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Gut GvHD

edited February 3 in Day 100 and beyond
Hi, I am just around the 100 day mark and have been doing really well over all. My blood counts are good, so far I’ve not had any infections or readmission to hospital. I have had skin GvHD but this was only minor and has cleared up. All in all I’ve been feeling very lucky with how things have gone but.... I have had, however, persistent gut GvHD which has been treated with prednisone initially. This sorted the sickness I was feeling but the lower gut has continued to have issues (very windy and diarrhoea). I have now been put on Budesonide. Has anyone else had issues with gut GvHD? How long does Budesonide take to have an effect? Is this likely to be a permanent thing?

Comments

  • Hi,

    I'm one of the community champions on this forum. I had my transplant five years ago. I didn't have many complications but the lower gut problems lasted longer than the others. The symptoms were the same as yours. They obviously weren't as bad as I didn't need specific medication but I certainly wasn't happy being too far away from a toilet for a long time! It's difficult to remember how long it lasted but I would guess up to six months. I'm back to normal now.
    I hope this helps,
    Very best wishes,
    Sue
    Gem03
  • Hi Gem,
    Really sorry to read about your current problems. I had gut GvHD problems from around Day 50. Steroids and budesonide didn’t do much for me and I had to have mesenchymal stem cells to sort things out. It was a tough period as I had to go nil by mouth with TPN for about a month. Things sorted themselves out after about 8 months and now I am 3 years post and don’t have any major ongoing problems. The doctors said to me that sometimes the body just needs time to sort itself out. I didn’t believe them at the time but in my case they were right. It is a major procedure we have all gone through after all. Really hoping you find the budesonide does the trick soon.
    All the best
    Greg
    Gem03
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