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...
I know a lot of you guys have had Allo's, so may be slightly different as I had an Auto, but how long did you have gut issues after transplant?
At least once per week I wake in the night with bad tummy cramps and usually diarrhoea. It ranges in severity, sometimes I just go once, sometimes multiple times.
I guess I am wondering if this is 'normal'?
It hasn't been a big enough issue for me to call in about, but I have mentioned it to my GP who gave me some Buscopan and told me to 'speak to Gastro' (as if I had a direct dial to them - helpful haha). She doesn't seem to know much about transplants and takes her lead from anything I tell her/asks for my CNS to give them a call...
Anyway, I have tried to think about what I had eaten those days and if there are links - the only thing I can link is that I may have eaten a few sugary things nearer to bed time - though there are other days I can do the same with no tummy issues?! And days I can eat lots of sugar with no issues at all....
Thanks in advance for replies!
My GP was great but he did take the lead from my team and I was reporting into him every four weeks.
I would get your team to refer you to a Gastro expert just to check you out.
I went off all sugary food/drinks during my Allo’s and it took a very long time to get back to them. I found sugar just upset my system and yes I did have diarrhoea at times, was it the sugary foods?
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
my daughter had her Allo sct in October and although she is in the main now doing very well , she was in hospital a few weeks ago with a very bad bout of oral thrush- similar to the mucositis she had after her transplant- and she was vomiting with that- she also had a day last week where she was vomiting and within a day she had developed thrush again but her gp gave her antibiotics straight away- she did look at her diet though and although she is a healthy eater she does love a carb so she is trying to cut down as that can cause thrush as well, she found as well that her likes and dislikes totally changed, she can’t face coffee and yes sugar does have an effect. She did have a few problems with nausea right until about 5 months post transplant, they told her it was mucositis of the gut but it has got better now- hope this helps.
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