I am now 7 months post kidney transplant. I was fortunate to never be on dialysis and had a living donor. Things are going just fine with good lab work and I feel great. I am back doing most of what I did prior to transplant.
Now the reason for my question is that the only thing I have had issues with are that I have a lot of GI issues. I can sometimes have up to 5 bowel movements in a day. Occasionally it is diarrhea. I feel like I should have taken out stock in the Imodium company. I have asked if there is anything that can stabilize my “gut.” I have asked the GI doctor and he simply tells me to use Imodium. The transplant doctor has changed the mycophenolate and reduced the tacrilimus doses. I really haven’t noticed much of a change.
Has anyone experienced this? If you have, what have you done and what would you recommend.
Thanks - Happy Thanksgiving to all. I am very thankful that I received a new kidney and will always be grateful to my donor.
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Tankjsl
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if you don’t mind me asking, I have just been diagnosed with the same condition which is horrid. What treatment have they suggested for you? They have reduced my Mycophenolate to 500 x2 daily it’s only been 2 weeks but still getting pain. I hope you are feeling better. 🙂
constipated I get less pain . I’ve laid off the fibre a bit too. I know it sounds contradictory but not everyone’s system can handle too much. I’ve started to drink warm water all the time and that helps. And ask about a probiotic.
Thank you Winner76. So good to hear that you are getting good treatment and relief from your symptoms. I’m back at my renal unit in 3 weeks so will be sure to mention about the probiotics. I hope to have some relief from my symptoms soon 🤞. Take care 😉
I posted on here, but G.I. issues after transplant. Instead of a probiotic, it was suggested to me by the transplant doctor to simply eat a yogurt like Activia instead. I believe it has helped a little. A G.I. doctor told me I was OK to go ahead and take Imodium. So when my stomach starts to feel like it’s flares up, I don’t take a full dose but just take a half a dose and that seems to help as well. I am almost 9 months post kidney transplant, and things seem to be improving a bit. I am really glad about that. I will say that the frequency of going is about the same but it’s not as concerning. Hopefully this trend will continue.
Hi Tankjsl, thanks for replying and congratulations on your new Kidney! 🥳 I’m 2 years post transplant and function is stable at this point. Hopefully will continue that trend 🤞I’ll try some activia tomorrow when I get my shopping, and see if that calms things down a bit. Am eager to try anything at this point just to help get some relief. Congratulations again and I wish all the best for 2024 and hope that everything settles down for you 🤞😊
I have IBS before my transplant so was concerned about this issue. My team prescribed Protonix which I take with my mirning meds. That may help some. However, for me the MagOx they had n EF taking 2x a day was contributing to frequent bowel movements with somee diarrhea. I was initially taking it 2x daily. I’ve cut back to 1x daily which has helped.
However, my diet is a major component with all of this. My GI has me following a low fat diet. Fat triggers diarrhea for me. I also don’t ingest caffeine. Caffeine definitely gets my GI system out of sorts.
This is one of the issues that all transplants centers among other items should discuss before and after transplant. It is a common question on this forum and generally the response is give it time. Once the medication is reduced after transplant it will usually improve. That may take up to a year or far less. Every person is different. Some relieve the problem with probiotics and some with fiber supplements. Whatever you choose always check with your doctor. Some transplant patients end up with ibs and find that a gluten free and dairy free diet helps but watch your sugar and salt intake. And always remember transplantation is a treatment and any treatment has possible side effects. I had fewer side effects on pd, but a better life style with transplant. It is a personal choice. There are many serious side effects with prednisone that I wish I had known before to prepare me for the hip replacement that was a result of the medication. But each person is different. Some have minor reactions to medications and some more difficult. But each reaction is part of the treatment. Congratulations on your transplant and may journey be all you hoped it would be. We are here for support.
I had real trouble like you but a very sore tummy too . It went on for some time. Eventually I changed to Azathioprine from MMF and also came off Prednisolone. Since changing things are so much better , no soreness or pain but still have 3/4 movements a day often.
I can't tell you how often I get asked that question. My first year I could hardly leave the house since my diarrhea was so bad. The transplant doctors reduced my dose of my meds. That helped a little. This may sound weird, but I had a heart to heart talk with a pharmacist since this problem was taking over my life. I was taking Mycophenolate and cyclosporine, which is the generic form of these meds. He tried switching me to name brand meds Myfortic and Neoral. Within 10 days of taking the name brand meds, my problems disappeared. I guess the generic form of these meds is just a little different than name brand. Sometimes it's the dye or coloring they use. Now, when ever I need a new prescription, my nephrologist specifies that it has to be name brand, no substitutions. I do watch what I eat. If I eat a fatty meal, the dreaded diarrhea can continue. Here I am 24 years later - living the good life!
I know some recipients on this site have their immunosuppressant med dose reduced but also switched to a different medication.
Best of luck to you! I know what this can be like.
I had a very similar experience but it did improve once levels were evened out and i learned how to take my meds (always with food) especially the mycephenelate as it is known to cause some GI issues. Congratulations on your new kidney. I too went straight to transplant with a living donor (my hubby) and we were part of a kidney swap with 4 other people, 6 total. 3 donor and 3 recipients. Living donors are our heroes!
Hello, I am very sorry to hear about all your intestinal gut problems which sound awful to me. My spouse never had such an issue. For 14 months after his transplant 11/2018 he had a reject , CMV virus, and major blood chemistry problems. To this day, almost 5 years later, he felt better before the transplant. I am glad you are feeling well except for this problem , which would be very bothersome. I wish you the best holiday and to find an answer to this question.
I am just wondering if you are taking myfortic or cellcept. Sometimes switching helps. I had a lot of nausea on cellcept. Take all medicine with food unless directed otherwise helps for me.
Sorry - busy weekend...should have gotten back to you sooner. I appreciate your reply. I am presently taking myfortic. I was switched 3-4 weeks ago from the cellcept. I really don't know that the change has helped a lot. Today I started to simply eating a yogurt (Active) in the morning with my medications. Today has been great. I am hoping that doing that might help things. Again I appreciate the encouragement and help. This year I am so very thankful for my donor and that a new lease on life has occurred.....for that I am so very grateful.
usually the symptoms get better with time and med dose reductions. If you have any fever, abdominal pain, vomiting or changes make sure to talk to your provider until they hear you.
I had similar symptoms that were so bad I didn’t realize when I got an ecoli infection (likely from a salad) There was a 3 month delay in starting treatment because the provider kept insisting symptoms were from med side effect. A nightmare.
All in all , know you should gradually feel better and better. If you take a turn for the worse keep talking until they listen.
There are many excellent suggestions here, many of which I tried because I was also tethered to the bathroom in the mornings during my first year and a half. I did med changes, diet changes, still have yogurt, daily exercise, etc. One thing that seemed to make a noticeable change for me was taking a dose of Imodium first thing in the morning as soon as I got out of bed. Oddly this timing helped. My GI doctor recommended it to help lessen motility. Sometimes take another dose prior to lunch or sooner if needed. Maybe all these factors together are to thank. Sorry to be late to the conversation. Things have gotten better and better for me and I hope they do for you as well.
Thanks so much. I feel like I've invested in the Imodium company. I have not been taking that daily but a couple times a week when things are a little worse. Lately things have improved.
I am 4 months post transplant and I too have terrible GI issues. I do have crohns but they have assured me my crohns remains in remission. So far I’ve just been dealing with it but it is getting old. I felt great before this started but now I’m getting tired again. I see the dr next week and we will see what he says. I hope they figure out a solution for you.
GI issues seem to be a common problem with transplant patients. GI doctors really haven’t given me any suggestions other than to use Imodium. Lately it has improved and been more confined to the morning hours. Hopefully things will continue to improve. Best of luck with your issues. I totally understand the “getting old” statement. I guess we just have to keep pushing forward and do our best.
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