My brothers Crohn’s

[thompsond29]

My brother is now 32, diagnosed at 17. His consultant says he is the worst case of Crohn’s they have ever treated in NI. Over the years he has had many surgeries and treatments. Last year he had Keyhole surgery and resulted in a stoma. He recovered but soon after seemed to develop an abscess type thing on the opposite side to the stoma. He has since been told it’s a fistula. He went into hospital a few weeks ago and has had a few tests done. They told him his large bowel is fine, but today he got the news that his small bowel is full of fistulas a junior doctor delivered this news to him and told my brother there is nothing they can do for him!! As a family we are distraught! Has anyone had anything like this happen to them? Or any experience at all with fistulas?

[Barnclown]

Gosh Thompson: am very sorry...you must all be reeling at this sobering news. Am just glad you’re all ‘processing’ this together.

I have some experience of immediate family feeling distraught at serious Crohn’s implications etc because my husband (of 35 years) & his sister both have teens-onset crohns & we have decades of experience of major bowel surgery, peritonitis, fistulas, abscesses, stomas.

both my husband’s & my SIL’s versions of crohns were extremely severe. Both took 3 decades to become more manageable. By their 60s they are leading fulfilling lives & are as physically active as even a ‘healthy’ person could be at their ages, despite all the surgery etc

Unfortunately, I cannot comment specifically re fistulas of the small intestine, because the fistulas we’re managing are between other organs. But, I myself am in Intestinal Failure - specifically of my small intestines:. after a lifetime of progressive GI debilitation including Chronic Intestinal Insufficiency, due to childhood onset immune dysfunction diseases, I am diagnosed with a Crohns-like enteropathy which over recent years has finally segued into Chronic Failure of The Small Intestine (I cannot digest or tolerate any type of food /food residue). And the combined therapy prescription treatments my team of lead consultants in immunology + rheumatology + gastroenterology now have me on are helping so much that I’m feeling much much better than I ever have...even though I’m unable to eat.

So, I guess I am just hoping something about our experiences can help you see the very real possibility there is light at the end of the dark distressing tunnel your bother, you & your family find yourself in now

Also, if your brother hasn’t already, I just suggest you double check he is in care with the right nhs team for his uniquely complex case. My instinct is that, like me, he may benefit most from a multidiscipline approach, combining expertise of consultant experts in severe & unusual versions of immune dysfunction diseases: eg immunology + rheumatology + gastroenterology. Because that junior Doctor is WRONG: there ARE things today’s tertiary care/science CAN do for him!

I hope something in all that is useful in some way

❤️🍀❤️🍀 Coco