 times/day. Added psyllium husk (thanks to someone here) a couple weeks ago and bathroom trips went down to 3/day, but pain remained the same (bad). That lasted a week and the past 5 days have been back to 6-7 times/day. This morning, I passed a lot of blood (haven't bled in months).

I've determined (through testing) that I cannot have gluten, red meat or corn products. Dairy seems fine. I did really well over the holidays, staying away from the good (bad for me) foods. I'm still miserable. I had a low-grade fever last night, which has never happened due to Crohn's. I'm worried I've picked up a bug or something.

I don't really have a point here. I just needed to get it all out. I'm frustrated that nothing is working. I'm doing everything I can to fix this and nothing is working. I see my GI next Wednesday (1/11) and will be switching to Remicade and dropping the Cimzia, Imuran and Apriso. I have a good feeling that Remi will be the answer for me. I hope. I don't think surgery is an option at this point. My entire colon is affected and I'm just not ready to have the whole thing taken out.

 

[handle]

It is sometimes a complete mystery...you are doing everything you can and yet it worsens. Remicade is a good option and may simplify things for you. I think simplifying things is a good way to go when confusion sets in (too many things going on) - back to basics...
All the best.

 

[xJillx]

I am so sorry to hear this Stephanie. I sure hope Remicade will be the answer.

How soon do you think you will be able to start treatment?

 

[chrisnsteph1022]

No blood today, so that's an improvement. I did have to spend my lunch break sleeping in my car because I was so tired. Blah.

My appointment is next Wednesday, and I'm guessing it takes a week or two to set up and get approval. How long do I have to be off one biologic before starting another? And should I stay on the Imuran until I'm in remission? I don't want to be on a biologic AND imuran long-term.

 

[handle]

Imuran is used to help prevent the body making antibodies against the Remicade, as well as helping achieve remission. It takes at least 3 months for it to take effect, so it's good timing really. Studies show that the combination of the two drugs is more effective.
(In remission you may decide to lower the dose or stop completely.)