Crohns and joint & muscle pain

I have had Crohns for over 25 years and have had three resections in 1984, 2001 & 2007 I have been on various drugs over the years and had good and bad years, for around a year now I have been on infleximab by infusion, Methotrexate tablets as well as taking Questran to help digestion, folic acid and 3 monthly B12 injections.
I have had some trouble over the years with stiff joints in my hands, mostly in winter, but around four months ago I started getting real pain in my hands and fingers followed by them swelling, this then started in my feet and ankles, legs, knees, arms elbows and shoulders and seems to move from one place to the other on a 2-3 day basis, it sometimes even changes from being severe to the point of not being able to use my hands to just a slight pain and completely moved to, say a knee or a foot over night, my only respite now is too many pain killers and complete rest, as soon as I work (I don't to anything too manual these days) or take some exorsize one or another, or several of my limbs will be extremely painfull or sore to touch, the pain is not confined to my joints, in fact there is not always pain in the joint more around it and in cases up my arm or leg, more like, and it changes, tendon or muscle pain. Yesterday my ankle was swollen and painfull enough to cause me to limp and my calf muscle felt as though I had a cramp in it every time I put my foot to the floor. The strangest thing is this continuing changing of the area that gives most pain.
I am coming to the end of my tether with this, my Doctors keep telling me its to do with the Crohns, we will have to do more tests etc.etc. my Crohns has been very good as far as I am concerned for some time now, although I have recently had a pillcam which seems to reveal that the Crohns is active but there is nowhere to go medically, looking like the only option is more surgery, if the surgery would get rid of the new symptoms while the Crohns stays at bay, great but I am now 54 and not keen on yet more surgery when I feel in myself that this is a seperate issue from the Crohns.
Any help at all would be appreciated, if any one else experienced anything like this or any proffesionals out there have heard of similar symptoms please get in touch through this site or direct to ***@**** Thanks.

[TrudieC]

There are some arthritis types that can go with IBD and they can run tests to determine that as well as some xrays.  You need to see a rheumatologist.  However, based on your symptoms I would suggest you also have your thyroid tested and also look into fibromyalgia.  In the mean time increase your intake of potassium rich foods (potatoes, bananas, gatorade, etc.) and try taking a magnesium supplement.  Good luck and I hope you can get some answers.

[lizziecee]

Hi,
I was diagnosed 40 yrs ago, when 25 yrs, with Crohn's/Colitis (disease in the small intestine around the ileum, and the first part of the colon). I was very well in my 30's, but in my forties had a number of severe rectal haemorrhages. No other significant problems, except getting Leishmaniasis from an abandoned dog left outside our villa when we lived in southern Spain.  As I have become older, more complications have occurred; twice hospitalised recently with erysipelas, and last year, a blood clot in my collapsed lung,, which my many doctors can't figure out, except it may have come from my breast cancer, that had spread to my axillary lymph nodes, and to cap it all, my pancreas has packed up - a rare complication of Crohn's., which is controlled by taking Creon enzymes when I eat meals, or have a rare snack.  I had my first resection last year (a right hemicolectomy) which was more difficult than the two surgeries for my breast cancer, but I am still here...happy and living.

Meantime through 25 yrs of steroids, I have osteoporosis (diagnosed through various DEXA scans), and osteo-arthritis of both hands, hips and feet.  This has brought its' own problems, much like yours...left hip hurts on walking or sleeping on my right side; feet hurt after an hour or so standing doing cooking etc., and now I have just been diagnosed with soft tissue damage in my right shoulder and have started physio, which is helping.

When I sit down (rarely!), with my feet on a footstool, my calves ache....saw my GP and he prescribed Glucosamine (at least 1,500 mg per day) and this has helped the pain and aching. I also tale Calcichew/Vit.D twice daily. I have regular 2 monthly B12 shots as my terminal ileum was grossly scarred, and was resected last year.

As far as active Crohn's is concerned, the new pillcam will not really help....it may show some inflammation in either or both small and large intestines, but it cannot take biopsies, which is the ultimate diagnosis with pathology reports, and important to rule out cancer of either intestine, although rare in the small intestine.

I too have occasional pain in the groin, thought it may be a hernia, but guess it is just another complication of Crohn's in the lower colon.

I cannot really advise you on pain meds...I only take codeine phosphate before retiring, as my Gastro suggested it, to slow down my motility overnight.  I also take two loperamide on rising (as early as 4 am) with pain in my lower abdomen and a much needed bowel movement, which does ease the pain. I then take two  more loperamide before eating a light breakfast - boiled egg and a piece of home made organic white bread. Still get diarrhea within an hour, but then it stops, and I don't get diarrhea after our evening meal at 6 pm.

As Trudie suggested I have had my thyroid tested recently, it is fine,. and I have seen numerous IBD Nurtritionists at my hospital, but quite frankly, they know less than I do. I keep to a high protein, high carb, low fat, low fibre diet, plenty of liquids, and my gastro and specialised IBD nurse are in agreement. I would not advocate taking any supplement without your gastro's approval. I have 2 weekly comprehensive blood tests, and if I need supplements or dietary supplements they advise me.. I don't believe you can take dietary supplements without your gastro's concurrence, with such a serious incurable disease.

Hope this helps...it is a long hard hard with Crohn's...and I do empathasise...I told my gastro I found breast cancer treatment duck soup compared to this foul disease and he concurred.

Take care,
Liz.