Crohn's and Kidney Stones

[CrystalClear]

Hello Everyone,
I am 23 years old and was diagnosed with terminal ileitis when I was 20. I have read a bunch of posts on here but was too shy to post anything. I unfourtunatly have come to a point where I need help. My symptoms when I first went to the doctor were hair loss (lots of it), horrible stomach pains, throwing up and diarrhea. It got to the point where I had to use the bathroom 20+ times a day. I did not go to the doctor for a while as i did not notice an issue. I had recently moved out of my house, very stressful and hard situation. My grandma has diverticulitis and noticed something was wrong. She made me go to the doctor and I am gald I went. I went to Dr.Tang, the best GI I ever had, and she ran a few tests.
She ran a blood test to check for infalmmation markers, I had a ton. She did an endoscopy and I had obvious reflux. She did a colonoscopy showing infalmation, she could not get the camera through, she took a biopsy and removed a polyp. She then did a CT enterography (sorry for the spelling) and it showed thickening in my ileum. She started me on Aasacol, was allergic to that. She then gave me Apriso which was great. I stopped going to the bathroom as much, at this point like 10 times a day. She put me on remicade which helped even more, down to 4 bathroom trips on a good day. Then she moved far away ale:
I went to another doctor in that practice and my issue was the mornings. I woud either go A LOT once or about five times equalling about an hour in the morning before I was able to get ready. I have over an hour drive to get to school so I have to leave early and this has been an issue.
The new doctor perscribed mercaptopurine. It helped my issues but a bad day is a bad day. This is when things got worse, at this point I am 22 (took a year to get diagnosed). A moth and a half after taking mercaptopurine I started to get monthly UTI's. I started to get horrible back pain, especially when sitting at work. One day at work I urinated a lot of blood. I went to the hospital and they said it looked like I had passed a kidney stone and I had another stone in my kidney. They referred my to a urologist who told me I had a 2mm stone in my right kidney (Neverhad them before). He reffered me to a new doctor as the stone was not passing but I still had pain and blood in my urine on a constant basis.
The new urologist did not seem to take me seriously and dismissed me. He said to just drink a ton of water, which I have been doing. I went back a few weeks later shaking with pain. My whole body tremored and he saw I was in horrible pain. My urine had blood, he ran a urine test. He gave me pain meds, I was happy since it seemed that the stone was comming out.
Another week went by and the pain came back (the pain usually lasts 1-3 days). He sent me for a cat scan which showed the stone had doubled in size but didn't move.
He did not seem to know why i had all of these symtpoms or why i would be urinating blood with out any stone movement. I turned into a little detective. Apparently some adverse side effects of mercaptopurine are UTI's, kidey issues, bloody urine, back pain etc. All of my symptoms happened after that medication.
At this point I had switched GI's due to difficuty getting a simple perscription refill. My new GI is really helpful and we decided to get off of the mercaptopurine, even though he doesn't think its the medication causing the kidney stones. The urologist said that in my cat scan my ilieum was very thick and my GI compared it to my first CT enterography; it was thicker. He said to take metamucil everyday and only drink water, no juice or milk. I found out dairy products are horrible or okay. Some days I can drink milk no problem, other days it is horrible.
At this point my options left are increase remicade or surgery. I gave my history as it is my first post on here, again I can not even begin to explain how helpful this site had been all along. I was wondering if anyone else had issues with kideny stones? Has anyone else had kidney stones and if so was it from medication or the Crohn's itself? My latest issue is i have really bad cramps in my lower right abdomen. I can't sit when i have these pains. When I sit for prolonged periods of time (at work) I have flank pain and usually urinate blood more often.
I feel like I am too young to be dealing with all of this, last semester is when I started getting kidney stones and it was by far the worst semester of my life. I am taking only two courses and trying to focus on my health. I want to avoid surgery although it seems futile to do so. Every time I turn around I have more issues. It has gotten very depressing constantly wondering when will i get another kideny stone, when will I have another stomach pain attack, when will I throw up? :sign0085:

 

[fuzzy butterfly]

I am so sorry for all you are going through. I have no knowledge of kidney stones I'm afraid, but want to offer you support. I am sure someone who knows more than I will be in touch soon to offer advice. Wishing you well soon. :hug:

 

[ronroush7]

Welcome. I am sorry for all you are going through and I am sorry that you have this Disease. Does your doctor know about your latest symptoms? Also, we have another section on here called Extra Intestinal Manifestations. You might want to post on there your questions about the kidney stones. Again, I am sorry for what you are going through. Please keep us updated.

 

[Honey]

Hi there, and welcome I do understand how hard it is as it takes some time for diagnosis, and then finding the right meds that suit you. I had a kidney stone years ago, excruciating pain, which I passed at home. I was only diagnosed with Crohns 3 years ago and was told it was the Crohns that caused that ! It only happened once, no problem since, so do not worry about it again! I have also had a reaction to meds until Remicade infusions worked for me. I did have to come off that but am currently well and out and about. So, you will get there do not lose hope. Take one day at a time. Discuss your concerns with your Consultant and ask plenty of questions. It helps to be informed. Remember though we are all individuals in our illness, how we respond to treatment and how we cope. Sharing on this forum helped me. Please do not hesitate to ask me questions and I will try to help. Get well ,best wishes.
anda-wave-t::welcome:

 

[CrystalClear]

Thank you all for the advice and well wishes! The biggest issues for me was that I simply deduced my Kidney issues to problems I had when I was younger (kidney infections), no one told me Crohn's could cause kidney stones (until i went to this forum!! thanks again) and the switching from doctors. My orgiinal GI was extremely attentive and always made sure I was okay. She would ask me questions that seemed odd (like is your hair falling out) and it turned out it was very important. My current doctor knows now about all my symptoms as I went to him in December. He asked why I did'nt tell him, again no one told me kidney stones and Crohn's were related. My big worry now is surgery. Since my bowel movement are rarely anything but loose, from what I have read, I would presume this to get worse with removal of my terminal ileum. Has anyone had expierence with this?

 

[tzvia]

Yes, people with Crohn's tend to get more kidney stones than the rest of the population. I'm not sure as to why. I have had a kidney stone, and I wasn't on a medication for Crohns when it happened. It was extremely painful....like at least as painful as a bowel obstruction. It's important to stay really hydrated to prevent more kidney stones.

 

[fuzzy butterfly]

Hi i had my resection at the terminal ileum. With loperimide n questran im pretty much 'normal' now . I have odd days were i may go 3/5 times , but quite rarely. Some dont need meds to be ok some do its pot luck there im afraid ☺

 

[CrystalClear]

Kidney Stones & Crohns: A love/hate realtionship

*UPDATE* Meds: Remicade 600mg Crohns: moderate but MUCH better
Age:24
I started to get kidney stone pain again this December (2016) but I ignored it as I did NOT want to deal with it through my last week of finals. I was in my last semester of college and I did not want anything to disrupt it. Luckily I made it through the semester although Christmas morning took a turn for the worse. I woke up at 5:30 AM in horrible pain. My boyfriend kept trying to ask me if we should go to the hospital but the pain was so bad I could not even think. We finally decided to go to a different hospital than the one I had been going to as nobody seemed to want to treat you, they just gave you enough pain meds to take down an elephant.
I was told that the other kidney stone that I developed in 2015 finally dropped. It was high up and to make things more interesting I also had a UTI. They said I could go home or stay overnight to treat the infection. Either decision was fine so I of course went home. :ywow:
The pain subsided after a few days so I was ecstatic! I felt fine until new years day when the pain had returned. I had finished the antibiotics just a day earlier. I had never had the pain return before but I just took more flowmax and pain meds. The pain at this point would come every other day with bouts of nausea. Then on January 5th I started throwing up, I had no fever but I knew this would not get any better so back to the hospital I went (the good hospital).
Long story short :rof: I had a massive infection from my bladder to my kidney, the 3mm stone got stuck (it is so small even the doctor was surprised that it got stuck). My heart rate was at 148bpm but still no fever. I started to get chills but I presumed i was just cold. They gave me pain meds right before going into the OR to get a stent placed and I started to get very hot. They though it was a reaction to the pain meds but I spiked a 102F fever in the OR. The doctor said everything was "grossly infected."
This led to a three day stay at the hospital until they got the infection and fever under control. This is where I heard for the first time out of a doctors mouth and not just me asking, Crohns is probably the cause of these kidney stones. I heard it first on here but the other doctors I was going to said nothing about it and dismissed every concern I expressed regarding the connection.
I wanted to express how grateful I am for this forum or else I may have been dealing with this much longer. I have previously read that a poor gentleman had dealt with stones and Crohns for TEN YEARS before his doctors said there was any connection, thanks to everyone on this forum I was able be my own advocate and go to a better doctor who saw the connection. I got the stent removed yesterday and I will be going for a follow up in a month. The doctor believes that the stone passed but there is a small chance it went back up into my kidney (hoping for the best!!) He said I will most likely be places on potassium citrate to prevent more stones from forming which he has placed other Crohns patients on and it seems to work very well.
My question if anyone could answer it would be:
Has anyone taken potassium citrate to prevent stones and if so, does it work?

 

[ronroush7]

Prayers and support

 

[Honey]

Hi Crystal clear,
I am surprised you are tryng to ignore such pain ! I know from experience it is excrutiating and makes you feel sick. You cannot ignore it but please see you medic right away. I believe it is often left to pass through itself. I understand your fears though. You cannot think straight when you are so unwell.
Meds are the first treatment for Crohns and surgery is the last option. I am currently on steroids and may have to go on Humira injections again. I was on Remicade infusions and well for a year until I had to come off due to a reaction.
We are all individuals and symptoms vary and our reaction to meds too! What suits one may not suit another. I hope you feel better soon. Let me know how you are. Love and prayer
:rosette1:::hang:

 

[Lisa]

I have a history of kidney stones also, and have known for years (forget which doctor told me) that they can go hand in hand with Crohns' - or really any issue that causes D and mal-absorption of foods. I go for annual check ups to make sure I'm not forming any more, and my urologist told me that drinking lemonade (the real stuff) helps to flush out the kidneys.

On a good note - since I've been on Remicade (10+ years) I haven't had any new stones form!!!

 

[lisadc1]

I, too, have a hstory of kidney stones. I had two surgeries in the fall to remove them and still have nonobstructing stones in the right kidney. My urologist and GI both explained that Crohns doesn't "cause" kidney stones, but it is a manisfestation of Crohns because of the malabsorption issues with calcium. The uroligist suggested/pushed that I take calcium to actually help prevent the stones. It takes, as he explained, the calcium not needed, and instead of it sitting in the kidneys to develop into stones, helps to remove it from the body. The malabsorption causes it to be depleted from our system and to sit and build up in the kidneys. They can actually test your stones to determine the type and gve meds to help prevent them.

Please don't ignore the stones and let infection set up...so dangerous! I had a friend that went septic and passed away at the age of 39, leaving behind 3 children and a husband. Prayers for your healing!

 

[Samboi]

I get Crohns related kidney stones. I see the urologist once a year and have them checked. He usually blasts them every two years. This keeps them under control and stops them getting too big. And stops them trying to escape at inconvenient times!