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Saw the GP today to go over the results of an MRI I had a week ago because of pain in my hips/lower back.

(Short History: I had assumed my hips and back hurt because of awkward positioning - because of fistulas, I can't sit straight down, and must lean, lounge, stand, recline, or lay on my side. Pain specialist thought that made sense and ordered Physical Therapy, which did nothing, so I went to my new GP. X-Rays showed nothing. Normal across the board, so he ordered MRI.)

Results: Not surprising to me, it is Ulcerative Colitis related. However, the specific diagnosis is somewhat rare in UC cases according to the GP.

1) Sacroiliosis. Inflamation of the sacroiliac that is attributed to the chronic inflammation associated with UC.

2) Edema in the buttocks and anorectal area. (I think the exact term was sclerosing edema, but I am not sure about that. I didn't get a copy so I am going by memory.)

3)Myositis. Inflammation of the muscle tissue which is largely considered a rheumatoid condition but not expected to be seen in UC patients as a rule. (Cause of fistulas???)

4) No significant inflamation in JPouch. (Last month I was put back on flagyl for 2 weeks after pouchoscopy revealed pouchitis.)

5) No visible evidence of rheumatoid arthritis as yet. (I'm guessing it is common in UC patients since the MRI report noted it's absence.)

So I'm back on Prednisone for a couple of weeks, which is the second worse scenario I anticipated.

I know.... you're all jealous that I get to go back on Prednisone. It is such a CHARMING drug!

But the good news is that there is a definitive diagnosis. My worst fear was the MRI showing normal, and here I am bedridden with hip pain that has no obvious cause. I can imagine my pain specialist raising an eyebrow if that had been the case.

AND.... this may also be a large part of the rectal pain I have been experiencing also. The GP is going to consult with the GI docs about that.

Anyway.... Even though I have been mostly bed-ridden for months, I'm feeling positive about the cross-communication that is going on with my doctors. To my knowledge, this is the first time that they have really been putting their heads together. Stating in no uncertain terms that they as a group are not going to let the debilitating pain and spiraling complications I have been experiencing continue as the status quo, and they are going to get to the bottom of it. No pun intended. Smiler

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Jan DollarJan DollarModerator, RN, retired
Are you sure it was not sacroiliitis? That is the typical IBD related diagnosis. This is the hallmark sign of enteropathic arthritis, the related disease of ankylosing spondylitis. It is the inflammatory arthritis of IBD that has a course independent from the course of the bowel inflammation. It is what I have and sacroiliitis was the primary symptom (upper buttock/hip pain) that sent me to the primary doc, who sent me to the rheumatologist when the pelvic x-rays were normal.

This is NOT rheumatoid arthritis, even though it is inflammatory. It usually is less destructive to the bone and your serology will be negative for RA factor. You may be positive for the HLA B-27 antigen, but it is not required for diagnosis.

I also get Achilles tendonitis, tennis elbow, golfer's elbow, inflamed knees, wrists, knuckles, and more. This type of arthritis is not so much in the joints, but in the bone insertions of the tendons and ligaments. This is why x-rays are normal in the early years with the disease.

The primary treatment is NSAIDs, if you can tolerate them. I couldn't take them after a few years, so I am now on biologics. Humira, then now Simponi. I save prednisone for very short bursts of treatment (about 2 weeks). I was diagnosed in 2005 and am doing much better now. Here is a link with info:
http://www.spondylitis.org/about/overview.aspx

Jan Smiler
Jan Dollar
P PDXDavidMember
Jan,

I'm going by memory, so it being sacroiliitis versus sacroiliosis is very possible. That portion of the diagnosis was not a surprise to the doctor, as it is commonly associated with inflammatory conditions in the pelvic region, like IBD, as you say.

The doctor let me read, but declined to give me a copy of the report yet. He said he wanted to include it with a report of his consultations with my other doctors, which he will mail to me.

I can appreciate that having raw, uninterpreted medical information can cause one to go off into assumptions which are wrong, so I understand why he didn't give me a copy yet.

The only biologics I took was Remicade (Enfliximab) in 2009 when I still had my large intestine, which didn't work for me, so I'm not sure if I'm a candidate for biologics.

Myositis was the "AHAH!" diagnosis for the doctor, I think. I believe that is what he was referring to when he said the results were unexpected, but might explained a lot.

Regarding the "tag team" tactics of rheumatoid conditions: When I expressed my frustration that when one thing ebbs for a moment, another raises its ugly head. He said yep, it isn't fair, and that is how Rheumatoid conditions work.... like they are deliberately effing with you. It was nice to hear a doctor sympathize with that aspect of things.

Regarding spondylitis, I did see that word on the report. Not sure if it said it was noted on the MRI or that it was NOT noted, but the word was definately on the report. Maybe that is something that the MRI doctor is leaving to others to diagnose. (The doctor did take blood to check for something.)

I'll follow up with more exact info when I get the report, but all of what you say makes sense. But that is nothing new - your knowledge of the whole spectrum of our collective conditions is awesome.
P
Jan DollarJan DollarModerator, RN, retired
I would think you'd still be a candidate for biologics even if you failed Remicade for UC. Even though it is associated with UC, the sacroiliitis of enteropathic arthritis is a separate disease, sort of like liver disease that you can get associated with UC. My rheumy skipped the Remicade treatment, which I am glad. The last thing I wanted was to have to go in for infusions every month! Home injections are sooooo much easier. I still have to do monitoring blood work every 3 months. The hope is that we caught it early before major skeletal changes, so maybe the process will be slowed or stopped.

But, the main thing for me is I finally was able to sleep at night. Before, I could not move or roll over without significant low back/upper buttock pain (SI pain). I could not sit in a chair for more than 15-13 minutes without having to squirm around. So, yeah, I still hurt, but it is much better.

The finding of myositis is not something I would put too much emphasis on, but it certainly would explain some of the pain. It is not a diagnosis, but a sign. I would suspect that it is due to ongoing, long term inflammation. When I was first diagnosed, I told my rheumy that sometimes I felt like I had fibromyalgia. She told me that it is a common statement and they go hand in hand.

Jan Smiler
Jan Dollar
13 Years & Counting13 Years & CountingMember
Oh My Gosh!! I just came across this...I've been having pain in my hip & lower back for a little over a year. I was told it was bursitis. It's painful, but I'm not bedridden & I work out almost every day even with the pain. (Spin, Kickbox, Pilates, Yoga)Shortly after that I had my first obstruction ever. (Have had well functioning J-Pouch since 1999.)Have had 2 others since, & I'm now being told the stricture I have cannot be balloon dilated due to the scar tissue that's right next to it. (This was attempted 5 days ago.) Recommendation is go to a bag. Not what I want, so of course seeking other opinions. I can't believe nobody has made the connection between the hip/back pain and UC. Something else to think about, oh joy! However, this site is AWESOME!! I hope both of you are doing well! Thanks for the info! Smiler
13 Years & Counting
BillVBillVMember
I can sympathize with you on what you are facing with your pouch. There are some good doctors who specialize in pouch and related problems and you are taking an appropriate step in seeking their opinion. I am sure you want to keep your pouch if it is medically possible to do so. If it turns out otherwise, there are two alternative procedures that would not require an external bag: the Koch pouch and the BCIR (Barnett Continent Intestinal Reservoir). There is lots of information about both procedures on the internet.
BillV

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