Colon gone.... now IBD-associated arthritis\Seronegative Rheumatoid Arthritis

Its me again! So I am now living with no colon and a working JPOUCH for 10 months now. Its been a wild ride. For the last 8 months after my last Prednisone pill I began to have an increase of overall joint and muscle pain - especially my hands and arms. This got worse and worse. For around the last 4-6 months my Primary doctor contributed this to the fact I was having trouble with anemia - this was chalked up to an inability to absorb B12 well - one of the Jpouch side affects. So we got that all sorted out through shots and daily B12 and Iron pills. Soon after I still kept having continued wide spread muscle and joint pains. Blood work has continued to show high inflammation levels the whole way; I remember my GI doc promised this would go away after my colon was removed. So I am very depressed. I was referred to a Rhematology Doc and after blood work he has diagnosed me with IBD-associated arthritis\Seronegative Rheumatoid Arthritis. The first line of defense with any Arthritis are some of the same meds I have taken over the last 16 years for UC. Doc did try a new med for me that is - Voltaren gel - an NSAID ointment as this would be the easiest on my jpouch and ... of course I could not handle the side affects. It immediately aggravated my pouch. Now he has prescribed the first med that I was given on 2001 when I was diagnosed with UC; Sulfasalazine pills. This is literally the Twilight Zone!!! So after all my surgery, pain and agony I get to go full circle and take anti inflammatory meds AGAIN. So please forgive my Rant and Rave - just the cry of an old UC man.

Have any of my old UC peeps been down this sad bumpy road of auto immune inflammation after they get their Colon removed?

Thanks iPoop. The Hydrocodone is keeping it livable for now. Sadly I cannot seem to tolerate any of the NSAIDs. I just started the Sulfasalazine pills - hoping for a miracle. Im not sure what bag of tricks the Doc has next as over the years I have tried almost every Biologic there is and no doubt have antibodies built up.

Thanks Old Mike, Connor77 - Appreciate the support. I am having some intermittent pain in the ankles and knees - sometimes wakes me up. No edema or weight loss.
I was able to get the levels off my portal from July:

Sedimentation Rate: 23
C Reactive Protein level: 18.3

New Doc says the ones from last week were a little higher.

Post Edited (GutsAreUs) : 8/23/2017 2:01:41 PM (GMT-6)

Have you tried a biological? Those were really well for arthritis and are good for j-pouches. I use them for my jpouch

Try not to get too down, I was never promised anything by my GI or surgeon other than I'd feel better once my colon was removed, I was so sick at the time.

I instantly got chronic pouchitis after my surgeries and spending 55 days in the hospital for those 3 surgeries. I had looked forward to not taking any more meds but it wasn't the hand that I was dealt.

A couple years later I needed my hip replaced due to long term Prednisone use and I may need the other one at some point replaced too.

It totally sucks, but the way I look at it is that if I complain or get too down about it then I feel that it just makes it worse for me. I promised myself that I'd make the best decisions that I could and that's all that I can really do. I have a great GI, surgeon and make sure that I have insurance that covers everything that I need.

Have you tried Xeljanz, embrel or Cimzia? They are all for arthritis and work well with jpouches. I'd start with Xeljanz

There is a stat out there that if you get one autoimmune disease you are X% more likely to get a 2nd autoimmune disease. I don't remember it right now but we do get them more often.

Some of the newer biologicals don't have the same issues with antibodies that the older ones have. I went off Stelara for 7 months and didn't have an issue restarting it. They target different mechanisms than the older anti-TNF drugs.

May not guarantee it but I can personally account for the simple fact that discontinuing a Biologic and going back on it can produce a bad reaction. When I quit Remicade and went back on it 1.3 years after I experienced a delayed 2 week crisis. Developed Bursitis in both shoulders and would up in the ER with hives. The Bursitis required Lidacain injections in my shoulders. The Hives lasted over a week and put me in the hospital x2. In any event I would be hesitant to ever try Biologic s again.

Post Edited (GutsAreUs) : 8/24/2017 9:27:05 AM (GMT-6)

Appreciate the feedback... if it gets to bad I might try that Stelara... so far the Sulfasalazine makes me feel like I have a hang over. Gonna try and take it at night.

Naltrexone??? Are you kidding me.