advice needed
Posted , 7 users are following.
I went for a scan yesterday as I've been having symptoms of IBS. They checked my gall bladder and kidneys and found a stone on my left side. She said it won't be possible for me to pass it as it is 1.5cm big. Does this mean it's been there a while?
Also I had a blood test for crohns but it came back negative. All the symptoms I have match for crohns and I have read there are links with kidney stones. Anyone else had experience with this?
3 likes, 9 replies
sheffnet becky51560
Posted
Your stone will have been growing slowly for a while but it's not possible to be certain for how long it's been there as it will not have given you any symptoms at first. Some people have stones all the time but the stones sit in a position where they don't give symptoms.
I can't help you with your crohns question.
Tallkat becky51560
Posted
Hi,
I have Crohn's, and kidney stones that will not stay gone- two surgeries over the last four months and now they are back, both sides kidneys. The laser surgery is no joke, absolutely the worse pain I have ever felt, and I have had two children. From what my GI has said, the true way to diagnose Crohn's Disease is to have a colonoscopy and biopsy any inflammation in the colon or intestines. Right now I am having a flare up of Crohn's, but all my blood test are in normal range. Blood test can be misleading. If possible, I would push for a colonoscopy.
The kidney stones and Crohn's are just awful, nobody can give me answers as to why it's happening. But the pain with the stones, even when not passing them, are intense. Hope you can find some relief.
sarah55424 becky51560
Posted
Hi Becky,
I'm writing to you from hospital. I hope I can help with sharing what I've learned. I began with a kidney infection 3 months ago. Since then I've had 10 lots of antibiotics for many things which weren't the actual cause. I did lots of research and thought I had Crohn's disease due to having all of the symptoms. Plus my sister has this condition. My doctor tested and said that it wasn't the cause of my being unwell. I've had almost 3 months off work. It drove me crazy. Then I had a CT scan and they found a 4mm stone stuck in my kidney. This is causing the blood in urine and constant infections. Constant fevers, feeling very unwell on and off. I've now been admitted as I have another infection.
So I would say that yes you have had the stone for probably afew years and it's gradually increased in size. If it's as large as you say 'cm' and not 'mm' then I can't see it passing. Mine won't pass and it's 4mm. I would also say that all of your symptoms are being caused by the stone and not something more worrying. I felt exactly like you and at one point thought I had kidney cancer as I had lots of those symptoms as well! I became obsessed with finding out what was wrong with me. Nobody thought it was a stone as I didn't have the typical symptoms.
My advice to you is drink as much water as possible. 2-3 ltr per day. This may help flush it out. Or try and get it removed. It's a very slow process on the NHS. I ended up paying for a private scan just to rush it on a bit.
I hope that this helps. I wish you good luck and am sending a hug. Sarah xx
becky51560 sarah55424
Posted
Hi Sarah
thanks for your reply. I'm seeing the Dr on Wednesday to discuss how they are going to get rid of the kidney stone and yes it is 1.5 CMs 😳
I really do hope my symptoms are because of the stone. I waited 8 weeks just to have the ultrasound scan.
i hope you're on the road to recovery now and get home soon xx
lolaroo becky51560
Posted
Good day,
Here's the thing with kidney stones and Crohn's disease, they do go hand-in-hand. If you've had one kidney stone, you're bound to get more. This happens because the way the body absorbs fat and processes food quickly causing kidney stones. Yes, Crohn's and kidney stones can have similar symptoms. Such as lower back pain, sometimes fever if you're passing a stone. Crohn's disease causes a lot more symptoms such as mouth lesions, rectal bleeding, severe joint pain and some patients will have fever with flareups, severe diarrhea vomiting loss of appetite weight-loss. Yes, some of these symptoms can be seen in kidney stones, but this usually only happens if one is passing the stone.
The one poster who said that Crohn's disease cannot be truly diagnosed in a blood test, is correct. To be given a correct Crohn's diagnose you will need to have a colonoscopy and have a tissue sample done. Plain and simple. If you think you have Crohn's, push your doctor to do the correct testing. Crohn's disease is one the most misdiagnosed conditions, usually being said its the lesser IBS instead of IBD. Big difference.
With the kidney stones it is possible that they have been hanging out for a while, but in likelihood they have not been there for years, not without causing some sort of discomfort- any over 5mm, will not pass on its own, meaning surgery will be needed or you risk the chance of passing that said stone on its own, which is extremely painful and can lead to a blockage.
erika96170 becky51560
Posted
I'm just back from hospital last week. I've IBS as well, and I had a 2cm stone on my right kidney. They did a PCNL surgery, all stone cleared from my kidney, so I'm very happy now. If you want to know more about the surgery, please ask!
Sorry, my english is not too good.
All the best!
becky51560 erika96170
Posted
Do they think the kidney stone irritated your IBS? What is the procedure you had to have it removed and was it painful? How long did you have to wait?
Sorry for all the questions
Thank you
Becky
erika96170 becky51560
Posted
Hi Becky,
They didn't care with my IBS, like I woudn't have it... The procedure what they used it called PCNL. The suregeon make around one centimetre hole through the kidney and break the stone into smaller pieces and remove them through that hole. And then left a drainage tube in the kidney. It's been done using general anasthetic, but after that the pain was controlled with paracetamol, ibroprufen. The problem was that I was bloated, looked like a 6months pregnant lady, my bowels were full of gas, and they didn't care with it. They just told me to drink more, because it is not enough, it's not a problem if I didn't eat just drink more... But I couldn't drink more, because my bowels pushed my stomach. It took me 2 days to get back my probiotics because they gave me lot of antibiotics into my vein, they locked all of my herb medicines, probiotics etc and took 3-4days until they gave me something to be able to go to the toilet to empty some gas and poo. I couldn't make poo for 3 days... Normally I do 2-3 poos every morning because of the IBS. So it was a nightmare. My husband asked them I asked them many times to give me something. The surgery was on Thursday, and I could make poo on next Monday. The waiting time? I went to the GP because I felt burning feeling when I empty urine, in January. Lot of urine sample check didn't really find anything, blood tests which were normal, in April I've got an appointment to a kidney specialist for June... In May I went to an ultasound scan, it showed 2cmx1.7cm stone in my right kidney and a 6mm one on the left kidney, when it's been found out that I have kidney stones, the GP tried to move my kidney speialist appointment to an earlier time, but they didn't move it earlier, so in 8th June I saw that specialist, who sent me to a CT and to the urologist. I saw the urologist on 28th June, who explained me the PCNL would be the best chance to remove all the stones in one go. He put me to an urgent waiting list, and I had to go to the hospital at the end of August. I spent 9 days in the hospital... It's unbelievable. They removed the catheter after 5 days, because I couldn't produce enough urine, because I was bloated. The drainage tube has been removed a week later when I needed a kidney stent inserted because there was a swollen bit somewhere between the kidney and the bladder. The doctor couldn't tell me where, interesting isn't it? However he went in a camera first to have a look. Hope your procedure won't take as long as mine.
Hope I could help.
Erika
Steph9283 becky51560
Posted
At the end of december one of my stones was 10mm (1cm) and not causing any probs in less than 6 months it had grown to 19mm.
I would imagine now that it is over 2cm and i am just waitng for pcnl surgery to have it removed.
I wish you luck ad hopthey are able torove it sooner rathr than later.