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.
Hi-This question is for anyone. My mother is 16 months out of transplant and has done very well. Her energy level is high, and she’s done a great job getting back to “normal.” But every now and then (every few weeks), she gets stomach cramping and diarrhea. She claims it’s after she’s eaten dairy or high fatty foods. This is new for her. Most of the time her diet is really good. These tend to happen after her “splurges.” Just curious if anyone else has dealt with new digestive issues or a change in what foods your body seems to tolerate.
Hi Kris and good to hear about your mum getting on with life.
I would suggest that she needs to get checked out for dairy intolerance as SCT can have that effect on a body - sort of moves the goal posts of the bodies metabolism.
But I am coming up to 4 years out from my second SCT and do have rounds of stomach issues including the runs but I was also left with a bad Hiatus Hernia thanks to the SCT.
Is she still on any stomach meds - if she is they may need reviewed.
I feel like sometimes dairy bothers me and sometimes some green veggies might be the culprit. Probably its just GVHD.
yes, daughter had problems a couple of years back, wondered if she was lactose and gluten intolerant. She had the blood test for gluten but that was negative. For a while she just kept to a gluten free and lactose free diet, then gradually introduced gluten and it worked. She’s now much better, and although she still keeps mostly off actual milk, she can tolerate cheese and cream. And it helped her put on a little bit of weight too (she’s still very slim)
and her allo was in 2011!
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