New to this site!

Hi everyone,

I have been diagnosed with RA soon after having an ileostomy due to crohns disease. It was as soon as I was tapered off all drugs that my joints became sore to the point of tears, I feel like my list of ailments just keeps growing and am very frustrated as I was hoping after my surgery I would be drug free. A brief run down on my medical history is I have been fighting crohns disease now for almost 22 years had many surgeries with the most recent ones being a right hemicolectomy about 5 years ago then last march became so ill with the crohns we had to do the ileostomy as they said I was so severly malnourished that I would not make it if we did'nt do the surgery asap, that surgery was 6 hours, then 4 days after that surgery I ended up with a serious abdominal infection and was taken back to surgery to drain it out also needed a blood transfusion. Then 4 months after that all happened the crohns had gone crazy in the rectum so back for more surgery to remove that, then tapered off the prednisone and all other drugs and as that was all happening my joints became swollen and so sore as if my bones were burning, my hands, feet and knees are the worst but seem to be sore all over. I was put on methotrexate tablets first up but they were going straight through my stoma whole so I am on meth injections and have been now for around about 9 weeks and still sore as anything. They also have me on norspan patches for the pain and also discovered I am menopausal so Im on patches for that as well, I am looking like a sticker book as I have 3 patches on and dont feel as though its doing much for the pain. I also have major issues with my bone density from long term steroid use for the crohns and suffer with iritis and seriously high liver readings with resulted in a liver biopsy almost 2 years ago now and they boiled it down to the drugs but now they are high again and the docs are talking about needing to do another liver biopsy. I am over the poking and proding and just want this all to be over and live pain free. I am battling to keep working but Im not sure how much longer I can do this for, I am on disability but I like going to work for my sanity so I only collect part pension. Anyway thanks for taking the time to read my story thats just some of it there is so much more but dont want to bore u all too much. Hope u are all well, take care

Welcome,

Your not boring us with your post silly, that's what it's here for vent away. You sound like you've been through the mill and back.

I like you was on Norspan patches but they did nothing other than give me headaches on top of the pain I already had!  I've been taken off Mxth for now as my liver markers are very high on the blood tests, two months down and really feeling the effects of not being on it anymore. I'm hopeful that this months tests will be better and I can go back on it or another similar drug?  For now I'm only having the Remicade infusions but they work better along with Mxth, so feeling vunerable at the moment.

Please keep in touch and hope this week brings you a week with less pain and problems.

Peggy

Thank you all so much, it does help to talk with people who know exactly how it feels. Good to see u again too Jo, hope u are going good, I didnt realise u were the forum mod for the RA site . I also post on the ostomy site lol I am really struggling to deal with all of this but seeing a pyschologist as well to help me deal with the changes my body has gone through. I will keep u posted thanks again everyone who replied to my post, my hope is we will all be pain free one day soon,
take care

Hi Andorable, I've been away and only just spotted your post, so welcome to our humble site. I can eally relate to your frustrations of your body letting you down.

I get constantly worried about where it will all end at times. I hate the thought that my body doesn't seem to stabalise no matter what medication is thrown at it. Now your condition is much worse than mine I can't imagine having Crohns as well as dealing with the RA issues. But having had recent surgery to deal with endometriosis, I lost both ovaries as well as having it removed from my bowel. abdominal muscles and heaps of scar tissue or burnt out endo tangled up in there. Since the surgery I have been flaring terribly and the current thinking is that it was the anaesthetic that may have upset my RA? But talking about it, all that poking about inside you would upset anyone, never mind an RA sufferer.

Maybe we just need more time to recover from it all. These meds work so slowly at the best of times.
Welcome anyway, come and talk, we're very happy to share our stories and relieve the frustrations on the RA merry go round, golitho