No idea what's going on

I was diagnosed with Crohn's almost exactly 4 months ago. My diagnosis came after weeks of what I thought were just painful hemmorhoids, and a very traumatic colonoscopy (my IV infiltrated and I got zero sedation- 2 nurses had to hold me down for the procedure). I've had 3 doses of remicaid and hopefully going in for my 4th in a little over a week.

Over the past several weeks I've been noticing stool in my vagina. I've had a lot of irritation down there since my diagnosis, but was always told it was just a symptom and would go away as time went on. The first time I noticed the stool was during sex with my husband. That caused me to lock myself in the bathroom and cry. I've noticed it on and off all summer, but my husband had been saying I was imaging things, and that if it were true I'd be in a lot more pain (he's a nurse so I believed him). Intercourse has been difficult due to inflammation and discomfort. Last week I had so much pain that I couldn't sleep so I finally called the doctor. They were concerned that my symptoms sounded like I might have a fistula so they ordered a CT with IV and oral contrast. That CT didn't show anything so the next day they sent me for a CT with rectal contrast. Again, it showed nothing so I'm scheduled for a sigmoidoscopy next week. My husband talked to a doc at work who said it's not uncommon for CTs to show nothing, they just prefer those first because their less invasive.

I guess I'm wondering if anyone has experienced anything similar. With the CTs showing nothing I'm starting to feel like it's all in my head and I'm just being dramatic. Is it wrong that I want the sigmoidoscopy to show something just to feel validated? Up until the last week or so every time I reached out to my doctor about a symptom he told me I needed to give the remicaid more time to work which is why I waited so long with this. I feel so confused and upset and like I have no control over my body.

Sorry for the long rant, I just feel lost

I'm in a similar boat. I've seen 3 doctors, had an MRI with contrast and without, and had exploratory rectal surgery. No one can tell my why I'm currently in as much pain as I am and I've been in excruciating pain for almost 2 months. I'm finally getting better, every day better than the next, but it's a SLOW process. You've got to give them time to find the problem. You've got to understand that they can't always just find it and fix it. It's taken me this go around to realize that because in the past it's been - surgery - cured. Prednisone - cured. Prednison - cured.

Now.... I have no idea, but I think I'm finally getting through it. You will too and one day, this will be a distant memory. Keep up hope, even when it feels like all hope is lost.

I would definitely go back to the OB and insist on a regular one. You don't want an idiotic one. I was referred to one after moving to a new state by my GI, and there was a SETON in my fistula that the OB's PA actually SAW, went in for a scan that showed nothing, and she called me with the results to say, "The scan showed nothing, so you don't have a fistula. If you still really think you do, then we can refer you to a GI." Moron.

If you do have a fistula, you'll want to continue with the Remicade because it's more proven to help them heal.

Having joint pain and fatigue is a symptom of active disease, so I'm not surprised at all. However, you should probably get a referral to a rheumy to make sure it isn't something more (like bursitis or arthritis).

Lastly, the guarantee of a RV fistula is going to be if you hold gas in, does it come out the vagina instead? If so, then yes, you definitely have one and you should tell that symptom to every single doctor. They will listen to that better than you "thinking" you have stool.

It's the biggest symptom and almost a guarantee of a RV fistula. Again, try to intentionally hold it in. Then see if you can tell, it's almost a guarantee. It's pretty obvious to feel when it happens.

I have a very obvious perianal fistula which can be seen but that did not show up on CT Scan or MRI, even with the "special" MRI to search for it. This is not uncommon, so do not doubt yourself based on these tests.
I certainly wouldn't wish a fistula upon you and would be happy for you if it turned out to be something else. But your symptoms do sound like a recto-vaginal fistula, and you are right to press for answers.

That is good that Remi is working. Who are they sending you to now?

Good luck!!

Good news to hear! Not that you have one, but that it was found! Now get a CR surgeon to take a look.

I have surgery scheduled with the uro-gyn on 10/24. Had to get it scheduled halfway between remicade infusions so that I could stay on schedule with those. Really wish it was sooner because I'm starting to get really depressed with how my body is functioning right now, but I know it's better to hold off so I can stay on track with everything.

It's pretty standard to take imuran or mtx with Remicade to help avoid antibodies. It's important to get your liver levels checked every few months, and there is a pretty rare side effect of pancreatitis for imuran, but again, that's pretty rare. I know what you mean - I tend to get the rare ones, too. But since these ones really aren't common and a LOT of people do this double dip, it's better to do it than to try to avoid the risk of what might happen, if that makes sense.