It's a mystery...

[Advocate4life]

My husband is 2.5 years post kidney transplant. He has done well up until recently when he began having chronic diarrhea. This went on for 6 days before he was hospitalized due to severe dehydration. After every test under the sun and 6 days of IV fluids, his kidney function levels climbed back up to acceptable levels; however, he's still battling the diarrhea and working hard to remain hydrated. They couldn't find a thing and doctor ultimately stated that it is most likely a virus that is taking it's time to get resolved. On top of his anti-rejection meds, he's also taking Imodium, Metamucil and a prescription anti-diarrheal for the next 2 weeks. Has barely made any progress at all.

Prior to experiencing this bout of diarrhea, he abruptly stopped taking his Famotidine (Pepcid). He had been told that he could stop taking it, but he opted to stop cold turkey rather than wean himself off. Initially, the docs did not feel this would be a contributor but they did circle back after all tests (including a sigmoidoscopy) came back negative and told him he could start again to see if it helps. He stopped out of concern for the side effects.

I'm wondering if anyone else has ever experienced something similar? If so, I'd welcome your feedback. Thank you!

[wonderingjen]

Hello Advocate4life. I have a kidney transplant and recently had a bout of diarrhea. My nephrologist said she didn't think it was anything related to my kidney stuff. The GI issues continued and I eventually went to my primary care doc who ordered a stool sample and it turned out to be a bacterial infection that I'm currently on antibiotics for. If he had a sigmoidoscopy my guess is that the also did a stool sample; but if not, maybe that would be something to request? Hoping you find answers and that he gets better soon!

[Advocate4life in reply to wonderingjen]

Thanks so much wonderingjen! It's good to hear they were able to determine what was causing your trouble. He's had every test under the sun, including 3 stool samples (most recent this morning), nothing found. We did note that the # for the BK virus was significantly increased. Not sure if this is related.

He's going for an infusion tomorrow and hoping to talk to his nephrologist soon. Also meeting with a new gastro doc tomorrow. Fingers crossed we get answers soon.

[wonderingjen in reply to Advocate4life]

Hoping the best for him!

[refspd in reply to Advocate4life]

Hi, I had my second kidney transplant at the Mayo Clinic in Feb. of 2023. My first one lasted 22 years. I too battled some diarrhea and my transplant team told me I had BK Virus. They lowered my dose of Cellcept for a couple weeks to allow my immune system to do its work on the virus. My BK is no longer present in my blood tests and the diarrhea is no longer an issue. I'm now back on my regular dose of Cellcept. Hope this is helpful and he starts feeling better soon. I know its very stressful when it comes to the health of the kidney.

[JEanes55 in reply to refspd]

What is BK virus?

[Advocate4life in reply to JEanes55]

Hi, JEanes55! I pulled this info off of the Kidney Foundation website. Easier than trying to explain and I know I wouldn't do a very good job of it. ; )google.com/url?sa=t&source=...

[JEanes55 in reply to Advocate4life]

Thank you so much!!!!

[Jayhawker in reply to Advocate4life]

I wondered about both BK and CMV…

Jayhawker

[Bax509]

Hi - I'm so sorry your husband is going through this. I have diarrhea fairly regularly since my transplant 3 years ago but not as severe as this and fairly well controlled with Imodium. I was told my antirejection medication was likely responsible but I'm sure they have ruled that out in your husband's case. Never heard of the Pepcid side effects. Wish I had better information for you. Sending you wishes for a speedy recovery for your husband!

[JEanes55]

I had a bout of diarrhea four years ago. I had every test you can think of and three different stool samples done. I lost so much weight and nothing was never found to be the problem. I thought it to be my body chemistry changing and every so often I have a problem with diarrhea and then my body goes back to normal. I have a smaller body now and just watch what I eat. I was told that I was lactose intolerant. So I can’t eat anything dairy. So I stay away from that.

[Mydaughtermyhero]

So sorry about this. I assume with all of the testing that he has been checked for parasites.

[WYOAnne NKF Ambassador]

I know someone asked what the BK Virus is... Most people get BK virus as a child and only seems like a cold. Most don't even know they have BK. But the virus stays latent in your body. When you have a transplant your immune system is lowered due to your immunosuppressants and the BK virus wakes up. Kind of weird how it works. The virus symptoms are worse for us after a transplant. I know doctors' worry about the virus attacking your kidney transplant.

When I had my transplant in 1999 the transplant team worried about CMV, another virus. I never had it, but my 16 year old deceased donor did. It's another one of those virus's that if a healthy child your probably had it and never knew it. Symptoms are kind of like mono. After a transplant it's a different story. I have a friend that actually lost her kidney due to CMV and is back on the transplant list.

[Panda9122021]

I had an issue when I couldn't get the magnesium tablets I was used to and tried a different brand. Has he made any changes like that? Hope it gets sorted out soon.

[WYOAnne NKF Ambassador]

When I had my transplant I had horrible diarrhea. They did every test imaginable and nothing showed up. All was normal. The doctors were able to reduce my doses of my immunosuppressants. And things improved. But about when I was about 2 years post-transplant I started having a big problem with diarrhea again. Tests were done again but didn't show anything. About the same time my pharmacy started giving me the generic form of my immunosuppressant meds. A very smart pharmacist told me that generic forms were just a little different in their additives than name brand meds. Sometimes the coloring/dye, etc. in the med can cause problems. My transplant team didn't think that was the cause of my problem, but did change my RX of immunosuppressants to name brand only. About 2 weeks later the diarrhea got better. About 3 weeks all of the diarrhea stopped. I am almost 25 years post-transplant and I still take only name brand of my immunosuppressants...Neoral instead of cyclosporine and Myfortic instead of mycophenolate acid. Just a thought, is your husband taking generic form of his transplant meds? If he is, see if you can try name brand for a month or so and see if it makes a difference! Generics are cheaper and most pharmacies will automatically give you the generic form unless the doctor specifies "name brand only."

Wish you the best! I know how horrible the diarrhea can be!!

I am here to help if I can......

[Advocate4life]

So glad I found this forum. Thank you all for your feedback. He has been checked and rechecked for every parasite and virus and is continued to come back negative. Gastro doc today ordered an endoscopy to check for microscopic colitis. Something that can be brought on with long term use of Losartan. It's rare. Also checking thyroid. Wishing everyone good health and healing.

[Winner76 in reply to Advocate4life]

Hi,

I was diagnosed with colitis 2 years after transplant , when I have a flare up it’s horrible. So fatigued, constipation, bleeding , pain. But there is treatment available. I hope he gets answers soon, nothing worse than not knowing.

[Advocate4life in reply to Winner76]

Thank you so much. Hoping we will get some answers soon.

[Quercusalba]

Hi, I'm sorry you've gone through this, my sympathies. It sounds like you're diligently following every possible diagnostic path. I'm 3 years post transplant and just got over 4 weeks of diarrhea. My PCP ran extensive blood work and cultures and everything showed up normal. But a few days ago it occurred to me that maybe my off off brand substitute Imodium was just not working. It was from a company called SDA Laboratories. I stopped it and started using a big store name brand of Loperamide, and overnight my symptoms went away except for a little bloating that's decreasing. Hallelujah! Being tethered to the bathroom and diaper rash were not an acceptable life style. This ties back to others' comments about the value of using name brands over generic. I'd avoided Imodium brand due to the cost and needing it preventatively on a daily basis due to transplant meds side effects. At this point I'll say that the national store brand (Target) seems to be working as well as the Imodium brand. I hope your own solution comes soon and turns out to be this simple and benign. Hang in there.

[Sally03]

Five years after I had my transplant and Ihave had it now for 21 years. I had a reaction to my meds. It was cellcept and it caused me to have toxic bowel syndrome. I was going into rejection and had to stay into the hospital. I had diarrhea and I couldn’t eat anything much they change cellcept to imuran and they took me off my imuran the last visit to the transplant office this year. They told me to eat yogurt for my diarrhea that it puts back your good bacteria.

[Advocate4life in reply to Sally03]

Thank you for sharing this Sally03 and I'm glad they were able to figure out what was causing your problems. It's also encouraging to hear you've had your transplanted kidney for 21 years. We're seriously contemplating moving over to Mayo. He's lost 20 pounds and today he had bloodwork and an infusion and his kidney function levels are right back to where they were when he entered the hospital. It's so frustrating. He's scheduled for an endoscopy on Wednesday, but I'm concerned he may not be up to it. He also has A-fib (diagnosed 20 years ago).

They did ask him to go off his losartan temporarily and switched his mycophenolate to mycofenolic acid. Very little change.

[Sally03]

I’m so sorry you have to go through this. It is very frustrating to not be able to find what’s going on. When my med reacted on me. it was the nurse coordinator that figured it out. I hope they figure out what’s going on with him very soon.

[Advocate4life in reply to Sally03]

Thank you Sally03! He was admitted to University hospital on Monday because his lab #s had tanked again. This time potassium was super low as well. He's scheduled for a full colonoscopy AND EDG this afternoon. What a difference this hospital has made just in our confidence level. We finally have providers (nephrologists, GI, cardiac, nutrition) working as a team. Something I had been asking for all along. Feeling hopeful we can get the answers we need so that he can get back to his "normal" routine.

[Sally03]

I hope he has a wonderful recovery

[Advocate4life]

Thank you again, Sally03! He's been in the hospital since last Monday. They were able to arrive at MMF toxicity. Something that had been mentioned here and I had wondered about after doing my research. They switched to another med and he's been receiving IV fluids for all but one day (at which time his progress stalled). He's still battling diarrhea but we are starting to see some small improvement as he starts eating more and they continue to replace electrolytes, etc.. They want to make sure that all of his labs are where they need to be in the a.m. and barring any issues tomorrow, he'll be released with a solid plan of action moving forward.

[Bubba1995]

Hope you have resolved your issue with diarrhea, but if you haven't I have a suggestion. I had issues with diarrhea years back, and it was due to the mycophenolate I as taking. I changed to Mycophenolic Acid. It is a delayed release tablet and I take 360 mg twice a day. That resolved my diarrhea issue and I've been good for the last, at least, 8 years. I've had my kidney transplant for 29 years now, so I hope this can help. Good luck, Bob

[Advocate4life in reply to Bubba1995]

Hi, Bob! Thanks so much for sharing your story and it's good to hear that they were able to resolve the trouble you were having. 29 years post transplant is amazing and encouraging - congrats! They did finally commit to the MMF diagnosis and tweaked his meds. He was released a week ago and his labs have been the best they've ever been since transplant. He looks 1000% times better and says he's feeling 1000% times better. It's wonderful to have my husband back. : )

[Bubba1995]

That's great to hear!