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10 replies

My body is falling apart!

EricEricMember
Hey guys,

Well, it's a beautiful warm sunny day, so I decided to go for a nice long walk, figuring its going to be the last nice day before winter kicks in. About 10 minutes into my walk my right hip and knee start hurting. 10 minutes later, the pain was so bad I had to stop and sit down. By the time I got home I was in agony, but why?? I know UC is an autoimmune disease, and I do have arthritis (had surgery on both shoulders because of it), anyone have similar problems? If so, what did you do about it? I'm going to pop over to work (still on disability until January 7th) and add myself to the clinic (one of the advantages of working in the fracture clinic). I'll speak with the Orthopedic surgeons I work with, maybe they can figure it out. I know it's all related to my UC, the rotten gift that just keeps on giving and giving and giving!!! As if the osteoporosis,arthritis, anxiety, depression, and chronic pain weren't enough, why not add a hip and knee replacement to the list? Waaaaa!!!! In 8 days I turn 44, but I have all the health issues of someone double that. I am SO fed up with this! A few years ago nothing could slow me down, I was cycling hundreds of kilometres a week, strong, and happy, now I can't even walk a measly 10K without pain! Not fair!!! Seems my K pouch surgery in June sped things up. I've always had the occasional joint pain, but this is unbearable. Forgive my whining, but admittedly, it's starting to bring me down, I know many of you can relate! Any advice you can offer is greatly appreciated, and a happy thanksgiving to my American friends,

Cheers,
Eric Eeker
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Jan DollarJan DollarModerator, RN, retired
Yep, that's me too. Years of dinking around with podiatrists, orthopedists, physiatrists, physical therapists, etc., ect., etc.

Finally, my PCP referred me to rheumatology after sacroiliac pain lasting about 6 months. I was diagnosed with enteropathic arthritis and put on anti-TNF biologic treatmentx. First Enbrel, then Humira, now Simponi. Got me from walking with a cane and wearing multiple braces and not sleeping well, to functioning reasonably well without those things and being able to sleep at night. I still have flares we treat with short courses of NSAIDs and/or prednisone or steroid injections.

Night and day difference for me.

Jan Smiler
C CeeeeCeeeeMember
Hmmmmmm! I am so dependent upon Ultracet to just take the edge off the pain and/or a aching I feel in my left shoulder and arm. My internist has advised I don't take this med as much as I do. Without it, I'm miserable. Does a rheumatologist run tests which actually prove what is causing the pain? I'm tired of playing guessing games with the symptoms!
skn69skn69Member
Hi Eric,
Poor kid...I am so sorry...I have had the right side pain in the hip/sacrum and knee for years...I sometimes suspect that it is a little pouch related with our pouch hanging off of the let abdominal muscles...but Docs say no...I sleep with a body pillow on my right side with my knee/hip/shoulder thrown over it to make my nights easier and ease the pulling pain.
I have been seeing a chiro for years and it does help...she doesn't just crack bones but does physio, ultrasound, heat therapy, stretching etc and it usually helps a lot...at least for a while. My naturopath put me on glucosamine/condriton and I take collegene as well (they help somewhat and stop the degeneration of the joints)...pilates, yoga and swimming are good too.
I do a lot just to keep things from rusting in there and it is all about maintence...I know that the first year post op is the hardest but give yourself a break kid...it takes time and you are still recovering. Sometimes you catch a break and things feel less stiff after a while once your body gets used to what is going on and some of the inflamation goes down.
Don't forget that your abs are just getting used to having a pouch hanging off of it and there has got to be a lot of inflamation going on there (can not be good for the body)...
Try mild anti-inflamatories and see if it helps.
Hugs and Happy birthday sweetie...mine is tomorrow!
Sharon
Jan DollarJan DollarModerator, RN, retired
Arthritis is the most common extraintestinal complication of IBD, affecting about 25% of those with Crohn's or UC.

http://www.ccfa.org/resources/arthritis.html

As to tests, they are mostly to exclude other things like lupus, rheumatoid arthritis, etc. imaging can rule out mechanical damage. I have both inflammatory and osteoarthritis. My rheumy said that the inflammatory arthrtis can cause early osteo changes. That's why I have pinched nerves in my neck and low back.

Jan Smiler
DH Donna HMember
Jan, I have heard more than once that after surgery, many folks end up with other problems not long after the procedure: Eric and his arthritis, a friend's son had knee surgery and two months later was diagnosed with leukemia, another acquaintance had a j-pouch performed and ended up with crippling fibromyalgia and arthritis afterwards. Is the body reacting from being opened up? My husband said no way but I am wondering if there is something to this.
Jan DollarJan DollarModerator, RN, retired
Surgery is a trauma, and yes, as a trauma, it can be a triggering event for other things. But, you can't let yourself think that "if not for the surgery I would not have developed ..." That is because other traumas or stressors could set the same things in motion, not just surgery. Think of it this way; what would be the result of not doing the surgery? Probably not a good result, plus the other problems would still occur at some point.

Jan Smiler
skn69skn69Member
Donna,
I look at it as 'chicken or egg'..? Which came first the surgery or the disease? Or was the disease always there and the surgery just made me slow down enough to see/feel it? I have had a bucketful of diseases and other than the cause-effect medically related ones from drugs or post-op complications I figure that they were there just waiting around the corner to show up and bite me in the ankle.
Nothing that you can do about it...some of us are just lucky Big Grin
Sharon
DH Donna HMember
Yeah, I see what you're both saying and it does make sense. I have PSC (14 years at least) and may be having surgery so I am looking at this in a very personal way. I have had no symptoms and my blood work all comes back normal. I could be pulling the trigger and just would like more time without any of the horrendous symptoms. But............that might not happen either.
Jan DollarJan DollarModerator, RN, retired
I can see your concern, not wanting to upset the apple cart when your PSC is quiescent now. Honestly, I have no idea if unrelated surgery could trigger an acceleration of PSC. A good question to ask your hepatologist, and a good reason not to have any surgery that is purely elective. A quick online search did nt turn up anything to indicate it is an issue. I would bet that the magnitude of the surgery would be a factor, or if it was in any prximity of the biliary system.

Jan Smiler

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