Kidney issues and pouches

[squid56]

I have recently been diagnosed as having protein in my urine. I also have a stone on my right kidney which is not obstructing anything so we are just going to leave it there. As for the protein, I am going to see a nephrologist and get his opinion. My pouch is 17 years old and it has been 23 years since my bladder was taken out. Just wondering if anyone else has had kidney issues, I was told when I was converted over to my pouch that it would actually help my kidneys since my uro created one way valves to prevent reflux. I used to get sepsis every 2-3 months, now it is about 2-3 times a year- a HUGE inprovement, so I just have to wait and see what the nephrologist will say.

[spunkylady]

I too have kidney issues, although all the damage happened at the same time as my my bladder being removed. The tumour I had caused one of my kidneys to stop funtioning as well as being attached to my bladder which caused its removal. After my first surgery when a neo baldder was constructed, there came a point that I could not void and had to cathe. This caused chronic UTI"S infections. At one point my good kidney shut done and I went into renal failure again. After some ugly stuff that got working again.

When I became incontinent and had my last surgery for an Indiana pouch I cathe. Infections stopped and so far my kidney is functioning fairly well.
It does leak protein so my GP Dr. has me on Avapro (high blood pressure meds - this are supposed to protect the kidney. My creatanine levels are monitered for kidney failure. Oh and as a result of all this trauma to my body I have been diagnosed with fibromyalgia

I know you posted awhile ago and I hope you are well and things turned out ok for you.
I am still fighting!!!

Take Care

Debi

[squid56]

Thanks for responding Debi, so far things are okay. I need to go back to see him in July, and repeat more tests.I do have some loss of function so I guess I will need to be monitored for the rest of my life now. He feels it is due to all the infections I had over the years. I also have been told I most likely have fibro too.

[10french]

Hi,
I've also had my Indiana Pouch for some time now-16 years- and have kidney issues, lots of infections, decreased kidney function, and now an obstruction in my right kidney.

Here is what has changed my kidney health and life: Irrigate with sterile saline solution every day and don't reuse catheters.

I've changed to this regiment and have never felt better. The infections, horrible flank pain, etc. are gone, the obstruction is still there but not causing any damage to my kidneys at the moment, and my energy is back. Since I've been irrigating every day (about two months now) and don't wash and reuse catheters, I feel like a million bucks--and it's been about 20 years now of frequent infections for me.

Also, you are allowed to order and be covered for one catheter per use as outlined in the MediCare guidelines, even if you have Blue Cross, Aetna, etc. The insurance companies must insure/cover you for what MediCare allows---and MediCare allows for one catheter per use. I order 180 catheters per month (6 per day times 30 days), but I could order more if my doctor says it's medically necessary--and he did. I've had to fight with insurance companies in the past but they must allow for what MediCare covers.

I use one sterile syringe (60 cc) per day and push two syringes (120 cc total) into the pouch. I order 250 cc bottles of sterile saline solution and so one bottle covers two days (or 15, 250cc bottles per month)

Oh, one more thing, you can also ask your doctor about a prescription for a liquid antibiotic to mix in your irrigation solution to use when you become symptomatic.

Good luck and I hope this information helps you.

Barbara

[wolfva]

Protein in the urine can be caused by high blood pressure, among other things. Doubtfull the pouch has anything to do with it.

Didn't know jpouchers had to irrigate. Urostomates don't.

[squid56]

I just had a 6 month check up with the nephrologist and things have gotten a tad worse. I guess it be progressive for me, I have CKD aka chronic kidney disease. So the reality is beginning to hit me anfd I am going to get an ultrasound of the kidneys to see where things are at and also to check on my kidney stone.
Barbara, I can't irrigate my pouch as it sends it into horrible spasms. I have IBS in the pouch, I have done the antibiotic in the pouch and that had no effect. My insurance only pays for half of my cost of catheters so since they are still very expensive I must reuse them. I only get about 2 infections a year now which I think is tolerable.
I don't have high blood pressure if anything it is on the low side, the protein is partly due to the mucus in the urine- it is mostly made of albumin which is a protein.

[wolfva]

Albumin is also what the white of an egg is mostly made up of....OH...MY...GOD! You're turning into a chicken! Then again...laying eggs might not be that bad. You could open a breakfast resteraunt specializing in eggcelent omelots. Bet the yolk'd be on the customers for sure!

[squid56]

[barbinal]

I had a renal scan last week, then saw the urologist. My right kidney is only operating at 10%, but the left one is going strong at 90%. He said this may have been going on before my cystectomy in 2/09. I have an ileal conduit so can keep a close eye on the urine at all times - if it gets too cloudy or changes color, then I push more water.

So far, so good and have only had one kidney infection since surgery.

Stenting the right kidney is not an option because for all intents and purposes, it's gone. Blood work all shows normal kidney function and I'm thankful for that. I take 5mg Lisonopril daily for blood pressure and to protect my kidneys.

~Barb~