Ileostomy for 45 Years - Now Facing Kidney Issues

I have had my ileostomy for 45 years. For the past 4 years, my eGFR is dropping and creatinine is rising. Is this common, or perhaps due to electrolyte problems?

As I write this reply, I am on an IV for that very issue.  I've had an ileostomy since 1964.  No one ever told me that I might have renal issues later in life, but now I've got them.  I'm presently receiving weekly IV infusions and my numbers are improving noticeably.  I expect that once my numbers have regaining acceptable levels, we'll pause the IVs and see how long I can remain stable.  Until recently, my efgr had been stable for decades but, thankfully, it is now going back to former level with the infusions.  I can't say how common or uncommon this is.  Do you have a nephrologist to see?  If not, I'd find one.    

Long term, yes, it can be. A doctor at an ostomy event a few years ago said that when you reach the 40+ years stage with an ileostomy, it's quite common to develop kidney problems and end up having dialysis. I know a few at the 50+ years living with an ostomy on dialysis now. It's so important to make sure we drink enough fluids, and not just water. Many younger people with ostomies laugh about how they only drink water and there's nothing wrong with doing so, but it's so important to stay hydrated to prevent problems in the future. Luckily, I don't have any kidney problems, not yet anyway, but I was told recently that I'm not drinking enough fluids. I always thought that was the one thing I was doing right, but I was wrong, so I'm trying to get on top of it now.

I have stage 3 kidney disease from an acute kidney injury that I had when I had COVID and got my ileostomy. My numbers go down because of being chronically dehydrated, but they are fairly stable at the moment. However, whenever I get dehydrated, I am putting myself at risk. So, I have to drink constantly, and that is something I have learned with my ileostomy too. Because my sodium, potassium, and magnesium are all borderline low, I have to drink sports drinks with electrolytes in them. I drink Gfit because it has the lowest sugar without artificial sugar in it. But taking care of your kidneys is really important because once they fail, you can't get them back. That's it. Dialysis for life.

Yes, as all have said, I went from Stage 3B to Stage 2 in 2 years... just got lucky with a great doctor. But it unfortunately can happen due to dehydration. We don't always absorb everything we eat or drink, especially if you notice your output is like water instead of somewhere in between.

Words of Encouragement from Ostomy Advocates I Hollister

Kathy, I think I am uniquely able to help you with your problem. You see, I was an ostomy nurse starting in 2001 and became a permanent ileostomate in 2009. I am also a kidney dialysis patient and am in dialysis 3 days a week. I'm still an RN, having been one for 32 years. I would need some more specifics to be able to help you with this specific problem, but it sounds to me like you need an appointment with the urologist to start. I would also need to know your insurance to be able to help guide you through the system. Let me know if there's more I can do for you.

Julie Lindfors RN

Hello Kathy.
Thank you for this very timely post.
Nobody ever mentioned this as a problem. However, at my recent annual health check they informed me that I  have had deteriorating kidneys for 3 years!
I'm not sure why I was not informed about it in the two previous years and they have not given any further advice as to anything I might do to prevent it getting worse. Also, nothing was said about any link to having a stoma.
I am therefore grateful that you  have raised the issue and I look forward to reading everybody's comments on the subject.
Best wishes

Bill

Good morning!

I have CKD stage 3a after not quite 1.5 years with a colostomy with short bowel syndrome and very high output. The best thing you can do is stay well hydrated and get a nephrologist on your team.

Hi Kathy -

I'm not sure if it is common but one of our family members has the same thing happening. The Nephrologist's Rx was for Sodium Bicarbonate in a medical pill form so you may want to check with your Health Care Team.

Best

That's exactly what mine put me on to reduce the acid/toxins in the kidneys to help prevent further damage or delay the chances of becoming worse faster...so far it's helped me stay stable over the last 2 years and went from Stage 3b back to low Stage 2.

That goes for me, too, Kathy.