Any advice?

CM1963 7 hours ago

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Hi. My name is Chris and I'm new to this forum.

My brother was diagnosed with oesophageal cancer back in 2016 and had chemotherapy followed by surgery (oesophagectomy). Whilst we are all grateful he is still with us after almost 10 years, his life has been really difficult throughout that time with persistent diarrhoea that nothing has resolved. Basically the gastric team has given up on how to treat him. He’s had pills for bile malabsorption, creon to aid digestion, immodium - I’ve lost count of all the treatments. Everything he eats just passes straight through. There’s no consistency as to whether it’s sweet (sugar dumping) or fat. He’s tried various nutrition drinks – milk based, plant based – and tolerates none of them. As a result he is basically totally malnourished without even the strength to stand up. Has anyone else experienced anything similar? The only thing I can think of that’s left to try is parenteral nutrition intravenously, but this has been refused on the grounds it causes infection. I’ve also suggested faecal transplant but have been told this is only for C.difficile. Any advice from anyone who has experienced something similar would be appreciated.

Mutti 3 hours ago

Hi Chris

I'm sorry to hear that your brother is suffering with chronic diarrhoea, it's miserable and severely affects quality of life.

After 15 years of chronic diarrhoea I was diagnosed as coeliac and went on a gluten free diet. Unfortunately for me, the diet didn't seem to work very well even though i was meticulous in following it. In 2019 I was at the end of my tether and that was when I read an article in a coeliac magazine describing the symptoms of microscopic colitis. To cut a long story short, I had a colonoscopy, biopsies were taken and yes, I had collagenous colitis, one of the forms of microscopic colitis. The main symptom is chronic watery diarrhoea as the colon is unable to absorb water properly. In March 2024 I had a three stage oesophagectomy for cancer. Unfortunately I developed an anastomotic leak which lead to an infected neck wound. I was immediately made nil by mouth and fed by jej for over 4 weeks until the wound healed. I didn't tolerate the liquid feed at all. I was on 8 immodium a day plus extras and still had diarrhoea. My oncologist was great and tried me on all the things your brother had which sadly didn't work, then he put me on budesonide, a corticosteroid. This has been a game changer, things aren't perfect but i am so much better than I was. I am waiting for a gastro review so I will press to stay on them.

So, has your brother been tested for Coeliac disease or microscopic colitis? If not, I would suggest that he should be.

I hope that this is some help, I know how he feels.

Mutti

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