Cimzia vs. surgery

[krbuerg]

I could really use your 2 cents right now!

Since Jan, I have been taking 60 mg pred, 7.5 mg methotrexate, 1 mg, folic acid, and remicade 7.5 every 6 weeks. The blood, cramps, and frequency have keep getting worse. Saw the doc and his surgeon two weeks ago and they explained that the MRI and colonoscopy showed active disease where I am put back together from a resection, also in the transverse colon and again in the rectosigmoid colon. They explained that the only way to get me better is if they remove my colon and possibly rectum.

I am adamant about exploring EVERY other possibility before surgery, so I have been taking lomotil 4 x day. The bleeding has stopped for the most part, but that always happens after the remicade-I am good for about two weeks before it starts up again. The lomotil seems to be helping with the frequency.

I see the doc this Wed to see how things are going. He may switch me to Cimzia. Have any of you ever been in this situation?

:sign0085:

 

[Hedgehog]

Hi Krbuerg,
Sorry I haven't been in your situation but there are others on here who have, who may be able to help. Really feel for you and hope it gets resolved soon,
Gail
x

 

[Manzyb]

Hi There!

First, I'm really sorry that it is getting worse and they are talking surgery. Have you talked to your doctor about upping the Remicade? The regular 8 and 6 week infusions were not keeping me well enough. My GI but me on 10 mg/kg every 4 weeks and that made it better and less down time between the infusions. Also, a couple of years ago I switched over to Humira and that helped out a ton. I would just see if they can give you something different.

Hang in there and I hope that you can find an alternative to another surgery.

 

[CDDad]

Hi Krbuerg,
It's such a tough call. It's so hard to come to terms with loosing your colon, even when it not functioning too well. You are on a high dose of pred for a long time. And with the other powerful drugs it does not seem to be getting you under control.

Somtimes surgery is the right answer - Good luck with your decision. Also, get a 2nd opionion from another surgeon.

 

[kenny]

Might want to consider the radical diets if you have not already explored those options. If you don't already have any perforations/fistula putting GI material where it does not belong taking a look at soft/liquid, SCD or even the celiac diets might help bring on remission?

 

[kello82]

dang, sorry to hear that things are not looking so good

can you go for a TEMPORARY ostomy?

my docs wanted me to get my colon/rectum out as well, but i just wasnt ready to go there yet.

maybe giving your lg intestine a break will help the inflammation calm down