i was diagnosed with ulcerative colitis about 15 years ago, and have a j-pouch.  Genetic testing recently revealed I actually have Crohn's.  Since my j-pouch surgery (and actually on and off for years before, too) I have been bothered by joint, muscle and tendon aches.  I have ongoing issues with frequency with the j-pouch, but usually nothing like the urgency and pain I had when I was very sick, before I had my colon removed.  The joint aches are another story, and I've seen a series of rheumatologists to try and help.  I've tried remicade (got too many serious infections... gall bladder, throat, etc), enbrel, Stelera, and methotrexate. The only one that does anything is the methotrexate, and it only takes the edge off slightly.

my current rheumatologist got x-rays and a full body bone scan, and is insisting that most of my discomfort in fact comes from osteoarthritis, so she won't try Humira for me, and is shipping me off to an orthopedist.  I don't really believe that's the problem though.  I still occasionally (once a month for a few days, sometimes more often) have flares of urgency and pain from bowel issues, and when that happens, the joint issues flare too.  I also have some minor skin eruptions that coincide,  I feel like I have low grade disease, characterized mainly by joint pain.  Chronic and painful, but Low grade enough that it's hard to get a diagnosis and proper treatment.

these flares don't sound like osteoarthritis to me.  They are not bad enough to get a scope.  I'm very sure they wouldn't register as serious enough intestinal disruption for a GI dr to warrant a prescription.  As far as I know, the orthopedic options for the osteo issues I do have would wreak havoc with my gut, and I'm not in a position to entertain the thought of surgery if that's what they'd recommend.  

Also, the rheumatologist diagnosed "generalized osteoarthritis", and it seems the orthopedists are reluctant to look at something so non-specific, so I'm having trouble getting in to see one. 

I'm having serious trouble at my job.  I manage a bar, and work long hours of physical work.  Lots of repetitive motion is killing my tendons, and I'm in great pain most of the time.  One of the signs I recognize is when plantar fasciitis rears it's ugly head.  That's usually a sign that everything will hurt, even my ribs and shoulders.  

Just venting, because I thought new treatments were going to become available with time, but am realizing that diagnosis is becoming a roadblock.  I really feel like an old old woman.  I'm 55, and am usually quite active.

Original Post

I feel your pain, so to speak. I also have osteo overlapping with the inflammatory arthritis. According to my rheumy, the inflammatory arthritis can accelerate the osteo beyond what you'd expect for your age. I even have developed severe spinal stenosis in my neck by my mid 50's. 

So, I've bounced around various biologics (now Remicade), plus I take Imuran, sulfasalazine, tramadol, Tylenol, and Robaxin. I keep moving as much as I can and rest when fatigued. No perfect answer. I've never had much luck with physical therapy or steroid joint injections.

Jan

Can your GI or PCP refer you to a different rheumy for a 2nd opinion? It sounds like your current doctor isn't listening to you. You should be able to use the same test results with a different doctor.

I am so sorry to hear about what you're going through. I dealt with Ulcerative Colitis for about a year before my body became completely unresponsive to medication and I had to have my colon removed. I had an ileostomy for 6 months and am now healing from takedown surgery. 

A friend of my dad's had these same surgeries and has been guiding me through the whole process. After getting pouchitis several times, she found this doctor and after working with him never experienced pouchitis again. I intend to work with him myself soon to hopefully prevent any further issues or complications. I realize it's not the same, and your issues sound much more severe, but if there's even a chance that he could help you I figured it was worth sharing. He does free consultations, so maybe you can start there! I hope you find answers and relief soon!

Dr Albert Snow:
https://gicure.com/

-Kalyn

 

You mean what I posted? I will take it down, if you prefer. It is legitimate, and I was only trying to offer help! But I understand the need to be careful on these sites etc and am happy to delete my comment. 

ehbraun posted:

This doesn't look legitimate to me.  I will contact moderators to report.

Ellen,

Thank you for you concern. I see why you had it.

I checked out Kalyn's other posts and replies and she is not pushing this in her other posts so I believe she has legitimate concern. So thanks to both of you!

Bill

Last edited by Bill Johnson

Kalyn, when I looked this dr up, I found several alarming warnings right away, and they made me concerned.  If you do consult him yourself, I'd be interested in hearing about your experience.  I hope it's a good one!

I will do more research first and will definitely let you know if I choose to pursue it and what my experience is! I am really wary of claims for cures etc that I find online, especially after all I've been through in searching for help with UC--you're wise to be concerned. There's a LOT of false advertising/scams/etc out there. Since I know someone who he helped, I felt differently about him but I will still look into it further! I really appreciate the concern. 

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