Immune suppressants side effects

[Santaponsa1]

Hi, anyone on here ever experienced chronic diahorrea and weight loss from taking Myfortic which I was changed to last September from Mychrophenalate which had the same side effects reason for change to above, but my weight loss wasn't as severe.(1/1/2 stone loss) This problem has been ongoing now for one year and for the first two years post kidney transplant I didn't experience anything at all. I've had all kinds of tests done resame and only once one test came back showing an infection and inflammation in my bowel which has now cleared. Also recent diagnosis of fluid round my heart which was detected following a catscan being one of the scans that was undertaken due to above also, you could've knocked me over with a feather for never expected this , however two recent echo scans not showing any damage to my heart, thank god🙏🏻 Referred to cardiology to look at same..Catscan also detected my lower bowel sucked into another part of my colon which can lead to an operation.. Has anyone ever experienced or heard of someone who's been affected by this and if so, what's the side effects from this also? Had a meeting with a bowel surgeon who's reluctant to put me forward for surgery due to heart fluid which I can definitely understand due to risks which comes with any surgery. Feeling very low just now due to same and my nephrologists are very much aware of how I'm feeling. They've been very supportive,however when I go back to the transplant clinic I'll be asking if there's another suppressant I can possibly be prescribed to help ongoing problem..Very worrying time for me, however hoping things will settle down soon 🙏🏻

Thank you all in advance x

[melsbabe]

Hi

I have had the same for 4 years since transplant changed to myfortic now can't live without leperamide up to 6 pills per day specialists say all down to drug toxicity hope this helps

[Santaponsa1 in reply to melsbabe]

Thank you.....Really that's horrible for you too. It's not very nice to live with but what can we do. It's my weight loss that bothers me more than anything and my nephrologist haven't told me anything about toxins. I've had all types of tests and no ones came back to tell me this...

Thanks Melsbabe and all the very best for the future..

[Kernick]

I just went through a small bowel blockage that hospitalized me for four days. They put a tube down my nose into my stomach and sucked out anything that was there.They did not feed me or give me ant thing to drink for 2.5 days. They ran a dye flow test and took xrays and a cat scan. The obstruction resolved it self. Now I am freaking out every day because I am afraid of another blockage and possible surgery. My transplant has always been uncomfortable from the beginning. The transplant team tells me this is normal. However, I never would have had the blockage if not for the kidney transplant surgery. Just another chapter of this challenging process.

[Santaponsa1 in reply to Kernick]

Thank you Kernick. Hope that's the last of your bowel problems. You take care