Need Help Please! Think I have vaginal fistula!

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Ihurt

Joined
Mar 16, 2012
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Oh my Gosh, I am really freaking out right now. I have been having some issues for the last week with vaginal discharge ( light yellow to whitish and sometimes pinkish, like blood tinged. The discharge is not smelly. But tonight I got up to pee and when I was standing up air escaped my vagina!! It was like a fart basically( sorry if TMI). Ok, I know something is wrong.

I have not even been diagnosed with crohns disease yet,but have been sick with intestinal issues for almost two years now. My gastro keeps saying IBS. Well I am sorry, but now I am pissed!! I feel like I have been pushed off far too long and now things are bad.

Please help, I dont even know who to call to deal with this, which is likely a fistula of some sort. I mean what else can cause you to have gas come out of your vagina?? I have been trying to get into see my gyne for this discharge but they are booked and I cannot even get in until 2 weeks. What doctor do I call about this?? How do I get it diagnosed if this is a fistula?? I dont know what to do.... Please help advise.......
 
My first question is, are you in pain right now?
IF yes, go to the ER, and they can run a Cat Scan immediately.
But first you need to know that there will be some exposure to radiatiion and without insurance it is very expensive.

They will also be able to see if you have inflammation from your Crohns. I cannot promise that they will do the scan, but if you are in pain, dont wait. I would tell them exactly what you wrote. Explain to them that Crohns causes fistulas and you believe you have one.

Have you had a colonoscopy or endoscopy yet? If so, how recent?

Another option is seeing your GP and let them run some tests that could show what is going on.

thinking of you, and I am so sorry you are going through all of this. I hope you are not alone and have support.
 
Is this causing you pain?

I know in the UK there are NHS drop-in centre clinics, I'm not sure about there.

If you're really worried go to the ER/your version of an emergency clinic (usually it's GP<NHS walk-in centre<ER in the UK)

Sorry I'm not much use,
H
 
Hi Ihurt
Sorry to hear you are having such problems - and it's a difficult time of year to find doctor's appointments available!
Do you have a family doctor, or even a medical centre accessible? Most medico's should be able to do a simple examination to confirm or exclude the probable diagnosis, and facilitate a referral to a GI or GYN specialist if they think that's the condition you're dealing with.



HD
 
Thanks for the replies everyone. I am not having awful pain or anything in that area, just the gas from the vagina and slight discharge. I have a Gastro doctor already so I could call him tomorrow, but i am afraid if I tell him I passed gas through my vagina he will ask me if I have seen my gyne.. especially if I tell him about the discharge.

I have not had a colonscopy yet. I only had an MRE of small bowel which was normal( two months ago). I was going to get the colonoscpy but after I had such bad reaction to MRE the gastro decided the colonoscpoy should wait. I also have IC bladder and get UTI's easily due to the IC. Well after the MRE, the contrast I had to drink gave me bad diarrhea and I got a UTI and have been in IC pain since. He was afraid the colonoscpy would just make things worse for me

I dont want to go to the ER as I am sure they wont do anything and I have a $2,500 deductible. I have been reading that Fistulas are very hard to find, that a gyne cannot even usually see one. I just dont know who to call first, my gastro or my gyne( she may not even know what a fistula is!). I just dont know where to go first.. Can anything else make you fart from your vagina?? I am sooo scared out of my mind. I am scared, angry and worried. Scared because I know a fistula is bad news, angry because I cannot help think my gastro doc should have addressed my pain and issues more aggressively when I was having issues with intestinal pain for almost two years already, and worried as I dont want to be given the run around by my doctors.

What test can they do to see if I have a fistula??? Which is the best test to see it??

Thanks for your replies, I appreciate it. I am literally sitting here it is 4 am and I am just sick with worry.....
 
lhurt, I am so sorry to hear that you are having these issues and know how distressing and worrying it can be, especially when you don't have a definitive answer and solution to your problems.
This is a link to our subforum especially for people with similar issues and you may find answers to some of your questions here.
I think in your situation I would call the gastro doc first. It is horribly frustrating when you have to wait for appointments and results etc. If you can't get to see someone for a while, during that time I you could keep a symptom diary so that you have all the details to pass on when you get to see a doctor. I know I often get upset or distracted by what they are saying and forget to say or ask what I meant to.
In the meantime, I think the fact that you are not having a lot of pain is a good sign in a way in that if there is infection, you would have pain if it is severe.
But pop over to the subforum, because there are several members there who have or have had vaginal fisulas and they would be better equipped to advise a plan of attack.
 
oops , I meant they.
I had an MRI and CAT scan - nothing saw my vaginal fistula until the surgeon was doing a eua to perform a seton placement on the perianal one he knew was there. He noticed it during the seton placement. I had it for years and never realized what it was. Passing gas there is a pretty big sign. Not sure if anything else can do that.

It could be that you make the calls and are referred to a colorectal surgeon. They have a lot of expertise with fistulas. I never saw a gyne for mine, as you mentioned who knows how familiar they are with fistula. I think it is worth a call though just to see what they say.
 
Thank you all for your isight and advice everyone. This is very frustrating. I am just not sure what to think. I mean I am certian that if I call my gastro he will tell me to call my gyne. Also it being the holidays really makes things worse, I mean no one is around. I do have some pain down there, but it is hard to discern due to me have also having my bladder issue. The pain I have is like in the area where the bladder sits in the vagina kind of. For example, when I get checked by the gyne, well when they use the speculum when they open it up, well the top part that pushes the bladder up, that is where my pain is.

I just dont know what to think. I am pretty worried. I mean I felt the gas come out of my vagina, it has only happened once so far. But I always have the feeling like i have air bubbles in there that are coming out all the time( not like the fart I felt come out) but just like there is always tiny bits of air escaping. Not sure if that means anything or not.

My gastro thinks I have IBS so I am afraid to even call and tell his ofice this. It is not like i even have a diagnosis or anything. SHould I wait it out and see if I get more gas coming out to make sure before I call the gastro doc??? I see him on Jan 9th for a follow up appt. Maybe I should call the gyne since I do likely have a infection of some sort going on down there with the pink tinged discharge. Hopefully she will know what a fistula is if I bring it up to her...

What do you think???
 
Well, as long as they don't charge you for a call, I say call them both. What's the worst they can say? Please don't let the worry of what they may or may not think put you off from calling. I would bet that if you tell either of them that you have passed gas through your vagina and are afraid that you have a fistula that they will not laugh, they will not tell you that you are crazy or anything. I expect that they would take it very seriously. If they do blow you off or act flippant in any way, I'd find new doctors.

As you mentioned it is very posible that no one will be around to answer your question until after the first but I think most places have a doc on call who could return your call with some advice.

I never really have pain with my vaginal fistula - occasionally a twingy pain but thats it.
 
Thanks Sailorluna for the reply,

What test would be best in telling if it is a fistula??? I mean I cant afford a ton of different tests that may likely not show it. Is there any simple test that is better at seeing one?

I called the gyne and of course was switched over to the nurses answering system. I left her a message explianing my symptom and saying that I really need to get in to see my gyne right away! My period is due on the 3rd. I told her I needed to see my gyne before that otherwise it would e pointless as she will never be able to see anything while I am on my period.

I guess I cn give the gastro doc a call and see what they say. I am not even sure he is in the office due to the holidays. But like you said, I guess it wont hurt to call..

Hypathetically speaking, if I do have a fistula , by leaving it go for a period of time would this make things worse ??? I really appreciate your advice, thanks for helping me. I am a Basket case with worry right now..









Sailorluna said:
Well, as long as they don't charge you for a call, I say call them both. What's the worst they can say? Please don't let the worry of what they may or may not think put you off from calling. I would bet that if you tell either of them that you have passed gas through your vagina and are afraid that you have a fistula that they will not laugh, they will not tell you that you are crazy or anything. I expect that they would take it very seriously. If they do blow you off or act flippant in any way, I'd find new doctors.

As you mentioned it is very posible that no one will be around to answer your question until after the first but I think most places have a doc on call who could return your call with some advice.

I never really have pain with my vaginal fistula - occasionally a twingy pain but thats it.
Click to expand...
 
Hi Ihurt,
I'm so sorry to think of you sick with worry at 4am.
It IS possible to 'suck' air into the vagina involuntarily and then push it back out like a fart. I don't know if its time to panic just yet. I know how easy it is to freak out, a year ago I had some pinkish vaginal discharge, then reddish/brownish, and I had only just had my period 10 days ago. So I was sure it was a vaginal fistula (I had just had a peri-anal one a month before), I cried the whole day, cut my trip short (i was on vacation) and rushed to my GI, who sent me to a gynecologist. It turned out to be an irregular period, due to being so stressed and exhausted... It's hard not to imagine the worst, but really this may not be anything. Has anything else happened since your original post?
 
I have had mine since my first child was born almost 10 years ago. When I tried to talk to the ob about how I as passing gas "from the front" she told me that having babies sometimes changes things down there and not to worry about it. I was far to embarresed to say that I occasionally was passing feces there as well. And since she was so positive that it was normal I just accepted it as a normal side effect that could happen from child birth. I did not know I had crohns and had never heard of a fistula.

It never showed up in cat scans or MRIs. The gyne never saw it during exams it was not seen until the surgeon was giving me a eua (exam under anesthesia) for my other fistula. I think that the vaginal ones are just very hard to detect. I expect they will want to do an MRI to check.

Mine went undiagnosed for 8 years and never really caused problems other than occasional embaresment a couple bacterial infections that I never realized were caused by that. Even when they found it all they did was put a seton in for a couple months. If you really don't have crohns I think there are surgical options to close it, for me I have far to much crohns activity to even explore those options.

I know they are scary but I don't think you have to worry too much unless the pain is bad or you spike fever that will not go away.
 
I agree with helena101 also you may want to contact the doc that handles your IC since fistulas can be associated with IC.
 
I think the fact that this has only happened once..I wouldnt be so concerned. Let me tell you why..I have learned thru the years (because of super bad anxiety) and the internet :( that things are not always as they seem. I KNOW you are scared but try to take a step back and breathe. I remember when I was diagnosed with Crohns I was scared about everything going on in my body. I had a fear of a vaginal fistula one time because when I would go number 2 and would wipe it seemed to be really messy..so I though OMG feces is coming out of my V!!!! ACK but...I watched the next few days and it was just my mind over thinking. I would make and appt with both the gyne and gastro for sure. But please try not to over think I know its difficult because I struggle every day with over thinking...I would say about 95% of the negative things I over think never come true :)
 
Thank you all for the advice, I really appreciate it.

I a waiting for my gyne office to call me back to see when they can get me in. I guess I can call my gastro docs office and let them know what is going on too. At least I have an appt with my gastro on the 9th.

I have been having issues with my intestines ( bad pain and cramping and feeling horrily sore inside my intestines). I have not even had a colonoscopy yet. I am going really have a long talk with my gastro doc!

Hey Clash, I have never heard of any IC patients having fistulas. IC is a disease where the bladder gets inflammed and causes severe pain in the bladder. It does not affect other organs, it is confined to the bladder. It does make one very prone to getting UTI's though.

Thanks again for the replies. I appreciate all your support.. I just hope my gyne can get me in today..I hope she does not tell me to go to the ER. If she does, I am dropping her and getting a new gyne!
 
Hey Ihurt, I hope you are doing ok. I am in a similar boat. I have one "official" fistula with a seton and suspect I have a vaginal one because I have similar symptoms that you are describing. I even have found stool when I wipe up front. It's really scary. I've talked to my GI about it and when I first noticed he asked me to consider remicade to heal and that I may need to see my OB/GYN. So that was a couple of months ago. Since then I developed another abscess...I suspect fistula outside my anal area but closer to my vaginal area (lovely TMI).

So I'm starting humira to try to clean the whole mess up. I hope sharing my story helps. When I got my first fistula I thought it was going to change my whole life..with the seton and all. But actually it's not that bad. It's amazing what you can adjust to.

Good luck and I hope your drs get it together and get you on a good path towards healing.
 
Sorry I wasn't explanatory, not that it is associated with IC but that since you keep getting UTI's which has always been associated with your IC(rightly so) but can also be a symptom of a urinary fistula. Wow, I hope you can follow that cause I'm confusing even myself now!!
 
Lol, i know what you mean, Clash, and was thinking the same. I had similar symptoms to the OP and my fistula was bowel to bladder.
Darned disease - it can get so complicated.
 
Thanks for the responses.

Danu: Wow, I am sorry you are dealing with fistulas. I have not even gotten a crohn's diagnosis yet! I have not yet had stool come out of my vagina( oh god, I hope that does not happen). I am so prone to UTI I am sure I would get one if I had poop coming out my vagina for sure. But also, I do not have diarhea either so maybe that is why I have not seen stool yet. Maybe it only comes out when there is dirahea.I dont know... I am disgusted right now. I got a call back from my gyne's office and talked to the nurse and she was so rude and horrible. I explained to the nurse that I was feeling worse and that I passed Gas from my vagina last night and , are you ready for this: She said "it is normal to pass gas from vagina at times"!! I was like, I am sorry but in all 38 years I have never passed gas from my vagina until now, except for when I had sex in the past( and it is normal to pass gas after sex!). She then told me that My issues were not an emergency, and that if I felt it was that I should go to the ER. I then mentioned to her about fistulas. OMG, she then goes on a tangen saying that Fistulas have other symptoms like passing stool in the vagina! From what I read, fecal matter only passes through the vagina when one has diarrheaha with the fistula! She then goes on to tell me that she cannot take serious anything I read online that it means nothing!!

I am beyond pissed! Needless to say, I am not bothering to go back there! I told her that my period was due Jan 3rd and that I really wanted to get in before that just to get the pelvic exam and possible culture done. She just went on and on about how I would just have to go the ER. Well sorry, but Screw her!!

So now I am waiting for my gastro doc's office to call me back and see what he has to say about this issue. And likely I will get his nurse and have to explain myself and what it going on. I am sure I am going to be told to just keep my appt. on the 9th and he'll talk to me then... I am just so disheartened. I mean for the gyne nurse to tell me it is common to pass gas from the vagina was just unreal..

Clash: Oh no worries, I understand what you are saying, and it does make sense. I just have to get a doctor to listen to me and help me which is turning out to be almost an impossible feat...

So that is where I am right now. Gyne is no help. Now I need a new gyne and it will be hard to find one to get into to quickly.. I am so depressed...:(
 
Oh lord. That is exactly what you don't need right now! Your GI will give you some guidance and maybe even can refer you to a better OB/GYN. Hopefully it isn't a fistula :/ but if it is, there is treatment for it! I only have stool in my vaginal area when I have loose stool or D. I have had air pass a few times. I haven't had a MRI or anything to confirm presence/absence of other fistulas. With all the inflammation around my anal area and other issues I am having my dr just wants me to start humira. Fingers crossed that it works. I do my first round when I get home from visiting family on Monday.
 
Hey Danu,

Thanks for the reply. I just talked to my gastro nurse and she said she use to work for the gyne's office in the hospital for a few years. She said my gyne was awful to treat me that way. Anyow, she said that sometimes you can pass gas in the vagina. She said it is a hole and it is possible to pass gas. But she did get me an earlier appt with my gastro doc for Jan3rd so that is good. She did say that I would still be referred to a gyne though for my symptoms. So she gave me the gyne practice's phone number there. I called and got in with a male gyne who has been in the practice there for awhile, he treats a lot of women who have gyne cancers from what the lady said. I see him on Jan 2nd. I just pray my period does not come early! So at least I got something in the works...

It is good that your Gastro doc is willing to try you on the humira. I have not even been diagnosed with crohns yet so I am not sure what to do. I mean I wonder if a gyne would even be able to see a vaginal fistula? From everything I read, they are hard to detect. I know my gastro doc will likely well, maybe want to do a colonoscopy, but not sure. I mean then there is the issue of, if I do have a fistula, I think the last thing i should do it a test where I have to drink stuff that causes diarhea, I mean wouldn't it just leak into my vagina is there was a fistula??? I am already VERY prone to UTI's as it is due to my IC bladder.

So that is where I am at right now. At least I got my foot in the door. So are saying not everyone with a vaginal fistula has to have surgery to fix it?? I really do not want to go through surgery, I mean I have so many issues and do not want my IC to get flared or any worse. That IC pain is the worst of all pains that I ever have endured. When I was at my worst with the IC, I literally prayed to die it was so painful....

Thanks again for listening and I just I will wait and see what happens..








Danu said:
Oh lord. That is exactly what you don't need right now! Your GI will give you some guidance and maybe even can refer you to a better OB/GYN. Hopefully it isn't a fistula :/ but if it is, there is treatment for it! I only have stool in my vaginal area when I have loose stool or D. I have had air pass a few times. I haven't had a MRI or anything to confirm presence/absence of other fistulas. With all the inflammation around my anal area and other issues I am having my dr just wants me to start humira. Fingers crossed that it works. I do my first round when I get home from visiting family on Monday.
Click to expand...
 
Hey, that's good news! That gyne definitely shouldn't have treated you that way. It's mortifying enough having to describe these symptoms to someone without them being nasty about it!

Yeah, I understand that meds like humira and remicade help heal fistulas. They are serious drugs though (remicade is a IV infusion and humira comes wth preloaded shots you inject yourself). And there is a small risk to develop lymphoma. But for me its worth it to heal the fistulas and inflammation in my colon (that puts me at higher risk for colon cancer anyways)

So I think there are ways to detect vaginal fistulas, like MRIs? But I don't have experience with that so I'm not sure.
 
I'm not sure if this will help but I have had major problems with fistulas, so know the fear and frustration you are dealing with. I had crohns for 10 years when my fistulas started and got wrongly diagnosed 6 times! My crohns was seriously flared but was missed due to another disease I had. I had severe diarrhoea, (30 times to the loo a day), and never had anything one out my vagina. I had a lump on my vagina and was sent to gynie. Got sent away twice with opinions of cysts, gland infections etc. one gynie said it could be a fistula, and I told a&e this in one of my many visits and I still got sent away with meds and opinions of hematomas! Eventually I got admitted on Boxing Day and went in for fistula surgery by a gen surgeon (no bowel specialists in over Xmas). It made the original lump ion my labia swell even more- to golf ball size and I was in extreme agony. When I pushed the lump down the air came out of my vagina ( sorry re TMI but there's no avoiding it in this subject). They made me wait for MRIs but the pain got too bad and they took me in again and I got a seton suture. ( first fistula was laid open). After Xmas my bowel surgeon was back and wanted another look under anaesthic, it turned out I had another one and two in my labia with "dead ends" so half of my labia was removed and another seton fitted. That was over 3weeks in hosp and recovery was another 2 weeks, I could not sit for 5weeks. My case is extreme, but it was missed for 3 months. My fistulas are so severe, and my bowels are so damaged due to the timescale, that I'm now fully incontinent at 34yrs old. I'm sure your case is not half as bad as mine, but I cannot stress how much you need to nag for help. If I was you I would have a good look down there and a feel around and see if you can feel anything or move any air yourself. Like I say, I had 5 fistulas, and no discharge whatsoever.

I wish you all the luck in the world this gets sorted for you. Problems for a woman front and back are awful. Fingers crossed for you x
 
Thanks for the replies Danu and Emma,

Emma: Oh my gosh, what a nightmare! That is so frightening. Yeah, this is what I am afraid of, if I go to the gyne and he does not see anything out of the oridnary, he is Not going to go any further. As far as my gastro doc, I Have NOT even been dx with crohns yet! I also have a lot of other health issues ( interstitial cystitis, fibro, MCS( multiple chemical sensitivity), possible undiefferenciated connective tissue disease, etc..) My gastro thinks I have IBS. The only test I have had done are stool cultures, and blood work and MRE of small bowel. We did not do the colonoscopy due to the risk of side effects and me being ultra sensitive. After I had the MRE well the contrast I drank reacted very bad on me. It gave me severe diarhea and I went into an IC flare and got a UTI. I had the MRE in October and am still suffering the after effects of it now still!!! It also made my whole gut feel worse. So I am a bit leary with tests.

See, I know my gastro will NEVER even go into the fistula thing unless I have some sound proof that something is going on, like fecal matter coming out or a lump or some sort of proof. I was told by my gyne's nurse( the one I was trying to get in to see and they would not give me an appt, so I dropped them) that it is Normal to get flatulence out of the vagina! She said everyone gets it.... So I am no sure what this new gyne is going to say. I have a close friend and I asked her if she ever had gas come out of her vagina and she said Yes, she said it happens to her too. Is this normal?????

Here is my question, Is there usually a lump or sore or something down there that would be visible to the eye if you have a fistula? I mean otherwise, I just dont think I will be able to convince any of my doctors to check for this unless I had other issues besides the one time I had gas come out of my vagina. I mean I also get like these bubble feelings in there, but that could also be anything I guess. The pinkish discharge I was getting is a concern to me as well. I have not had it for a couple days now, but still, I was having it for 9 days after my period started and that is not normal. I also have shooting pains in there, but I also have IC bladder so it is so hard to tell where the pain is coming from sometimes and it is not all the time, it is sporadic.

Thanks again for the reply, and again I am sorry for all you went through. Too bad you cannot sue the doctors who messed you up. I mean that is terrible. No one should have to go through something like that, I am so sorry...
 
Ihurt I wish I could give you more help and advice with how to diagnose this, but mine was a visable lump. The vaginal one was, to be fair though one of the others could not be seen. I have one still that has never healed, and it is a small hole that is visible. I personally have never has any gas down there so would say to get it checked. Fistulas can appear anywhere I think so I'm guessing its likely even if you can't see it. When in hospital I was with two women who were having treatment for fistulas and they didn't have crohns or any other diseases. I thought you only got them if you had crohns, but apparently anyone can get them it's just not as common. One of the websites I looked at said "If you have a rectovaginal, colovaginal, or enterovaginal fistula, you most likely have foul-smelling discharge or gas coming from your vagina." And the test they listed was "The use of dye in the vagina (and maybe the bladder or rectum) to find all signs of leakage." Maybe you could suggest this , if it didn't interfere with your other issues.
I really feel for you, your really having a rough ride x
 
When I had my fistula ( not vaginal) it was extremely painful. At the very least you need a cat scan.. If you cant have any testing how would it even be resolved..
 
Thanks for the replies. I am in a tough spot, that is for sure.

Mary, Yes, it is rough with the tests. For me it depends on the test I suppose. I mean I can do a scan, I just cant do all the laxatives or clean outs.. That is what will put my IC in a huge flare and also IC makes me prone to getting UTI's and when I get diaraha, I will get UTI's sometimes. I have been prone to them for years now( even before I got any intestinal issues). Can they do a Scan without any contrast?? Though I am not sure they would see it, and from what I have heard, they even miss them with the scans too. I ust do not know what I am going to do. I will talk to my gastro doc when I see him in a few days.. I see the gyne on Wednesday and will talk to him too. I feel so down and out and depressed.

I am confused too. I was telling another friend of mine about what is going on and the whole gas from the vagina. She said it was normal too! She said she has gas and air come from the vagina at times too. I was shocked. I mean I ust have never had that happen before. I mean so far it has only happned once to me and that was the other day in the middle of the night. It has not happened again yet, but sometimes I do these little bubbly feelings, but not sure what that is. I mean it could just be when I am moving around or something. My gastro's nurse ( she use to work in a gyne office) she told me too that women get air from the vagina. She said it is a hole and air can become trapped in there and come out like a fart. I am keeping an eye on it to see if it happens again.

Thanks again for the replies, I really appreciate the support..
 
Hi Ihurt,
I hope you make some progress at your upcoming appointments! I think the waiting and worrying is the worst. Regarding the vaginal fart, I TRULY think you don't have to worry about that. It happens. I am able to do this at will, draw air in and push it out of my vagina. Not that I have much use for this skill! It is a particular muscular contraction that pulls the air in. I am a Pilates and yoga teacher, and it happens by accident to my students quite often. They are usually mortified, as they were not aware of the air getting sucked up there in the first place, nor are they able to control its escape. I have seen this happen enough times, to enough people, to be 100% sure it is not (in and of itself) cause for concern. It is very possible that somehow in your sleep, or when getting up, air got pulled up in there, and then got pushed out. I assume you must have passed wind again since then, and that it was a normal fart, from behind, with no air escaping from in front? If so, I wouldn't worry too much...
You are right in saying that fistulas are hard to spot on the scans. Since tests are difficult for you I wouldn't waste any on searching for a fistula, not until I could get the colonoscopy and confirm whether its crohn's or not. Because even if you do have a fistula it will probably be handled very differently if its due to crohn's or something else. I don't think anyone is going to put you on Humira if they don't know for sure that you have crohn's. So we are talking surgery only as a treatment option. I imagine even the way it's handled surgically might be different if its crohn's related or if its not... I know that the surgeries are often complicated, and many women just prefer to live with the fistula... So it's quite likely that hunting for a fistula will get you nowhere, even if you have one, and even if they are able to find it.
I think priority number one has to be to get the colonoscopy done. I hear you when you say it can cause you huge issues with your bladder and UTIs, but I truly don't see any way out. :( :( :( I think if you don't do the scope and find out if its crohn's you are going to go crazy! Anyone would! You mentioned stool tests, have you done a faecal Calprotectin test? Its a completely non-invasive test, and a very sensitive one, its pretty unlikely for that to be normal if you have active IBD. I think its common to have normal blood work and IBD, but very unusual for the calprotectin to be normal too... Maybe that's a good place to start until you feel up to facing the consequences of the colonoscopy??
You are going through so much right now, it seems never-ending... I hope things start to come together soon for you and you get the right treatment... Please keep us posted on how things go this week.
Roll on 2013, I hope it's a happier, healthier year!
 
Air from V

Ihurt,
Not sure if the problem your are talking about it what I have experienced, but with the birth of my first child, I had much gas through my vagina, there was a few hole like tunnels from the colon to the vagina. Started out with gas then bowel later for the holes grew larger. I had three surgeries to repair and finally it stopped. These sound like fistulas to me. Get it checked up from your gastro, they will do some simple test to see if they are passing gas from the colon. Good luck, this can be fixed.. At that over 40 years ago, I was never diagnosed with crohn's. It was a tear from giving birth, but had problems with this over the years, and as you grow older it has come to crohn's and HS :goodluck::goodluck:
 
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You can sometimes get a little "gas" build-up if you have an active yeast infection (candida albicans), or even from intercourse.
 
Thanks for the replies ladies, I appreciate it. Lisakuny, Thanks I am going to the gyne in a couple days, will find out if it is an infection or not...

Helena: Yes, I actually did have a stool calprotectin test done about three months ago and it was normal. I do understand about getting the colonoscopy, you are right, I know I will eventually have to do this. I think my gastro doc juts got leary of doing it due to what happened to me after the MRE test of my small bowel with getting the nasty diarha and UTI and IC flare. The biggest issue with it is that I am allergic or just cannot take the antibitoics they use to treat UTI's. I have had adverse reactions to a lot of them. I also have been on a low dose antibitoic for 4 years to keep the UTI's at bay. I hate being on them as I know they are alone toxic for the body and gut and I get side effects that are not good. I think the gasrto is afraid that he will do the scope and not find much and then I will be worse in the end due to the scope. But you are so right, it is driving me crazy, I mean I feel so awful and do not know what is going on. Is the fecal calprotectin test very reliable in term of differentciating crohns and IBS?? My pain can be awful, I get crampy sore feelings all throughout my intesines. That is my biggest symptom. Some days I just sit all day with the heating pad. I have never heard of IBS being that bad.

Thanks for the tip on the gas from the vagina. No, I have not had it happen again since that night. I do get little bubbly feeling down there, but that may be just from some discharge or something. I am going to the gyne also due to the fact that I have been having pinkish discharge often. I mean after my last period, I had this pinksih dicharge for like over 10 days after my period ended. Also just want to make sure I dont have a yeast infection or other infection. My discharge has NO bad smell either, not sure if that means anything or not. I have been chronically ill for the last 9 years with all kinds of stuff. I have seen soooo many doctors in the last 9 years and to be honest, I have not really been helped much by any of them. I am losing faith is western medicine for sure. One thing I do know is that most western med doctors do not know much about these chronic type diseases, it is so frustrating.

Thanks again, you really were very informative. I think you are right, It would better to first look more into the crohns thing before I hunt down fistulas, I mean unless I started passing poop from the vagina( God forbid), then I would pretty much have my answer to both issues. Thanks again.
 
Ihurt,
I hear you about western medicine... It just seems that the drugs fix one thing but break another...

I wasn't at all sure how accurate the Calprotectin test is for differentiating IBS from IBD... I have a hard time understanding scientific articles (but I want to get better at this!) so I tried to look it up for you. Here's what I got, in a nutshell:

an abnormal test result for calprotectin means there is a 91% chance of IBD. A normal test result for calprotectin reduces the probability to 3% (1% to 11% depending on the study).

Here is where I got it from, I hope I haven't misinterpreted it:

http://www.bmj.com/content/341/bmj.c3369

BUT, your symptoms do sound too severe to just be IBS. And of course there are a lot of cases of IBD that are not clear-cut or easy to diagnose... What can I say? :( I guess you need to discuss it some more with your doctor... Maybe repeat the test even, as its possible the lab made a mistake (this has happened to me) or that you have more inflammation now than you did 3 months ago and the test could be positive this time... It seems worth it before going ahead with the colonoscopy, since the scope potentially could cause other issues for you...
I hope the appointment with the gyne tomorrow goes well. Fingers crossed your period stays away till the 3rd!!
 
Thinking about it some more, I would definitely repeat the calprotectin test. They only test a TINY part of the sample each time, and since the inflammation is not evenly spread out through the intestines, the Calprotectin is not evenly spread out in the stool sample. It is more concentrated in some parts of the sample than others, so it is possible to get an artificially low or high reading depending on which bit of the sample they happen to use for the test. Normal is less than 50. I have had a result of >1800 once, which the lab then re-checked and corrected to 290. Since this seemed suspicious to me I sent a new sample to three labs at once a few weeks later. I got 35, 90, and 365, from the three different labs, when they each got a sample from the SAME BOWEL MOVEMENT. So, I cannot say from my experience that the test is 100% accurate, since results can differ so much between labs, and even within the same lab when they repeat the test on the same sample. So it definitely would be worth repeating the test... If its higher this time you can feel a little more confident about having the colonoscopy. If its still low, that doesn't really tell you anything, but you have nothing to lose...
 
Hey Helena,

Thanks for that information. I will request the calprotectin test again. Yeah, I am not sure how accurate these tests are either. I had a different test done by a natural hopistic doctor who did a comperhensive stool test and that was three years ago. He did a test called a fecal lactoferrin test which also checks for inflammation. Mine was positive back then, though I had NO real intestinal pains or anything. Well I brought this up to my gastro doc at my last appt. and he said something about the calprotectin test being more accurate than the lactoferrin test. He also said that other things can raise the lactoferrin test like infections and such. I guess the calprotectin is better than the lactoferrin in terms of checking for IBD. But again, I agree with you, I dont think any tests are fool proof it seems.

Yeah, I will definitely talk to the gastro and see what he says. I know when I tell him of all the hardship I had with the MRE with the whole UTI and bladder pain, I am certain he will not want to do the colonoscopy on me, or he will throw the ball in my lap and let me make the choice. I will ask to do the calprotectin test again just to see what it says. I had no idea they were that variable though. I mean for you to get three different numbers on the same stoop sample is crazy.Does not seem that reliable huh??

I also have been reading on the whole bladder fistula thing as well. I was dx back in 2006 with IC of the bladder. Well I know the only thing that has helped my IC is antibiotics! I wonder in the back of my mind if my bladder issue could be a fistula all along.. But I will say that when I was dx with IC, I was not having any lower abdominal issues at all at that time so Maybe it is not, I dont know. How would they detect a bladder fistula anyhow??? I have had my bladder looked at and biopsied as well, so I am not sure if they would have been able to see a fistula when doing a bladder scope or not. I just dont know.. it is all so frustrating. I mean my bladder is soooo sensitive. I also find it odd that antibitoics are the only thing that helps my bladder pain( even when my urine cultures come back negative). What are the symptoms of a bladder fistula besides infection???
 
That's interesting about the lactoferrin. I think it's supposed to be as reliable as Calprotectin, I'm not sure though.
It could be as you say that the bladder issues are due to a fistula and stem from crohn's... How confusing... It must almost make you wish for a diagnosis, even if its something bad, just so that you know what you are dealing with... I can't imagine how psychologically exhausting this all must be. What happened with the naturopath, were they any help?
 
Well, The naturopath really did not look at my chronic illness as one disease. His whole theory was that any chronic illness is a whole body issue. He did not even go by " names" of diseases. He said that is all it is, a made up name for something bigger. He was into ALL natural things and diet for helping me get better. I stopped seeing him due to not being able to afford it. Most naturopath docs do not accept insurnace.

I even asked my gastro doc about the lactoferrin test and he did not seem concerned at all. I just dont get it. I am so confused. I mean I have basically been a frickin guniea pig and poked and proded for the last 9 years and have been given really NO help at all and NO answers to why I am sick.( the reason I have lost faith is doctors).

I mean, I am certain if I told my gastro about my whole fistula worry, I am sure he would tell me I am looking to much into this. But that is easy for him to say. I mean It is hard to be sick and not know what is going on. If I had a bladder fistula, would I have had other symptoms like smelly pee and fecal matter coming out?? Also, that means I if I do have one, I would have had it for 8 years now as that is when my bladder issues all started!! I just dont know....

Would they have seen it if I had a fistula when they looked in the bladder and when they did the biopsies??? I just dont know. It seems as if that would be next to impossible to get dx...

Yes, I am so cunfused and fed up. I dont trust most doctors as it is since I have been led astray by so many already.. My anxiety levels are just horrible right now. I mean I am clearly stuck between a rock and hard place to be sure. I mean going through all those invasive tests to even locate fistulas would likely be very harmful to me due to all my issues. Even the colonoscopy would likely cause me to be worse. I mean also my fear is my gastro will not find anything if he does the scope and I will be worse for wear from the scope( that was his theory, especially after how I got worse after the MRE and the MRE found NOTHING). It was a waste......

I am so fed up and do not know what to do..... :(
 
I completely understand. It's been a very long time, and its confusing, upsetting and frustrating.
I still think you should do the calprotectin test, and the colonoscopy. As far as I can see, finding out if you have IBD or not is the most important part of the puzzle right now.
But maybe your docs will have other, better suggestions. Hope all goes well.
 
lhurt, I really feel for you :-( I think helena 101 is right and that you need to establish once and for all if you are suffering from IBD or not and if it's the root cause of your bladder issues.
To answer your earlier question, the tests I had to diagnose the fistula were a CT scan and an MRI. With the CT scan, the GI said he had found signs of gas bubbles in the bladder. I'm not sure why contrast would aggravate your symptoms as in my case they didn't. Well, I don't think so, as they were pretty severe anyway.
First time round, I had bad pain in my pelvic and ileum areas, cloudy and bubbly urine and occasionally passing gas from 'the wrong place.' But the worse thing was the frequency and urgency, but you'll know all about that :-( I was waking up three or four times in the night to pee, sometimes having to go again almost as soon as I'd just gone, a lot of pain and burning when peeing and a couple of embarassing wetting myself incidents. Just generally feeling s*!t.
I had a brief respite after Remicade infusions but started to get symptoms again about 6 months after the last one. This time however, I had shooting pains from my bowel to my bladder area and eventually started passing small amounts of foody/poopy looking material and tested positive for UTIs again. Antibiotics would ease the symptoms a bit, but they'd be back as soon as I stopped them.
I know there are people on the forum who have a fistula but little or no symptoms, or symptoms that come and go. There are also many who've only discovered they have one when they've had to undergo surgery for other disease related issues.
See what your GI says about the possibility of a fistula. A scope is not the best test for detecting one. I had a clear scope pre-op but the fistula showed up clearly in an MRI.
I hope, hope, hope that they are going to get to the root of all this for you x
 
Thank you Helena and Grumbletum for the advice. I agree, I need to find out what is going on here. I guess there is no point in worrying myself sick until I find out absolutely what ir wrong( easier said than done though :) )

I will talk to my gastro doc when I see him tomorrow. I am seeing the gyne today, but more so that he can find out why I have been having the light pink discharge issue this last month.

I will keep you all updated on what happens with my appts. Thanks again for all the help and advice and support, I greatly appreciate it..
 
I wish you well with your appointments! Hopefully your doctors pin point what is going on and get you the treatment you need to start feeling better!
 
Thanks Danu for the reply and support.

Well I went to see the gyne this morning. I told him about the pinkish discharge. He examined me and said he did not see anything unusual and did not see any irritation either. He said he thinks I may be having very slight mid cycle bleeding that is so slight that it only comes out as a lightly tinged discharge. He is not sure, but he did not seemed overly concerned. I also asked him about the air I passed through the vagina the other night. He said that air can get caught in the vagina and it is normal. I told him of my worry about the fistula issue. He said NO that I did not have one. His theory is that I would have other symptoms besides passing wind down there. He said I would have a foul discharge as well as possible fecal matter in the vagina. He said I would be a mess. I then explained about my intestinal issues and how I still have yet to be Dx with crohns. His answer was that if I had a fistula I would likely have rectal involvement that would be pretty bad as well which could cause the fistula. So he was not much help, he kind of just fluffed that all off. He said if I am having breakthrough bleeding, it is very slight right now. He said if it gets worse in time, then I may have to go on BC pills. No way am I doing that. I have already a coagulation issue and am prone to blood clots. I am not taking BC pills! I can only hope that this mid cycle bleeding does not get any worse I guess.

I see the gastro tomorrow. I am certain he is not going to do much, but we will see. I am going to ask to do the calprotectin test again. HOpe he will agree to it. I feel so tired of all this. I mean I feel like every western med doc I see, I get the same reactions! They just seem not to know anything! It is hard when you have a history of chronic health issues. It seems like doctors cannot see past your other issues and they just automatically assume that my issues are just anothe part of being chronically ill and just chalk it up to that. Anyhow, so that is where I stand right now at least with the gyne....
 
Ok, so today's appointment wasn't ALL bad. I know you want some answers and you didn't get any, but still its a little reassuring that he doesn't think you have a fistula. Hopefully tomorrow's is more productive. If he doesn't agree to the Calprotectin test, can you arrange to do it and pay for it yourself? I don't think it will be that expensive... I just hate to see you get stuck, I think it's important to keep taking steps forward and resolve this, find out whether its CD after all or not...
Let us know how it goes tomorrow.
Xxx
 
Thanks Helena,

I think the gastro doc will let me do the calprotectin test again if I ask him, at least I hope he would, I mean what would it hurt right??

I had a follow up appt. with my regular Primary care doc earlier this evening and I told her about everything. She said she totally understands my frustration. I asked her about the whole fistula thing and the gas from the vagina that I got that one night. She said she would not overly worry about the gas from the vagina yet. She said sometimes you can get air out of the vagina. She said to just keep an eye on it and see if it happens anymore.

She thinks that I should eventually get a colonoscopy, but she thinks I should wait a bit. She thinks I have to recover from what the other test did to me. She said not to scare me, but she said the colonoscopy can be very hard on some people, especially people who are very sensitive and have other health issues(like I do). She said that it is the best test in terms of Dx and or ruling out crohns though as they can do all the biopsies and such.
She said that it would be worth it to have the gastro repeat the stool test and maybe even blood work to look to see if there are any vitamin deficiancies and such. She told me her sister has crohns disease. She said that a lot of the times there are nutritional definiancies when one has crohns.My regular doctor said that there are some people who have IBS and it can be severe for some. I just told her I just cannot believe IBS can be so bad. So anyhow, I will ask the gastro to redo some of the blood work too when I see him tomorrow. I am going to lay it all out on the table and see what he says. What else can I do.

I will let you know what he says after my appt. Thanks for being so wonderful and for all the support!!!
 
Update:

Well, I went to see my gastro doc today. I told him of all my concerns. I asked him about the gas I passed from my vagina. He said that he wants me to keep an eye on it, and if it happens again and again to let him know about it right away. He said he does not think that I have a fistula, but still to keep an eye on it. He said a lot of times there can be other symptoms like bleeding from the rectum as well as a fever and bad pain in the rectal area as well as fecal matter coming from the vagina as well.

I asked him about the whole colonoscopy and he said that he agreed that I should have one done, but he said Not now. He said we should wait awhile to let things calm down. Oh , he also looked at my MRE of the small bowel report again and said that they likely would have picked up a fistula. I asked him how they would pick it up since it was only of my small bowel( I mean I did not have to do a clean out or anything, I just had to drink that contrast stuff). He said still, an MRE can see the bowels and with crohns, you would be able to see inflammation with the MRE. He still thinks I may be battling a nasty case of IBS. I aksed him about the calprotectin test and he said that it is not 100% reliable. He said you can have a slightly elevated calprotectin and Not have IBD. He said they are finding that people with IBS can have low levels of inflammation in the intestines. He gave me imiprmamine to take. It is a low dose antidepressant that is used in low doses to help control pain. He said he is hesitant to do the scope due to it making me possibly worse especially after how I reacted with the MRE. He did say though that If I keep getting air from my vagina then I would have to do an MRI or something just to see, but again I would have to drink contrast and that would mess me up but good. He still thinks I have IBS, just a nasty case of it.

So that is where I am. Oh , he also mentioned this medication , I think it is an antibitoic, I cannot remember the name, it starts with an X though. He said it can help some people with intestinal issues due to baterial overgrowth. I did not opt for that yet, I told him I would keep that on the back burner for now. I still feel at a loss. I mean I explained to him that I am worried I have something more than just IBS. He said he really still thinks I have IBS, but will do the colonoscopy, but wants to wait on it for now. He said we have to let my body recoop from the MRE and let my bladder calm down more. So that is where I am now. I just dont know what to think. I am still freaked out over the whole vagina gas. I mean I have never had Air come out of there( except during sex). I mean that was so weird. It has not happened since, but I am keeping a watch. I am so freaked out about it though. at least if it were to keep happening, he said to call him. I wont have to worry about seeing a gyne for that!

So that is it, I am kind of still in the same spot. I mean How much can an MRE o the small bowel see? He said that colonoscopy is the gold standard in terms of dx crohns since you can obtain biopsies. But he said the MRE is very good at seeing fistulas. I just am not sure how they would see it unless I had an empty colon. He said it can still see the outside of the intestines and the pelvic area. So I guess I have to try the imipramine and see if it helps and go from there. I mean If it does not get better or I get worse, I guess we will end up doing the scope later on. What are your thoughts on this?
 
I bet the medication he mentioned was Xifaxin. You might research it and see if you are willing to try it.
 
I was just going to write you to ask how it went...
Kind of disappointing, you are still nowhere. But both the gyne and the GI sound nice, like they are really listening to your concerns and taking them seriously. Is rifaximin the antibiotic? Are you going to try that too?
I have heard that too, that IBS can cause marginally raised Calprotectin. Wouldn't it still be worth doing, in case you are more than marginally raised?
In any case, I guess there is nothing to do now but wait till your bladder is a bit better.. :(
But you'll get there! Eventually you'll get the scope and find out if its CD. In the meantime all anyone can tell you is to try not to worry too much (though of course that's not really possible...) xxx
 
Thanks 2thfairy and Helena,

Yes, that is the antibitoic he was talking about. I guess I am going to try the imipramine first and then the Xifixan if the imipramine does not work. Then if I am still in agony and nothing is working, well then we gotta do the scope and that is that. I am still worried about the vaginal air thing. I mean I keep getting all these different opinions. I have talked to a couple friends who say that they have never had that happen except with sex. Then I talked to a frined who does have air come from the vagina. also my gastro's nurse said that it does happen since the vagina is an open hole, air can get up there are later on escape as a vagi fart I guess. I just have not had that happen to me before the other night. I am keeping a diary to see if it happens again. I also get little bubbly feelings in there when I am sitting down, like bubbles trying to come out. I mean I also do have my period now and so it is hard to tell anything at this point. I just pray I do not have any fistula there.. Would gas come out all the time if there was a vaginal fistula? Meaning like would it happen more than just once in a while???
 
You will know soon if the gas that you are passing is a concern. I passed gas from a openning for along time after surgery. Sometimes and openning can close and that means a healing. If you don't notice anything more, it may have healed or very small. You will be okay even if there is a openning. The body does work well at healing these things. Watch it and it will reveal something more. I had a dye infusion and xrays that showed the openning. Surgery to close off the openning and after almost 6 month it closed fully. Good luck and time and patients with this is all you can do, after what your gastro told you.
 
Hey Kad,

Thanks for the reply. Did you have pain with your fistula when you had it?

My gastro said there would likley be pain and also fever, but I guess everyone is different. I guess I will just have to wait and see. This is so frustrating and worrisome....








kad said:
You will know soon if the gas that you are passing is a concern. I passed gas from a openning for along time after surgery. Sometimes and openning can close and that means a healing. If you don't notice anything more, it may have healed or very small. You will be okay even if there is a openning. The body does work well at healing these things. Watch it and it will reveal something more. I had a dye infusion and xrays that showed the openning. Surgery to close off the openning and after almost 6 month it closed fully. Good luck and time and patients with this is all you can do, after what your gastro told you.
Click to expand...
 
So sorry you're going through all this. It's horrible when the doctor just refuses to hear what we're saying. Don't hesitate with antibiotics - I learned in the 20+ years when I was undiagnosed, that Crohn's responds to antibiotics. I didn't know what I had, but I knew it was bad, and I figured out that it went away when I took antibiotics.
 
Hi MissUnderestimated,

Which antibitoics did you take that helped you? Was it rifaxamin?? That is the one that the gastro offered me..
 
I had no pain.. It was hard for me to make sure no infection started. Sit bath were a regular part of the bathroom experience. Antibiotics were given, not sure what kind. Finally healed after 6 months. Good luck as if this is in fact what is going on. It will be alright, patients is needed here, try not to worry, it causes stress and you don't need that. So sorry for your worry.
 
Thanks Kad for the reply. It is so confusing. I mean some say it would cause pain, others say no pain. My gastro says I would have likely low grade fever, pain, and fecal matter come out of the vagina, yet some say they do not have these symptoms. I guess it depends on how big the fistula is in terms of symptoms. I am trying not to worry, but it is hard :(
 
I haven't read the whole thread, so I'm not sure if this has already been said, but it is normal to pass gas from the vagina occasionally - it's normal for me anyway (and happened before I developed health problems). Not frequently enough for it to be an embarrassment or anything, but it probably varies from woman to woman, with some having it never happen and others quite frequently. I can see you might worry if it's not normal for you, but I don't think it's necessarily anything sinister.

I'd be more concerned about the discharge, especially if it's bloody. That could be a vaginal infection and I would have thought when you see a doctor about it they could test a sample. I've done that once before when I suddenly had thick discharge (but no blood or smell or pain), the result from the swab came back negative, and the discharge cleared up on its own. If it hadn't, my doctor said we'd try anti-biotics, but as it was I didn't need them.

Of course your problem may be very different from mine, and you should see someone about it (I would think gynae? I just saw my GP, not sure what the US equivalent to that is), but as long as nothing else happens or gets worse, please don't panic yet. :)

Edit - ok I just read some of your update posts, and it looks like you're a bit further forward with knowing whether or not it's a fistula. Breakthrough bleeding could be an explanation for the pink colour, though excessive discharge isn't normal if it continues.

I also just wondered if you'd be able to tolerate tests on the upper digestive system better? Because sometimes things like barium tests or endoscopies don't require a laxative prep (which I seem to recall is the main reason you can't have a colonoscopy yet?), they just require you to fast before hand. Do you have symptoms of upper digestive tract problems?

I was also remembering one time I was waiting for a test, and another patient had come in for a colonoscopy and was waiting too. It turned out (you know there's no privacy in hospitals here, so I could overhear everything) he'd misunderstood the instructions and hadn't taken the laxatives. They just gave him an enema there and then and he went in for the colonoscopy. Also when I've had colorectal surgery, I've always had an enema at the hosptial, no laxatives. If it's the prep that's the main problem, do you think it would be worth asking your doctor about alternatives, given your circumstances? Or are there other problems that are preventing you from getting tested?
 
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Hi Unxmas,

Thanks for all the info. I have not yet had another gas out of the vagina episode so far, but am keeping my eye on it. I hope it was just a fluke, but only time will tell I suppose.

I am not having many upper gut issues really. I have had upper gut issues in the past. I have had like 7 upper endoscopies in the last 8 years, the last one being about 5 years ago. My upper gut got better after I went on a gluten free diet( even though I do Not have celiacs, I am just gluten sensitive I guess). I get occasional burning symptoms in my upper gut from time to time. I do however have H-pylori and that would likely be the reason. My gastro said not to treat the H-pylori since I am allergic to ALL the antibitoics that they treat that with and besides my gastro said that they are not very good at irradicating this bacteria anyhow, it almost always comes back. But that being said, he also said most everyone has H-pylori in the guts but most people never get any issues with it, only some do go on to develop ulcers and such.

The reason we have avoided the colonoscopy is the prep. ANything that is going to give me diarhea is a big issue. Everytime I get diarrheaha it REALLY flares my bladder up, or when I take certain meds. Like when I did the MRE of the small bowel, that contrast I had to drink really irritated my bladder and put me in an IC flare and I also got a UTI ( likely from all the diarhea that the contrast caused). The biggest issue it that I am not able to take many antibitoics that are used to treat UTI's as I have adverse reactions that are pretty bad so have to avoid a lot of them. I was on a low dose antibitoic(keflex) to prevent UTI's and it worked great for 4 years but after this MRE, I got immune to it. My Primary doc said that the test just upset my flora and it just likely changed things inside and now the keflex just wont work anymore. Now my doctor has me on a low dose augmentin for a couple months to see if this helps, and so far it is. Both my GI doc and my regular doc agree that if things keep up I should have the colonoscopy, but not now. My gastro said it WILL mess me up, no doubt about it. He said he really does not want to put me through all of that if he can avoid it, at least for right now especially after how I reacted to the MRE of the small bowel.

I have thought of the enema thing as well. Just that I would have to have access to a shower to shower immediately afterwards. I have to shower after every bowel movement to make sure I stay clean down there to help prevent UTI's. My late Urologist told me this when I was dealing with all the UTI's a few years back when my IC started. He said I am very prone to getting infections( likely the IC makes me even more prone) and I have to be VERY careful and stay clean down there. He said when a woman gets lose stools or diarrhea, that it is impossible to keep it from spreading all around down there and if you happen to be prone to UTI, you will get one. He said it literally only takes one bacteria to get near the area down there and it can make it's way into the bladder via the urethra very easily, especially e-coli as that bacteria actually has feet and can move around! Pretty freaky.

My mom when she was alive had a similar issue. She had to do the colonoscopy and they gave her the enema but it did not clean her out too good at all, they did not get a very good picture at all. I dont think enemas will work very well. I mean I remember being told you have to clean out from the top down in order to get a good picture. I would hate to do the whole test and it be a flop! Over here in the good ol United States they charge you thousands for this test. I believe a colonoscopy is like over$ 5000. I have a huge deductible and would really want to get a good picture if I had to go through it as I would not be able to afford to do it again...

Thanks for your thoughts. I am keeping an eye on the discharge too. It kind of happend all month last month after my period. I mean it was not alot of discharge, and it was very light pink tinged. But still, that is not normal. I am going to keep an eye on it this month. I have my period now and will see how it goes. The gyne did not think it was infection at all, but who knows, and naturally when I went to see him, there was no discharge at the time!!! ( how typical right??)

I just hate not knowing what is wrong. I mean I get why my doctors are apprehensive about putting me through the test and they have good reason. But at the same time I HATE not knowing. I mean it is hard when you are in pain and you have no clue what is wrong. I mean sure, he says he "thinks" it is IBS, but "thinking" does not really tell me much at all! But this continues and does not get better or gets any worse, then he will do the colonoscopy, we will have no choice. Thanks again for the advice, I really do appreciate it. I hope you are doing well...
 
Having read a few more of the posts on this thread, I wonder if the nurse was dismisive or the gas thing because she has it happen to herself all the time, and so assumes that's how it is for everyone? I think she was correct to tell you it was ok, but wrong in the way she said it.

Regarding the colonoscopy, I guess if I were in your position I would make the decision based on the likelyhood that there will be a time in the (not too distant) future when you will be able to tolerate the prep and procedure. If that is the case, then I think I would put the Crohn's stuff out of my mind until that time came, and in the mean time focus on getting better from your other health problems or just on things unrelated to health.

If not tolerating the prep is going to continue indefinitely though, in that case perhaps you should just go through with it and get it done and put up with the consequences. At least you wouldn't be in limbo anymore. Perhaps the doctor who's saying it isn't a good idea at the moment could help you decide how likely each scenario is.

Alternatively, you could weigh up whether getting answers about the bowel stuff is more important than risking a UTI. But it does sound like you'd feel better if you made a decision one way or the other, perhaps?

I think when deciding you should also keep in mind that a colonoscopy might find nothing at all. That's useful as it rules stuff out, but although Crohn's is a possible cause of your symptoms, and presumably there are other conditions that could be picked up on a colonoscopy that are also possibilities, it might be entirely negative - which would probably mean you end up with a diagnosis of Irritable Bowel Syndrome or something similar. I think if it were me and that happened I would be disappointed, because after all the worrying about it, it ends up providing no satisfactory answers (and I don't even have to pay for tests, for which I am hugely greatful to the NHS!).

I think I just wouldn't pin all my hopes on a colonoscopy (not that you're doing that - but in the past I sometimes approached tests in that way, and learned it wasn't a good mindset to have). Or it might be better to not rely on getting a clear diagnosis at all, because sometimes testing just doesn't explain all our symptoms. Although I got diagnosed eventually, after many years, I still have some symptoms that remain unexplained, but I've decided to just accept that because I don't want to go through more tests. My main conditions are diagnosed, and I see getting those primary diagnoses as a chance to now stop putting myself through tests and to stop seeing consultant after consultant. For me, the stress of the medical appointments outweighs the need to have complete explanations.

I know you're in a very different position because even some of your main symptoms have not been diagnosed, but it does help to remember that diagnosis isn't the be all and end all. Perhaps focussing on symptom management may be better for you, at least for a while or until you're able to have a colonoscopy?

Sorry you've had such a hard time (and for the length of this post lol!)
 
Unxmas, thank you for all the advice, it is greatly appreciated.

I totally agree with you on the whole testing bit. I mean I have been through a lot of testing in the last 9 years for health issues I have. Not many of the tests have been very useful, in fact if anything, they were just very expensive.

I mean I was hoping the MRE of my small bowel that I had in October would have given a clue to what is going on, but it did not. It did not show anything. The test cost over$ 6000. Thankfully insurance picked up most of it. I mean yes, there is that thouht of what if the scope does not show anything?? That is what my gastro doc told me. He said he is afraid he will go in there and not see much and then I would be worse for the wear due to all the prep and the test itself. My regular doctor said she has had patients who are healthy and go in for the colonoscopy just due to age and all and a few have never been the same since, they have developed bowel issues from the colonoscopy and all the damage from the prep. She said this obviously does not happen to everyone, but she has seen it in a few of her patients that underwent a colonoscopy. That is why I think they are in no rush to do it.

My gastro doc is a pretty honest type of doctor. I mean he told me that there are risks with having a colonoscopy. He said most doctors will Not tell their patients this. He said most people do fine with no complications, but there are ones that do have complications( preforations, infections etc...). I told him I thought that was very rare to happen and he said, No not really. He said most doctors just do not talk about it. I am certain if I had no other health issues he would likely not be so hesitant about doing it.

I mean right now my bladder is getting better, but I am also on a low dose of augmentin daily in order to keep things at bay there. I dont want to get back in that hell right away, that is for sure. But I have decided that if I get Any worse I am going to ask him to do the scope. I mean like if I start having nasty diarha, then I will do it, I mean it wont matter at that point since I would already have diarrhea so I would likely get a UTI anyhow.

Gastro doc wants me to try the med imiprmaine. It is a low dose antidepressant that is suppose to help with pain. I dred taking it as when I took elavil a few months back it flared my IC bladder horribly. Well this drug is a sister drug of elavil! But I guess I have try it and see or how else will I know.

Thanks again for the all the advice, you are very sweet to take the time out and help me. Thanks so much for the support..
 
I took Keflex at first, then later Cipro. I'm not recommending that you get antibiotics, I was just sharing that I had been through something similar because my doctors wouldn't believe what I told them. I ended up tricking them into giving me the antibiotics. That's not really a cure for this kind of disease though, and can have other serious effects.

I was just desperate for something, and doctors didn't seem to be able to diagnose what I had.
 
When you go for a colonoscopy they should give you a form stating all the risks. My mum has a colonoscopy every few years because there's a family history of bowel cancer, so since she turned fourty or something she gets checked. She's never suffered as a result and she's had about three now. I know you're particulaly prone to the complications, but most people do have colonoscopies without problems. (When my mum does the prep I joke that now she knows how I feel every day!).

The risks of damage being done during a colonoscopy are actually very low as far as I know, so I'm not sure what your doctor meant, unless he's considering it in relation to non-invasive tests or not getting tested at all.

The prep is also extremely unlikely to cause any kind of permanent damage (I've done them before). The possible side effects can sound scary, but the percentage of people they happen to are not. Either way, if you want to have a colonoscopy the risks or things like perforation are always going to be the same.

Do you know for certain that is was the MRE prep that caused this latest problem? Is there any chance it was co-incidence or some other factor causing it?

And is it very likely to cause a UTI? I'm sure you do everything to keep clean - is having diorrhea certain to bring it on?

I have had diorrhea on a daily basis for over a decade, and also have to use a pad for incontinence (bladder and bowel), and have never had a UTI or any other kind of infection down there other than the one-off minor vaginal infection I already mentioned in my previous post. I may just be completely immune to infections of this type, but I do also make sure I stay as clean as possible, having more than one shower a day and carrying clean pads and underware when I go out. (This is probaby more information than you'd like to know!)

I'm just checking that you aren't worrying more than you need to (you have enough other things to worry about as it is!).

It does sound like your expectations are realistic, and I can see why it's so difficult to have reasons both for and against having it done. I also know how difficult it is not having a diagnosis for so long.

I really hope you get some answers soon.
 
I just think that the gastro was telling me that there is a risk of issues with the scope in general. I think though what he meant is that it happens more than one would think. Like for instance, I asked a nurse a few years back when I was having an upper scope done about all the risks. She told me that oh no, there are hardly ever any complications from an upper scope, that only happens with the lower scopes, and it is extrememly rare even then. Well I told my gastro doc this and he said that yes that is true that it does not happen consistently, but it does happen and it is not rare, he see's it all the time. They just do not tell patients about how much it does happen I think is what he was saying..... But of course for the majority of people, well they do fine, especially if they have no issues going in, meaning they are only doing a scope as an age related thing..

Yeah, I am fairly certain I would get a UTI from having diarhea. A couple years ago I got the stomach bug( that is when all my intestinal issues took off actually after that), well I got bad diarhea and within two days I got a UTI and my IC flared up. My regular doctor said that it is likely because I am so prone to them that I get them so easily. Wow, you are so lucky never to have had to deal with UTI's, they are hell. I am positive that the contrast I had to drink irritated my bladder bad. Now as far as the UTI, well I just assumed it was the diarha that caused the UTI since I had the diarrheaha when I had that stomach bug 2 years ago and it also gave me an infection. The chemicals in the contrast or prep drinks alone I think are what irritates my bladder due to the IC and then that sets me up for the infection is my belief. The chemicals inflame my bladder and then the bacteria can take hold very easy. That is what my regular doctor kind of thought.

I am in a pickle of sorts to be sure. I mean I am certain I will have to eventually go through the scope to find out what is going on, I cannot keep living like this with no relief. I mean I am sorry, I just cannot believe all this pain I have 24/7 is just IBS. If it is IBS, then man, I am the only one I know whom has IBS this bad! I mean I do not even have all the IBS qualifications. With IBS you are suppose to have constipation, diarhea alternating( I do Not). You are suppose to feel relief after a BM ( I do not, I always feel WAY worse). I tried explaining this to my gastro doc but he claims IBS can manifest in many ways. Maybe he is right, I do not know.

I also have a rash under my left breast, not a huge rash, but it almost looks like tiny little bumps together in a patch. They itch intensely and even hurt as well. I have heard that people with crohns can have other manifestations like skin issues. Not sure if people with IBS do or not. It is so odd.

Thanks again for all your help, I appreciate it. I need all the support I can get:)
 
I'm glad you found my reply supportive - I did worry after I posted that it sounded too much like I was doubting what you're saying, which I didn't mean to do, I was just checking I understood all the facts of your situation.

There is a category of IBS in which people have only diarrhoea or predominantly diarrhoea, and another where they have only or mostly constipation. Since doctors are probably labelling hundreds of different conditions as IBS - whenever they can't or won't find another cause for digestive symptoms, basically - it can vary hugely in its symptoms and severity. From what I understand, it's only certain symptoms like fevers, weight loss, and bleeding that can't be part of IBS. Also I think getting diarrhoea at night is a sign it's probably not IBS (I get that, plus weight loss, I've had a fever with pain a few times but not often, and a little bleeding but not nearly as much as some Crohn's patients get.). And unfortunateley IBS can be really painful and debilitating.

I can see why being prone to UTIs would go along with having them connected to many triggers like bowel preps. I guess it's the same pattern I get with digestive problems: when I was a kid and my digestive system was healthy, I could eat what I liked and take meds without a problem. But when my disease started, it seemed like every little thing could set me off. Now my stomach gets messed up from certain foods and many medications (antibiotics, hormone meds (birth control), vitamin pills, Ibuprofin, etc., etc.).


But I think the possibility of perforations from the colonoscopy is something you shouldn't worry about too much. Every patient has the same risk regarding that, and since you've got major additional things to worry about, it's probably better to not overthink those other possibilities.
 
Thanks Unxmas! I appreciate your help and advice. I guess I will play it by ear for now. But If I start getting worse I am going to insist upon the scope, I mean I have to. I cannot keep on going not knowing what is wrong... Thanks again... Big hugs to you!!













UnXmas said:
I'm glad you found my reply supportive - I did worry after I posted that it sounded too much like I was doubting what you're saying, which I didn't mean to do, I was just checking I understood all the facts of your situation.

There is a category of IBS in which people have only diarrhoea or predominantly diarrhoea, and another where they have only or mostly constipation. Since doctors are probably labelling hundreds of different conditions as IBS - whenever they can't or won't find another cause for digestive symptoms, basically - it can vary hugely in its symptoms and severity. From what I understand, it's only certain symptoms like fevers, weight loss, and bleeding that can't be part of IBS. Also I think getting diarrhoea at night is a sign it's probably not IBS (I get that, plus weight loss, I've had a fever with pain a few times but not often, and a little bleeding but not nearly as much as some Crohn's patients get.). And unfortunateley IBS can be really painful and debilitating.

I can see why being prone to UTIs would go along with having them connected to many triggers like bowel preps. I guess it's the same pattern I get with digestive problems: when I was a kid and my digestive system was healthy, I could eat what I liked and take meds without a problem. But when my disease started, it seemed like every little thing could set me off. Now my stomach gets messed up from certain foods and many medications (antibiotics, hormone meds (birth control), vitamin pills, Ibuprofin, etc., etc.).


But I think the possibility of perforations from the colonoscopy is something you shouldn't worry about too much. Every patient has the same risk regarding that, and since you've got major additional things to worry about, it's probably better to not overthink those other possibilities.
Click to expand...
 
Just wondering if you got any further with this? Are you still having symptoms? Hope things have settled down a bit.
 
I would agree with your dr about the colonoscopy risks. I had mouth ulcers and a little bit of mucous in my stool, had an endo/colo and ended up with a rectovaginal fistula, that in hindsight I realize started immediately post-colonoscopy. Trust your gut instincts. No pun intended.
 
Wow, that is awful, I am so sorry that happened to you! Did they find crohns when they did your colonoscopy? How did they treat the fistula?? That is so awful. Believe me I have heard a ton of stories about colonoscopy's gone bad. My former gyne whom I have known for years( she delivered me, she was more like a mom), well she told me back in the day that she was getting ready to have one done due to age but her collegue had one done and it preforated his colon and now he has a colostomy!! That scared me to bits and I was not even having gut issues at that time, she was just telling me the story.

Anyhow, that is awful what happened to you. Did the GI admit that the scope caused the fistula??








flowergirl said:
I would agree with your dr about the colonoscopy risks. I had mouth ulcers and a little bit of mucous in my stool, had an endo/colo and ended up with a rectovaginal fistula, that in hindsight I realize started immediately post-colonoscopy. Trust your gut instincts. No pun intended.
Click to expand...
 
Well, I do think something is messed up with my mucous membranes anyway, but I've had 2 colonoscopies with biopsies, one before and one after the fistula, and both were negative, with no real indication of disease, aside from the fistula sight. I got diagnosed with crohns based on the fistula, mouth ulcers and a family history, but I'm not confident in that dx.
I had a flap surgery a month ago that failed and actually made everything a lot worse. I'm going for testing for other Things with internal medicine, as I have a lot of symptoms that don't jive with crohns, so we'll see.
 
wow, I am sorry you are going through all this. I hope your doctor can figure it all out and you can get some answers and help.. Have you seen a rheumatologist? Maybe they can help, I mean since they deal with different immune disorders, especially if you think you have something other than crohns.

One thing I was thinking is that Behcets disease is an autoimmune disease that can mimic crohns disease. It can cause terrible ulcers in the mouth and even down below as well as joint pains and eye issues. You may have already heard of this disease but I just thought I would mention it since mouth ulcers and digestive issues are symptoms of Behcets disease. ( I am not sure if I spelled that right, but you can google it).

Hope you feel better soon!





flowergirl said:
Well, I do think something is messed up with my mucous membranes anyway, but I've had 2 colonoscopies with biopsies, one before and one after the fistula, and both were negative, with no real indication of disease, aside from the fistula sight. I got diagnosed with crohns based on the fistula, mouth ulcers and a family history, but I'm not confident in that dx.
I had a flap surgery a month ago that failed and actually made everything a lot worse. I'm going for testing for other Things with internal medicine, as I have a lot of symptoms that don't jive with crohns, so we'll see.
Click to expand...
 

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