It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Please read the house rules and keep this community safe for yourself and others.

Gut GvHD

edited February 2019 in Long-term recovery
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?


  • 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,
  • 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
Sign In or Register to comment.