Crohn's and bones

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Hi all,

I was wondering if anyone has any ideas of what supplements I could take for my aching joints?

My Crohn's is running wild again and this time my joints are aching more than ever, I can't take tablets with plastic shells on them, nor ones that take ages to break down as my lack of small bowel can't hold on to them long enough and they end up in my colostomy bag.

All though I have had trouble in the past with joint pain and stuff this time it seems more long term (if that makes any sense) like my lower back, elbows, neck, knees and ankles. I'm only 37 and can't put them down to old age just yet (I hope)

Im a roofer but have done nothing or fell off nothing to cause more painful joints? I go the gym 5 times a week, so I've not been anymore over active to cause more painful joints?

I take azathioprine 200mg everyday and inject humira every other Monday, with vitamin B injections every 6 weeks? but have been for about 10 years now? So I don't think it's that? And the only thing that has started to change is my eating habits, meaning 2 mouthfuls of food and I'm done? And if I force a sandwich down I feel sick as a dog for ages after, along with tummy ache and constant trips to the toilet to empty my bag.

If anyone has any ideas that would be great, cheers nick

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9 Replies

  • Posted

    Hi Nick

    It is difficult to know what will help you with your aching joints, although much older than you I have had Crohns since I was 21 and I am now 71 and had a Colostomy some 25 years ago. Because of the same problem with my bones, I have had to resort to Bupremorphine Patches which I change after 7 days. The pain got so bad that I got very down, as it was one extra thing that I had to cope with. The Chronic Pain Clinic helped me and I am so much better than I was and I am pleased to say that I have kept the dosage to 10micrograms in the slow release patches. I have found that anti-inflammatory drugs have a bad affect on my stomach, making it bleed, although I do still take 100 mg Celecoxib with the Omeprazole to stop the irritation in my stomach.  I take B12 injections every 2 months.  Please don't take this badly but one of the things I have had to learn is that at times I have to take things very easy. You tell me you are going to the gym 5 times a week as well as being a Roofer, which is a hard job anyway, and it could be that your body is telling you to slow down a bit. One of the things I was told by my Specialist is that with Crohns you are running at about 75%/80% of what others can do.This may be thge reason for the painful ankles etc.  It's hard but another thing you have to accept.not fight against. My treatment in the past was long term steroids so I have never had the new drugs i.e. Azathioprine or Humira. I think your poor appetite is probably caused by the drugs but I tend to go along with what I fancy as opposed to what I should - my way of waging war on the Crohns. I was told in the early days that I would probably not get to 60 but I am still here. Most of the extra vits get chucked out of the bowel before they have had time to do any good,  One of the things I have found beneficial is freeze spray/ointment for painful joints and bones. Best wishes Sheila    

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    • Posted

      Hi Sheila I have just written a reply to Nick but not sure whether it has gone or not. My partner is the one with Crohns not me and I am interested I ,ways to improve his quality of life. He is your age and,has recently had a flare up for which he,took steroids. The side effects were terrible and he is now going to try Azathioprine, with great reluctance. I would be interested how you find this medication. Regards, Kate 
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    • Posted

      Hi Katebrenda. I think all you can be is extra patient and understanding because he is going through very hard times. I don't think it is easy to go through the pain and upset in your stomach that you live with, especially when you feel hungry and just want to eat without having after effects, when all you want to do is curl up in a ball. The only thing I can advise you is not to put too much pressure on doing things, say going out with friends etc. He will have lost his confidence on a mammoth scale. Be obsessed with where the nearest toilet is in case he needs to go quickly, perhaps you can help by knowing where they are if you go out. Make it part of you helping him, always arm yourself with wet wipes and tissues in case of accidents. You will.both become stronger if you fight it together. The new drug he is going to try is heavy and because of his age may not be good for him, Hopefully the flare up will settle itself down again. Best wishes

      Sheila 

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    • Posted

      Hi

      i tried azathioprine but couldn't manage to keep on it.  Last week I had a resection which was very successful and I felt amazing immediately. I still feel much better in myself but the sweating has returned.  It stopped whilst I had an epidural in but return once they removed it.  Any ideas why anyone.

       

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    • Posted

      I hated the steroids and for the last 5 years only methotrexate injections have controlled the bowels but I have still felt ill as I have arthritis related to Crohns.  Since last July it got so bad I had lost a tremendous amount of weight and my quality of life was nil I was always being sick.  My husband has been wonderful.  Last month they had a MDT meeting of all the consultants and decided that the way forward was a resection to stop me loosing weight and not getting any nutrition.  They did a resection 20cm and I had a stricture.  Immediately after the op on 5 th December I felt better and have remained so.  I still cannot believe it.  I feel like doing things and can eat anything.  Life's wonderful.  I could not tolerate a whole list of drugs inc

      ding azathioprine and Infliximab.  I hope this helps.

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  • Posted

    Hi Nick,What meds are on for your crohns? 

     

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    • Posted

      Hi,

      I take 200mg of azathioprine once a day, humira injection every other Monday, I did have infliximab a few years ago but it never worked. And now all my vains are shot and I'm nearly impossible to canulate, when I go to hospital they put a central line in staight away. So I can't try it again, nor the other i.v one (can't remember the name of it) I did have other tablets but they wasn't working either so they stopped them in February just gone after my op, the doctor is looking for new drugs to try me on. So fingers crossed.

      Nick

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    • Posted

      Hi Nick, that's a lot of meds, I was Azathioprine but it did nothing fir my flare up. So, waiting to get put on a new drug don't know what is called yet. Good luck
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  • Posted

    Hi Nick. How long have you been on the Humira?

    I was on it and please forgive me as don't want to worry you but I developed Lupus from it. I was told that it would go away as soon as stopped the Humira. It didn't. I had only taken 6 doses of the Humira and that was 4 years ago. The pain in my joints and muscles was like they were on fire. I was very unlucky as it was a 1 in 10 million chance I developed it and didn't go away, at the time they said as I had Crohn''s and not ulcerative colitis that I couldn't possibly have Lupus but they have since discovered in USA that the info was wrong.

    Maybe worth speaking to your gastrointestinal Dr and see what they say. I've ended up on oxycontin, gabapentin and amitriptyline to try and get the joint and nerve pain under control.

    May also be worth getting your gp to xray the affected joints as it could be crohns arthritis which will attack the joints when your crohns flares up. Again pain killers are treatment but avoid NSAIDS (ibuprofen, dicllofenac etc) and aspirin.

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