chronic diarrhea

[AENEASavc]

I received the gift of life one year four months ago. I am 78 years old and in excellent health. My kidney failure was caused by lithium toxicity. I have had diarrhea over all the months since transplant. My medical care has been outstanding but a cause and solution have been elusive. Under doctor’s care, I’ve taken Imodium, which helps on a temporary basis. I eat a healthy diet and avoid fried food, etc. I follow doctor’s orders. Has anyone else had this problem? What causes the diarrhea? What helped you? How do you cope when out of your living quarters ?

[Darlenia]

I feel for you. My hubby received his gift about a year and a half ago. He has never had issues with constipation at any point in his life but medical professionals pushed the laxatives during dialysis and transplant, never asking about his history. Aggravatingly, laxatives were often slipped in among his other meds without any disclosure and my poor husband then had to suffer the consequences . We quickly learned to speak up quickly. I worry a bit as he get older that bathroom visits could increase a lot. We can't answer your question, but we truly hope you find another med or can switch out a problem med to help you control matters.

[AENEASavc in reply to Darlenia]

Thank you for sharing information about your husband situation. I hope it won’t get worse. Your support must mean a lot to him I have had many changes in meds and watch my diet. They have run literally hundreds of tests (many repeats) but have not been able to find answers. My situation is complicated by an extremely low white blood count. I’m losing a lot of weight going from 161 at transplant down to 115 now. Some of this is caused by not eating much when I have diarrhea.

[Darlenia in reply to AENEASavc]

Please don't give up AENEASavc. Keep looking, keep searching. Crossing my fingers that someone hops on this thread and gives you direction to something that works and curbs the diarrhea and weight loss. It's scary, I know. My hubby at one point contracted the terrible superbug, C-diff, and probiotics were prescribed then. He also has suffered by multiple utis. Oddly, the probiotics did a lot to stop the diarrhea from C-diff and also stopped the multiple utis. I suspect that a compromised immune system as well as the immunosuppressants negatively impacts the flora and fauna in the intestinal and urinary tracts and probiotics help restore their balance and health. Some transplant centers don't allow probiotics, but my husband's center gave him permission to take them after looking at the ingredients. And they've been a true blessing. While this may be an aspect for you to consider, I realize that your low white blood cell may wind up being the exclusive reason for your situation. But keep on searching! Keeping reaching out! Don't give up!

[AENEASavc in reply to Darlenia]

Thank you. I will ask my nephrologist about probiotics.

[Jamok in reply to Darlenia]

what brand of probiotics does he take?

[Darlenia in reply to Jamok]

He took NewRhythm Probiotics, 20 Strains, which we found on Amazon. His issue started when he was on dialysis. Make sure that you get the transplant center's approval since some products can interfere with your immunosuppressants. You don't want to lose your precious transplant. Since then, our center approved another type of probiotic for utis which my hubby now takes.

[Jamok in reply to Darlenia]

thanks for this and I will definitely check with my transplant center. Having some G.I. issues currently in trying to get it under control.

[Andrea_CL]

Hi AENEASavc! I hope they find what is causing you so much trouble and worries.... I had my kidney transplant just 2 months ago and before 10 days I was back at the hospital with a digestive infection. My nephrologist ran lots of tests on me and one of the reasons of my infection and diarrhea was due to one of my medications (Myfortic) she changed it before the standard time (i was supposed to wait until the 3rd month after tx but she saw it was harming me instead of helping me), I lowered antibiotics after the infection was cured and now is much much better....

Maybe what I am going to say next might sound ridiculous to some, but I talked to my body and asked it to be kind to my new kidney, that everyone had to make room for it because it came here to help and it was a gift....

[Jamok in reply to Andrea_CL]

hi,

What was the infection?

[AENEASavc in reply to Jamok]

Going for a CT scan on Friday. Cancer is a possibility. I have taken imodium, prescribed by my GI doctor. Stopped sodium bicarb, which helped decrease the diarrhea and made me feel more comfortable. I keep losing weight despite eating nutritious food (but not as much as I used to.)

[AENEASavc]

You are not ridiculous. The mind-body connection is very strong. Thank you for your advice. I hope all continues to go well for you

[Denise-80]

Myfortic, Cellcept, Mycophenolate cause stomach issues for a lot of people. Sometimes a lower dose is helpful. I hope you get relief soon. Congrats on your transplant.

Best wishes

D

[AENEASavc in reply to Denise-80]

I appreciate your comments.I don’t take any of these meds. my nephrologist and G.I. and hematology doctors have conducted so many tests and tried so many remedies. My nephrologist checked with the transplant pharmacist as to whether any of the drugs I take cause diarrhea. None of them did so this is not the problem. The only thing that has helped is Imodium. My G.I. doctor says that it is fine for me to take it. If I stop the Imodium the diarrhea comes back.

[AENEASavc in reply to Denise-80]

Thank you for your kind reply. I don’t take any of these meds.

[Sammi_n_Munk]

Hello AENEASavc. I’m sorry that you’re going through such a horrible time. I have not had a transplant, but for awhile there a few years ago, I also suffered through continuous diarrhea, and I know it can be troublesome. I also used Imodium (like candy) during that time. My issue was most likely due to the number of different medications that I was taking at the time, but I went online to research how to remedy the issue. Surprisingly, the advice I stumbled upon, was to consume more fruits and vegetables that are higher in fibre. Blueberries, apples, zucchini and others were listed as suggestions. It actually did seem to work. Also, I noticed that consuming more breads (I used my own home-made bread), and dry crackers and such, also can assist with this. I hope this helps. The only part I miss about the diarrhea issue, is that I also was losing plenty of weight (which was needed, believe me). Lol! All my best to you, dear. God bless. 🙏

[AENEASavc in reply to Sammi_n_Munk]

Thank you for the helpful suggestions. I will pursue eating more fiber—fruits and vegetables. Since my transplant and the pandemic set in it has been difficult to go to the grocer. I understand that frozen vegetables and fruit are nutritious so I am going to stock up on them. I have also lost a lot of weight, which was healthy to do.

[blackkat2]

I visited my gastroenterologist for a similar problem. He ran various tests and determined that my pancreas was not producing enough of certain enzymes. (Evidently some of the transplant meds can mess with your pancreas.) He prescribed Creon and the problem seems to have gone away. You just have to remember to take the pills when you eat.

[AENEASavc in reply to blackkat2]

That’s a helpful suggestion. I’m going to ask my gastroenterologist about it. I don’t think they’ve done any tests related to the pancreas. I’m glad you got some relief and hope you continue to feel well.

[Eyak1971 in reply to AENEASavc]

Have you tried a fiber supplement?

[LavenderRabbit]

I feel for you. Before my transplant I used a lot of Imodium. The only advice I can give you apart from the above is to eat yogurt every day.

[AENEASavc in reply to LavenderRabbit]

Yogurt would be helpful. Unfortunately, I am lactose intolerant. Milk products cause diarrhea so I have to avoid them. I am glad you found some relief.

[Palmtreeguy]

First -nice to see a "elder" transplant person. I am 76 and had mine a year ago. I had a LOT of diarrhea during the first 6 months due to serious antibiotics I was taking for 2 bouts of sepsis. I continue to be required to take probiotics daily. Was your Immodium suggested by a "regular" doctor or your Transplant Team? Your Team should have a lot of experience with this problem. Good fortune to you.

[AENEASavc in reply to Palmtreeguy]

i’m glad you responded because I don’t know any other transplant person who is in my age range. They are all much younger. You certainly encountered a lot of serious problems. I am glad that you are now feeling better. I will ask my Team about taking probiotics. The Imodium was suggested by my gastroenterologist who has been following my condition for almost a year. Best wishes to you for good health in the coming year.

[LongIslandGirl114]

Hi, I’m 6 months post Transplant. At 2 moths I started having diarrhea and my team said I could spread out my Cellcept through out the day. I was taking 500 mg 2 in am and 2 in pm. So I spread them out and it helped. Don’t know if your taking that med

[AENEASavc in reply to LongIslandGirl114]

I’m glad things worked out for you. I was switched off of CellCept, which did not agree with me at all. My nephrologist stopped it when I was about a month post transplant. I am glad that you got some relief and hope for the best for you.

[WYOAnne NKF Ambassador]

What meds are you taking? Mycophenolate (Cellcept) caused diarrhea for me. I had it daily and couldn't leave the house. My transplant team reduced my dose and that helped some. With a pharmacist help he figured out that I was taking the generic form of the drug -mycophenolate. Evidently, the generic form is just a little bit different in it's chemical makeup. When I got switched to the name brand MYFORTIC - the GI issues all got better. Now, periodically my nephrologist has to write a letter to my mail order pharmacy requesting I get name brand of my immunosuppressants - Myfortic and Neoral (cyclosporine).

Be adamant that they help you with the diarrhea issues. You shouldn't have to deal with this. Eventually you will get dehydrated and will cause your creatinine to rise. Maybe you need to be switched to a different immunosuppressant? Call your transplant center and get them for help!

[AENEASavc in reply to WYOAnne]

thank you for taking the time to write such a helpful reply. I am not taking any of these meds. My transplant team has stayed on top of the problem and tried many potential solutions. My meds have been changed frequently in hopes of finding a cause. My gastroenterologist prescribed the Imodium, which seems to have helped.

I agree with you about becoming dehydrated. I’ve taken a lot of fluids to try to combat that issue. I hope you continue to experience good health.

Thank you for commenting for it picks up my spirits.

[Parkerbarker]

I went thru absolute hell. Only 4 months post transplant and a cocktail of buscopan tablets,lopramide tablets every day and 2 to 4 times a day and a reduction and change in my mycrophenolate made it possible to leave the house without a toilet tied to my ass.

[AENEASavc in reply to Parkerbarker]

I am glad you got some relief. I’m thinking of renting a port a John to take with me whenever I go out, which is in frequently. I keep it upbeat attitude and appreciate your comment.