My new diagnosis

Hi everyone, just thought I'd post my newest diagnosis! lol (I seem to be collecting these conditions!). I've now been diagnosed with inflammation in my sacrum (base of the spine) and both ileac joints. At the moment the docs are calling it "sacroilitis", but I'm also being tested for something called "ankylosing spondilitis", just in case.

So what does my new diagnosis mean? Well that's a tricky question to answer, as at the moment I'm not so sure. Well, apart from it being rather painful, at times pretty excruciating. One of my specialists thinks I should come off my current Crohn's medication - Infliximab/Remicade and instead go onto Humira, which is the same drug family. However, up until now I've been "saving" Humira for when/if the Infliximab/Remicade stops working (for whatever reason), so I see it as my "back-up" and at present, my only back-up. This means that for me, the idea of going onto Humira, when at present my Crohn's is mostly behaving itself (certainly compared to how it used to be!), would be rocking the boat, and so I'm not keen. However, apparently the drugs/meds they use to treat Sacroilitis/inflammation are the same as what they use to treat Crohn's. It's a shame then that my current Crohn's treatment is not working for the sacroilitis. I asked my doctors about this - and he said he didn't know why it wasn't keeping the sacroilitis at bay. However he did say that the sacroilitis is a kind of "secondary condition to Crohn's", not in everyone of course, as some people get sacroilitis without having Crohn's, but in my case it's the Crohn's. Oh well.

I should know my "fate" next month with any luck, when I will go for my next dose of Infliximab/Remicade and also should get some tests results and speak with my consultants. I hope I will have some say though on what might happen. Thankfully, my Crohn's consultant doesn't seem in any hurry to bring me off Infliximab/Remicade, so I might be ok. As for my sacroilitis - it's a painful thing - some days I can hardly walk with the agony, but if I can find some way to cope with that (and ideally not by popping pills - although I have been given the nearest equivalent to morphine) then all well and good.

Interestingly though, at christmas I had some myofarcial release treatments (not sure I've spelt it right!), which somehow helps heal connective tissue (I think! lol) and since then my pain has practically vanished! Yippee - just praying now that it will continue to keep at bay. Before I had the treatments I was in a lot of pain, and my heart was sinking as to how I would manage all the car journeys I was having to do - with all the visiting of relatives over the christmas period. So I think I might have found the answer as to how I can cope with this new condition - have regular treatments of myofarcial release. I don't know of anyone here who does it, as I don't think there are many practitioners in the world. Think most of them are based in england, so I might have to wait until I return to angleterre!

Will try to find some more info on myofarcial release and post it on here. Ruth xx