Sclerosing Mesenteritis

[svfarmer]

hi folks this is my first time posting here, I have lupus SLE and recently been diagnosed with sclerosing Mesenteritis which is extremely rare - I have ended up in hospital 3 times In last 3 months - I have excruciating pain in my tummy with it, at first they thought it was my lupus but it’s not - I go in 3 weeks time to see my consultant and see how they are going to treat it, has anyone got this disorder please ? Many thanks x

[OldTed60]

hi there. I’m sorry you have this horrible sounding newly diagnosed condition. I hadn’t heard of it so looked it up - in part because I’m due to get a colostomy soon because of my scleroderma bowel dysfunction.

But also because my late mum was rushed into hospital with acute abdominal pain and obstruction caused by mesenteric ischemia in her fifties. Sounds a bit similar but researching now I’m told by Dr Google - is less “benign” and relates to what she later died of - severe atherosclerosis. I’ve been researching because I’m seeing a geneticist in 3 weeks time about EDS subtypes possibly obscured by my scleroderma but relevant to the major abdominal surgery I’m to have soon.

My rheumatologist is a lupus expert (although I have systemic sclerosis, Sjogrens and hypothyroid) and we have posthumously diagnosed my mum with Lupus after I showed her photos of my late mum’s butterfly rashes, explained her spells of psychosis. Apparently rapid onset atherosclerosis can be associated with Lupus she explained. We also think my late mum had similar type of EDS to me, likely hypermobile but will be good to get the other types excluded prior to this surgery.

Sorry if none of this is relevant to you but I thought it was worth mentioning at least. X

[svfarmer in reply to OldTed60]

Thanks so much for your reply, with this new disorder Ive twice had bowel obstructions due to inflammation, our bodies are a mystery - I’m sorry your mum had a bad time of it with her health and hope that your surgery goes well xx

[OldTed60 in reply to svfarmer]

Bowel inflammations are so scary. I had one recently and was advised by my colorectal nurse to have a long weekend off my colonic irrigation system while Mycophenolate kicked back in. This helped so we determined that cause must have been inflammatory. I think pseudo obstructions are quite common with scleroderma - especially in the small bowel.

It might be worth looking up and asking your team about mesenteric ischemia if it corresponds. X

[svfarmer in reply to OldTed60]

🙏🤗💗

[Tiggywoos in reply to OldTed60]

I’m going to re name you Dr 🧑🏼‍⚕️ Ted 😘xx

[OldTed60 in reply to Tiggywoos]

🥴👩🏼‍⚕️😂xx

[svfarmer in reply to Tiggywoos]

😂😂😘