Message Boards for the CF Trust

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sally 1

Posts: 128
From: oldham
Registered: 09-Nov-2006

kidney stones and cf??
Posted: 08-Dec-2006 23:33

Reply

Tom went for a scan the other day due to medium term dodgy guts syndrome. They spotted a very small kidney stone
( maybe) and will exray to confirm this. What are the implications of this? Is it cf related or just bad luck? Thanks for your help

sal

DimBloke

Posts: 102
Registered: 11-Nov-2006

Re: kidney stones and cf??
Posted: 08-Dec-2006 23:51

Reply

It's most likely CF related. The University of Florida published some research on the link between CF and kidney stones in The Lancet in 1998.

They reported that CF patients are sometimes missing a good bacteria in the intestines called Oxalobacter formigenes and this increases the chances of the patient developing kidney stones. Also, antibiotics such as ceftazidime can deplete the intestines of O. formigenes which again increases the chances of developing stones.

What, if anything, is done about the stones depends on their size and location. Small stones can usually be passed over time; larger stones can be broken up with lithotripsy (shock waves).

*Laura*

Posts: 97
From: Warrington, Cheshire
Registered: 15-Mar-2004

Re: kidney stones and cf??
Posted: 08-Dec-2006 23:52

Reply

I don't think there's been any concrete proof that it's CF related but I think it is quite common. I've heard of a few recent studies but no results as of yet.

I had a kidney stone several years ago and it was treated with lithotrypsy (sp?). It depends where the stone is and how big/what it's made of as to how it's treated. Mine was at the bottom of my left ureter (above the bladder). Has Tom had any pain with it? I had no pain whatsoever, which the docs thought was quite strange at the time because my stone was quite large and caused blood in my urine.

I hope all goes well for Tom.

sally 1

Posts: 128
From: oldham
Registered: 09-Nov-2006

Re: kidney stones and cf??
Posted: 09-Dec-2006 00:06

Reply

Its not been confirmed yet and, thankfully, he seems to have no pain. Maybe the scan got it wrong?? We'll have towait and see. Are they like gall stones? I had those and think I would rather be in labour
sal

tammy

Posts: 2
Registered: 08-Dec-2006

Re: kidney stones and cf??
Posted: 09-Dec-2006 14:22

Reply

Hi sally I've had kidney stones 4 times and they say for a man its the worst pain they an get and for a woman it's the second worse pain they can get after labour. I've never been in labour I just know that it was the worst pain I've ever had. They also managed to go in to my tubes which caused quite a bad infection which affected my chest as well. Its good that catched them now they can treat him before he gets any problems if it is kidney stones, hopefully not.

dawnypink

Posts: 39
From: North East
Registered: 06-Nov-2006

Re: kidney stones and cf??
Posted: 09-Dec-2006 16:04

Reply

I think I have a kidney stone, I have had pain in my side for two weeks and feel like i need the loo all the time. I have a lot of blood present in my urine and no infection.
I seen my GP on Monday who was about as useful as a chocolate fire guard. He said there was no infection, so to wait for it to clear up. I said wait for wot to clear up??
After I told him the nurse had tested my urine sample and said there was a lot of blood present he asked me if I would like a scan and I said 'Well yes if you dont mind!'. Then he said it would take 6-8 weeks for my scan and I was like Wot!. Then he offered me an X-Ray cos he said that would be quicker but they don't always show up on X-Rays! So then he said well seeing as you have blood in your urine I will mark it as urgent fro the scan - Oh how generous of him!! I am still waiting to hear anything and it is driving me mad

Dawny xx

softie

Posts: 1,070
From: Croydon, Surrey
Registered: 07-Feb-2004

Re: kidney stones and cf??
Posted: 10-Dec-2006 01:51

Reply

Your CF team may be able to get a scan more urgently for you.

Richard.

cally

Posts: 3
From: midlands
Registered: 01-Dec-2006

Re: kidney stones and cf??
Posted: 11-Dec-2006 09:47

Reply

Hi Sally - my 16 year old son, Jon, has had 2 episodes of kidney stones - details are on a previous post - I think they are "not uncommon" in cf.Apparently they only cause pain when they start to move down the urinary tract - at which point the pain can be acute - there's nothing they can do about it other than prescribe strong pain killers and drink plenty of water.They also have to make sure that any stone that is not moving doesn't end up causing a blockage in the kidney. Jon was followed up quite rigorously and the conclusion was that there was no underlying reason for him developing kidney stones - other than his cf. His last scan in March showed something but the doctors at that particular hospital weren't convinced it was a stone - he has to have another scan next march to see what is going on.
I hope you get to the bottom of it anyway.
Claire

goff

Posts: 6
From: midlands
Registered: 27-Nov-2006

Re: kidney stones and cf??
Posted: 11-Dec-2006 10:02

Reply

Sally - not that it makes any difference to the content of the above post but I just thought I'd clarify that I'm claire and not cally who is a friend of ours who asked me to create an account on her behalf as she didn't have a computer that worked at the time. I didn't realise that I'd logged on in her name instead of my own. Hope I haven't caused more confusion!

sally 1

Posts: 128
From: oldham
Registered: 09-Nov-2006

Re: kidney stones and cf??
Posted: 11-Dec-2006 17:15

Reply

No no its fine. I live in a semi confused state anyway. Thanks for the reply. As he has his annual review next week I guess he'll have his x-ray then and we will know if it is there.

sal

goff

Posts: 6
From: midlands
Registered: 27-Nov-2006

Re: kidney stones and cf??
Posted: 12-Dec-2006 09:14

Reply

Let us know how you get on - I would add that on Jons second kidney stones occasion his x-ray was clear although a previous scan had shown that there was still a small stone there. Fingers crossed you get the all clear anyway.
Claire