Involuntary diet change

There are so many different diets around these days…..

“No carbs”, “No sugar”, “Gluten free” (not a fad if your coeliac!), “Alkaine diet”,

“clean eating”, “fat free”, “paleo” etc etc etc

I’ve found I’ve had to change my quite a few things in my diet since transplant (ignoring the time when I was still enjoying the side effects of chemo). Whether this is due to GVHD or if I’ve developed IBS no one is really sure. There are many foods I now struggle to eat either at all, or in large quantities:

  • Meat – Red meat in particular – I find I struggle to digest meat. It seems to sit in my guts for several days before its digested. So consequently I suffer with bloating, stomach cramps and constipation for  a few days if i eat a steak or a bit too much chicken! So i have switched to fish, pulses, smaller portions of chicken/pork/minced meat.
  • Dairy products – in particular milk– Dairy seems to make me feel nauseous, effect my reflux and has a habit of given me an upset stomach the next day! I’ve switched to more almond milk and soya products
  • Fatty Foods – Things like greasy fish and chips can make me nauseous or diarrhea the next day.
  • Acidic foods – I still suffer with acid reflux (I have a hiatus hernia, but its something I’ve always not been good with just chemo and everything heightens it). I just have to listen to what state my stomach is in and sometimes avoid tomato based sorts and have a few crackers to soak it up!
  • Bread – Now I’m not claiming to be gluten intolerant, I have no idea what it is about bread but I seem to bloat up after and sometimes the next day too. I’m not sure what it is, about it as its not all breads but I’m currently looking at a bloated stomach after some (shop bought) pizza last night!!

I’m slowly getting used to the adaptations. I’ve not completed cut the foods out of my diet just yet. I’m still doing a bit of a food journal to try and work out any patterns before I cut out any foods completely!!

So my question to you – has anyone else suffered with anything similar post transplant/chemo?!?! Has it effected your digestion?



5 thoughts on “Involuntary diet change

  1. I remember it took months for my tummy to get back to normal after my stem cell transplant. Your list sounds quite familiar, I used to only have bread once a day although it wasn’t a total wheat intolerence it made my sick to have it more than that. I got prescribed some probiotics called vsl#3 which seem to help and I don’t eat garlic or raw onion now which also set off sickness and bloating for me. Sounds like you have sussed out what is triggering most bad symptoms which is good!


  2. Linda

    Interesting, I was a year post SCT when my problems began. I had IBS but hadn’t really had any problems with it, probs best it had been for years! Then I began having a real problem with nausea and vomiting and my bowels were everything type 1-6 and everything in between! Appetite was v poor, probs 400-500 cals a day. Milk was a problem from when I got GvHD of the gut a year ago, so I have soya milk but more recently though I don’t seem to be able to tolerate anything with milk in. Onions or onion powder are a no no and that’s in most foods but that’s smell then taste same as garlic. It seems all meat gives me diarrhoea now so I’m trying quern. I’m also on VSL#3 been taking it a week I still go from normal to v loose to normal within a 24hr period.
    I’m seeing a gastro dietician as well as a gastroenterologist next week and I’ve been keeping a good diary for the last 3 weeks. I am able to eat hovis whole meal but no other and white bread I find so doughy when I’m eating it that I can’t tolerate it. I get bloating and like a burning sensation across my abdomen but the worst belching ever it comes from deep down and just appears – blokes would be proud of these I’m just mortified!
    Sorry it’s muddled my brain is ahead of my hand and I can’t keep up!
    How long did the VSL#3 take to be effective? I get quite fatigued still but not sure if that’s just post SCT.


    1. It seems most people seem to develop some form of gastro problems! Sorry that you are suffering too. It seems we are quite similar in that I can be normal all day then suddenly have diarrhea, and then it return to normal!! All very strange!
      I’m not sure if I’m being stupid or not, but what do you mean by VSL#3?


  3. marie

    Hi there, I have been following your journey now with great interest – it sounds like you are doing brilliantly and completely agree with your take on exercise – its so important. I hope you don’t mind me leaving a comment, but but my daughter (she was 11yrs then) has aplastic anaemia and had her transplant on christmas eve 2014, everything seemed to be going very well in terms of counts etc, and she had the usual side effects from the chemo, but then her platelet count stopped rising and began falling, then everything else followed. Since then she has had two top up of cells, and the same pattern followed, so we are now, like you, facing another transplant. I completely got your post about not expecting good news, each week we have blood tests, and now I don’t expect them to be going in the right direction! I know that every transplant is different but I am keen to hear whether yours were different – and how you felt having to go through the process again. My daughter is not really looking forward to it – who would!, she found losing her hair particularly difficult, and also missing school. Again, I hope you don’t mind me asking, but as AA is rare so its quite hard to find people who have gone through 2 transplants! Many thanks – in advance xx


    1. Hi Marie. Sorry to hear your daughter is going through it all too. Its not nice, especially for someone that age. I was very shocked to discover I needed a second transplant, I had not expected it at all as I had been so well. My second transplant was a different regime and different experience as it was targeting MDS/AML rather than AA. Feel free to ask any questions and I will try and answer as well i can xx


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