Digestive disturbances

[Odosmum]

I have hesitated in writing this post because it might be worrying or upsetting for some who read it, but I would like to hear from anyone who has a similar diagnosis.

I have just had a diagnosis of 'chronic intestinal pseudo obstruction'. It is important to stress that this is an extremely rare condition, but is probable related to autoimmune disease. In short, it means the muscles and/or nerves in part or parts of my colon no longer work. I also want to emphasise that I had a positive diagnosis of Rheumatoid Arthritis when I was 36 and had been experiencing symptoms for at least 10 years before that. I am now 64 (PMR for 4.5 years) so have had autoimmune issues for a very long time.

There are treatments to alleviate some of the symptoms and I am awaiting my first prescription. Also, although I have been experiencing symptoms for some 18 months, I am generally fit and well. I have had to change my diet and through experimentation have found a regime that works for me. Weight loss (much needed) continues, but I have managed to slow it down. It seems strange after years of dieting, to eat what I want, when I want without consequences. (That doesn't mean a constant diet of cakes, chocolate and icecream!)

Thank you for reading so far. If you are interested in knowing more about the condition, I have attached a link below. If you are experiencing any gut-related issues, I recommend a look at GUTS UK. I found the website very helpful.

gutscharity.org.uk/advice-a...

[SheffieldJane]

I am sorry that this has happened to you, it certainly sounds like a very challenging condition. It is amazing that you were able to get a diagnosis. GUTS U.K. seems like an excellent website to be familiar with. The article you shared was very clear. I am particularly interested because my digestive system has been adversely effected by years of autoimmune diseases including thyroid ( Graves) and seems particularly food sensitive and sluggish these days. It is something I have yet to address with my doctors - stealing myself for yet another barrage of investigations. Take care and thanks for sharing.

[Odosmum in reply to SheffieldJane]

It's worth exploring GUTS before seeing your doctor. I found it really helped. I'm not one for surfing the internet to find a diagnosis, but for me, they really helped.

[PMRpro Ambassador]

If you are looking for others, I THINK - won't swear to it - there are a few people with similar problems on the LupusUK forum. There are certainly a couple with dysmotility of some sort.

[Odosmum in reply to PMRpro]

Thanks, PMRpro. I'll have a look.

[PMRpro Ambassador in reply to Odosmum]

They are lovely people into the bargain