I am struggling emotionally - probably inflammatory arthritis and IBS or possibly IBD

[ifIonlyknew]

I am really struggling at the moment. I have had stomach issues for 15 years, almost constant diarrhoea. had loads of tests in 2002/3ish but nothing was ever conclusive as they took so long to get around to doing the tests I was eating almost nothing other than the blandest of bland stuff and wasn't actually bad around the time of the tests. they told me verbally it could still be inflammatory but they weren't sure. GP since told me it was just reported as IBS.

I have had joint pain and had tests for rheumatoid arthritis a few times over the last 11 years and am having more at the moment. not got a positive blood test for rh factor (is that how you say it?) but rheumatology diagnosed it as inflammatory arthritis 6 or so years ago and are saying probably that now but they really don't seem sure. This rheumatologist pointed out the potential link with the stomach problems and said it might well be IBD.

so hard to get anyone to look at everything and I have pretty much given up getting an answer or any sort of help.

I just don't really know what to do with myself. I have done an anti candida diet suggested by a Dr to see if this calms down inflammation (of course this won't help in terms of these tests being done will it) but my stomach still isn't right so now I am miserable because I can't eat much and still feeling ill and scared to leave the house.

My big cause of upset is the fact I don't want my children to miss out on anything because of me. I feel I am useless because I can't leave a toilet for long and it is starting to impact them. I don't even care about being in pain or not feeling great from my point of view, I just want to be like other parents and be able to give my children the life they deserve.

How do people deal with things like this emotionally?

Make sure they test ferritin as well as Hb as that's a good indicator of coeliac disease

I have had flare ups of proctitis for many years - it's a mild form of colitis but still means multiple daily visits to the loo etc when I have it. Then about a year ago I got really bad joint pain now diagnosed by a rheumatologist as a form of ankylosing spondylitis - it is apparently quite common to get both.

I totally understand where you are coming from as i felt I couldn't do anything or go anywhere without moaning and groaning and knowing where a safe loo was, and felt really depressed.

For me steroids stopped the joint pain v quickly and although the pain came back again once they wore off (am now trying a drug that deals with arthritis AND colitis and am hopeful that it will knock it into remission) knowing that it can be stopped has helped so much and feels like a huge black cloud has been lifted.

My gp was really helpful and understanding when I went in complaining about the joint pain - I thought it might be menopause or thyroid! I had a load of blood tests and once saw the inflammatory markers referred me to the rheumatologist who has been great too. I haven't seen a gastroenterologist this time as I was "managing" the proctitis anyway but have had colonoscopies several times and they are not as awful as you you'd think!

Good luck with it I really hope you can get it sorted.