Just need to talk.

[AndreaBabyC]

hi there,

Since, I really have no idea what I’m doing and having an ileostomy complicates things like I can’t just drink water I have to drink isotonic drinks etc.

Anyway, I have stents due to hydronephrosis. My egfr was 22, then 20 in hospital last year. I have nephrostomy’s for a while.

last week I felt very dehydrated due to my ileostomy being overactive. This has been an ongoing this but I haven’t bothered going to the dr about it.

There’s was a nasty nurse, I got my B12, quickly saw a dr who wanted me to go straight back to the nurse for urgent bloods. But I wouldn’t go back and walked out with my partner.

Anyway, I got a blood test on Tuesday. My egfr is 40, my creatinine is 112 or maybe it’s 1.12? The person who gave me my results just said 112?

They didn’t say they had a note of magnesium

Potassium 3.6

Sodium 138

Chloride 108

Urea 3.1

Just a heads up, I’m from Scotland. The GPs withheld that I had kidney disease last year?! I had no idea.

today they said my bloods were satisfactory which they probably are but I can never tell because they said that last year until I went into urine retention due.

Does anyone have any words of wisdom? Thank you

[SpringersRock]

Hi, Andrea, I’m similar to you as I’ve got an ileostomy and a uterine stent in also due to hydrophrenesis, I’ve got a urostomy and I’m also from Scotland. Anyway I’m sorry to hear that you’ve been through a rough time and if your stoma has been over active it’s worth speaking to the stoma nurse if you don’t want to speak to your doctor. I’m on loperamide for high output. Have you been referred to a nephrologist in regards to your kidney function, if not I’d push for a referral. I’m sorry I don’t have words of wisdom but want you to know you are not alone.

Best regards.

[Pisces101 in reply to SpringersRock]

No words of wisdom from me either, I'm afraid.. but your blood tests do seem OK according to the "normal range" information:

Potassium 3.6 (normal range: 3.5 - 5)

Sodium 138 (normal range: 137-145)

Chloride 108 (96 - 106 it says here: healthline.com/health/chlor... ) so your result shouldn't be bad?

Urea 3.1 (this might give some info: healthline.com/health/bun#r...

Hope you have a good doctor that you trust and can get more information from. I see there is a lot of good advice here and other places - and everyone says we should plan our questions.. come prepared to doctor's appointments.

Take care!

[barbara55109]

I have a high output ileostomy for 30 years. I lost my colon at 30 and am 60. My CKD is from dehydration. I am on max doses of two different anti diarrheals. I cut my caffeine by 80% or so. I drink a lot of sugar free sports drinks with electrolytes. I was down to 7gfr 3 years ago. I'm a 25 today and have an unused dialysis fistula. I have encountered a few others with CKD from an ileostomy. I encourage you to go on anti diarrheals.

[AndreaBabyC in reply to barbara55109]

Yep, I take lopermide. They definitely help. Although they didn’t cause the kidney damage, hydronephrosis did because of the cysts that blocked my kidneys. Who knows what else is happening in there.

[Wyts]

Always ask for a print out of test.live in England.5 years CKD before in formed by surgery.keep asking for advice and read up on CKD. Paramjit Singh Sahai.book kidney care

[Miss-guineapig]

Sorry to hear all this, please keep us posted about your progress, big hugs x

[Camppy3]

I had that very same issue with my GP, found out when I had to have a hysterectomy and that Dr. Said I need to see a Nephrologist. Go to another Dr. Is my suggestion.

[AndreaBabyC]

Sorry for the very late reply. I’ve had a couple of UTI’s lately. So I was asked to go in for bloods. Egfr was 45, just found out serum Creatinine was 115 and crp 23 last week.

I’m starting to struggle to pass urine again, it’s taking up to 15-20 minutes at times, and I always try to keep my fluids up. This is what happens each time the cysts start getting bigger in my abdomen. In April they drained the large one, but there’s apparently lots of smaller ones that they can’t drain.

I do have a nephrologist, I only see or hear from her when it’s time for my stents to be changed. They were changed in July after nearly 9 months. It said on my discharge letter that my stents will be changed between 6-8 months.

I don’t like that they leave them in longer than 6 months after I nearly died from septic shock, was in coma for nearly 3 weeks and had to go to neuro rehab to learn to walk, sit up, basically do everything again.

I find the NHS won’t do anything unless a person is so seriously ill it’s life threatening.

[Pisces49]

glad your gfr seem to be improving. Try and a good diet. Low protein. Low animal products. I will pray for you.