I had kidney transplant 3 months ago and it has been a living hell.I have ibs to begin with and for three months my intestines have been getting destroyed from meds.I have chronic watery diarrhea to the point that i cant leave my home for more then 2 hours and if i do i need to have a bathroom close by.Because of this my electrolytes depleted. Magnesium at 47 phosphate at 70 and even though taking stuff to boost these they in turn give me more diarrhea a vicious cycle.Im exhausted all the time cant do housework or anything im existing not living.I take buscopan and loperomide and imodium sometimes but they dont really work.now my creatinine going up because im always so dehydrated and my transplant team useless.Anyone else have this issue and what did you do.btw gave hair loss and shaky hand too.
Advice needed: I had kidney transplant... - Kidney Transplant
Advice needed
I’m sorry that your transplant experience has been so awful. Although I do not have IBS, I had similar experiences that I thought I might have had it. My transplant was in 2021 and for the first 9 months, I was not able to eat very much - anything straying away from the blandest of foods would send my entire digestive system into a roller coaster. I was on Tacrolimus and Cellcept.
Slowly, my transplant team changed my meds to Envarsus and Myfortic. They are the slow-released version of Tacrolimus and Celllcept. A week after the changes, I experienced what it felt like having an appetite for the first time in 9 months! I still cannot tolerate much spices, oils, or dairy. But I can eat and enjoy food now. Hope this will give you some hope to pursue a solution with your transplant team for your digestive system.
Really sorry to hear about your situation. It reminds me of the time when my hubby contracted nasty c-dif when on dialysis and also the time when he contracted ongoing urinary tract infections post transplant. In both situations, probiotics helped restore his stomach as well as urinary tract environments to normal. My hubby continues to take probiotics today to keep his internal biome in equilibrium. So, if tweaking your immunosuppressants and so forth doesn't work, perhaps ask to go the probiotic route. Some centers allow them, others don't. Hope things turn around for you soon!
I’m so sorry about your experience. I received my transplant 4 years ago. I was initially on Tacrolimus and Cellcept and was very uncomfortable. They switched me to Tacrolimus and Myfortic and it has been just fine. I know that initially I was on some meds for upset stomach but they stopped those after maybe 9 months to a year?? I can’t remember. Please double check with your transplant team. I do take magnesium now per my nephrologist. Best wishes!
common side effect of Cellcept is Diarrhea, if Diarrhea does not stop within 2 weeks then nephrologist will switch to Myfortic, which is enteric-coated form of cellcept to reduce adverse GI events
again if Diarrhea does not stop within 2 weeks of taking Myfortic, nephrologist will switch to Azoran, Everolimus, Sirolimus or Betalacept (these are inferior to Myfortic particularly in 1st year of transplant)
First let me say I’m sorry you are having this problem. I had diarrhea at first because of all the magnesium I was taking. They increased it once again because I was low on magnesium. It finally got lowered and the diarrhea went away. If you have a transplant coordinator I would speak with her/him. They in turn will speak to the doctors. If you take another person with you to your appt allow them to be an advocate along with you. I hope they get it under control.
You really need to have a heart to heart conversation with your transplant doctor.
Your side effects are common for Cellcept. I could never leave the house at first because the diarrhea was so bad. They finally reduced the dose of my meds, and again several months later. That helped some but they also discovered that my diarrhea was caused by generic forms of my immunosuppressants. A week after being switched to name brand "Myfortic" which is also enteric coated and "Neoral" my diarrhea stopped. Periodically, my nephrologist has to write a letter to my pharmacy requesting name brand meds only.
The hand tremors also pretty common and usually stop when you get to the 6 month mark or so. I never had issues with hair loss, but many on this site have. Ask your transplant center what they recommend you take. There are a lot of products out there now that will help.
You need to tell your transplant doctor about your side effects! You don't need to suffer needlessly with these issues. They can't help you if they don't know about your problems.
October 15th is my 23rd kidney anniversary. Life has been good!
Best of luck getting your issues taken care of!
Oh they know my problems as im a health worker and have had to hold them to task for many screwups and such our center is bad.
Hi there. It sounds to me like you have c-diff. I had a transplant 7 weeks ago and am going through my second bout of c-diff. It appeared about 4-5 days after my transplant. It could have been picked up from the hospital environment or I cold have had it lying dormant under the control of my natural immune system. I was (and am currently on ) Vancomycin. The first time I was treated with 125mg four times a day for 2 weeks. Once finished, it seemed that c-diff was gone. But, it is a tricky thing. It now appears that it sprang back, meaning it was never completely eradicated from my system. Currently, I am on Vancomycin, 125mg, four timesdaily for two weeks to be followed by an additional two weeks of treatment at 125mg, but a couple of time a day. You need to DEMAND a c-diff test. You may also want a urine test to rule out possible growth leading to a UTI. These will take a few days to process. I would DEMAND to be put on a course of Vancomycin asap, even before confirmation. I was. Everything else you described is consistent with my own experience. I am NOT a doctor. I am just speaking from lived experience here. I wish you a speedy recovery and better days ahead.
I had c diff test and negative,among a dozen others.i know its meds for sure but they really need to figure out a good rx for people like me to stop the diarreha .Icontracted a bad uti,covid and superbug from hospital afteafteer transplant sowas on iv antibiotics 247 for classically a month in hospital.
Ugh, it's often the antibiotics, not only the immunosuppressants, that destroy not only the bad bugs but also the good flora and fauna throughout the body. So you likely have endured a double assault - prompting c-diff, utis, ibs, etc. It creates a cycle of sorts. Hope a solution comes to you soon.
My hand tremors stopped soon after I switched from tachrolimus to everolimus. I had to push my post-transplant doctor hard to make this happen.
I am so sorry for what you are going through. My dad had MRSA after his 2nd transplant. He kept testing negative. He was 6'3" and dropped to 170 lbs. It turns out that the lab doing the testing was coming up with an incorrect conclusion. A test had been sent to an alternative lab and he had, indeed, tested positive. In the meantime, doctors argued over treating him. His doctor had started him on MRSA meds but stopped under pressure. Anyway, this is all to say that tests can be wrong. Regardless, have you considered an advocate to help you get through through to these transplant doctors? Your description sounds so like C-diff. But, if it is the meds, holy smokes! Looking at my transplant guide, Cellcept (Mycophenolate) and Tacrolimus (Prograf) seem to have diarrhea as a side effect. What is your relationship like with your family doctor? Can he or she help you navigate this nightmare? I will pray for a resolution to your challenges. All the best.🤗
Yeah unfortunately we are in a healthcare crisis here where I live and every lab/hospital/family doctors are constantly short staffed so basically patients are on their own unless they nag and nag which do ,lab even refused and cancelled parasite exams even though i had to fight to get it and dr finally ordered it.you cant win for losing
Disclaimer...I don't have IBS, so this may not apply to you.
I'm 5 months post-transplant and still have diarrhea issues. They didn't have any solutions for me until at 3 months I told them that I woke up every day between 3 and 4 am to use the bathroom, I went to the bathroom 5 to7 times a day, and I was afraid to walk too far from my house, so some days I don't walk. I also told them that I was afraid of getting malnourished and was afraid to eat too much produce, because it made it worse. I was eating simple carbs to treat it, white bread, applesauce, bananas, crackers, so I was worried about getting fat. They recommended I try Metamucil, and it worked for me.
I started taking 5 Metamucil (psyllium fiber) capsules every day with my PM immunosuppressants and that has at least let me sleep through the night and as long as I finish walking by 730am, I am fine. Sometimes I take the pills twice a day, depending on how I am doing.
I agree with all of the above recommendations. I was switched to Myfortic and it seemed to help somewhat. I am now almost one year out and it is almost back to pre-transplant, so I think that it WILL get better with time! 😊
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