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Crohn's and Bladder Problems
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Louise_WebMD_Staff posted:
I am moving this post from Ale so that it gets the attention it deserves.
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ale84 responded:
I got this link off of the Crohns support sight....I have seen a urologist because of constant blood in my urine and urinary tract infections, and also uncontrollable leakage problems. He thinks that I may have arthritis of the bladder and scheduled a test to have a camera put into my bladder, but I chickened out and cancelled because the last time I had a camera in me (for a colonoscopy) I was punctured and ended up with a colostomy bag. So I am very nervous about a "simple procedure" and don't want to go through anything like that ever again. Needless to say I don't think I will ever be able to have another colonoscopy again (and I have crohns disease) but I am too tramatized. So what do bladder issues have to do with IBD's? Nobody has ever mentioned that to me before. Although I did recently read that you can have a fissure to your bladder and that can cause bladder infections. And although I am worried that can be a possible cause of my problems as well. Any ideas to find out what is wrong with me without shoving a camera in there? Unfotunately, I am back on meds again for a urinary tract infection which last year I was on meds for a whole year and couldn't get rid of it and then I had my surgery and it sort of got put on the back burner until just recently I decided to have a urine sample done again and I have an infection again. I can't keep taking antibiotics because I had c.diff in January because of the high dose of antibiotics and immune suppressors I was on. And now I am at an even higher risk of getting c.diff again. So this all really worries me. Any suggestions would be greatly appreciated. As long as you don't lecture me about cancelling me test and letting my fear get the best of me. LOL! :grin:
 
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Louise_WebMD_Staff responded:
Welcome Ale. What meds are you on for your Crohn's? Those can increase the chance of UTIs in and of themselves.
 
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TrudyGERD responded:
Interstitial Cystitis has an association with Crohn's. The thing about IC though is that you may have the symptoms of a UTI, but you won't actually have an infection. When you have the urinalysis for the UTIs, are they being diagnosed by the culture being grown in a lab or are the docs basing the diagnosis on the blood (red and/or white cells) in the urine? In IC, there could be both types of cells in the urine, but there won't be growth in the lab. IC is an autoimmune bladd condition where the mucosal layer/lining of the bladder wall degrades and/or develops ulcers. Based on all my reading on IC, it sound like a bladder version of Crohn's, though I've never actually read anything about the pathology or the tissue and whether it's similar or not.
 
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Louise_WebMD_Staff responded:
Wait Trudy, this is interesting. I took this board because I tend to be the woman who pees constantly and it drives everyone a little nuts. My doctor periodically tests for UTIs and they are oft negative. I have pretty much given up and take cystex for the really annoying times. I had a "straddle" accident as a child that damaged the urethra a bit so I have mostly attributed it to that. I always have been prone to "honeymoon cystitis" types of issues.
 
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ale84 responded:
Louise, I am on 6mp and steroids currently switching from prednisone to entocort. And the other meds I am on aren't necessarily for crohns. I just got off of Imuran a little over a month ago and I was on prednisone at the same time. Last year when I had major problems I was on asacol and prednisone.
 
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ale84 responded:
Trudy, I have never heard of IC....I will have to do some research on this. I always have my urine tested at the doctors office they never send it to a lab. So I guess that makes a difference? I don't know much about these issues at all. Thanks for the response I will deffinitely look up IC.
 
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TrudyGERD responded:
Yes it makes a huge difference. The rapid test at the doctor's office only tests for the presence of red and white blood cells and keytones. When it gets sent off to the lab, the sample will be smeared on petrie dishes to see if a bacterial culture will grow. Whenever Natalie is having a flare of her "undiagnosed" bladder problem, her rapid test always shows low levels of white blood cells (leukocytes), red blood cells and keytones. She never has growth show up at the lab meaning no UTI. She has much worse symptoms when this is the result than when she actually does have a UTI. I put quotes around the word undiagnosed because doctors don't generally believe that children can have IC, but when I describe her symptoms and test results (including an ultrasound that showed thickening of the bladder wall) to people with IC, they all say that this is exactly how they started off as kids. I've unofficially diagnosed her. The test required to actually diagnose sounds horrible to me so I haven't put her through it when we seem to be getting her flares under control without the medications that they would prescribe anyway. In addition to medication there are dietary approaches that can be taken for IC and you know from the Crohn's board that I'm all for that.
 
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TrudyGERD responded:
Louise, I think you're just following me around the boards. LMAO!! A straddle accident sounds HORRIBLE. I'm wincing just thinking about it. I love the term honeymoon cystitis. Yup, only honeymooners can have that problem - NOT. LOL Actually, some people with IC do experience some discomfort sexually, either during or after. When you do get tested for UTIs, do you have even a low level of leukocytes or red blood cells or keytones? Do some reading on IC. There's some good information on the net. I've never heard of Cystex until tonight. I just looked it up and it looks interesting. Do you take the high dose of vitamin C suggested when you use it? Cystex doesn't treat UTIs but it does look like it helps with the symptoms. I read a message board on another site that says it helped people early on when they were first diagnosed with IC but they needed to move on to bigger guns down the road, plus vitamin C is on the naughty list for an IC diet (that's why I asked).
 
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Louise_WebMD_Staff responded:
There you go, 6mp, steroids and Imuran all increase the fun and excitement of UTIs...or at least the possibility of them.
 
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Louise_WebMD_Staff responded:
Hmm...I will check into what my tests actually show. I remember it showing something but "not enough" from what the substitute doc at the general practice said the last time I actually went to get it checked. This was the guy who decided that my left mid back pain must be a car accident the fall before that "I didn't remember". Yes, he suggested I had been in a car accident and didn't remember I had been in one. He also, at one point, after drilling me on the list of symptoms for a uti got frustrated with me and said "I did go to medical school you know". But, really, asking if I had any diarrhea in the past 3 days or nausea or fatigue...silly...I have Crohn's. That is life except when really well controlled which it wasn't at that point. I don't take it with the vitamin c. It does help quite a bit with the symptoms...at least enough so I can sleep or sit through a kid event when bladder stuff is bad. The other bonus--Cystex doesn't turn everything orange yellow like Uristat.
 
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TrudyGERD responded:
Oh, that makes me furious when doctors get condescending like that. I had an appointment with an Endochronologist who pulled that on me. Her line was "You came to me for my expertise, didn't you?" By the end of the appointment, I was practically shaking I was so mad with her (various comments of this sort). Sometimes I hate getting backup doctors. They don't know your history and only look at the one tiny complaint you show up with. Of course I did find a primary that I loved by seeing a backup doc (I switched to him) but that was dumb luck. How can somebody forget a car accident? Grrrr....... I'll look more into Cystex. Maybe something like that can help Natalie through flares. Thanks!!
 
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Louise_WebMD_Staff responded:
He made me more than furious. Fortunately, he seems to have made other people angry since he wasn't with the practice for more than a couple of months. Of course, every time I have that pain reoccur, and I am wincing in pain and my partner asks what is up...I get to say "It was that car accident I don't remember." Good luck looking into the Cystex. I must tell you that I have never actually cleared it with the GI doc or my family practice doc. I tend to be at my worst around 9 pm at night and I don't want to deal with the on call doc to ask a can I take an otc med. It helps. It doesn't seem to make anything worse. Nice and tidy. Then it usually is forgotten in the midst of an appointment where the doc and I already have our own agendas. (Yes, I am a rotten patient!)
 
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msic responded:
PLEASE don't say you are a rotten patient. Don't even think it. You have what you have. Dotors need to deal with it in a professional yet compassionate way. They should not guess. If they don't know, they should say so. It would be nice if they helped you find another person to help you, but that might be a bit too much to ask of a doctor now-a-days. Shaking my head. The clinic that let the horrible doctor go did you a favor. Stay strong and committed to helping yourself have the best life possible. - Msic
 
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dyclay responded:
I have Interstitial Cystitis, (IC), and it is very painful when you are having a flare up. Do you experience pain after urinating? IC pain is severe and comes on AFTER urinating, not during, which is true of UTI. I've had this condition for four years. It took a year to be diagnosed because it is a diagnosed by exclusion of other conditions. Different foods can cause pain in this condition; coffee, chocolate, tomato,fruit, anything acidic. Incontinence is a large part of this condition. Some people with this condition go as often as 40 times a day. In my case, I don't often, I just leak 24 hours a day and have to wear pads. This condition came on me suddenly with leakage of blood and urine. The blood stopped within a day, but the urine never stopped leaking. The pain developed over the next month, becoming more and more severe, until the food angle was discovered. I lost 30 lbs. in a month from avoiding food. Does this sound like you? If it does, I'll hit you back with more info on it.


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