I had Jpouch in 1996 and am now having problems with acute renal failure. Has any other long timer having anything similar? I was wondering if it was the chronic long term dehydration we have from not having our colon to reabsorb fluids
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I am commenting on this because I want to receive notifications when other people answer your question. I am curious about this connection as well. Thanks for asking the question and I'm sorry about the kidneys giving out.
Acute renal failure is generally from a fairly rapid process. Extreme dehydration can certainly do it, but chronic long-term dehydration would likely cause different problems. J-pouchers can certainly become dehydrated if not careful, but most are not chronically dehydrated.
I also suspect that a J-Pouch might accelerate the loss of kidney function with age. I got my J-pouch in 1986, at age 42. I became aware that I had chronic kidney disease (CKD) 24 years later, when my eGFR value was down to 60 (85 would have been normal for that age). I am now 79 years old, eGFR in the 20’s, and approaching end-stage CKD. There is no kidney disease in my family history, and my nephrologist doesn’t know the cause of my CKD- so perhaps my J-pouch is the cause.
I disagree with the commentor who said that acute renal failure is a fairly rapid process. Sometimes it is, sometimes it isn’t. The colon is responsible for removing a significant fraction of the water in stools, and that removed water is flushed out via the kidneys. As a result, people with a J-pouch have a somewhat-reduced urine output, and potentially that has a long-term detrimental effect on their kidneys. If this is the case, then conscientiously drinking more fluids might be beneficial in the long term. (In fact, dapagliflozin AKA Farxiga, which is used to slow the rate of progression of CKD, causes a significant increase in urine output).
It would be interesting to collect data on J-pouch users’ eGFR values. The National Kidney Foundation (Estimated Glomerular Filtration Rate (eGFR) | National Kidney Foundation) has a table with average eGFR values vs age. Here are some representative age/eGFR values: 25/116, 35/107, 45/99, 55/93, 65/85, 75/75.
It would be interesting to poll j-pouch.org members who have recent lab test results to get their age and eGFR value, along with the years since their J-pouch surgery. If we could get a representative sample, that would answer the question.
From my last metabolic this fall (I'm 55 and have had the pouch 20 years) this was what was written:
| eGFR: |
|
Seems low for my age according to your chart. So maybe I should drink more water.
There is also this chart:
I went and looked at all my old metabolic panels before 2023 and they all just say that it's >60 mL/min/1.73m^2 . Not very helpful.
Sara, I would suggest you discuss this with your GP. If they do diagnose CKD, discuss Farxiga- it looks like it can cut the progression rate of CKD in half.
Best wishes.
I agree that my urine output has decreased since I got a j-pouch. But I also have to deal with chronic pouchitis which increases fluid in the stool.
eGFR is usually moderately decreased (about 70...80, at age 52). When I had a serious infect that affects the bowel's function (diarrhea) without me getting aware of it early enough (as a little more fluid and one or two more BM is not such a serious alarm signal), then within a few days I had an electrolyte imbalance and (partial) renal failure several times in the past, urging me to go to the doctor or hospital for infusions. In such cases eGFR levels were down to around 50 or less.
So I just had bloodwork after a much too long wait in a warm doctor's office late in the day. I didn't have my water bottle with me. Was getting that dehydrat-y feeling. I probably have postponed the bloodwork but was walking past the lab on my way out and didn't want to have to come back.
Results were all good - except for elevated creatinine and a below the norm eGfr. Never been outside normal before. So a google dive got me newly worried about my Kidneys.
Now I have got to go back for another draw and they've added a parathyroid hormone test which I don't quite understand - calcium is normal. If anyone out there can explain why the PTH was ordered, please do!
When I get the new results will add them to the chain.
It turns out I have CKD, level 3a, now down to level 2. All this started after my colectomy.
Recently, my nephrologist started testing my PTH, which is running slightly high. Apparently high PTH is associated with kidney disease, although I am still not understanding all the specifics. The specialist told me not to get concerned at this moment since my calcium levels are normal.
i will be re-tested in July and hopefully get some more clarity.
On the subject of acute renal failure and since all of us are, as IBD sufferers, potentially also subject to cardiovascular disease, I wanted to note that my father is currently suffering from acute renal failure and is being dialyzed. This came about in the aftermath of a heart attack he suffered on February 13. The heart attack was caused by a blockage in his right coronary artery. To address that, a cardiac catheterization and stent implant was done. Contrast was used in that procedure, and that contrast severely messed with his kidney function. His creatinine levels were already elevated pre procedure, but the procedure skyrocketed his creatinine to 8.27.
As a result, and because the urine output in his Foley catheter was really good, they decided to give him dialysis. It's anticipated he may need up to a couple of weeks in order to get his kidney function where it needs to be so that he can have a cardiac MRI on another blockage in another artery which has not yet been addressed.
All of this is to let all you know that the contrasts and dyes used in these procedures potentially seriously impact on renal function.
I was with Dad during most of this ordeal. A symptom of the acute renal failure is nausea which caused both vomiting and acid reflux. So much so that his throat was burning. The good news is he is doing much better now. But not out of the woods as he is getting dialysis in a weakened state and with a heart that still has a blocked artery (LAD). I should also note he has IBS.
CT, so sorry this is happening to your dad. It's a lot for an older person to go through. It is wonderful that you could be with him for support.
Am I understanding that the docs are giving your dad a couple of weeks for kidney recovery and then they're going to administer a contrast solution that can once again cause kidney problems??
@roseviolet posted:Am I understanding that the docs are giving your dad a couple of weeks for kidney recovery and then they're going to administer a contrast solution that can once again cause kidney problems??
The latest we know this morning is that two 3 hour dialysis sessions in 2 days (yesterday and today) successfully removed the contrast toxins that skyrocketed his creatinine to a high of 8.27. He is done with dialysis apparently. To be determined as to when exactly the cardiac MRI will be attempted.
As to your second very good question, I asked this question to the cardiologist and he told me that different contrasts and dyes are used for the cardiac MRI than are used for the cardiac catheterization. And that dye isn't as harsh on the kidneys. I was also advised by the cardiologist that if another cardiac catheterization and angioplasty needs to be done to address his other blockage, a different, less harsh on the kidneys contrast can and will be used. However, I believe cardiology will take their cues from nephrology as to when to perform and what to use on any future cardiac procedures.
I was also told there are various contrasts and all impact on kidney function in matters of degrees, some more than others.
Unfortunately the lesson from all of this that everyone here should take away is that if you have abnormal kidney function to begin with, and are going in for any kind of dye or contrast procedure, there should be a healthy discussion with the nephrologist about what dye or contrast can or should be be used. If need be the nephrologist should talk to the specialist conducting the procedure.
Am glad to hear that the toxic substances could be removed so quickly. What a relief for both of you and thank you for sharing this important info.
More on elevated PTH. My metabolic panels have all been normal since an aberrant one earlier this year. But PTH remains elevated. I found an abstract from @ 2015, co- authors include Shen, Remzi when at Cleveland Clinic, that identified an association between Ileal pouch/IBD and elevated parathyroid hormone. Other articles list inflammatory bowel disease and bowel surgery as risk factors for hyperparathyroidism. Not sure where this will lead for me, though I fear a work up with an endocrinologist may lie in the future. There's another topic about high PTH that I'll link here. I'd be interested to hear from anyone who's been either evaluated or may have undergone treatment related to this.
@Pear2393 posted:I had Jpouch in 1996 and am now having problems with acute renal failure. Has any other long timer having anything similar? I was wondering if it was the chronic long term dehydration we have from not having our colon to reabsorb fluids
How are you doing now???
I haven't posted here in eons but I just happened across this thread doing my own research after receiving the results of some recent labwork that got me curious. I've had my pouch since 2008, I had an ileostomy for almost 3 years prior to that (both end and loop varieties). I do wonder why the impact on kidney function hasn't been studied more and why there aren't any real guidelines for j-pouchers or ileostomates in terms of maintaining kidney health. In my case, my eGFR seems to flutuate up and down quite a bit even in just a few months' time, going up and down between the low 80s back to the high 90s and then dipping into the 80s again. It was 77 once, but then I was battling a virus and probably a bit dehydrated. This has been going on for quite a while apparently, as I found some bloodwork from 2013 and then it was 83. 11 years later, it hit 97. I have no idea what this all means, but none of my doctors have ever seemed concerned and I seemingly have no other markers for CKD. Years ago, a stoma nurse did lecture me severely about water intake and cautioned me about dehydration impacting the kidneys, but otherwise kidney function has never been mentioned to me before or since. Again I don't know what this means, but it has occurred to me that maybe eGFR isn't as accurrate or should even be interpretted differently for us; i.e. do our creatinine levels fluctuate more than average? (at least in my case this could be true). And if so, what does that mean for our kidney function, even our overall health in general? What is even normal for us? Anyway, food for thought. In the meantime I plan to pay more attention to my fluid intake.
I hope everyone here is doing well.
It’s great to hear from you, Spooky! The estimated glomerular filtration rate (eGFR) is sensitive to hydration. Those of us who bounce from well hydrated to dry will see these values bounce, too. This isn’t a sign of kidney disease.
Hello! Good to see some familiar faces! I don't mean to be a stranger, I should pop in more often! I'm mostly doing well, with the occasional health hiccups that I've come to expect after almost 20 years without a colon. How are you doing?
Thanks so much for the info. I thought it was odd that the eGFR would fluctuate nearly 20 pts either way (I couldn't find much online about rates varying at all, other than to say they decline with age) , but hydration could certainly explain it. I probably don't always drink as much as I should. I'm also a runner so I'm sure that impacts things.
Another reminder to pay attention to hydration. Thanks again 
Ditto on the above in regard to acute vs chronic kidney disease. I am also one with chronic mild kidney disease. Yeah, I trend toward dehydration, mostly out of laziness. Plus, I also have type 2 diabetes. My primary has put me on low dose losartin (an angiotensin II receptor blocker) and Jardiance (SGLT2 inhibitor) to help protect kidney function and prevent further damage. My renal function has improved somewhat .
I try to actively keep my fluids up, but I am still lazy.
Jan