GI issues

[Ladybug_05]

Hello,

I'm just about 4 months post transplant, and my myfortic was changed to azathioprine due to my GI tract being unable to tolerate even the extended release form of Mycophenylate. I've been having diarrhea for a while now and it's to the point where my team wants to do GI testing to see if there's something actually going on that's not medication related. It's worth noting that I've drastically changed my med regimen due to the transplant. I've also been on multiple antibiotics from week 3 until about 2 weeks ago due to varying infections that I caught. I've also had to drastically change my diet since my transplant (no longer a renal diet) to include dairy, nuts/beans, seeds, seafood and dark cola (to boost phosphorus) and my stomach isn't taking any of my food choices well. I'm becoming frustrated, since no matter what I seem to eat, my stomach will cramp up and I end up with horrible indigestion.

I want to believe that my body is just having a rough go of it and it's a combination of everything that has happened these last few months, but part of me is also becoming very concerned that I can't seem to process my food correctly and everything I consume is making my digestive system freak out. I haven't lost any weight (actually gained 15 lbs thus far), but I'm growing tired of having so many issues with my GI tract, on top of my other side effects from medication that I've been making noise about as well.

I'm already trying to convince my transplant team to lower my kPhos supplement from 3 pills 3× a day to anything lower to lower the pill count. I'm not on magnesium and I already use metamucil, which at this point makes me so nauseous I want to puke it up. I try to keep up the yogurt, which is pasteurized, since supposedly it's supposed to help with having good gut flora and keeping stools formed, but it isn't doing much.

Sorry that this post is so long. Has anyone else had GI issues after transplant?? Given all of my other medical issues, I really don't want to have to add to the list. Thank you for any advice or encouragement that you may give!

[Yankcg70]

Have they checked u for C Diff? Common hospital infection which reeks have with gi system. My next guess would be the antibiotics. I do not tolerate them well either and have bad issues with diarrhea when taking them. Hope they get u figured out.

[Ladybug_05 in reply to Yankcg70]

I had C diff early on and it was trested. I've come back clear since then. Thank you for the reply.

[Donaldson0007]

Congrats on the transplant! As for the GI issues, yes, terrible issues for a long time all of which the docs blame on the meds. Are you also on prograf? The Drs ended up putting me on pantoprazole (generic prevacid etc) a PPI inhibitor because over the counter was so expensive, about 1.5 yrs post (Im a bit over 3 yrs now) then I added orange metamucil, w/8oz water 1x per day in the afternoon. I did push back on the PPI at first given its link to renal damage, and even tried to get the Drs to adjust my meds down to which they said no. I tried to stop the PPI with bad results. I now finally have normal bathroom habits and the acid reflux is controlled. Good luck and be sure to keep making your Drs work for you!

[Ladybug_05 in reply to Donaldson0007]

Thank you for your reply. I am on pantoprazole and prograf/tacrolimus. I'm trying the metamucil, but it hasn't settled well these last couple of weeks.

[Dna4christ]

Hello. Congratulations! I had GI problems after the transplant and even now it can get pretty sensitive to certain type of foods. Prednisone caused stomach aches and bathroom breaks for me. I also struggled with indigestion for the firet 3 years.. Then, I decided to stop taking all medicines such as famotidine tums for them. Stuck with a tablespoon of red wine and sticky white rice to help with my stomach problems. Now, after 7 years, things are much better and more controllable. Hope things go well for you and it is nothing serious. My nephrologist also wanted to do some kind of tests on my stomach/intestines. It ended in void but recently got a ct scan. all was negative.

[WYOAnne NKF Ambassador]

Oh WOW, does that bring back bad memories. YES, I too had GI issues. I couldn't go anywhere in the morning after taking my meds because of the diarrhea. For me however, I was in a "study". It was 1999 and they were testing a new drug - a new improved version of Cellcept. The study was 6 months long and was a double-blind study. So, I did not know till the study was done whether I was taking Cellcept or the new version. It wound up I was taking Cellcept. I wound up in the hospital on the transplant floor after 2 months. They did a GI work up. Found for me it was the antibiotics and Cellcept.

To this day I do take Myfortic and Neoral. I cannot take the generic form of either drug or it still will cause diarrhea for me. I was on prednisone, but was taken off after a couple of years post transplant. For me at least, it added to my loose stools. I also take Fibercon and a probiotic everyday now. For me, this really helps with the diarrhea I still get once in awhile.

So sorry you have had so many problems since your transplant. All I can say is that it does get better. Remember to work closely with your transplant team! In October it will be 20 years since my transplant. This Saturday, my husband and I are flying to Hawaii for a week.