Help !! T2D and suddenly Chronic Kidney Disease

[Rosie9876]

Over a year and a half ago, I went to A&E in extreme pain, and was found to have kidney stones in BOTH kidneys, one a 5 cms staghorn stone and the other kidney with 2 stones about 2 cms each. This would entail a series of operations. They admitted me for immediate surgery, but cancelled it last minute. Then as it was deemed stable and my kidneys were healthy, surgery was judged routine, not "urgent". I just had repeated CT scans and blood tests, supposedly confirming no urgency.

Finally I had my first surgery in March 2025 and a second, less major, operation in April. After my first surgery, I had a huge amount of blood in my urine and other abnormal test results, but as I wasn't called in about it, I wasn't unduly worried. However, I've also had symptoms of urinary infection, so my GP had blood and urine tests done.

Both before and after a course of antibiotics, I tested negative for bacterial infection despite my symptoms continuing, which baffled my GP. But I have severely abnormal readings for blood and albumin in my urine, and Chronic Kidney Disease has been diagnosed.

I can't begin to express how upsetting this is, as my kidneys had been healthy. I had got my diabetes under control with a low carb high-ish - not too high - protein diet. Glucose was going a bit off the rails recently, which baffled me, but now I wonder if it's due to these other health issues. A diet for kidney disease is the opposite of that for diabetes, so I don't know how I will manage, especially as I am not overweight. I am due to have further surgery over the summer, but worry that the surgery is actually damaging my kidneys. I am trying to remain positive, but thoughts and advice welcome.

 

[Melgar]

@Rosie9876 I am not able to offer anything other than to say what a horrible time you have had dealing with on going kidney issues and the pain you must have been in. I hope this gets get resolved and your medical team is on it.

 

[Antje77]

I thankfully don't know too much about kidney stones or CKD (knocks wood), but I'm tagging @JoKalsbeek who did a lot of research on kidney stones and other kidney issues, and @Grant_Vicat and @Ushthetaff who both have experience with CKD.

Wish you all the best, hopefully this is a temporary problem!

 

[Rosie9876]

@Rosie9876 I am not able to offer anything other than to say what a horrible time you have had dealing with on going kidney issues and the pain you must have been in. I hope this gets get resolved and your medical team is on it.

Thank you for your kind wishes. I am hoping that some with experience of both diabetes and CKD can share their experience, and how they reconcile seemingly incompatible dietary requirements.

 

[Grant_Vicat]

@Rosie9876 First of all I completely understand your fears. It is impossible for me to begin to guess what the true position is, and even if I could I would not be allowed to offer a course of action. However, I can say that the word Chronic doesn't help. There are four stages of CKD. I started Stage 1 in 1973. In 2007 I had kidney stones in my left kidney, was given Cocodamol and passed them out after 24 hours. By that time I was at what is now called Stage 3a. It was not until 2012 that I reached Stage 3b and therefore had a kidney (and pancreas) transplant in 2013. In 2000 I was put on a low phosphate diet.
Have you been referred to a nephrologist? I would ask their advice before going on to punitive diets. The first real food I ate after the transplant was a Magnum Classic from the hospital shop. Having had no ice cream or chocolate for 13 years meant this was nectar! If you are anxious to know what foods are better, then I would suggest you look at this site: https://www.leedsth.nhs.uk/patients/resources/low-phosphate-diet/ I hope your fears proove to be unfounded. Good luck

 

[Rosie9876]

I thankfully don't know too much about kidney stones or CKD (knocks wood), but I'm tagging @JoKalsbeek who did a lot of research on kidney stones and other kidney issues, and @Grant_Vicat and @Ushthetaff who both have experience with CKD.

Wish you all the best, hopefully this is a temporary problem!

Thank you so much. They say unfortunately CKD is not reversible. I can only hope for the best on my kidney stone surgery to come and to contain the CKD. I've been working on improving my A1c - last test a disappointing 57, but better than where I started from and I'm not giving up.

 

[JoKalsbeek]

Over a year and a half ago, I went to A&E in extreme pain, and was found to have kidney stones in BOTH kidneys, one a 5 cms staghorn stone and the other kidney with 2 stones about 2 cms each. This would entail a series of operations. They admitted me for immediate surgery, but cancelled it last minute. Then as it was deemed stable and my kidneys were healthy, surgery was judged routine, not "urgent". I just had repeated CT scans and blood tests, supposedly confirming no urgency.

Finally I had my first surgery in March 2025 and a second, less major, operation in April. After my first surgery, I had a huge amount of blood in my urine and other abnormal test results, but as I wasn't called in about it, I wasn't unduly worried. However, I've also had symptoms of urinary infection, so my GP had blood and urine tests done.

Both before and after a course of antibiotics, I tested negative for bacterial infection despite my symptoms continuing, which baffled my GP. But I have severely abnormal readings for blood and albumin in my urine, and Chronic Kidney Disease has been diagnosed.

I can't begin to express how upsetting this is, as my kidneys had been healthy. I had got my diabetes under control with a low carb high-ish - not too high - protein diet. Glucose was going a bit off the rails recently, which baffled me, but now I wonder if it's due to these other health issues. A diet for kidney disease is the opposite of that for diabetes, so I don't know how I will manage, especially as I am not overweight. I am due to have further surgery over the summer, but worry that the surgery is actually damaging my kidneys. I am trying to remain positive, but thoughts and advice welcome.

Do you happen to know what the stones consisted of? Staghorns are supposed to be the result of repeated UTI's, and quite often that means they're struvite stones (Ureum build-ups, really). If that happened because of high blood sugars over the years before you got blood glucose control giving you UTI's, and that is mostly tackled, it might not reform. If your other "regular" stones are struvite too, you might be able to manage avoiding them with sodium bicarb (taken two hours after a meal, as it makes your stomach less acidic and it'd be nice if your food still got processed beforehand), and drinking water with lemon in. (As per my own nephrologist's advice). But all that's going on the assumption that you're dealing with ureum/struvite formations, not calcium-oxalate stones, which are more common. So you really should see whether you can find out what kind of stones you've got, as there's quite a few different types. Oxalates show up in plants, they're their natural defence system. So if you eat oxalate-high foods, like spinach, you should always have something like cheese or cream with it. Oxalates bind with calcium. And if you eat something with calcium to go with it -in lieu of just forgoing oxalate-rich foods entirely- it binds in the stomach and passes out through the bowel. Otherwise it'll just find something to bind with in your kidney, where it gets stuck as a stone.

I had my biggest stone to date (I have lots and lots of ureum stones), shattered via sonic shock. Still was unpleasant to pass as the little shards were quite sharp as they went out, but most of it was just sludge that came out in the space of two uncomfortable weeks. So when I went back because another stone was bothering me, which seemed too large to pass, and I was having (and still having) frequent kidney bleeds, the bloke I saw then told me I was too young to have that treatment repeated, because the shattering process damages kidneys and I'm going to need mine to be functional for quite a while yet. (I'm 46, and the stone is still in there, since it started bugging me last december). It's a relatively small, local proceidure, and yet they are *still* concerned about doing it again! I am assuming your surgeries were seriously more invasive than that, and with continued bleeds afterwards... But if you are now stable, and nothing else is making things steadily, increasingly worse, I wouldn't worry too much. Just eat sensibly, as you know why your kidneys aren't functioning as they were, and they'll have another blow coming when your next surgery happens, and adjust your diet to the kind of stones you're likely to produce. If oxalates are a problem, find out what high oxalate foods are and avoid those as much as you can. (https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2022/06/Oxalate-Foods-2022.pdf is one of many lists that can be found online). If ureum is an issue, be extra careful with red meats and other animal proteins, and consider sodium bicarb or discuss Allopurinol or somesuch with your doc: they'll know whether it'll suit your situation. If the surgeries for your stones were the problem, I think you'd be helped considerably if you knew that sort you're prone to, so you can avoid further stones and proceidures in the future, aside from the one already planned.

I think, basically, a long, detailled talk with your specialist could be useful. And maybe some puzzling things out with a dietician who knows about both kidney problems and diabetes. It's very difficult to find some sort of equilibrium -I'm still struggling with it, too, because of the T2 in the mix- but things might just be manageable if you have more information to go on.

Hang in there, eh.
Jo

 

[Ushthetaff]

Even though I’m on dialysis I’ve never had kidney stones mainly due to the fact I contracted sepsis after I had my leg amputated , you don’t say what your kidney function % is, that tells you if have to go on dialysis or not . Here in Scotland you don’t go on dialysis until your function is below 10% . I didn’t feel any different til I was below 10 % I was a gym 5 times a week with a function of 13% so having kidney stones doesn’t mean that your kidneys are shot , I had a friend who had stones but didn’t have kidney failure I think he had to stop certain things with regard diet and as far as I know he’s fine

 

[Rosie9876]

Even though I’m on dialysis I’ve never had kidney stones mainly due to the fact I contracted sepsis after I had my leg amputated , you don’t say what your kidney function % is, that tells you if have to go on dialysis or not . Here in Scotland you don’t go on dialysis until your function is below 10% . I didn’t feel any different til I was below 10 % I was a gym 5 times a week with a function of 13% so having kidney stones doesn’t mean that your kidneys are shot , I had a friend who had stones but didn’t have kidney failure I think he had to stop certain things with regard diet and as far as I know he’s fine

Wow, you've been through the wringer with sepsis and all, but I love your attitude.

Mine is Stage 3a. It was the suddenness of dropping from healthy (tested repeatedly over the months because of the stones). Also bleeding, burning pain, etc. and the conflicting demands of a CKD and Type 2 diabetes diet - (CKD low protein, low fat vs diabetes high protein moderate fat, above all low carbs). I have to think there was injury from the surgeries performed on my right kidney to remove the stone, and I am due to have surgery on the left kidney. But thank you for positive vibes. I will try to take them with me into treatment.

 

[Rosie9876]

Do you happen to know what the stones consisted of? Staghorns are supposed to be the result of repeated UTI's, and quite often that means they're struvite stones (Ureum build-ups, really). If that happened because of high blood sugars over the years before you got blood glucose control giving you UTI's, and that is mostly tackled, it might not reform. If your other "regular" stones are struvite too, you might be able to manage avoiding them with sodium bicarb (taken two hours after a meal, as it makes your stomach less acidic and it'd be nice if your food still got processed beforehand), and drinking water with lemon in. (As per my own nephrologist's advice). But all that's going on the assumption that you're dealing with ureum/struvite formations, not calcium-oxalate stones, which are more common. So you really should see whether you can find out what kind of stones you've got, as there's quite a few different types. Oxalates show up in plants, they're their natural defence system. So if you eat oxalate-high foods, like spinach, you should always have something like cheese or cream with it. Oxalates bind with calcium. And if you eat something with calcium to go with it -in lieu of just forgoing oxalate-rich foods entirely- it binds in the stomach and passes out through the bowel. Otherwise it'll just find something to bind with in your kidney, where it gets stuck as a stone.

I had my biggest stone to date (I have lots and lots of ureum stones), shattered via sonic shock. Still was unpleasant to pass as the little shards were quite sharp as they went out, but most of it was just sludge that came out in the space of two uncomfortable weeks. So when I went back because another stone was bothering me, which seemed too large to pass, and I was having (and still having) frequent kidney bleeds, the bloke I saw then told me I was too young to have that treatment repeated, because the shattering process damages kidneys and I'm going to need mine to be functional for quite a while yet. (I'm 46, and the stone is still in there, since it started bugging me last december). It's a relatively small, local proceidure, and yet they are *still* concerned about doing it again! I am assuming your surgeries were seriously more invasive than that, and with continued bleeds afterwards... But if you are now stable, and nothing else is making things steadily, increasingly worse, I wouldn't worry too much. Just eat sensibly, as you know why your kidneys aren't functioning as they were, and they'll have another blow coming when your next surgery happens, and adjust your diet to the kind of stones you're likely to produce. If oxalates are a problem, find out what high oxalate foods are and avoid those as much as you can. (https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2022/06/Oxalate-Foods-2022.pdf is one of many lists that can be found online). If ureum is an issue, be extra careful with red meats and other animal proteins, and consider sodium bicarb or discuss Allopurinol or somesuch with your doc: they'll know whether it'll suit your situation. If the surgeries for your stones were the problem, I think you'd be helped considerably if you knew that sort you're prone to, so you can avoid further stones and proceidures in the future, aside from the one already planned.

I think, basically, a long, detailled talk with your specialist could be useful. And maybe some puzzling things out with a dietician who knows about both kidney problems and diabetes. It's very difficult to find some sort of equilibrium -I'm still struggling with it, too, because of the T2 in the mix- but things might just be manageable if you have more information to go on.

Hang in there, eh.
Jo

The stones are uric acid with a small percentage of calcium oxalate. I was told to get off a high meat diet, which is ironic because I am the opposite, although did go higher protein to reduce my carbs and lower my HbA1c - still almost no meat. Then consultant told me the diabetes makes my urine acidic. I have been drinking lemon water, also taking potassium citrate tablets. Certain foods like spinach and beetroot are out (loved them - always did have spinach with cheese or yoghurt). Lots of food is out and I'm very confused about the conflicting demands of a diabetes vs. a CKD diet. I am not overweight, so can't benefit from losing some, although I've inadvertently lost a bit. I suspect I have a lot of visceral fat, although we can't get tested for that on the NHS. Taking sodium bicarb is new to me. I will ask about. it.

My first surgery was PCNL which involved 2 little holes drilled from my back to access my kidney. That resulted in a lot of bleeding and a lot of pain. I was in hospital for a week. A second surgery was to remove the remaining stones in that same kidney. That was a uteroscopy, passing a long thin telescope through the urethra, bladder and ureter into the kidney. Also blood and pain peeing, not as bad, but may have caused an injury or infection to the urinary tract. A PCNL is planned for the other kidney, but might have a series of less invasive ops instead.

I am sorry to hear about your stone. They are a pain. I hope it gets resolved, best by breaking up naturally and passing, but otherwise I guess a uteroscopy. Thank you so much for your detailed response. It is very comforting and I really appreciate it. I'm trying to hang in.

 

[Rosie9876]

Over a year and a half ago, I went to A&E in extreme pain, and was found to have kidney stones in BOTH kidneys, one a 5 cms staghorn stone and the other kidney with 2 stones about 2 cms each. This would entail a series of operations. They admitted me for immediate surgery, but cancelled it last minute. Then as it was deemed stable and my kidneys were healthy, surgery was judged routine, not "urgent". I just had repeated CT scans and blood tests, supposedly confirming no urgency.

Finally I had my first surgery in March 2025 and a second, less major, operation in April. After my first surgery, I had a huge amount of blood in my urine and other abnormal test results, but as I wasn't called in about it, I wasn't unduly worried. However, I've also had symptoms of urinary infection, so my GP had blood and urine tests done.

Both before and after a course of antibiotics, I tested negative for bacterial infection despite my symptoms continuing, which baffled my GP. But I have severely abnormal readings for blood and albumin in my urine, and Chronic Kidney Disease has been diagnosed.

I can't begin to express how upsetting this is, as my kidneys had been healthy. I had got my diabetes under control with a low carb high-ish - not too high - protein diet. Glucose was going a bit off the rails recently, which baffled me, but now I wonder if it's due to these other health issues. A diet for kidney disease is the opposite of that for diabetes, so I don't know how I will manage, especially as I am not overweight. I am due to have further surgery over the summer, but worry that the surgery is actually damaging my kidneys. I am trying to remain positive, but thoughts and advice welcome.

Update to all the kind peeps who were so helpful and comforting in their replies to this post. My doctor just phoned me. They did repeat blood tests. Results show improvement, suggesting it's not Chronic Kidney Disease, but injury from my two surgeries, which are healing with time. What a relief! Still I am glad to have learned so much about kidney disease and am mindful of protecting my kidneys. Diabetes is a risk factor and damage is not reversable.