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Does anyone with crohns have interstitial cystitis as well?

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Posted 5/5/2015 5:27 PM (GMT 0)
I'm just curious how common it is with crohns patients. I know IBD it's common with patients. But I was wondering if you're on an immunosuppressant wouldn't that keep people from getting IC?
Posted 5/5/2015 8:47 PM (GMT 0)
Yes, I think I have developed this although it's mild at this point still but when I read up on it I found I had many similarities to it (not officially DX with it) but during intercourse for example it feels like I'm getting period cramps and depending on the position sometimes also depends on how much pain I get, but I don't always get it so I wasn't sure if that's actually what I have or if I'm just a milder case of it at the moment.

I don't know if immunosupressants would help or not, I'm only able to use biologics for my CD but you should talk to your doctors about this.
Posted 5/5/2015 8:55 PM (GMT 0)
Ya I have looked up symptoms and other than pain with intercourse I don't have any symptoms but I was thinking if I'm on imuran it should suppress my body and I wouldn't have IC
Posted 5/5/2015 9:04 PM (GMT 0)
I've had IC since about 1st grade. Way before my Crohn's symptoms started. Mine basically feels like a bladder infection, except there is no bacteria found when they test me for it. Frequency and burning pain are my main symptoms. Really don't have issues with intercourse though.
Posted 5/5/2015 9:57 PM (GMT 0)
Ya I had the uti and then for a few weeks was never having frequency after treatment but was having what I thought was bladder spasms. But now it's just constant period cramping feeling, pain with sex, intense cramps with periods and BM and they think IC, endometriosis, or cysts but I just don't think it's IC bc I don't have the worst uti feeling in my life that people explain. Going to the obgyn Monday and just hoping for an answer. Just want to be a normal 23y.o. And have sex lol
Posted 5/6/2015 2:51 AM (GMT 0)
My sister (no Crohn's) has IC, and I saw a urologist and had a scope because I thought I might. Scope was negative, and UTI tests are negative, but I have a lot of frequency and urgency with needing to pee. I even feel like I still need to go when I'm done going. I've just started ignoring it.
Posted 5/6/2015 3:16 AM (GMT 0)
I just thought I broke my pee-er from having to go poop so many times over 2 decades lol, but I do drink a lot of water so I thought maybe that's behind my peeing frequency...I haven't been check for it yet but I monitor it and if it gets worse I plan to get it checked out sooner rather than later.
Posted 5/6/2015 3:59 PM (GMT 0)
I have a lot of pressure on my bladder, especially if I'm at all constipated. I have a physical this week and plan to discuss it with my PCP.
Posted 5/7/2015 1:10 AM (GMT 0)
I just am worried about it because I want to feel better. I notice my symptoms get worse closer to my period and get better with my birth controls pills as the pack goes on. The symptoms come and go but I don't really have any symptoms of IC I feel like other than pain with sex, and possible pelvic pain I guess. I'm just worried because my boyfriend and I have been together four years and are moving in in July and if it were IC it can take up to six months to work and I can't take much more of this.
Posted 5/7/2015 2:49 AM (GMT 0)
There is so much crammed down in there! Ovaries, bladder, intestine, etc. When you have pain it's hard to tell where it's coming from. For example, I get too many dominant follicles when I ovulate, so my ovaries swell up and they hurt like crazy, but it also radiates into the urinary area. Maybe it's something like that?
Posted 5/7/2015 1:55 PM (GMT 0)

scifigal2k said...
There is so much crammed down in there! Ovaries, bladder, intestine, etc. When you have pain it's hard to tell where it's coming from. For example, I get too many dominant follicles when I ovulate, so my ovaries swell up and they hurt like crazy, but it also radiates into the urinary area. Maybe it's something like that?



That's true. Idk it's just annoying because I've been waiting 3 weeks to get this ultrasound and I'm graduating college this weekend and starting a new job soon so I just want it figured out. I'm praying it's not IC but we shall see. That's why I figured if you're on an imunosupressant you couldn't get IC.
Posted 5/7/2015 2:24 PM (GMT 0)
IC isn't autoimmune (or at least doesn't respond to immunosuppressants), so that wouldn't make much of a difference. It is more like IBS than IBD. It responds really well to diet.
Posted 5/7/2015 3:27 PM (GMT 0)

scifigal2k said...
IC isn't autoimmune (or at least doesn't respond to immunosuppressants), so that wouldn't make much of a difference. It is more like IBS than IBD. It responds really well to diet.


Oh ok. I guess when I read about it online it sounded like an autoimmune problem with attacking the bladder wall. My urologist didn't really explain it since my cystoscope and everything looked great. I honestly think it is something like you said, vaginal pushing or inflaming onto the urethra. It's just frustrating because I'm finally in remission with crohns and then this happened. The discomfort is the worst part
Posted 5/7/2015 6:22 PM (GMT 0)
I totally get it - discomfort is almost worse than pain sometimes! So the actual cause of IC is unknown. There will be inflammation, but they don't know what causes it. It could be autoimmune and immunosupressants just can't get to the bladder very easily. Other theories are that bacteria gets in the lining of the bladder and irritates it. There are many other theories. My sister has IC and as long as she follows a strict diet her doctor gave her, she doesn't have any symptoms.

It might be worth seeing an OB about it.
Posted 5/7/2015 7:52 PM (GMT 0)

scifigal2k said...
I totally get it - discomfort is almost worse than pain sometimes! So the actual cause of IC is unknown. There will be inflammation, but they don't know what causes it. It could be autoimmune and immunosupressants just can't get to the bladder very easily. Other theories are that bacteria gets in the lining of the bladder and irritates it. There are many other theories. My sister has IC and as long as she follows a strict diet her doctor gave her, she doesn't have any symptoms.

It might be worth seeing an OB about it.

My vaginal ultrasound is Monday morning! My biggest symptoms are random cramping/burning vaginally, pain with sex and nausea. It's hard to tell since it's so inflamed in general down there. But I'm not peeing a ton like people say they do. I usually pee once for every glass of water I drink and don't normally wake up to pee at night which is why I'm not sure about IC especially because many people haven't said much about intercourse problems.
Posted 5/7/2015 11:49 PM (GMT 0)
Could you just have a super bad yeast infection? I get inflamed with yeast infections and the inflammation pushes onto the urethra.
Posted 5/8/2015 3:37 AM (GMT 0)

scifigal2k said...
Could you just have a super bad yeast infection? I get inflamed with yeast infections and the inflammation pushes onto the urethra.

They found yeast on the first inspection n treated me for it. Which has helped but hasn't made better
Posted 5/8/2015 4:21 AM (GMT 0)
Maybe they didn't treat the yeast long enough. If I do the cream, I need to do it for at least 3 days. If I do diflucan, I need 200 mg the first day and 100 mg the 2nd and 3rd days.
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