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One year later and still no diagnosis, please help!!

Hello there,

I have no idea what to do. Last year in April 2019, I went to the toilet during a very stressful day and there was feces coming out of my front private parts. I told my doctor and he didn't believe me, but he referred me on to a gynaecologist anyway. The appointment was in November 2019, where she did a check on my private parts and told me she would refer me to a colorectal surgeon as she said it wasn't a gynaecologist issue.


I met with the colorectal surgeon in December 2019, and said that they would 'have a look' as they didn't know what was wrong. The feces was continuing to happen when I passed stool. She booked me in for a signoidoscopy in February 2020.

However, because the feces was increasing, a family friend who is a doctor arranged for me to have a cystoscopy done by a urologist (one month before the signoidoscopy) to look for a fistula in the bladder, and he found no fistula. On the same day I also got a CT scan done.

A month later, i had the signoscopy and the surgeon said that I was 'all clear' and everything seemed to be fine.

In July 2020, I got a call from a colectoral surgeon of the family friend who said that on my CT scan, it showed that my bowel had decompressed. I went for an appointment to meet them a few weeks later where they said there was a skiplesion and after hearing my symptoms, they brought me in for an emergency MRI. They said they were hoping to get an MRI of the GI system.

However, I got the MRI results and they said they looked over it twice with the radiologist twice and it was all clear. The colorectal surgeon said that he would talk to his colleagues, and he thinks it's a problem with the bladder.

I was meant to have a colonoscopy by the colorectal surgeon, but because the MRI showed it was clear, I think thats why he is passing me on to someone else. He also asked does anyone in my family have Chrohns disease and I told him no.

I am absolutely devastated because for nearly a year I have been passed on from doctor to doctor, with no diagnosis. My symptoms are feces in front passing, wind in front passage, bubbly urine and ALWAYS have to urinate (most times it is urgent) and I have had two separate experiences where undigested food has come out from my front passage as well. I also bloat severely, where I look nine months pregnant after eating or drinking.

My grandfather passed away from bowel cancer, my uncle had half of his colon removed last year and my mother has regular colonoscopies where she had polyps removed not too long ago.

I have no idea what to do anymore. I believe I have a fistula (possibly enterovesical fistula by researching online) but I do not know where to go from here. I am sick and tired of being passed from doctor to doctor and what is worse is that I think they do not believe me. What is odd is that problems showed up on the CT but the MRI was clear. Where do I go from here? I don't know what to do. I would appreciate any advice or help. I am seriously considering going abroad because I'm afraid that these doctors just aren't helping me at all (I live in Europe). I would be so grateful for any advice or support, thank you.
 
I am very sorry to hear this. Have they considered exam under anesthesia (EUA)? Sometimes, MRIs are not specific enough to show fistulas.
 

my little penguin

Moderator
Staff member
Was the mri an mri with entography (MRE ) ?
Where you drink a ton of barium prior /gallulidium by iv /glycogen by iv and contrast
Was the ct a cte with contrast ?
 
Was the mri an mri with entography (MRE ) ?
Where you drink a ton of barium prior /gallulidium by iv /glycogen by iv and contrast
Was the ct a cte with contrast ?
Only the CT I drank that barium I think for an hour before, but for the MRI I didn't drink it but I got an injection of it towards the end I think with the barium as you said to show contrast.
 
I am very sorry to hear this. Have they considered exam under anesthesia (EUA)? Sometimes, MRIs are not specific enough to show fistulas.
Thank you so much for your support, I appreciate it. I haven't heard from the surgeon in weeks and he said he would pass me back to urology. I think I may ring tomorrow and see what the update is. I really don't know what to do.
 

my little penguin

Moderator
Staff member
They can’t inject barium
You have to drink it
They can inject contrast
But that would have been both the mri /ct
The barium helps enhance the image in addition to the contrast
Most Gi imaging requires both barium you drink and contrast injected to get a good image
Ct sounds like it was enhanced but the mri was not
Might explain why they saw something on the ct but not the mri
 
They can’t inject barium
You have to drink it
They can inject contrast
But that would have been both the mri /ct
The barium helps enhance the image in addition to the contrast
Most Gi imaging requires both barium you drink and contrast injected to get a good image
Ct sounds like it was enhanced but the mri was not
Might explain why they saw something on the ct but not the mri
Yes that makes a lot of sense, thank you so much! My husbands friend works in the radiology department, do you think it would be a good idea for me to ask to get another MRI done again with the addition of drinking the barium beforehand?
 

my little penguin

Moderator
Staff member
You could check woth a doc and see if that would make a difference in your case ...
Not sure since I don’t have crohns
My son does so different parts 😃
 
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