Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
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?
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!
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!
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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.
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?
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.
I am post Allo as you know Moomy and I have had very similar symptoms, but the oncologist seems to be unwilling to place it at the door of GVHD of the gut. I personally think it is. I now have a load of foods that I know upset me and I know how she feels about not wanting to eat. I very much doubt she's allergic to foods, I know I'm not allergic, but certain foods I know now to avoid; milk products, especially late at night, coffee can also irritate, oddly lettuce also irritates but not tomato, cucumber or sweet peppers. I have to be careful with onion or anything with a strong onion flavour because that irritates. Burgers which I used to love are on the not to eat list, but steak and other roast meats are okay. Chicken is definitely okay. I think it might be the fat in the burgers to be honest. I was using Immodium as well, but I found that using it too much resulted in constipation, so I stopped. Eggs seem to be okay for me, so scrambled eggs and omelettes, I definitely can stomach those. Toast, jam, poached fish. I can eat the fish from fish and chips but too much of the batter can irritate. Oh, and I have issues with pasta, but apparently not with Macaroni and cheese... go figure!It may not be GVHD though, I used to suffer from IBS prior to diagnosis and some of the symptoms are very similar to those that I have now. My GP suggested that it might be IBS, but I am honestly not sure, I don't remember being this picky about food when I had the IBS before.Sorry this is possibly not much help. I am finding that the foodstuffs are trial and error. xxxx
Now this is interesting.....
She has changed her diet quite strongly. Taken out the (very healthy) diet including much veg and fruit and added more complex carbohydrates and still kept a lot of proteins, just a very small amount of fruit and veg. (tmi coming!) has had the first properly formed poo for ages.
My opinion is now that she needs to settle her gut, maybe sticking to this change in her diet for the time being, and very gradually add the veg and fruit over a matter of several weeks.
We shall see!
In the meantime, she's off to London to play in tonight's Prom, live second half on BBC4, hopefully the cameras might be kind enough to show the trombone section!
Was she the blond lady? Watched last night and only saw one last trombonist.
When I got on to the binders and "non" absorbing steroids (that's rubbish) guys were good. Some really basic English food helped lol.
Now ow I am off them I am avoiding too much spice.. A bit gurgles but ok and no meds!
When it was bile acid malabsorption tbh there was no answer.
in the end it got so bad I was hospitalised. To be fair my consultant had booked the test beforehand and even with horrendous diarreah they got a result. Within three days of being on a binder my life was transformed!
Pish for the test. If negative then one-off thing ruled out. Think it cost £800 - £900 hence why you need to push!
lady not last trombonist Sorry!
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