Hey everyone. I've read the archives (what I could) about the different types of arthritis that can be associated with IBD. Fun stuff. I'm 18 months out and it hasn't been easy: months of cuffitis followed by pouchitis and now joint pain. Started in my right knee, got x-rayed, some osteo was normal for my age (64) but why so much pain and swelling? Took two shots of cortisone to settle it down.

Then my right shoulder started to feel like it had impingement syndrome, got an MRI and same weak diagnosis--some osteo and a small spur (normal), but why so much pain? A shot of cortisone did nothing and the orthopedic said, "Sorry, no more. Go see a rheumy." That is easier said than done. My appointment isn't until January and from what I hear, it's not unusual to take up to a year for first visits.

So what am I do as this pain continues and in fact, has spread to both wrists, both knees and both shoulders? My orthopedic gave me a month of Celebrex, which won't last long and only cuts the pain and inflammation by about half. I also think it's causing pouchitis so my GI put me on Xifaxan (yay, more to deal with).  

Anyone been here? What do you do?

I asked my family doc, my GI and my orthopedic surgeon to all call the rheumy clinic on my behalf and get me into an earlier appt. None of them gave me much confidence that'll make much difference. So seriously, what do I do about increasing pain and stiffness waiting for a rheumy appointment? Should I try tumeric or any other supplement? It hurts typing this!

Thanks all. 

Original Post

Hi I'm still new to this but I'm seeing a rheumatologist tomorrow because I have joint pain with swelling in both my ankles, my right hand and my tights. I can barely walk. I run a temperature between 99-100 F every day. I'm convinced it my auto immune disease still acting up because they said after colectomy my ulcerative colitis is cured but that hasn't been true. They took me off of all meds. Now I'm suffering every day and I'm in no shape to work but I work anyways. My surgeon has fired me so I don't have adequate follow ups because I screamed at his staff in pain and I'm in the autistic spectrum and I was in pain and they said I was rude and they don't care. They always sit on the longer lever. So anyways if I'm still worthy for care (I'm depressed too of course and now even more) I'll go in tomorrow and hopefully they give me some medication again that I need to be on. I could never be without meds with colitis and I guess a colectomy did not change this. I'm 34. I've had colitis since I was 17. I'm sick and tired! 

Quick update. I've called everywhere and landed 3 appointments to choose from.
One in Jan 2020 (that's the local one); one that's Sept 27 (3 1/2 hours drive) and one that's Sept 12 at Cleveland Clinic (a 7 1/2 hour drive).

I picked the 3 1/2 hour drive appt a month from today.

Well if there’s one thing I’ve learned through this “adventure,” it’s to take it one day at a time. It will get better. We will never be as good or feel as good as when we had our colons. And this joint pain? It too will be manageable. No doctor or family member or friend can know what the solution is without you being a willing and active participant in your own recovery. The burden is on us to take control and figure it out, because if you don’t, you can end up in a downward spiral where you don’t want to go. Who needs mental misery on top of physical misery? See? I’m proving to myself again that I’m down but never out! It will get better. I’m also aware from  my former ostomy support group that there are so many people living their lives with much more physical pain and mental anguish than me. That too keeps my own frustrations and anxieties in check. It will get better.

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