3 months post kidney transplant question

[Loveoflife]

My husband is 3 months post kidney transplant. He is experiencing severe gut issues. Can he take probiotics, Vitamins like fish oil, Turmeric and add more fiber into diet? Regular doctors are not offering ANY assistance. H. pylori and BK came back negative. He is nauseous, gassy and has lost over 25 lbs. I am desperate.

[Okiksaints1955]

Just a note that this what we share on this forum is based on our experiences and what we researched - we are not kidney management experts. We always refer to our Nephrologist for medication - only they can provide holistic kidney management support (unless you don't trust them).

Years into post transplant, I still experience gut problem. My Kidney Mgmt Team ( mainly my gastrointestinal doctor and approved my nephrologist) prescribes Omeprazole. It works for me and helps me a lot (I take it off and on )

Hope this helps

[Loveoflife in reply to Okiksaints1955]

Thank you so much.

[Winner76]

I wasn’t allowed to take probiotics for the first year post transplant. I suffered with my gut since the transplant and 3 years post I’ve been diagnosed with ulcerative colitis 😞 I’m sure your husband is not that bad and a doctor can prescribe tablets to ease the gut. Anything else he might want to take needs to be said to the doctors , especially that he’s in the first year.

Best wishes

[Darlenia]

Always ask for approval directly from your transplant team. My hubby takes supplements - some at full dose, others at half dose. His transplant team has pharmacists that deal specifically with drug interactions. His team requires a picture of the product my hubby is interested in taking along with the dosage and ingredient list.

We clear everything with our center. Recently, the center asked his dentist to use a different antibiotic following a dental procedure. Also, I know a guy with a kidney transplant who lost his life in a matter of days after he took a med for toenail fungus prescribed by an Urgent Care. So we're very careful about all meds and supplements. Your center may have provided you with a listing of prescreened meds and supplements that are okay to take. Our listing is in a notebook given to us when my hubby was discharged. We only see the center twice a year, but the center asked us to reach out anytime we have questions. They're there for us for the life of the transplant.

[ShyeLoverDoctor]

I ask my nephrologist before I take anything. My cardiologist wanted to give me a new blood pressure medicine but I wouldn’t take it before I checked with my nephrologist. I also visited an urgent care once, pre-transplant but stage 4, and they gave me an antibiotic. I called my nephrologist a couple days later and he said, They gave you the wrong one!

Having said that, when I was receiving IV antibiotics, they said it was ok for me to take floristor. Absolutely everyone’s case is different.

Do not take anything over the counter before checking with your nephrologist or transplant center. Over the counter does not mean harmless to all of use.

[WYOAnne NKF Ambassador]

You need to talk with your transplant center regarding the symptoms he is having. Everyone starts at a certain dose of immunosuppressants and it could be that it is too high for him.

I had diarrhea everyday after my transplant. Felt pretty miserable too, because it was dehydrating me. My doctors reduced my dose. It helped for awhile but the GI symptoms continued. Finally found out that I was having a reaction to the generic form of my drugs. I take name brand Neoral (cyclosporine) and Myfortic (mycophenolate acid) now. Doctors can order name brand only from the pharmacy.

So, I guess my point is they can do things with his medications that can help. Some people even need to switch to a different immunosuppressant.

Please remember that all meds, even over-the-counter medications need to get the AOK from your nephrologist/transplant center. Everything needs to go through the center. There are things that you don't need a RX for, that can be contraindicated because of his other meds.

I am 23+ years post transplant and still check with my nephrologist before I take anything.

[LisaSnow]

Please do not give your husband tumeric. It is a well known contraindication for people taking immunosuppressive medications.

[6821green]

I am 2 years post-transplant, and my GI issues were very similar to the post made on this this thread by WYOAnne. My symptoms started 5 months after transplant. At first, the transplant team lowered the Mycophenolate Motefil from 750 mg twice daily to 500 mg at the 6 month mark. The team also thought when I stopped the Bactrim regimen, the GI issues ease. They did not. They only increased over time. The only other transplant medication I take is Tacrolimus. As the months went by, the symptoms became more frequent. Pain increased in intensity. Bloating and gas were also uncomfortable issues. I tried many diet modifications, including following the FODMAP diet, at the suggestion of my GYN. Nothing was working. I am allergic to PPIs. Unfortunately, when I questioned a nephrologist on my post-transplant team about the GI side effects of MMF over a year ago, I was told this drug was not the cause. I reached out to my local nephrologist who had treated me pre-transplant for advice and support. His suggestion was that I ask to be switched to the enteric coated, slow release form of MMF, Myfortic. Again, my team doctor refused to change the prescription. After 18 months of suffering, the adverse GI symptoms were truly affecting my quality of life. At my second anniversary check up in June, I saw a different nephrologist. After requesting to change to Myfortic, he agreed easily to support my request. It has taken me about a month, but the new medicine has been a miracle for me. I know the MMF did some damage, but I have yet to have that confirmed with a GI specialist. The most frustrating part was how long it took to convince a doctor to listen to me. It was also disappointing the team did not put this together sooner. There is a ton of medical evidence out there linking this class of immunosuppressant drugs to devastating GI side effects. Be your own advocate and fight hard to find the answers. Yes, there is a new set of health issues you face after surgery. It takes time for your body to adjust to the new medications. Yes, be patient, but on the other hand, if your cure could just be change in dosage or a different medicine, do not be afraid to make suggestions/requests to your team. Be your own advocate. Get fully educated on all of the medications you take. You know your body better than anyone else. I wish you all of the best in your healing. It is so wonderful to receive an amazing gift of life with a new kidney. You need not to suffer unnecessarily.

[Loveoflife in reply to 6821green]

Thank you for your words of hope. My husband now in the first three months has been switched from Cell Cept to Myfortic to now Azathiopine 150mg. I will keep fighting and being an advocate. FYI, he has my kidney

[6821green in reply to Loveoflife]

You are most welcome. Many on this site have been so helpful to me, and I pray for complete healing for your husband. What a blessing you were a match and could give life to him by "sharing your spare." I have also found that eating clean and drinking filtered water keeps my GI issues at bay. Excessive sugars and carbs will irritate and increase symptoms. The best advice we received from a dear friend,( who ,BTW, had also received his wife's kidney) was to be patient and let time do its job. Transplant is truly a precious gift, but can also be a wild roller-coaster ride! Best to both of you.

[Camppy3]

They told me to call if I lost more than 2lbs in 1day. Ask his Transplant Coordinator,Nephrologist,Pharmacist at transplant Hospital.

[Palmtreeguy]

My transplant team has directed me to take a probiotic DAILY for the past 18 months.

[Parkerbarker]

I feel you worst 2 months as drugs irritated ibs.i usedcbuscopan and loprimine and weirdly found that the one 360mg tablet of mytofortic caused more issues then 2 of the 180 tablets instead.

[Jamok in reply to Parkerbarker]

perhaps the difference is, the 360 tablets have red dye versus white for the smaller strength ones.

[Parkerbarker in reply to Jamok]

Maybe,i react to everything so yeah like even going from brand to a generic drug once gave me a whole bunch of side effects.

[Bert64]

Yes, it’s perfectly fine, I drink Keifer, it’s like drinking yogurt, it’s full of beneficial bacteria.

[Roxylulu]

My husband is 6 months post transplant. His transplant team did not want him taking any sort of probiotic. No kefir, kombucha, or probiotics. They did prescribe him a medication sort of like Prilosec (I cannot remember the name) to ease any stomach issues resulting from the antirejections. His worst days are when they take a fasting blood sugar at labs and he needs to take the bulk of his meds (minus the Tac) on an empty stomach.

[Jayhawker in reply to Roxylulu]

I am taking Protonix which sounds like the medication you mention. It has kept my ins in check other than when I had a mild case of cmv. At that point I had gas and a little trouble with loose stools. As the cmv was brought back in check the mild IBS symptoms went away. But I’ve been eating foods that are easier to digest specifically due to my IBS and these rejection meds.

Jayhawker

[littlelinda50]

Sorry his transplant team is not doing anything about that. If you have a transplant coordinator talk to them or demand to see a GI doctor. I take acidophilus, a fiber gummie that's also a probiotic, fish oil and a muti vitamin. I do my best to stay away from turmeric. I also drink a super greens shake I make everyday. I had to have my gallbladder removed in February. My best advice is to keep letting them know of his issues even if you have to call the transplant center every day tell they direct you to the right person.

[Jamok in reply to littlelinda50]

Can I ask what your symptoms were when you were having gallbladder issues post transplant?

[littlelinda50 in reply to Jamok]

I would throw up after eating and had pain that when from middle of back to just below my sternum.

[Jamok in reply to littlelinda50]

Thanks, sounds miserable.

I get a bit of pain under my right rib cage but not the other symptoms so far.

[littlelinda50 in reply to Jamok]

My advice is get checked out for gallbladder issues. I was able to have robotic surgery and healed quickly. They just did an ultrasound to find my stones. My bf had slug in his gallbladder and his pain was like yours. He had his removed and was driving the next day.

[Jamok in reply to littlelinda50]

I will definitely get it checked out. Thank you!