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Acute gvhd of the gut

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Kitty Total Reaction Points: 0
Hi,
My partner is now 6weeks post transplant and was discharged last week however was readmitted two days later with severe vomiting and diarrhoea. The doctors have said this is gvhd of the gut he also has a skin rash I am so worried as he is unable to eat and his diarrhoea is horrific! I've also googled and wish I'd never because that's just made me even more nervous!
Has anyone experienced this? Or just some reassurance is needed absolutely petrified!

Comments

  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 57
    Hi

    My name is Hayley and I am the nurse specialist in the patient team. Thank you for posting on the forum, I am sorry that your partner is experiencing gut GvHD, this can be very distressing for you both.

    GvHD is a normal and expected side effect of a transplant and can affect the skin, liver and gut early post transplant. It sounds like your partner has quite a severe case but this can be managed with immunosuppression and steroids. These drugs should calm the symptoms down and gain some control, however this can take a little bit of time. This doesn't make it easy for your partner going through it or you having to witness it. If he cannot eat he will be seen by a dietician and he can get some nutritional support until he feels better and can start eating again. Creams can be applied to his skin which should make him more comfortable. If either of you are finding it difficult to cope, and that is very normal, you could also consider asking for some psychological support, which the transplant team will be able to do.

    Google is not always the best way to find reliable information, we always recommend using resources that are trusted. We have a booklet and a video on GvHD which you might find useful https://www.anthonynolan.org/sites/default/files/903PA_Mini_GvHD_lores.pdf
    https://www.anthonynolan.org/patients-and-families/patient-insight-videos

    I am sure that patients that have experienced GvHD will post on here too and you will find that helpful.
    Although this is a very difficult time for you both remember GvHD is a normal reaction after a transplant and is usually very treatable once the correct medications have been administered.

    If you would like to contact me to discuss anything please feel free, my number is 0303 303 0303

    Please keep in touch

    Best wishes
    Hayley
  • TonyHTonyH Total Reaction Points: 10
    Kitty

    I was about 5 weeks post transplant when I was re-admitted to hospital with exactly those symptoms. The word "horrific" certainly resonates with me! I was in hospital for just over 3 weeks and had those symptoms for about 2 weeks before there was any sign of improvement. The good news is that once they did clear up they have never returned in the 21 months since. (I do still get skin rashes, but nothing significant.)

    They assumed it was GvHD of the gut and treated me with ever-increasing doses of steroid which had no affect. After about 2 weeks they tried quite an aggressive drug called infliximab (which is commonly used for crohns and colitis), but around the same time started me on a drug called metronidazole which treats infections. My consultant described me as a mystery because in the end she wasn't sure if it was GvHD or an infection, but within a couple of days I was getting better.

    I really empathise with you and your partner as mentally it was by far the hardest period of my whole treatment because we just didn't know what was going on, what it meant or when it would get better! Plus I had expected to be at home recovering.

    Stay strong. I know it's hard not to think the worst and the internet rarely helps (!), but take comfort from the fact that there will be lots of people on this forum who've had similar experiences and those experiences are now distant memories.

    Tony
  • Kitty Total Reaction Points: 0
    Thank you for your advice!

    Tony, the drugs you mentioned his consultant said today the thing that's worrying me the most is the significant weight loss anyway and he really can't afford to lose more now, he can't face food because it's making him sick they are discussing TPN feed tomorrow which makes me nervous also as the risks with that! The problem he's having is more is coming out than going in, they've increased the steroid again today to max dose however he is now all swollen and retaining fluid in his hands and feet!
    On top of that he's so low and also said 'this is what can kill you isn't it' well that set me off even more because I think when he's alone that's what he must be thinking!
    Thank you for your positive story though it is nice to hear other peoples success stories cause at the moment we are going a step forward then ten back, and I'm so glad your doing well!
    He has the skin rash but that seems to be settling down not to the extent it was and not itching him anymore!
    How did you cope with trying to eat? I don't want to push and nag him but worrying that he's literally just going to starve!

    Thanks
    Kitty
  • greg777 Total Reaction Points: 59
    Hi Kitty,
    I had acute GvHD of the skin, liver and gut, the latter was by far the worst - as Tony says the experience was the absolute worst of the whole process. I was re-admitted around Day 50 and spent 7 weeks in hospital. Steroids didn't work, I had TPN for 4 weeks. I lost a ridiculous amount of weight. The doctors told me there were 4 or 5 second line treatments, I had mesenchymal stem cells infused and luckily it worked for me - ask your medical team about them. DO NOT READ GOOGLE - I convinced myself I was going to die - it certainly felt like that as the core function of the body basically shut down. But I didn't, and I am now 18 months post transplant and weight is back to normal. It was an incredibly tough road and the psychological aspects are really important to look after. Your partner is likely to be on a very high dose of steroids - in my experience, they significantly alter moods. I was laughing hysterically and crying on the floor in equal measure. It's hard for me to write, but I also seriously wanted to throw myself off the roof - only one thing stopped me and that was the thought of my kids. Please get your partner to be open about his emotions - when I eventually did, I had psychiatry and a psychologist in my room within the hour - I was given drugs to help me get through what without doubt was the worst period of my life.
    My heart really goes out to you. One thing a young doctor said to me at the time was, "the body knows what it should be doing, sometimes it just needs time to figure it out" I didn't believe her but you've got to cling to that as in my case she was right.
    Find out about staging, treatment plans, etc, and keep pushing until you get the answers you need. I was treated in Bristol and the team there were excellent - there are lots of options if steroids don't work. And TPN is not to be feared - it is a literal life saver and I had it for 4 weeks and not any adverse consequences.
    Please keep in touch and if I can help in any way, please let me know. My thoughts are with you.
    Greg
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi Kitty,

    That's great advice from Tony and Greg as patients who've gone through this and from Hayley on the clinical side, so there's not much I can add to that. I haven't experienced gut GvHD and can imagine how debilitating it is, but I have had acute skin GvHD which took some time to get over, but it can be treated.

    I'm sure you will by now have told your partner about the responses above and that should hopefully assure him that he is not alone, this happens to other people and it does get better as Tony and Greg have testified. I can recommend seeking psychological help if he is really low. Having somebody independent to open up may help. I saw someone when I was readmitted with an infection a few days after going home for the first time which sent me really low.

    I hope your partner starts to feel better soon and that the treatments for the GvHD quickly reduce the symptoms so that he can start to feel that he's getting somewhere. Please keep us posted and come back for support as you need it. We have all gone through this and we're here for each other.

    All the best,

    Steve
  • Kitty Total Reaction Points: 0
    Hey!
    The rash seems to have improved a lot, especislly on his stomach! They've said his liver looks ok, and fitted a new line today for the TPN which I'm hoping once he's getting fed he has some energy as at the moment is just really low and sleeping all the time!
    There's been no change to the diarrhoea but gone 24hrs now with no vomiting (surely that's a good sign trying to find the positive in every angle)
    They've started a new drug today infliximab which tony mentions so I'm hoping and praying he sees an improvement now as this has been ongoing now for a week, with no improvement with the steroid despite him being on the biggest dose!
    I'm so worried about him!
    Thanks all for your advice!!
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi Kitty,

    It sounds like he's making small improvements which is a good thing. If you can reduce or eliminate some of the effects it probably makes the others a little easier to bear. Fingers crossed the infliximab does the trick and deals with the gut problems which should help him feel better.

    I know it's a worrying time but hopefully his medical team can get on top of his symptoms and help him feel better about things so that he can get on with his recovery.

    Best wishes,

    Steve
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