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?

Sorry to hear you're struggling at the moment. I would ask for a full range of blood tests, a faecal calprotectin test and referral for a colonoscopy, as then you'd be able to rule out IBD if you don't have it. Frequency and urgency is not normal, especially if you also have other symptoms. Apparently IBD is relatively rare, so not many GPS are familiar with the range of symptoms or how disabling they are. Good luck!

thank you - yes I think the time has come where I need to really push for more tests etc hasn't it. I did have a colonoscopy 15 years ago but they didn't seem convinced one way or the other with regards to whether it was IBD or not.

As @EveryDayIsLikeMonday said you need a Faecal calprotectin test, and then a colonoscopy if any inflammation markers show on the test.
Also, ask your Dr to see if you are deficient in any vitamins and minerals as that can show that food isn't being digested correctly.
It is hard, but if you have a diagnosis you will then be able to get the right treatment that will give you back your life. It won't be overnight, as it can take time to find the correct mix of drugs. But it will give you some peace of mind to find out what's happening to you.
Push your dr, and if they aren't helping, get a second opinion.

thank you - my inflammatory markers are apparently ok at the moment, the severely restricted diet seems to be helping to a large degree. Obviously can't really stay on it for ever though as it would probably lead to other problems. I think going private is probably the way to go.

Ah well have you looked at the low fodmap diet? Now it doesn't always help, for instance there are some "safe" foods on there that I can't eat, but it will give some guidance as to what you can have.
If the markers are low, nothing may show on the colonoscopy, so it may be best to wait until you have a flare up.
Mine always shows as high, but the camera showed hardly any inflammation so I'm in clinical remission at the moment. Hope you feel better

DH's IBD responds really well to eating oily fish and Yakults. He takes fish oil/ omega 3 supplements and probiotics to keep it at bay.

He's a cynic and not usually one for supplements- but when he first had a Crohn's attack he thought it was food poisoning and took probiotics to overcome that. They settled that episode and another couple of flares before he was eventually diagnosed.

Worth a try, while you're waiting for proper investigation .

thank you - I am taking some very expensive fish oil capsules (4 a day), and lots of biokult probiotics and have started some digestive enzymes as well which seem to be helping. I am basically following an anti candida diet so no dairy, sugar, alcohol, yeast, caffeine, white grains and cut out fruit completely for 5 weeks and now am slowly reintroducing it. It does seem to be helping a lot, been on it just under 3 months now! The Dr said I could start reintroducing stuff more in a few weeks time.

It is interesting you say nothing shows up unless it is during a flare up, that would make so much sense with when I had my tests done. Frustrating in a way as it means you don't get diagnosed when you should.

Have you considered fibromyalgia op? You sound a lot like my friend.

they ruled out fibromyalgia - can't remember why though

Did you have biopsies taken during your colonoscopy, OP?

Not as far as I know. They were never mentioned

Have you been tested for coeliac disease?
My blood tests at the GP came back negative for years, wasn't until I had the gene test and biopsies that it was diagnosed. I had joint pain and all other kinds of problems before I was diagnosed. Has your iron been tested?

You can get a gene test done by a gastro consultant or privately if you prefer
And biopsies need to be taken during a colonoscopy but that's the best way to say for sure

Have you tried a bile acid sequestrant (Colestid, Questran)? My life changed overnight.
It seems my gall-bladder just dumps all its bile in one go (instead of gradually) when I eat and the bile irritates the colon.
My gastroenterologist suggested I try it wihtout being really convinced it would work, but for me it was like a miracle sure.
Good luck! I know how miserable, vulnerable and isolated it can make you feel.

This sounds exactly like me before I was diagnosed with coeliac disease. Mine didn't show up in blood tests, but did on biopsy.

thank you - interestingly I actually find the diarrhoea goes away with gaviscon and I felt heaps better when I was on some tablets which I believe reduced acidity when they gave me the antimalaria tablets years ago for my joints but as I wasn't happy taking the anti malaria ones noone would let me carry on with the other ones.

yes I think now Christmas is over I really need to start pushing them again don't I. thank you x

only had blood tests for coeliac but they didn't tell me I had to have been eating gluten - hadn't had it for 6 months the first time and then barely ate it ever again so tests never showed anything.

no not had iron tested. not had anything tested since 2005

sorry that should say not had any stomach related tests since 2005. had tests related to my joints but not entirely sure what they tested

If you are strict on the anti Candida diet are you also taking an anti fungal like caprylic acid or oil of oregano as that really helps kill it

Could be worth trying betaine HCL in case you are low on stomach acid. Broad spectrum digestive enzyme should also help

I too suffered for 20 years with your symptoms before finally 2 years ago seeing a gastroenterologist.

What helped me was the Candida and then transitioned to low carb gluten sugar free diet

Antifungals

Digestizyme

Questran

Good luck it is really miserable and causes acute anxiety which compounds the problem

Riding, you are the only other person I've come across who has been given Questran! It was a miracle for me and I can eat anything I like now.
And you are so right about the anxiety. I lost count of the number of theatre trips I missed out on because I feared having to leave in a hurry. Also, taking the bis, being stuck in traffic. And, as you say, the anxiety around it just makes it worse.

It’s really good isn’t it. It naturally constipates so acts like a binder anyway even if you don’t have proper bile acid malabsorption. My gastro was great and I got the sehCAT test on the nhs but questran is so cheap and with so few side effects that I don’t understand why more docs don’t prescribe it for these symptoms. And it has the added bonus of lowering cholesterol!!

yes did antifungals for over 3 months whilst being strict with the diet. Still taking digestizyme although am better on only 1 a day than 3 which is what I went up to at one point but that seemed to make it worse. questran sounds like it has made a huge difference for a couple of you.

ifIonlyknew, do try asking about it