Post allogeneic stem cell transplant (SCT) Digestive Issues

Posted by jandm1813 @jandm1813, Jan 2 9:03am

My husband is 69 years old and had an allogeneic stem cell transplant on Nov 22, 2022, so he is day +41. He is continuing to struggle with digestive issues. He has had bouts of diarrhea and nausea that come and go. He is taking Imodium sparingly and Zofran once a day. Several meds he takes post SCT say they can cause diarrhea and nausea, so this is most likely why, but we are trying to get him past this. He is one day away from finishing Prednisone for skin GVHD that has completely gone away. We were 80% plant based before the SCT and are leaning toward taking that path again. Any insight on what else we should try? Thank you in advance!

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Hello @jandm1813 and welcome to Mayo Clinic Connect. At 41 days post transplant, it does seem like this may be persisting longer than you may have expected, is that right? Changing his diet and doing what you can to address gut health seems very reasonable at this point. Is his doctor concerned about how long this has been going on?

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@amandajro

Hello @jandm1813 and welcome to Mayo Clinic Connect. At 41 days post transplant, it does seem like this may be persisting longer than you may have expected, is that right? Changing his diet and doing what you can to address gut health seems very reasonable at this point. Is his doctor concerned about how long this has been going on?

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Hello! His SCT doctor and the team have not been overly concerned as diarrhea is typical after the procedure. Mark did have stomach pain on Monday night that kept him up, ugh, and on Tuesday (yesterday) at outpatient clinic, it was determined that with stomach pain and diarrhea issues, they are testing a stool sample (had one 3 weeks ago, negative) and may have an upper and lower GI scope performed to rule out gut GVHD. I will post an update soon. Thank you @amandajro for your insight!

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@jandm1813

Hello! His SCT doctor and the team have not been overly concerned as diarrhea is typical after the procedure. Mark did have stomach pain on Monday night that kept him up, ugh, and on Tuesday (yesterday) at outpatient clinic, it was determined that with stomach pain and diarrhea issues, they are testing a stool sample (had one 3 weeks ago, negative) and may have an upper and lower GI scope performed to rule out gut GVHD. I will post an update soon. Thank you @amandajro for your insight!

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Good morning, @jandm1813 At day 41 after an allogenic transplant, it’s not unusual to still have continued nausea though it starts tapering off. It comes with the territory. Having pain isn’t as common so his doctors may do the upper/lower GI scope. A question…is he on oral magnesium or still getting infusions? When I switched to to oral mag, that’s when diarrhea started. We then substituted Magnesium glycinate for the Mag Citrate. It was a game changer.
I’m glad to hear the prednisone is working for his skin gvhd. It should have the same effect on his gut issues if that’s gvhd as well. That’s what prompted me to ask about the magnesium.
Tell him to hang in there! I promise this gets better. I’m at 3.5 years now and feeling awesome. That first 100 days is rough. There are so many ups and downs. The nausea is the pits but it gradually goes away and eating becomes easier.
If he does gravitate back to the plant based diet make sure he’s getting enough protein. The chemo and the transplant itself is traumatic and just getting enough food, calories, and nutrients on a daily basis is a struggle. I was encouraged to eat anything I could no matter the source, just to get calories down. My dietician, bless her heart, encouraged me to get Lactaid Ice Cream! Smoothies were a daily staple! It was all there…calories, protein, carbs, fat.
Another key, and I know it’s difficult is for him to get ample water. 64+ounces a day if possible. Room temp water seems to be easiest to drink in larger amounts.

Keep me posted, ok? Happy to answer any questions you have on his transplant.
How are you doing? The caregiver bears the brunt of all of this. Sending you a hug!

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@loribmt Thank you, Lori, for your insight! Getting enough calories in him is a challenge and I appreciate the tip regarding the Lactaid Ice Cream! He drinks about 48-60 ounces water daily so I will suggest to him to get a little more water in.
I am doing pretty well, thank you for asking! Definitely a learning curve as, before his blood cancer diagnosis a year ago, he was 100% healthy. We try to keep the perspective that getting through the next 60 days is the goal for now, for today 🙂 We are staying in long-term housing on the campus of the Mayo Clinic in Phoenix so we are away from family. Our son lives in the area here and we did see him on Christmas for an hour, outside, masked. Great to hear you are doing well at 3 and a half years post SCT, very inspiring!! Thank you, Jamie

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@jandm1813

@loribmt Thank you, Lori, for your insight! Getting enough calories in him is a challenge and I appreciate the tip regarding the Lactaid Ice Cream! He drinks about 48-60 ounces water daily so I will suggest to him to get a little more water in.
I am doing pretty well, thank you for asking! Definitely a learning curve as, before his blood cancer diagnosis a year ago, he was 100% healthy. We try to keep the perspective that getting through the next 60 days is the goal for now, for today 🙂 We are staying in long-term housing on the campus of the Mayo Clinic in Phoenix so we are away from family. Our son lives in the area here and we did see him on Christmas for an hour, outside, masked. Great to hear you are doing well at 3 and a half years post SCT, very inspiring!! Thank you, Jamie

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It’s my pleasure to help walk along this journey with you. Your husband’s story sounds a lot like mine. Just 3 weeks before my diagnosis I had been healthy, energetic, no sign of any issues. Then a steep plummet in 3 weeks time and finally a diagnosis of Acute Myeloid Leukemia with mutations that made relapse likely. So that necessitated the allogenic transplant.
Having this second chance at life is certainly a gift like no other. It comes with some challenges that’s for sure! But it is so worth the effort to keep forging onward. The ‘bad’ days will become less and less. I promise ☺️

It’s great your son lives in the area! It helps to have some snippets of normalcy during the recovery period, especially when you’re away from home so long.
Your husband is doing great with 48 to 60 oz of water daily. Initially I had such a hard time even keeping a glass of water down at all. But it is so vital to keeping the body healthy, hydrated, the plumbing works better and the toxins get flushed through.

Let your husband know getting enough food will eventually stop being so challenging. My husband jumped through hoops trying to get me to eat. I mostly just nibbled on anything that seemed palatable. I still had issues with loss of taste and tastebuds from all the chemo from the AML so textures were an issue too. But now, I eat everything! 😅
His energy and stamina will return too. I’m back to 7-8 miles daily and no limit to my activities. Your husband will be back in no time!
Thought you and your husband might enjoy a little story written about a young woman, whom I mentored last year, and myself with our shared experience with AML and our BMT journey.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
What cancer derailed your husband last year?

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Update: Mark had an upper and lower GI scopes on January 6 and on January 9 we received the results of the biopsies; he does have gut GVHD grade 1. That evening he began having severe diarrhea and vomiting along with extreme stomach pain so, after speaking with the outpatient clinic staff at 1230am, we went to the emergency department. After an abdominal CT showed a partial bowel obstruction, he was admitted to the hospital for evaluation and treatment for a day and a half. It seems his gut GVHD has caused inflammation which affected his whole bowel system, yikes. He is now on a high dose of Prednisone to treat it and he is on soft foods through the weekend. He is feeling much better! Still has diarrhea and we do know this will likely continue post SCT for a while. The photo attached was taken on Saturday, January 14 on a 45 minute walk. As you can see by his smile, he is feeling much better! Thank you all for your insight! Jamie

REPLY
@loribmt

It’s my pleasure to help walk along this journey with you. Your husband’s story sounds a lot like mine. Just 3 weeks before my diagnosis I had been healthy, energetic, no sign of any issues. Then a steep plummet in 3 weeks time and finally a diagnosis of Acute Myeloid Leukemia with mutations that made relapse likely. So that necessitated the allogenic transplant.
Having this second chance at life is certainly a gift like no other. It comes with some challenges that’s for sure! But it is so worth the effort to keep forging onward. The ‘bad’ days will become less and less. I promise ☺️

It’s great your son lives in the area! It helps to have some snippets of normalcy during the recovery period, especially when you’re away from home so long.
Your husband is doing great with 48 to 60 oz of water daily. Initially I had such a hard time even keeping a glass of water down at all. But it is so vital to keeping the body healthy, hydrated, the plumbing works better and the toxins get flushed through.

Let your husband know getting enough food will eventually stop being so challenging. My husband jumped through hoops trying to get me to eat. I mostly just nibbled on anything that seemed palatable. I still had issues with loss of taste and tastebuds from all the chemo from the AML so textures were an issue too. But now, I eat everything! 😅
His energy and stamina will return too. I’m back to 7-8 miles daily and no limit to my activities. Your husband will be back in no time!
Thought you and your husband might enjoy a little story written about a young woman, whom I mentored last year, and myself with our shared experience with AML and our BMT journey.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
What cancer derailed your husband last year?

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@loribmt Mark was diagnosed with Myelodysplastic Syndrome, a blood cancer, last May. Love the article you shared! I had read that prior and now I know this was you. Very inspiring that you are walking long distances now. We plan to continue hiking in the future! Jamie

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@jandm1813

Update: Mark had an upper and lower GI scopes on January 6 and on January 9 we received the results of the biopsies; he does have gut GVHD grade 1. That evening he began having severe diarrhea and vomiting along with extreme stomach pain so, after speaking with the outpatient clinic staff at 1230am, we went to the emergency department. After an abdominal CT showed a partial bowel obstruction, he was admitted to the hospital for evaluation and treatment for a day and a half. It seems his gut GVHD has caused inflammation which affected his whole bowel system, yikes. He is now on a high dose of Prednisone to treat it and he is on soft foods through the weekend. He is feeling much better! Still has diarrhea and we do know this will likely continue post SCT for a while. The photo attached was taken on Saturday, January 14 on a 45 minute walk. As you can see by his smile, he is feeling much better! Thank you all for your insight! Jamie

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Hi Jamie and Mark! What a wonderful smile! It’s the smile that comes when you realize you turned the corner! 😊 You’re more than halfway through the 100 days!

It’s not at all unusual for gut GVHD and it’s one of the most common early side effects from the transplant. Now that Mark’s getting the prednisone that will allow things to settle down. Time for some healing so he can get on with his life!

Almost all of us with an allogenic stem cell transplant will have some skirmishes with gvhd while the new immune system learns not to be so combative with its host. The new system will start recognizing the proteins in Mark’s body and eventually they (body and new cells) will learn to play well together. 😅
In the meantime, it can be like stomping out little fires. There may be skin blemishes, or aches and pains, tummy issues, etc. Just keep notes of changes and if any seem to be increasing then report them. Nothing is too large or too small to report. My transplant team used to joke about wanting to know if I got a new hangnail.

During the first 100 days small things can get out of control quickly and are considered acute graft vs host disease events. After that time, gvhd tends to come on more slowly, sometimes with vague symptoms.
A cautionary note: Be mindful of the sun. Being on immunosuppressants greatly increases chances of skin cancer. A sunburn at this stage of recovery can bring on skin gvhd. For the same reason, masking is still important outside if there is a risk of fungal infection. Lung gvhd can develop quickly. Don’t mean to nag but these are some of the biggest precautions we need to take and the most critical in the first 100 days. Anything that is an irritant or inflammatory such as sunburn can have the new immune system aggressively responding.

Mark’s smile is just radiant! I know that feeling. It’s almost giddy! If you have a dog and it gets the zooms…that’s the feeling! A 45 minute walk at this stage of recovery is awesome! Giving you an elbow bump and a high five… Welcome to your life as a chimera! 🧬

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