So Scared - for Colonoscopy on Monday - need support.

[CanuckDuckie]

Hello,
I am new here. I am so stressed out and worried and don't know where else to turn.

I am a 45 yr old female here in Canada. In Feb 2012 I began experiencing intermittent explosive (and unpredictable) diarrhea. Thought it might have been a side effect of meds I was taking (Zoloft) so dose was decreased. By the summer of 2012 the diarrhea was getting worse. I went to see my family doctor and requested a Colonoscopy. Easier said than done, the process here is to be put onto a wait-list to first see a GI Specialist and wait-list is long. I finally got called to see GI Specialist a couple of weeks ago and am scheduled for Colonoscopy and Gastroscopy on Monday (Jun 24).

Sometime in the spring of 2012 I began passing gas (rectal gas) through my Vagina. Of course I shared this with my family doc (GP) but she just quickly attributed it to my having decreased tone to muscles of pelvic floor - which I did not agree with (I am an RN by the way). I tried to explain that the gas I was passing was odorous, like rectal flatulence (farting). I did my own reading up and was concerned about possibility of Rectovaginal Fistula. She brushed that off stating if that's what I had I'd be passing stool through my vagina.

This has been most frustrating, I know my body. I know when something is not right. I know the difference between just "air" coming out of the vagina and actual smelly flatulence.

Now in Nov 2012, I began experiencing fecal incontinence (only rectally). It would happen when I'd get very sudden abdominal cramping and literally had 10 seconds to make it to the bathroom. Sometimes I just couldn't get there fast enough/get my pants undone fast enough. It was like I didn't have very good anal sphincter control. Never before in my life have I had diarrhea and not been able to make it to the bathroom so to me this was different and indicative of something else.

My GP just figured (without doing any testing) that I must have "IBS."

So I finally get into see GI Specialist a few weeks ago, I explain my entire history and symptoms. He schedules me for Colonoscopy and Gastroscopy, says I may have IBS. Told him that years ago, as a totally incidental finding, I was told I had diverticulosis. Told him, too, about my concerns re: having a possible RVF (fistula). He sort of blew it off too for at that time I was not passing stool through vagina.

On Jun 6th when having a rather severe bout of abdominal cramping, I again couldn't quite make it to the bathroom in time and I had some fecal incontinence of diarrhea rectally (as noted on the pad I wear) PLUS for the first time ever, I noted a small amount of liquid stool further up on the pad, from my vagina area. I was mortified, trying to tell myself that maybe it wasn't from vagina...but I took a piece of toilet paper and rolled it up tight like a tampon and inserted into vagina and sadly there was liquid stool on it.

I immediately let GI Specialist office know of this new development. As a result, specialist arranged for me to have a special/urgent Contrast Enhanced and Endovaginal Ultrasound done; had it done about 4 days ago. As the U/S Tech knew I'm an RN, she told me (when all tests done) that it showed I had:

1. thickening to the end of my small intestine, commonly seen in ppl w/ Crohn's.
2. something "abnormal" lower down to where a rectovaginal fistula might be.

She said to me, "it will be interesting to see what the Colonoscopy shows."

As you can imagine, I am terrified and am imagining the worst. I am fearful of having cancer.

I would have never thought I had Crohn's - I had stool for Occult Blood done several months ago and it was negative. I surely have not had any weight loss (I wish!). I get diarrhea about 3 times a week......there is no rhyme or reason to when I have it....it doesn't seem to correlate whatsoever with what I eat or when I eat. I have ruled out any food sensitivity to eggs, dairy. Tried probiotics with no improvement. Have tested negative for Celiac. They did stool testing for things like infection, ova & parasites, clostridium, all negative. I did try Imodium and Questran for the diarrhea but both made me constipated which was no picnic either so stopped those.

A few days ago I had diarrhea and in the toilet I noticed what appeared to be a large clot, though not red in color. I've been paranoid that since having Stool for OB tested months ago, that maybe I AM having blood in my diarrhea that I just can't obviously see. I know it's TMI but I took some toilet paper and tried to inspect this marble sized mucousy clot....it wasn't blood.

I am just a nervous wreck. Perhaps it's due to being a nurse but I am fearing the worst. I don't feel that my diarrhea and symptoms are bad enough to be Crohn's but maybe I'm wrong? I keep thinking maybe it's cancer.

There has been a large natural disaster where I live and the hospital where I'm having the colonoscopy done on Monday is cancelling all elective surgeries and non-urgent procedures. The GI Specialist's nurse cancelled everyone else's tests for Monday but told me she didn't want me to have to wait until August to be rescheduled. I sense that perhaps she's reviewed my U/S reports (she confirmed she has them and will ensure GI Specialist reviews them prior to doing Colonoscopy) and there may be info I'm not aware of that's caused her to feel that it's critical i get these tests done ASAP.

I sometimes also notice, like today, that when I rarely have a formed stool, it's much thinner than normal......and that concerns me, too.

Thanks for any support or experiences you can share.

Kindly,
Lisa

 

[dramaqueen]

Hi there Lisa,
That is a huge amount to be going through. I'm sorry I can't offer the advice or experience you really need in this particular area, but I just wanted to leave a message so you don't feel so on your own. I was originally diagnosed with IBS and after a year of many problems including sometimes uncontrollable diarrhea, I finally had a colonoscopy and diagnosed with Crohn's. It is a good thing that you are having the test done as soon as possible, it means more time to examine the issue and resolve it. This very well could be Crohn's disease and not cancer, although obviously be wary with what you read on the internet, at the bottom is an article relating to the gynecologic aspects of Crohn's, it may ease your mind until you get some results. In the mean time, it's a cruel waiting game. I wish you all the best, please post to say how things have gone,
Ellie x
http://www.aafp.org/afp/2001/1115/p1725.html

 

[Grumbletum]

Hi Lisa and a very big warm welcome to the forum Glad you found us. I'm so sorry you are having all these symptoms and I understand your concerns.
Many of the symptoms you are describing are consistant with IBD, but I guess you know that being a nurse. After a read around the forum, you'll find that there is such a variety and range of degrees of severity and symptoms amongst members.
I didn't have major problems with diarrhea, but did find I had 'slimy' stools and mucosy lumps like you describe. The thin formed stools can be a result of inflammation causing narrowing of the bowel, or it could be caused by a stricture.
It's good that you are having the scopes and I believe it is common in Canada and the US to knock you out completely for them? We normally have twilight sedation in the UK.
Colonoscopy is a good test for confirming inflammation of the bowel but is not the best test for tracking down fistulae, so I would think that you'll also need an MRI or CT scan at some point.
I know it's easy to say don't worry, but difficult to do. I think they may not want to postpone your tests because you've been ill for some time and that is very distressing and wearing. My fistula was bowel to bladder and - having tried a range of meds and having it heal temporarily - it opened again and I too began to pass faecal matter when urinating. I was actually better in some ways at that point than I had been for months and looked a bit of a fraud compared to some of the other poor souls in the ward I was in. But when they established that the fistula had opened again, they suggested surgery straight away as the constant UTIs I had might damage my kidneys.
When are your scopes scheduled for?

 

[CanuckDuckie]

Hello,
Thank you so much for the responses, bless you all.

My Colonoscopy and Gastroscopy are scheduled for Monday (Jun 24) so a couple of days from now.

Here in Canada they do twilight sedation as well for these.

The GI Specialist who's doing them is apparently one of the best in dealing with inflammatory bowel issues.

I'm hoping that the special contrast enhanced ultrasounds I had done 4 days ago (done specifically to check for a rectovaginal fistula) will be helpful to him in seeing if I have one. Well I must, there's no other reason that I'd have passed diarrhea through my vagina on Jun 6th (and months of passing rectal gas through vagina prior to that).

I was told when I had my ultrasounds done that the endovaginal ultrasound they did was good at detecting a fistula. They also injected me with contrast and did a special ultrasound of just my small intestine. The Ultrasound tech told me that there were 2 areas of abnormality.......obviously it was the radiologist who told her that (the radiologist had come into the room after the first ultrasound done to ask me questions as she was trying to determine if the fistula was upper or lower and based on the answers i gave her she decided it was a lower one...and that's when she said that they would do a special contrast enhanced ultrasound of just my small intestine).

I'm hoping that the GI specialist will maybe be able to better interpret the so-called "abnormal" findings from my ultrasounds, being that that's his specialty. In a way I almost wish the tech had NOT told me that there were 2 areas of abnormality...........because of course that's just had me thinking the worst since being told that.

I was so in shock when she was telling me this, I was trying to remember every single word she was saying but I was too scared so I forgot the exact words......but she did say for sure that the was thickening at the end of my small intestine that's commonly seen with Crohn's.........and then when I asked her if radiologist could see a rectovaginal fistula she seemed to say that this couldn't be seen "BUT" that there was some kind of abnormality seen in that area. I do know that if a fistula is small enough, it would be hard to detect. I suspect mine isn't that large if I've been passing rectal gas vaginally for 15 months and only RECENTLY have I passed diarrhea vaginally.

 

[upsetmom]

:ghug:..I just wanted to wish you all the best for your colonoscopy and gastroscopy.

 

[Crohn's gal since 1989]

Good luck tomorrow! My GI sped me in for my last colonoscopy ( I had 7 years of what I thought was a good remission). He rushed me in based on the blood work my GP had done as he could see I was in active Crohn's based on my levels. I too understand how aggravating our health care system can be. I had 9 months straight of explosive diarrhea before my medical community came up with the diagnosis of Crohn's.

 

[afidz]

I'm sorry this is happening. Unfortunalty, before any of us are diagnosed, our minds are left to wonder and we start thinking the worst. Try not to stress until you have a reason to stress. You may very well have Crohn's or Colitis. Crohn's presents itself differently in everyone. There are some people that never have diarrhea that get diagnosed. The digestive tract it very complex, and since there are so many different parts to it, it only makes sense that it effects everyone differently. I hope that your scope goes well on Monday and you can get some answers shorlty. Let us know how it goes

 

[really_worried]

hey I just wanted to wish you luck for your procedure... I know what it feels like to be needing support at a time like this!!
I think you will feel much better once you actually KNOW what the deal is so you can make an informed decision about how you want to deal with things moving forward...
All the best

 

[Karo]

Been thinking about you and your procedure today. hope everything is working out ok and you will be getting back on track. Karo

 

[Traumanurse]

Wishing you the best Lisa and wondered what you found out today.

I know it's scary, but I just think it's almost always better to KNOW what you're dealing with than go on wondering. I feel so bad when reading posts from the "Undiagnosed Club" on this forum. Some of them have been at this for years with no answers.

You hang in there and let us know when you can.

 

[Ribo]

I was so in shock when she was telling me this, I was trying to remember every single word she was saying but I was too scared so I forgot the exact words.......

I suspect many of us have been in this position, and afterwards you're left trying to reconstruct the conversation.

Hope the test went well and provided some insights. Hang in there, these forums are great for support and sharing thoughts without embarrassment. Everyone here has had some of the same experiences and genuinely wants to help.