Radiating pain

Sci-fi,
Did you have bloody discharge out of your RVF or anus? Did your RVF discharge change color or smell? Did you feel hard pinches or needle like pricks around where your current fistula is or where your vagina, cervix or utereous are located? (My answers were yes to all)

I used to have pains like that plus the above listed items. They would last a few hours to overnight. It was my RVF developing additional internal "tunnels". We increased the Remicade amount hoping that would stop them. It slowed it down but did not stop them from forming.

My CRS thought that was what was happening but we could not find the new tunnels in the CT scan, x-ray, MRI, or sonogram. When he operated in April to remove my Hartmanns pouch and most of my rectum....that's when he found them.

Yours may be something totally different. I would get in to see them asap.

I will be thinking of you.
Clo

Sci-fi,

Just a thought... Depending upon how closely your CRS works with your GI, sometimes my CRS was able to "talk" to the GI office and they would change my prescriptions and usually work me in aittle sooner. It doesn't hurt to ask your CRS if he can help you.

Has the discharge smell changed? And did you feel those pinches when you developed your original RVF? Are you having any other issues-even as small as maybe not being able to tolerate some foods, a higher degree of heat or cold intolerance, or having more mouth sore breakouts? Are the pinches more frequent when you are having other symptoms?
My answers were yes to all.. Once I relayed that information to my CRS he seemed more concerned because we had a prior experience indicating what could happen.

Lastly...this sounds crazy but....I took my shower head, turned it on the "vigorous" setting and sprayed my bottom & abdomen. The places where it caused pain or an ache were areas we found some of the new tunnels to be close to.... I kept track of the pinches and that's where the CRS removed adhesions and started looking for tunnels....but I have been sorta hypersensitive about knowing my body. There's a part of me that thinks he was hoping to find nothing but when he found the 1st and 2nd additional tunnel where I told him they would be he was resigned to trying to find the others... He discovered they all originated at or near the RVF and close to the same spot in the rectum/anus.

Again....nothing showed up in any imaging...even though you could see the RVF fistula and its track with your eyes.

This disease is so sneaky. Hang in there and please stay in touch!

Clo

Those are all good questions.

I did not feel that pain with my initial fistula, but that is because the fistula developed directly from an abscess that was incorrectly cut and drained in the emergency room by the ER doctor (and then I was sent home immediately after). This was the beginning stages of my disease, so I didn't know then what I know now.

And like you, the fistula has never shown up on scans even though it is very clearly still there (you can't miss gas passing through your vagina!).

The pain eased somewhat but today during a soft BM I felt like I was being split open, which leads to me wonder if it's a fissure (I've only had one before, but that was like 15 years ago).

I have a bidet, and using that spray has made things more tender.

I may end up in the ER again tonight anyway. It has been 6 days, and suddenly today one of the spots where they missed an IV has blossomed with horrible bruises and is swelling and tight to touch.

Sci-fi
You don’t have proctitis, right? I can relate to the pain you describe. I normally have it when my rectum is flaring up. Make this test. If it is a fissure as the others suggest, apply lidocaine before and after a bm and see how things go on. If the pain is reduced , then it’s a fissure. If not. Then, you need a prescription enema like colifoam rectal foam or budesonide enema. Normally, when I have this pain and take a budesonide enema, pain is temporarily relieved as I have to take it daily until the flare up is at bay.