Having a UC flare up and the joint pain is unbearable. Does anyone else suffer from joint pain?

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Hi guys

I've been struggling with IBD for years I was first diagnosed with proctitis at 17 then told that had cleared up and it was now IBS after another flare up I was told I had crohns disease, then was told this wasn't the case.

I've just seen a new specialist who has told me I have UC and I've been having a bad flare up for almost two months. I've been off work and can barely leave the house for any length of time.

But the past week or so my joints have become so painful it seriously hurts to move. My jaw, toes, ankles, knees, fingers and wrists are the worst. My doctor gave me tramadol but it's not helping it just puts me too sleep. Is this a common side effect of UC?

Any time I get a flare up I get a pain in my left hip and left hand side of my lower back but the doctors say this has nothing to do with UC does anyone else suffer this?

I've been given an enema, a suppository, steroids and oral Pentesa to take but don't feel this is helping at all as I'm still in pain and running to the toilet. However my GP just keeps telling me I need to wait for my next appointment with my gastro-entrologist to discuss changing medicine. Should it take so long for this all to kick in?

Sorry for asking so many questions I'm new to the whole Colitis thing.

Thanks in advance for your help

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9 Replies

  • Posted

    I've suffered from UC for 5 years now and have tried all of the available anti-inflammatries? Most of the symptoms you are experiencing, I have experienced too! You need to try most available meds in order To find which works for you. what suits. I take Mezzavant at the moment and recently have been prescribed Aziothropine as well! This is the best I have felt for sometime! I still suffer from fatigue and joint pain, but I am feeling a little better now! I take only one Tramadol at night in order to combat restless leg syndrome, or peripheral neuropathy which I've suffered from ever since using the anti inflammatory! Diet also needs to be considered! You really should see a gastric consultant as soon as you can! Good luck!

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    • Posted

      Thanks for the information. I have a gastro appointment on the 2nd of September so hopefully I get sorted then because these tablets aren't really helping. I've completely changed my diet I don't drink fizzy juice or alcohol, I don't eat chocolate. I've cut out take aways and any greasy type foods. Spices have even taken a back seat.

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  • Posted

    Hi

    i have had uc since i was 19 and i am now 53, i now take methatrixate injection once a week, which has been a god send and also helps my joints. Hope this helps

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  • Posted

    Hi Laura,

    I have joined this forum today after doing some internet research for similar sufferers because of the pain in my lower back and legs. I am 56 diagnosed UC 18 months ago after a long spell. I have been taking Asacol Mesalazine from day one without to many problems only some minor flares. Since June I have had a big flare, they doubled my prescription and now added Pentasa Enema to try and get it sorted so fingers crossed. I get little pain at night ( my wife tells me I have restless legs!) it is allways in the morning from 6am!! as soon as I start going to the toilet that the pain starts and then by 11am I have been to the toilet so many times my bowel is empty and the pain subsides! Doctor finds this strange and has suggested it could be something to do with my Celiac disease! But gave me some Co-Dydramol to see if it helps. As you say it is difficult to get to see the consultant except every three months but I can call the specialist nurse in the team for help.

    I hope you get on top of it soon.

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    • Posted

      Thanks Thomas I didn't realise you could actually ring the nurses. I run to the toilet more during the night and then I get a bit of a break in the morning and it kicks off again in the afternoon.

      I hope everything settles for you too x

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  • Posted

    Hi Laura,

    I have just recently been diagnosed with ulcerative colitis. I got diagnosed in May this year and I'm 28. I am taking Octasa which seems to be working as I have been good since coming out of hospital in May. However my main side-effect is joint pain! I have it in my ankles, knees, shoulders, knuckles, pretty much every large joint in my body. Some days it's worth and others depending on what I'm doing and how much I'm resting my joints. I find the only thing I can do is take painkillers, will have a nice soak in a hot bath. I have told my specialist about this and I'm waiting a referral with the hospital rheumatology department.

    I hope that they will be able to help me And will shed some light on what I can do to ease the joint pain, I literally feel like an old lady with arthritis at the age of 28!

    From the research I have done on the Internet it seems to be a very common side effect of UC. However there are so many different treatment options on the Internet that I really think you should speak to your gastroenterologist and try and get a referral to rheumatologist.

    Good luck and hope you find a way of easing this pain let us know if you do x

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  • Posted

    Hi Laura,

    I got this from my Gastro Department on my first visit I have only just moved into the area. I was not offered this support when I lived in North Nottinghamshire. Ask the team when you see them next.

    All the best.

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  • Posted

    Hi Laura.  I've recently been diagnosed with uc after nearly two years and the pain you describe is exactly what I suffer with too, it's hard to describe when your jaw and even fingers hurt to move or touch, the only thing works for me is a hot bath temporarily, my gp is quite good he will even ring the gastro consultants to get me an earlier appointment if needed, don't be fobbed off and do contact the ibd nurses they are pretty good.                                                                     

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