Experience with chronic gut gvhd

greg777

Hi there, I had my transplant in early February this year so am coming up for 150 days post-transplant. I developed acute gut gvhd around Day 50 which was tough and took a long time to get under control. I think now that I am just beginning to see the first signs of chronic gut gvhd setting in. I was just wondering if anyone had any experience of chronic gut gvhd in the community, especially if it followed on from acute gut gvhd? Is there anyone who might be able to help me with what to expect, tips to manage it, etc? I found the acute gut gvhd really difficult to cope with and was really hoping that I might avoid the chronic, but it looks like that won't be the case, so any support / guidance from anyone who has been through it would be a fantastic help. Best wishes to everyone.

Dieseldrinker62

Hi Greg, I'm sorry to hear of your problems. I also had GvHD but in my case it affected my skin, so whilst it was inconvenient and frustrating it was manageable.

I had various treatments for my GvHD including steroids and Photophoresis but I don't know whether they work for gut GvHD.

There may be others here who can help as far as your type of GvHD is concerned but I'm sure Hayley from Anthony Nolan will be able to help as she will have come across others in your situation.

I hope your condition can be treated swiftly and that you can get back to normal and complete your recovery.

How are you feeling other than the GvHD or is that slowing things down generally?

All the best,

Steve

Hayley_Anthony Nolan

Hi Greg,

My name is Hayley and I am the nurse specialist in the Anthony Nolan patient team, thank you for posting on the forum I am sure you will get some good advice from others, its great that Steve has already responded.

I am sorry you have had such a tough time post transplant, although we are encouraged when we see GVHD in patients, having watched many patients go through what you have described it is a very unpleasant and uncomfortable experience. It does also sound like you have had your fair share of infections as well so I am not surprised that you are feeling a bit drained from it all and keen to move forward and regain your strength.

Its hard to say what the long term effects of chronic GVHD will be because in some cases the symptoms will eventually all die down and you never have any problems again, in other cases it might be that the symptoms are generally very stable and you will have the occasional flare up that might require treatment. For some however, chronic GVHD means that you remain on immunosuppression for a long period of time or sometimes even for life and I think this is the key for what the long term side effects will be for you. The main disadvantage for patients that remain on immunosuppression or steroids for long periods are that they are at a higher risk of infections, long term steroid use can also put you at risk of infections and cause damage to your muscles and bones. However if you remain on low dose immunosuppression or steroids and that's all you need to keep the GVHD under control the side effects would be minimal, the more severe side effects are associated with long term higher dose use. Photophoresis as mentioned by Steve, is a ultra violet light therapy used to treat, skin, gut, liver and oral GVHD and is used if the immunosuppression and steroids are not able to control the GVHD. You do not sound like you are at this stage but you would need to be referred to a specialist centre to receive the treatment and it can take a while to work but does work well.

I realise this sounds daunting and a bit uncertain but try not to worry to much at the moment, in terms of transplant and chronic GVHD it is still early and this is a very expected part of the recovery. So if you need immunosuppression for a while longer that is fine, remember even if it takes a while its important to take it slowly in reducing the immunosuppression to prevent a flare up so that you eventually come off them altogether, rushing it can cause uncomfortable symptoms and a longer time on the medication.

As you have already experienced the symptoms of gut GVHD can also lead to poor diet and weight loss so the longer the symptoms of chronic GVHD goes on for the more mindful of this you need to be. Nutrition is vital in your recovery so you should be in touch with a dietician who can advise you on how to increase your weight and what foods might be better to eat. You might have already noticed that certain foods irritate your gut GVHD and so you might have to plan your diet more. You might be referred to a gastroenterologist who has some knowledge about gut GVH and they can not only advise on how to manage your symptom but should also be able to advise on diet too.

It is hard to say what will happen over the next months so I would suggest that you focus on your nutrition and continue to get stronger and just see how the chronic GVHD responds. I often think one of the hardest parts of the recovery is the unknown, nobody can tell you what side effects you are going to experience and exactly how long it will take to recover. You are clearly a strong person Greg, you got through the horrible period when gut GVHD was at its worst so you can make it the rest of the way. You will have seen that there are lots of people on this forum who went through the same problems as you who are now getting on with living their lives and you will reach that point too.

I hope this has helped and please keep in touch with your progress

Best wishes
Hayley

greg777

Hi Steve, thanks very much for your message and kind wishes. The worst thing about the acute gut GVHD was the length of time I had to spend in hospital and the fact I lost 25% of my body weight. That has left me physically much weaker than I was before, but things have stabilised in the last month which was why I am desperately hoping to avoid chronic gut GVHD problems, although I know it is much more likely once you have had the acute. Other than that, I had mild acute skin GVHD which cleared up within a couple of days and very minor liver involvement too which also cleared up quickly. I have had various viruses re-activate (EBV, mouth ulcers, adenovirus) but they have also been relatively easy to clear up. The one that really knocked me was the gut GVHD - I hadn't prepared myself for how tough it would be physically and psychologically and so that's why I was hoping to connect with some others who might have some good experience to share if this is going to be a longer-term thing for me.

On the flip side, there is no sign of my cancer now post-transplant which I am ecstatic about and is after all the reason we all go for the transplant, so I have a lot to be thankful for. My donor's cells are doing a great job, just probably too great a job when it comes to my gut!

How about you? How far along are you and how are you doing now?

Many thanks

Greg

Dieseldrinker62

I'm doing well thanks Greg and it's now like it was all a bad dream and my life is back to more or less normal.. I had a prolonged recovery due to my GvHD which was eventually conquered by Photophoresis, but it was a lengthy process and meant I was on Ciclosporin for longer than might be normal.

I'm thankful that the GvHD is finally gone and doesn't seem to be showing any signs of coming back, though I'm careful not to do anything that could trigger its return, which means I'm careful in the sun and keep my hands wrapped up in the cold.

From what I understand the GvHD is a good thing (probably in small doses) as it also works as Graft Vs Cancer and helps keep the Cancer at bay. I guess like you say it is a sign that your new cells are doing their job, but it's a shame that they're attacking the wrong part of the body. The Photophoresis killed off the problematic T-Cells for me which created the problems with my skin and if your gut GvHD is caused by the same type of cells that might also work for you? It's probably early days as you're +150 days but if it does work for gut GvHD it might be one of the options your medical team might consider in the longer term if the situation doesn't improve. I started Photophoresis 8 months post transplant, and about 5-6 months after the GvHD first presented itself.

For me the GvHD was an annoying inconvenience, but for you I can imagine it's of concern and probably more than an inconvenience. Fingers crossed that if your skin and liver GvHD has cleared up the same might be true of your gut eventually.

All the best with it all and I hope somebody can reassure you that it will eventually go. Please keep us updated on your progress as I'm sure you will not be alone in this situation.

All the best,

Steve

greg777

Many thanks Hayley and Steve, it is so great to get advice from both of you given all your experience. I was at the hospital today and for the time being, the plan is just to monitor things and see how they develop - given the nature of acute and chronic phases, the doctor said it is obvious when someone has acute gut GVHD, but less so with chronic as it could be something else like a virus or a developing intolerance to certain foods. As Hayley mentioned, the priority in the short-term is going to be to try and get my strength up through nutrition - the steroids and immuno-suppression will remain in the background until we see what happens.

I will definitely keep the community updated as to my progress, in case it is useful for anyone else.