Post transplant GI problems for 6 months

[JackieShan]

Hi, I am seeking advice. First transplant 1998 - on cyclosporine and azathiaprine (and prednisalone for first few years) - no significant side effects except anaemia. Second transplant 2019 February - on Tacrolimus 8mg, Myfortic 360mg twice daily, and prednisalone 5mg. Also, still on antibiotic co-trimoxazole for a few days (until 6 month point). Have had stomach cramps, diarrhoea, bloated stomach for 6 months now. Originally on MMF but changed to Myfortic because of these issues, but still not resolved. Had stool test and nothing inflammatory going on. Have hardly been out because of these issues, even missed a couple of transplant clinic appointments. Have tried gluten free, dairy free, meat free diet - nothing helps. I know that these problems are common. Please may I ask did they eventually resolve without any treatment or change in Meds, or did others change meds? Any advice very welcome. Thanks.

[Santaponsa1]

Hi. I can empathise with you for I had GI problems now nearly two years on and I'm 3/1/2 years post op. I've had every test known to man which thankfully was clear,however last weekend I was at my lowest, took very ill, admitted to hospital to have my full U&E's replaced as it started affecting my renal function ( first ever) and disappointing was an understatement. I saw two gastreologists and very little support or real advice. Saw another doc prior to discharge on Saturday there and hey presto, diagnosed chronic IBS and prescribed medication for same ( first in nearly two years) with poor diet,weight loss,etc before above was confirmed. Now can get my life back again, eat and go out without having the fear of a flare up. See doc on Thursday for bloods hoping all still stable 🙏🏻 Really hope you get the proper help that I finally got and get your life back in order and live normal again. Good luck and take care.

[JackieShan in reply to Santaponsa1]

Hi, thank you so much for replying. What anti-rejection meds are you on, and have they been changed at all since transplant? Also, what meds have they prescribed for you for the IBS? I really hope that you start to feel much better soon; please keep me posted as to whether you do. Thanks again, Jackie.

[Santaponsa1 in reply to JackieShan]

Only change renal docs done was change me to one Myfortic 360 per day am & pm - Also On 2.5 prograf am&rpm (tac) Always been on 5mg of prednisolone,ranitidine - both 1 x daily (am)

New meds for diahorrea loperamide 3xdaily) more if need be and mebeverine hydrochloride 135mg -one 20mins prior to each meal ( breakfast, Lunch and dinner and will be reviewed if required re increase if diahorrea continues which is fine with me. I can cope better now knowing everything I eat isn't going straight back through me. I do drink about six pints of water daily and have done since receiving my transplant. Always look after myself the best I can do. I don't drink or smoke, so they can't ask for anymore than that andalways kept well up until recent illness so hoping nightmare over 🙏🏻

Take Care

[JackieShan in reply to Santaponsa1]

Thank you for replying again. I am so sorry that you have suffered so much from for so long, but hopefully that is now at an end. Have things improved since taking the ibs meds? My meds are similar to yours: Myfortic 360mg twice daily, 5mg prednisalone daily, 8mg Advagraf (tac). I am going to ask my doctors about the ibs meds that you mentioned; thank you so much for your advice. Take care and please keep me posted about your progress. Jackie.

[Santaponsa1 in reply to JackieShan]

Thank you Jackie will do.

[JackieShan in reply to Santaponsa1]

Hi Santaponsa, I hope that are feeling well. I just wondered whether the ibs medications have worked and that you are now GI issues free? I do hope so. Best wishes, Jackie.

[Santaponsa1 in reply to JackieShan]

Good morning Jackie, not really as such as still have terrible flare ups which I'm disappointed with, however see another gastrologist week today hoping he'll come up with answers. Still struggling to put weight on though ( any ideas) and I do attend a dietician, however not really getting anywhere there,unfortunately. I'm desperate to put my weight back on (2st) lost over nearly two years since taking GI. Again depending what I eat can flare things up, vicious circle comes to mind,but just need to plod on I suppose. Hope your well Jacki and thank you for asking.

[JackieShan in reply to Santaponsa1]

Hello again Santaponsa. How are you feeling now? I really hope that you are feeling better. Best wishes, Jackie.

[Santaponsa1 in reply to JackieShan]

Hey was back in hospital due to persistent problem due to my salt levels etc neeeding topped up, was so unwell,Myfortic now stopped completely following same. Putting me on another one in couple weeks or staying on an increased dosed prednisolone. Feel a lot better again. Working on weight gain now🙏🏻 So keeping positive. Hope things settled down for you too and thanks again jackie.

[JackieShan in reply to Santaponsa1]

Hey, I must have missed your last reply! So sorry! How are you now? Did symptoms change after stopping Myfortic? What meds are you on now? I hope that you are feeling better now, Jackie.

[Santaponsa1 in reply to JackieShan]

Hey Jackie no problem. I'm still having terrible flare ups every 3rd day. I'm still off immune suppressant now over four month and increased my pred to10mg from 5 daily. Still on tac and now thinking it might be that that's causing it for read on side affects it causes prolong diahorrea 🙁I note below someone was on tac too and their off it now and it's helped. I've had every test known to man and thank god there all clear, however my renal consultant now wanting more bloods to check if it's a BK virus,antibodies, function as it's been affected lately due to the above. At moment my creatin is sitting at 114 and GFR 44 which is high for me and GFR lower, once above checked out she's then talking about a transplant biopsy to see if showing any signs of rejection which I hope and pray not🙏🏻 I have had these bloods done already and been okay...I'm struggling to increase my weight too,just awful, however remaining positive as nothing else for it Jackie. Thanks again for asking

[Hidden]

Hello. I am about 3 and a half years post transplant. I was taking Tac in the beginning, and had constant diarreah. They changed my Tac to Envarsus which helped. I have no problems with it, and it is time release. Easier on the stomach. I hope you feel better.

[Santaponsa1 in reply to Hidden]

Thanks for response. I've been on tac now 4 years and I'm beginning to wonder if it's that too as off my immune suppressants and still ongoing problem and was going to ask for slow release and a change of same. It's trial and error re Meds really, however I did mention side affect from this and doc kinda ignored me, so not sure now....

[Hidden in reply to Santaponsa1]

I can't believe your doctor ignored you. Might be because if your levels are good, I guess they don't like to change your meds. The Envarsus was a life changer for me. The Tac always had me running to the bathroom. I would ask the doctor again, if they don't help you I would try to see another. Best of luck. Let me know how you make out.

[Santaponsa1 in reply to Hidden]

Thank you. My creatin is sitting at 114 which is high for me and GFR 44 which is low so not sure if their apprehensive about changing due to change of function and off MMF. Their Checking this again next week via community phlembotamist. I go back to clinic 17th Dec so let you know outcome re same. My problem re running to loo started two years ago ( soul destroying) and I'm now 4yrs post op 3rd Dec. Can I ask you what your function reads and changing to new med help you re function.....

[Hidden in reply to Santaponsa1]

I will be 4 yrs in February, and for a while my Tac levels went up and down with the Envarsis. I wasn't the most stable person with the Tac levels, but my creatinine is always pretty good. My levels were fine with the Tac, it just made me run to the bathroom. Now I think my last level for Creatinine was 0.8? That doesn't mean it will be so good next time. I have a cold, so I have to do labs soon to see how it is. Creatinine is different every time. I think, it was 1.13 the last time before this? I do know that meds can raise the creatinine, but I am not a doctor.