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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

My son is having gut problems is this normal?

120 days post transplant and my son is having gut issues. Hes been in A and E three times now as his temp has gone up. The doctor says he doesn't think it's gvhd. He's also got a bad cough and has had some IV antibiotics.
Is this just what life is going to be like for him now?
Is it the medication?
It's all very confusing.
Has anyone gone through similar hardships?
Donna

Answers

  • Hi Donna,

    I'm sorry to hear that your son is having gut issues. Just wanted to say that Hayley, our patient experience team post transplant specialist nurse will respond to your message tomorrow when she is in the office. In the meantime I'm sure fellow patients and family members will be able to offer you some support.

    Best Wishes,

    Billie
  • Hi Donna
    My name is Hayley and I am the post transplant specialist nurse in the patient experience team. Thank you for posting on the forum and I am sorry that your son is having some gut issues at the moment.

    120 days post transplant is still early, his immune system and body is still recovering from the treatment and this leaves him vulnerable to infections and side effects. It is very normal to experience gut problems at this stage, the difficulty can be in finding the cause and it is usually a process of elimination. The two main causes could be either GVHD or infection, so to assess if there is any infection in his bowel samples would have been sent for testing and the treatment will then depend on the results. If your son is still on any immunosuppression or if this is currently being reduced he is at risk of GVHD, has he got or had any other GVHD? Either way it is a normal side effect of treatment, both can be treated and I am sure his transplant team has looked in to both causes. It could also be the medication as you mentioned especially if he has been on IVAB. Has he been eating much? He will still be on many medications to protect him but the combination of these along with antibiotics and a poor appetite can easily result in gut issues too.

    Experiencing temperatures and infections is also very normal especially coughs and colds, to be readmitted at some point in his recovery is expected but again the difficulty can sometimes be finding the cause of the infection. Blood cultures and samples will also have been sent but this doesn't always guarantee to find the exact infection which is why he will have been treated with broad spectrum IVAB.

    I'm afraid often there is no clear cut answer and infections, admissions and gut problems can all be interrelated.

    Recovery can be very up and down and I think its really important that you speak to your son's transplant team to establish their thoughts on the cause of his current problems and the plan moving forward, this might give you some clarity and reassurance. You should be reassured however that nothing his is experiencing is abnormal and I am sure there will be many people on this forum who have experienced very similar situations. I know this doesn't make it any easier for your son or yourself to have to watch him go through this but this will not last forever, like I said 120 days post transplant is early and it can take up to 1 year to fully recover.

    I hope that he begins to feel better soon and then he can move forward with his recovery.

    Best Wishes
    Hayley
  • HI Donna,

    I think Hayley's advice above is really good and hopefully helps reassure you. I didn't experience many severe problems at the stage your son is at now, though I did suffer from the runs regularly. I put that down to the after effects of the treatment and my systems not being fully up to speed.

    Hopefully you will see some improvement soon and he will continue to progress towards a full recovery.

    Life does eventually return to near normal and your son will hopefully be no different to many of us here. I can look back over 3 years now and it's like it never happened. I have a different outlook on life due to what I've been through, but physically I have changed little. There is no reason why your son shouldn't be the same.

    All the best,

    Steve
  • Thank you. We saw his consultant yesterday and everything seems to be fine, blood, chest, guts so
  • Hi Donna, it sounds like the gut problems may have sorted themselves out now which is fantastic, but I'd be happy to share my experiences if it is useful at a later date. I am 150 days post-transplant and had acute gut GVHD at Day 50. I am now beginning to experience the first signs of what might be chronic gut GVHD so it is all very live for me.
  • Hi Donna,

    I'm pleased to hear that the consultant is happy with things at the moment so hopefully he won't suffer many problems with GvHD. Fingers crossed he stays well and can continue his recovery unhindered.

    All the best,

    Steve
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