Any advice?

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

Thank you so much for sharing this Mutti. I will certainly get him to ask about this. You've given me the first sign of hope in years!!

Hi Chris

My husband had an oesophagectomy in April 2025.  Found cancer in lymph nodes so had 6 sessions of chemo which ended October 2025.  Overall he has now lost approx. 4 stone in weight.  It seems to be stable at the moment but he looks really thin. 

He also is having a massive problem with diarrhoea and terrible stomach cramps.  I have spoken to his specialist nurse and the hygienist numerous times about the issue.  They prescribed smoothie drinks initially for helping with weight.  With the stomach issue he has tried Creon tablets which made the problem worse so they tried a different enzyme which also didn't work. 

I suggested Buscopan for the stomach cramps which they agreed may help so hygienist prescribed this as well as Peppermint Oil tablets.  The cramps seem less and so far only been on the Buscopan.  He takes Loperamide when he has the bouts of diarrhoea.

For malnutrition as not getting enough of the required amounts they prescribed a multi-vitamin called Forceval.

Saw surgeon this week and he has prescribed Rifaximin antibiotics which treats any bacteria overgrowth.  Also in December he requested a faecal elastase test to check he was not suffering from malabsorption, this came back OK.  He said in his letter that there may be an element of irritable bowel syndrome for which he may require a trial of FODMAP diet.

When we saw surgeon he did say he thinks the cause is probably late dumping syndrome and there may not be anything that can be done to relief the issue.

I said that isn't great as it is far from pleasant as the cramps are really bad, being on the toilet several times a day limits husband as to going out etc.  However I am persistent in keeping on at them to try and reach a conclusion.

Hope your brother gets the help he needs and a resolution is found.

Best wishes.

Thank you so much for sharing this LeoLioness. I have been pushing on the microscopic colitis and budesonide as suggested by Mutti and I will certainly suggest Buscopan and peppermint oil and ask about the FODMAP diet. I think it's shocking that there is such lack of will for a solution to the chronic diarrhoea to be resolved. In my bother's case it has resulted in his BMI dropping to 14. He is literally skin and bone. On the standard Malnutrition Universal Screening Tool (MUST) he has a score of >2, meaning he is high risk of malnutrition. You have only to look at him to see this is the case. Physiotherapists keep telling him to do exercises to build muscle, but how can he build muscle without sufficient uptake of the amino acids from which the muscle is built?  Dieticians tell him to eat more, but how can he eat more when he has a reduced size stomach, severe stomach cramps if he eats too much and persistent diarrhoea which means anything he eats passes straight through? He has been admitted to A&E 4 times this past month with chest infection, but how can he fight infection without proper nutrition? Chronic diarrhoea leads to dehydration, electrolyte imbalance, loss of minerals, malnutrition and weight loss as well as having a significant impact on quality of life and daily functioning. PEG and nasal tube feeding also lead to diarrhoea so is not a solution. None of the medics he is under are coming up with a viable solution, which is why these suggestions from fellow sufferers are so important. I will keep pushing them to find a solution to his diarrhoea/nutrition problem and am very grateful for all suggestions. I sincerely hope your husband finds a solution. Mutti - I hope you too are finding your condition improving. I will let you both know if I get anywhere with the medics here. With all best wishes.

Makes you laugh when they say exercise to build up muscle strength.  My husband gets worn out just walking round our mobile park home site.  When the stomach cramps are really bad he wants to go and lay in bed with a hot water bottle as that seems to help.

I find it so said seeing him like this as he is the shell of the man to what he was and I feel so helpless.  I have disability issues and he was my full time carer but now I am having to do what I can to care for him.  We look after each other.  

His surgery was done at the R.V.I in Newcastle and they have been brilliant.  His surgeon and his nurse specialist are great.  They are wonderful with me as they discuss everything with me as my husband is not a talker and doesn't like chatting or talking about stuff so I do all the talking and ask all the questions.  The team and our GP are great and know to deal with me and I have authorisation from hubby.

I will continue to do everything I can to try and make life easier for him.

Wishing you and your family all the very best.  

hope you all get a solution for the awful toilet issues, deffo get what you say about exercise, i was told to add cream to everything, full fat milk, full fat yogis, the most awful dusty shakes, and being coeliac like tricia, brings a whole different challenge when eating, all these weight gain tips, before i was even tested for cancer due to such a big weight loss, thank god my gp got the camera sorted, and then the 2nd journey started. the toilet side is bloody awful, at a lunch meet several of us ladies managed to laugh about the spare pair of pants, and leggings that are standard handbag staples.  but all joking aside, its an awful side effect, hope you get the relief and solution that you desperately need.  keep pushing back, take care x