Anyone with gastroparesis?

Hi all. I have gastroparesis (slow emptying of the stomach). This started when I went into failure in fall 2021, and just after my first and only bout of diverticulitis. I am now even wondering if what I had was that. Anyway, I received a kidney transplant in August 2022 and am doing well except for the gastropatrsis. The gastroparesis diet is exactly opposite to the recommended transplant diet. Plus, I was on several courses of very strong antibiotics for the 1st 3 months, so my microbiome was a mess. I have gotten this sorted with pre and probiotics, but the healthier diet I would prefer to maintain (transplant) is opposite to the one I need. Very frustrating. Anyone have my experience and can offer recommendations? I should mention that I recently got off of Amlodipine which affects the vagus nerve which, in turn, affects stomach motility. I have read contrasting statements about whether such nerve damage can be reversed. I am aiming to reverse the damage. PS. I do not have diabetes and have not been formally evaluated by gastroenterology for gastroparesis. My diagnosis came from one of my nephrologists. And, finally, I do experience nausea and vomiting sometimes daily ir every other day and it does not appear to be due to anti rejection meds.

[LavenderRabbit]

I would recommend going to a gastroenterologist.

[Hidden]

Hi Lavender Rabbit. I was looking into gastroenterology last night. I am dreading all that this entails, but will probably have to submit anyway. Thanks for your feedback.😊

[Gardner-NY]

Hello BlueSkyAngel, I am so very sorry to read about all your medical problems causing intestinal major problems. My spouse had his kidney transplant 11/18 and for 14 months had many major problems but none close to what you describe. So I cannot give you advice except to see a specialist on this specific issue and maybe a dietician. My spouse had a rejection early on, then many blood chemistry problems and CMV and his diabetes worsened and still worse than before transplant. For him , his medications and their side effects has been his #1 challenge after the first 14 months settled down. I wish you all the best on finding help.

[Hidden in reply to Gardner-NY]

Gardner, I am glad your husband is doing well. I think the few times I have posted on here, it has been tp complain and let out my frustrations. My transplant went so well, but immunosuppression led to infection, and antibiotics. It kind of took the wind out of my sail. I appreciate your thoughful feedback and have decided to reach out to my transplant nurse tomorrow to get the ball rolling on this.

[Gardner-NY in reply to Hidden]

Hello, I hope your outreach helps you quickly and works great.

[Hidden in reply to Gardner-NY]

Thanks so much, Gardner!

[Gardner-NY in reply to Hidden]

Very welcome. I tend to be very 'truthful' about things because I feel the medical team we dealt with before the transplant and during were not 100% honest on some things like the medicines and side effects that don't go away. Take care!

[Hidden in reply to Gardner-NY]

Your honesty is much appreciated. The world needs more of you.😊

[Oceansideup]

Agree with Lavender Rabbit. It’s time for a gastroenterologist. You are experiencing gastro symptoms daily, are unhappy with your recommended diet, not to mention your gastro history. On top of having a transplant! Sorry you are dealing with so much. A thorough eval by a gastroenterologist should help address all of your concerns and hopefully reduce your symptoms. Best of luck to you!

[Hidden]

Thank you, Oceansideup, for your feedback! I will be persuing a consultation for evaluation. My present situation is ruining the joy of being transplanted and free from dialysis.

[Blue-Quilter]

I developed gastroparesis about two years after my transplant, and it was related to the med I was on for my type 2 diabetes. I'd been on the med for about 18 months, and it was doing a great job of controlling my blood sugars. (I had been put on two types of insulin (short acting for before meal and long acting overnight) and I was ticked! NO ONE EVER TOLD ME INSULIN WAS EVEN A POSSIBILITY!!!) I was super strict about following the diabetic diet and told them I would get off the insulin, which they didn't believe. Six months after the transplant, they agreed to a trial run at oral meds again.

All was well initially, but after about a year, I developed sever nausea lasting all day, to the point of not eating and barely drinking enough to stay hydrated. At this point they did a gastric emptying study, where you eat some radioactive scrambled eggs, and they x-ray your stomach at set time intervals. At the end of the four hour study, my stomach was still 90% full and it should have been 90% empty!

For the next three months I tried to balance the gastro diet with the diabetic and renal diets -- not an easy task. They wanted me to eat six small meals (snacks, really) each day, and I tried, I really did. But food still made me nauseous, even with the med that was supposed to help with the motility of the stomach. Eventually I settled on a rotation of sorts. One snack would be focused on each diet, all the while trying to find foods common to all three. I landed on chicken and broccoli, although the broccoli was supposed to be well cooked, and that wasn't going to happen because I can't stand mushy vegggies! The other thing I did a lot of was kefir and protein shakes. It wasn't ideal, but it was all I could keep down. At this point I had lost approximately 55 pounds since my transplant.

The nausea eventually escalated to vomiting and not being able to keep my meds down, including the anti-rejection ones. After two trips to the ER in the same week, and losing 10 more pounds, one of the doctors suggested it may be the diabetes med, as nausea was a know side effect. I stopped it and went back on the med I had been on prior to the transplant and the vomiting and nausea "magically" disappeared! Unfortunately, it didn't do as good of a job controlling my blood sugars, so I had to add back in the long acting insulin, though I take it at lunch time now. I'm not happy about it, but I'm finally beginning to feel normal again, and I don't want to jeopardize the kidney, so I'll follow the doctors' orders!

I wish you all the best in finding a solution that works for you. Ask to see a dietician that is familiar with both kidney and gastric issues. There has to be a solution -- it will likely require a bit of research and a lot of tenacity. Best wishes as we start 2023!

[Hidden in reply to Blue-Quilter]

Blue- wow! What you have been through! Holy smokes... Thanks so much for sharing your story. It helps. I was given 500 mg of Prednisone during the transplant and had to wean down from 60mg to my present 5mg daily,post surgery, so there was a period of time that I was ravenous and I really didn't feel the effects of gastroparesis until the past 6 weeks, after having dealt with multiple and concurrent infections. I do not vomit everyday, thankfully. But, I am often nauseous and easily turned off by the smell of food or even the thought of it. I have only lost about 5-6 lbs. I don't know how you managed psychologically. That was a lot to go through, especially after receiving a transplant. Thanks for explaining the study. I wondered how exactly that worked. Once again, thanks for sharing. I am so glad that you are doing better!