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PJ2017
New Member


Date Joined Jun 2017
Total Posts : 8
   Posted 7/15/2017 11:46 PM (GMT -6)   
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 confused

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3257
   Posted 7/16/2017 5:26 AM (GMT -6)   
Wow, that sounds really awful with all of that. I've woken up during colonoscopies and surgeries before. It sounds like they did NOT handle it well. Welcome to the forum!

The doctor your husband spoke to is right, it is VERY common for nothing to show up on a CT.

You're not alone in this - when you start getting stool coming through the vagina, it's called a recto-vaginal fistula. It is not uncommon in fistulizing Crohn's. I've had one for 5 years now. One of my biggest signs was when if I had gas and tried to hold it in, the gas would come out vaginally instead.

In addition to the sigmoidoscopy, you really need to see an OB/GYN. They actually might be better able to see a fistula than

As for pain with it, yes, sex can be incredibly uncomfortable. However, your husband is wrong in saying that you'd be in extreme pain if one had formed. I barely noticed mine had formed; I went into the OB thinking I had a bad yeast infection or something.

What symptoms are you still having? How long have you been on the Remicade? I imagine by now you've finished the loading doses.

I know that everything seems really awful right now. Please know that YOU ARE NOT ALONE! This forum is an excellent resource. And it WILL get better. I promise.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Stevo68
Regular Member


Date Joined Jun 2011
Total Posts : 41
   Posted 7/16/2017 8:51 AM (GMT -6)   
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.

PJ2017
New Member


Date Joined Jun 2017
Total Posts : 8
   Posted 7/16/2017 5:51 PM (GMT -6)   
I went to the gynecologist in June and she thought it looked like I had a yeast infection. She had a student so my pap, and a very painful exam. I feel like if there was something there maybe the student wouldn't know what to look for- she was have a very rough time with just the basics.

Most of my symptoms aren't GI symptoms. I still have a ton of joint pain-especially in my hips, and just general fatigue. When my hips start hurting I have to lay down flat cuz standing and sitting just puts too much pressure on them.

I'm scheduled for my fourth remicade infusion on the 26th. Hopefully that doesn't get derailed with all that's been going on.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3257
   Posted 7/16/2017 8:25 PM (GMT -6)   
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.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

PJ2017
New Member


Date Joined Jun 2017
Total Posts : 8
   Posted 7/16/2017 8:59 PM (GMT -6)   
I have been having gas issues lately where I have no control over it. Kinda like the gas just falls out of my body no mater what I do, and it does feel like it's coming out vaginally. I never realized that was a symptom of anything though

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3257
   Posted 7/16/2017 9:12 PM (GMT -6)   
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.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1812
   Posted 7/17/2017 1:11 PM (GMT -6)   
Laney, I have to agree with scifigal it does sound like you have a fistula. It took me a few months to get mine diagnosed. I happened to go in for my yearly and told my gyne about it. She was sure I didn't have one because it didn't "smell" like a fistula. Seriously that is what she said. Then my GI listened to my symptoms and sent me to a CRS for an exam under anesthesia that showed an anovaginal fistula. I haven't had any luck getting it to close (long story). And actually I only know it's there when I get gassy or when I have watery D and it goes into the fistula -- hurts like ****.

Hopefully you can get someone to pay attention to what you are saying and get a proper diagnosis.

take care,
DX with CD Aug. 1982
Gerd secondary to crohns
Entyvio
Methotrexate
Monthly b-12 injections
40 mg Protonix / twice daily
Zoloft
xanax
folic acid

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 311
   Posted 7/19/2017 8:04 PM (GMT -6)   
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.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

PJ2017
New Member


Date Joined Jun 2017
Total Posts : 8
   Posted 7/21/2017 9:44 PM (GMT -6)   
So they couldn't find a fistula on the sigmoidoscopy. They still think there could be a fistula from my small intestine to my vagina so I have to go see another doctor. Good news is the remicade appears to be working- all the ulcers in my colon have healed with very little scarring. Frustrated that I still don't have answers, but glad the remicade is working.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3257
   Posted 7/24/2017 6:20 PM (GMT -6)   
That is good that Remi is working. Who are they sending you to now?
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

PJ2017
New Member


Date Joined Jun 2017
Total Posts : 8
   Posted 7/24/2017 6:33 PM (GMT -6)   
Uro-gynecologist. I have to do a little experiment ahead of time though- it involves A TON of beets and a tampon.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3257
   Posted 7/24/2017 6:51 PM (GMT -6)   
Good luck!!
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

PJ2017
New Member


Date Joined Jun 2017
Total Posts : 8
   Posted 8/10/2017 3:01 PM (GMT -6)   
They FINALLY found the fistula- this guy found it right away by just doing an exam. Making me wish I had spoken up at the gynecologist in June and insisted the doc did my exam and not the student. At least now I have answers and am coming up with a plan to move forward.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3257
   Posted 8/10/2017 5:27 PM (GMT -6)   
Good news to hear! Not that you have one, but that it was found! Now get a CR surgeon to take a look.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 330
   Posted 8/25/2017 11:44 PM (GMT -6)   
Glad they found it!

I echo PJ2017 suggestion of a uro-gynecologist. I found one a few years ago in the city near where I live and she instantly separated out symptoms that were and weren't Crohn's (though much was related) scheduled surgery that fixed a problem I'd been having for awhile and thought "oh well, that's just Crohn's") and continues to be a good person with whom to check in on issues my GI say aren't Crohn's. I had never heard of this speciality before but it was amazing to be with someone who knew all the options and possibilities rather than me listing symptoms to a doctor with a blank stare.
Official dx in TI 2007 with with obstruction and 10 day hospitalization.
mild to moderate since then - frequent colitis Also IBS.
2014/16 - rectocele repair, bladder sling, endometrial cyst attch'd to colon
2017 - Increasing flares / Inflamm in ilieum ("red"), new diverticulitis
Current Meds: Asacol. B12 shots /Prev: Pentasa, 6mp, Cipro, Pred

PJ2017
New Member


Date Joined Jun 2017
Total Posts : 8
   Posted 8/26/2017 11:01 AM (GMT -6)   
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.

PJ2017
New Member


Date Joined Jun 2017
Total Posts : 8
   Posted 8/30/2017 10:07 PM (GMT -6)   
Saw my Crohn's guy today and he wants to start me on Imuran (no idea if I'm spelling that right) after I heal from surgery to prevent me from developing antibodies to the remicade. He says because of the fistula I fall into a "high risk" area of developing antibodies. Anyone else on both? any side effects? Like with any medication he said there could problems- and I always seem to end up with the weird things the MIGHT happen- but I also want the remicade to keep working.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3257
   Posted 8/31/2017 5:55 AM (GMT -6)   
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.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor
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