Nausea/Stomach Post-transplant

[TaffyTwoshoes27]

I am about 4 months post-transplant. I have been suffering with nausea and stomach issues, along with chronic constipation or, when I take a prescription laxative like Linzess, then I have to stay around the house and have bowel movements constantly all day. I have used miralax, psyllium husks, prunes, fruit, Colace, dulcolax and all sorts of remedies that I've read about.

One of the nephrologists who did an exam of me post transplant gave me a prescription for Zofran. Unfortunately, he only gave me a 30-day supply. When I asked my transplant coordinator for a refill, he said it wasn't usually a transplant medication and said I should get it from my pcp. I was in between pcps, although I have found one now and have an appointment for later this month.

I don't understand why the transplant facility doesn't take into consideration they have put me on 22 tablets of different medications since the transplant and that something in there may be causing this nausea and stomach upset. Why wouldn't they prescribe Zofran? One of my post transplant friends said that it could be gallbladder issues or that I could take pepcid AC prior to eating. Some days I just stay home because I just don't feel well with the nausea and upset stomach. Other than that, my labs are good and I'm getting along fine and, was mowing the lawn (on a riding mower) 7 or 8 weeks after the transplant, etc!

Any suggestions would be appreciated. I have gone through three GI doctors in the last 5 years. They don't seem to understand the correlation between kidney problems and gi problems. They certainly are the most dull of the specialist set of doctors! I just don't know at this juncture how to proceed.

I will certainly mention to new PCP.

[Eyak1971]

Stomach problems due to medication after transplant are typical. I had nausea but not constipation. Mine was the opposite. If you are on pain medication, constipation Will be a side effect. For me it took a while for stomach issues to be resolved. Yogurt and a few probiotics helped. I also had to be persistent like you and went from doctor to doctor to get an answer that worked for me. Keep reaching out and things will get better. I found that some doctor's live in their own little world due to their specialty. And the patient has to become the communicator between doctor's. Take care and keep moving forward.

[TaffyTwoshoes27 in reply to Eyak1971]

Thank you for taking the time to give suggestions!

[Jepsos]

I was put on Prilosec by my transplant team right after my transplant 6 weeks ago, and I drink Kefir Milk (very high in Probiotics) daily.Prior to transplant, I had horrible IBS-D and stomach issues. Post transplant, I’m doing well except for occasional diarrhea.

I think the Prilosec and Probiotics have helped a lot! The antibiotics and antivirals we are on kill our good bacteria/flora. It can really throw off the whole digestive system.

Good luck!

[TaffyTwoshoes27 in reply to Jepsos]

Makes sense! Thanks. I stop the Mepron (anti-viral) next month.

My experience with Probiotics and Prebiotics has been rather unremarkable. (I don’t think they help me). I suspect I have IBS-C but have not been diagnosed with it.

I have always (since being diagnosed with CKD) been very proactive with the doctors! I used to work as a paralegal in a law firm that did medical malpractice cases. If that doesn’t make a person mistrust doctors, nothing will!

Thx again for your input!

[Jepsos in reply to TaffyTwoshoes27]

Try Kefir. It is like yogurt, but has billions of fresh probiotics. Probiotic pills never worked for me either. Kefir does. It comes in yummy yogurt flavors like peach, mixed berry, raspberry, blueberry and plain.

[TaffyTwoshoes27 in reply to Jepsos]

Where can I purchase it? I don’t think I’ve ever seen it at Kroger. Is it in the refrigerator section of the store?

[Jepsos in reply to TaffyTwoshoes27]

Yes, refrigerator section. It’s usually near the yogurt in a tall bottle.

[ILMA54]

First, I am sorry you are having stomach issues. I got my transplant last July. Early on, I would have nausea after eating meals, regardless of how much I ate. Because I underwent a robotic/laparoscopic transplant, I did not have much pain post-transplant. It also means that I did not have constipation associated with pain management.

Post-transplant, I was put on famotidine (Pepcid AC) 2X a day, and I still continue to take the famotidine 2X a day. This keeps my nausea at bay. That said, I still routinely have loose stools if I am eating a vegetable-rich diet.

I have not taken Zofran, but I had a similar experience with Cincalcet. Prior to my transplant, my PTH was running ~ 600. Post-transplant, it dropped to ~ 200 but was still high. They had me go see an otylarnygologist about potentially removing my parathyroid, but she was concerned that since I was post-transplant, it was not clear how much of the parathyroid to remove, and if removed too much, I would spend the rest of my life on meds to make up for a lack of a parathyroid.

I mention all of this because what they had me do was start . Cincalet, which insurance would not approve pre-transplant (it is usually only approve for people on dialysis). That has helped lower my PTH (though it is still high). When I asked them to refill it, they also referred me to my primary doctor as this was not related to the transplant. As a result, the only meds I get refilled by the Specialty Pharmacy are those associated with my transplant. This includes tamsulosin, prednisone, Myfortic, Bactrim (for 1 more month), enteric aspirin, famotidine, and carvedilol). I could get my carvedilol from my PCP, but I choose to get it from the Specialty Pharmacy since they are monitoring my BP so closely.

Good luck with your new PCP.

[TaffyTwoshoes27]

Thanks for your input. I found some generic Pepcid AC in my pill box and started it yesterday. I think it is working! But, I still ended up taking a Trulance about 3 pm. I usually would rather take that med earlier cuz there are multiple trips to the potty!

I was put BACK on Sensipar/Cinacalcet on Saturday. When on PD dialysis, I was constantly on Sensipar b/c of high Parathyroid. This time, post-transplant, they are trying to manage my high calcium. It is already coming down! Amazingly, one year when on PD and trying to get the Sensipar from my dialysis clinic RX, Humana had a problem like you described (prior authorization and a high co-pay). I paid $10.10 on Saturday for 30 of the 30 mg Cinacalcet (no prior authorization). Unbelievable. I remember the Social Workers at the dialysis clinics were in a panic b/c every State in the U.S. was having the same problem with Humana and Sensipar!

I was diagnosed with diverticulosis during transplant evaluation. Maybe it has become worse and is now diverticulitis. My brother has it and he says he gets “flare-ups” when the diverticulitis pockets are inflamed (certain foods do that).

Thanks again for the input. I haven’t taken any pain meds since I left the hospital on Jan 29.

I’m really drinking the water. I thot I’d never get to 64 oz. On Saturday at the hospital’s Outpatient Diagnostic Center for weekly blood draw, the Phlebotomist said I need to drink MORE! I feel like I’m floating as it is!

I’ll bite the bullet and go to a GI doctor. I am due a colonoscopy with Medicare in July, so I’ll ask the nephrologist if that is ok since that will be my 6th month post-transplant.

[Eyak1971]

When you do have colonoscopy make sure you are given solution that is special for transplant patients. My was not covered by insurance but treatment center gave it to me and included it into surgery treatment. I didn't have mine until more than year after transplant with doctor ok.

[TaffyTwoshoes27 in reply to Eyak1971]

Thanks for the heads up!

[Parkerbarker]

I wish they would test myofortic levels more as this is the big gi upset drug and as they never or rarely test trough levels im sure they are giving 2 high of doses.Mine was finally cut back and now only have issues once a week depending on what i ate.