?GvHD of the gut?

Hi folks, daughter has increasingly noted (tmi) she needs the loo urgently and fairly often. She uses Imodium about twice a week as it's just getting a bit too much, she's eating less and trying different ideas, thinking she may be allergic to some foods, I'm concerned that the whole thing is putting her off eating. Not quite sure what to advise, to be honest. They will investigate if it gets really bad but that may well not reveal anything either.

im after any bright ideas to help her help herself......she has tried using some probiotics since she's had quite a lot of antibiotics, especially last winter. Still no real improvement.

help, any post allo patients with similar experience? 

Hugs xxx

ps, edit; it may be intolerances rather than allergies....

  • Hi moomy .. Sorry to hear she is having tough time .. Maybe a short course of prednisalone will get her body back on track? What's the consultant suggested? Mums was mainly on her skin but had boughts in her stomach which seemed to come and go .. But eventually it did go .. Have she tried taking dairy out her diet and using alpro options for a while and re introduce? Also is she still on omeprazole as that's good for the lining and could help? Mum definately found certain foods were a no no when she was flaring up in the stomach so maybe diet is key? Xxx

  • Also maybe worth doing a good intollerence test? X

  • Meant food not good .. Stupid I phone 

  • has she ever tried buscopan, I use it every now and again when I have similar problems and find if I take it earlier enough it can settle within an hour or 2 max. 

  • Thanks for the ideas, she has removed as much dairy as possible, as well as added sugar, is going to email her consultant to ask if he has any ideas. Problem is, any medication needs to be liquid or melts as she cannot swallow tablets, that does cause proems at times! 

    Hugs xxx

  • Hi Moomy

    My gvhd of the gut caused bile acid malabsorption which they medicated. Fortunately I am now off those meds and gut has fixed itself. One thing I used to take before they found out what it was and it seemed to help was aloe Vera. I would buy it from Holland and Barrett as a liquid and then dilute it with water like squash. It isn't the most tasty flavour but if the water is cold it is ok and after a few days you are used to it. Definitely worth a try as I know quite a few people who take it for digestive soothing! 

    Paul

  • BTW my symptoms were exactly the same as your daughters. If it is that then two of the bile acid binder meds are dissolved in liquid. Bile acid malabsorption is often mis diagnosed as IBS.

    Paul

  • Thanks, I've told her these ideas and she will try aloe Vera as soon as possible, and let her consultant know about the bile acid malabsorption possibility. What tesets did you have? 

    Hugs xxx

  • https://www.nice.org.uk/guidance/dg7

    I had a SeHCAT test. Details via link above. Basically swallow a radioactive pill. Wait two hours. Have a standing up CT scan to get a radiation count.

    7 days later they scan again and work out how much of the radioactive bit has been absorbed into the body.. mine was less than 5%.. 

    Then they will put you on a bile acid binder (usually the same meds that they use for people with high cholesterol) and that binds the excess bile acid and stops it entering the large intestine in its "raw" form and irritating the bowel. If the bowel gets irritated it produces large amounts of water and hence diarrhea. So the symptoms are very similar to IBS and food allergies but the cause is different.

    Once the bile has repaired itself from the GvHD then in theory you can come off the meds. They also gave me a non absorbing steroid to take to help heal the damaged area (my bowel didn't look too bad at all when I had the camera take a look when they were trying to diagnose me.!!)

  • Thanks so much, Paul....

    we had a long chat, she is going to reduce the fruit and veg and stay off blending smoothies, will try a higher ratio of complex carbohydrate and proteins in her diet, plus try to get the Aloe Vera to try, has emailed her consultant and we wait to see what he thinks. He appreciates that she is a performer so shooting off the the loo with short notice isn't an option! 

    i also told her that there is a test, she will see what consultant thinks, though she remembers hearing someone say something about malabsorption. 

    Hugs xxx