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Stomach complaint (diagnosed as Crohns) making my MS constantly super active!

Hello

I am not on any pharma medication at present but I have had several DMD’s over the last few years so my immune system is constantly suppressed. I guess y’all know the score. My Lymphocyte count is always below 1. Sometimes 0.2. Sometimes 0.8! So when i had a really nasty bout of Diarrhoea and Nausea i presumed my crappy immune system was probably to blame for just how violent and disabling it was. I presumed it was just a stomach bug. That was 6 months ago. The violent nature of the stomach problem has subsided but never really fully gone away. Now my MS nurse is saying that’s it’s probably Crohn’s because Crohn’s and MS quite often go hand in hand. Whatever it is it is making my MS really active! But it’s not a relapse because none of the symptoms are present constantly. But i feel like i’m in stormy water when it comes to my whole repertoire of symptoms. It’s impacting my life like a full blown relapse. Has anyone else had this type of stomach complaint? A diagnosis of Crohn’s? Will i be right in thinking the “Crohn’s” is making my MS active?

Any thoughts welcomed because i know nothing about how Crohn’s and MS work together! Well i guess i’m learning. And it’s horrible! Stuck in my flat doing nothing much at all. It’s depressing. My MS nurse said they treat Crohn’s with steroids but i will never take steroids again. My body doesn’t tolerate them well.

I don’t know about Crohn’s, but have you thought it my be ibs or coeliac, I have had stomach problems for about four or five years. They found out that I was coeliac with a stay in hospital. They first thought it may be Crohn’s or ibs but after a little while they said it was coeliac. Been on the diet for three years no problems.

Kay

Hello Kate

You have my sympathy, bowel problems are horrible. I too experienced side effects from the DMDs I tried to take, so can understand that issue too.

However, I don’t think that your MS nurse is capable of diagnosing Crohns Disease. Usually you need to have a series of tests in order for a diagnosis to be made.

Have a look at https://crohnsandcolitis.org.uk/about-inflammatory-bowel-disease You can see from there that it’s not a simple matter of symptoms = Crohns.

You should probably see your GP and ask for a referral to a specialist.

I can imagine that your MS does feel like it’s in constant relapse. But having depleted lymphocytes should make that less likely rather than more. The reason is that while your lymphocytes are low, your myelin is slightly protected from attack by your immune system. At least that’s what my neurologist told me when I had prolonged lymphopenia following Tecfidera.

Perhaps you need to see your neurologist as well as a doctor who specialises in inflammatory bowel disease.

Best of luck.

Sue

Thanks for your responses. Even being able to talk about this without feeling like i’m ruining someone’s day is therapeutic! And yes it does seem odd that my MS Nurse very quickly decided it was Crohns. Going to try get to see a GP who will listen to me and refer me somewhere. The one i’ve seen twice just tries to give me antibiotics even though i’ve told them it’s not a bacterial infection (had that checked out at A and E when it first got bad). Bloody GP’s refusing to listen to me. I guess you all know how that goes!

BEST,

Kate

Honestly Kate, there’s pretty much nothing sacrosanct on here. Whatever you need to discuss, we’ll be open to it.

If you need to persuade your GP it’s not a a bacterial thing, take them a poo sample. (Not long ago I took one in a urine specimen bottle, it’s all I had!)

Then you should be able to get a relevant referral. It may take a week longer for the GP to make the referral, but if they’re concentrating on you having a ‘stomach upset!’, then that might be necessary.

But if you can instead see a sensible GP who can (possibly) believe you when you say it’s been proven to be not bacterial then that would be the preferable solution.

Best of luck

Sue