Off Meds completely

[Gunnhild]

I have a long history (40 years) of Crohns including 3 bowel resections. I've been on steroids (briefly) pentasa, azathioprine, and Humira. I quit Humira as my skin reacted. I was going to try Remicade but pulled out to see how I would get on without meds. I mark a calendar with a particular shade whenever I am sick. So far (about 3 years I've been doing well. Lately though I have had a couple of flares that seemed more than my normal blockage. The last two days I have had frequent colic pains and it is bad enough to prevent me sleeping. I take Ensure or Fortisip now when I get a blockage (or make a pureed vegetable soup when I'm not so bad). I feel vulnerable though, like someone living beside a river which floods. I have no idea if my bowel will block completely and I'll get septicemia.
Hopefully I will get over this one.

 

[Agent X20]

Best of luck.
I've had Crohns for 45 years. I was on aza for seven years but tapered off over the space of one year and have been totally free of it for six weeks now. I do get a bit twitchy when I get any symptoms, but so far so good. I am still taking mesalazine, no plans to come off that at the moment.

 

[Gunnhild]

I'm feeling better this morning. Azathioprine gave me skin cancers and I got a precancerous leucoplakia under my tonge.

 

[ronroush7]

I would be a little wary not being on meds at all.

 

[lenny]

My daughter has been off meds for 11 years and is living a totally normal life. She is unbelievably lucky!

 

[Gunnhild]

I would be a little wary not being on meds at all.

I'm hoping I can get treatment before it is too late. Funny but I seem to feel better these days although when I get a flare it is worse (tit for tat)?

 

[aypues]

Be very careful with being off meds. You may feel good for long periods of time but the disease is always there, it's the immune system overreacting. I was off meds for a couple years and became anemic from non treatment bleeding. Now I have strictures everywhere in my small intestine and thats even after chronic Entocort. You really have to treat Crohn's empirically (tests, levels, numbers) vs clinically (symptoms, D, pain) - it can be a silent disease but doing lots of damage that can be irreversible and require later surgery. Now i'm bleeding again, failed humira, and am on Prednisone. I'm going to see an IBD specialist at UCSD on Weds thank god.

 

[Gunnhild]

Be very careful with being off meds. You may feel good for long periods of time but the disease is always there, it's the immune system overreacting. I was off meds for a couple years and became anemic from non treatment bleeding. Now I have strictures everywhere in my small intestine and thats even after chronic Entocort. You really have to treat Crohn's empirically (tests, levels, numbers) vs clinically (symptoms, D, pain) - it can be a silent disease but doing lots of damage that can be irreversible and require later surgery. Now i'm bleeding again, failed humira, and am on Prednisone. I'm going to see an IBD specialist at UCSD on Weds thank god.

I don't have diarrhoea. But occasionally I get a blockage and (I presume) leakage as for a while I'm not feeling well. I have had a script to use if I'm in a bad way so I can go and get a blood test. I thought I was being extravagant asking my GP for that but perhaps not?

 

[aypues]

I don't have diarrhoea. But occasionally I get a blockage and (I presume) leakage as for a while I'm not feeling well. I have had a script to use if I'm in a bad way so I can go and get a blood test. I thought I was being extravagant asking my GP for that but perhaps not?

you should be getting annual fecal calprotectin tests and imaging (MR Enterography) done to make sure the disease isn't progressing without clinical symptoms.

 

[Gunnhild]

you should be getting annual fecal calprotectin tests and imaging (MR Enterography) done to make sure the disease isn't progressing without clinical symptoms.

I had a colonoscopy about 5 years ago and a CT scan (for crohns I think) and I had 10 cm of severe stenosis. Our hospital system in NZ is stretched, I am 64 plus I have already lost 90cm of bowel?

Thanks for the alerting me to the MRI
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369125/