Scared !! On Humira for 5 years. Not working anymore..

[Mary:)]

Hi everyone...
So I was diagnosed with CD 7 years ago at the age of 40. Was put on Humira 6 years ago for a stricture. Things were good until now. I have been super tired, really bad joint pain, abdominal pain and distention, lower back pain, gas all the time!!! When I go to the bathroom it's not diarrhea, I really never had diarrhea. It's hard clumps stuck together!! I literally have to plunge the toilet every time I go. I can't take prednisone it makes me crazy. I just want it out. Can't I just ask my Dr to take the bad part out? I'm 47 I don't want to mess around with all these meds because while being on Humira I always get really sick. Thank you

 

[my little penguin]

Having your large colon removed or even part of the small bowel can remove damage areas but will not stop crohns from coming back .
Surgery is not a fix for crohns
You will always need meds

Have you had a scope or imaging recently to determine if humira is really not working ?

 

[theOcean]

Definitely try and see your GI, if you can. Even if you're getting symptoms again, it may not necessarily mean that Humira has stopped working. You can ask for some tests to see how long it stays in your system, as well as if you've developed antibodies to it.

You can definitely ask your GI for their opinion on getting surgery, but they will probably ask you about trying combination therapy, first. They might mention putting you on something like Mercaptopurine or Azathioprine in addition to the Humira.

Otherwise, if prednisone causes too many problems for you, you could ask about entocort. It has less side effects, but should still help.

 

[ronroush7]

Having your large colon removed or even part of the small bowel can remove damage areas but will not stop crohns from coming back .
Surgery is not a fix for crohns
You will always need meds

Have you had a scope or imaging recently to determine if humira is really not working ?

I had a resection six years ago and am associate of my GI told me that the Crohn's always comes back .
Talk with your doctor and ask about alternatives.

 

[Mary:)]

I am having a scope on Wednesday.

 

[ronroush7]

I am having a scope on Wednesday.

Best to you on the scope. Let us know.

 

[irishgal]

Mary - Humira only "worked" for a few years for me as well, though I never felt great. I had symptoms similar to yours except I had the typical diarrhea. Have you considered looking into Anti-MAP (AMAT)? Worked beautifully for me, way better than any immunosuppressant. I hope you find some relief!

Surgery is hell. Avoid at all costs, especially because it will likely come back. My body has never been the same since surgery. It creates as many problems in other areas as it fixes. It's a necessary evil, but I'd try all medical solutions before I ever did it again.

 

[ronroush7]

Mary - Humira only "worked" for a few years for me as well, though I never felt great. I had symptoms similar to yours except I had the typical diarrhea. Have you considered looking into Anti-MAP (AMAT)? Worked beautifully for me, way better than any immunosuppressant. I hope you find some relief!

Surgery is hell. Avoid at all costs, especially because it will likely come back. My body has never been the same since surgery. It creates as many problems in other areas as it fixes. It's a necessary evil, but I'd try all medical solutions before I ever did it again.

I had been told it will probably come back right before I had my resection.

 

[irishgal]

I think my resection (after which I started Humira immediately) gave me about 3 years, but at that point I had another child, and about 6 months after that my system went into a crazy flare. E nodosum, a different metastatic skin portion, terrible diarrhea, debilitating weight loss and horrible joint pain. Way worse than I had ever flared before. I tried everything, and the disease always found a way around it. It's like it would just attack a different system once I had fixed the first issue. A losing battle until I found AMAT. I wonder sometimes if the surgeries actually weakened my system enough where it couldn't recover.

 

[ronroush7]

I think my resection (after which I started Humira immediately) gave me about 3 years, but at that point I had another child, and about 6 months after that my system went into a crazy flare. E nodosum, a different metastatic skin portion, terrible diarrhea, debilitating weight loss and horrible joint pain. Way worse than I had ever flared before. I tried everything, and the disease always found a way around it. It's like it would just attack a different system once I had fixed the first issue. A losing battle until I found AMAT. I wonder sometimes if the surgeries actually weakened my system enough where it couldn't recover.

I don't know but the surgery could have weakened your system.