Rectal soiling

It seems that issue won’t end. December 2021, I underwent an MRI dynamic study to find the cause of the soiling. All the results showed borderline rectal muscle and my GI recommended I have to have rectal biofeedback sessions. Given that I flared up because of the enemas they gave me during the procedure, I refused to do the sessions and he didn’t force me.
In my last COVID-19 infection which was last month, I screwed up my steroid doses as doctors were afraid to treat my then infected lungs and Crohn’s. The problem was that the GI didn’t want to give his opinion with regard to the suitability of the chest meds to Crohn’s and the chest doctor was afraid to recommend a medicine that would screw up my Crohn’s condition. I have been tapering budesonide off and when I had to take a steroid accuhaler, I stopped budesonide all of a sudden. Of course, you know what happened: I relapsed with severe cramps and explosive watery diarrhea. As I was mad at my GI because he mentioned that he won’t interfere with my COVID-19 medicine and he gave the chest doctor the green light to treat me, I did not contact him when I flared up. It was one of the severest flare ups I have ever had. So, I added insult to injury and for 3 successive days I took steroid (dexamethasone) injections. That was last week. Now, my gut is literally screwed up and I don’t know whether I should up my budesoide dose more, I have already done that or I should take rifaximin. The problem is that soiling returned and no matter how thorough I clean myself, there is always stool in my anal canal. The fistula has been claimed to be have healed but I don’t think it’s true. Also, my Remicade dose is due after tomorrow.

Minnie,

How are you?. Did the Remicade help calm things down?

When my fistula is going crazy we increase the Remicade amount, decrease the timing, start me on Prednisone.... And start me on a 7 day course of Flagyl/Cipro pills. (I can't take them longer than 7 days....it should be 14 to 28 consecutive days of Flagyl antibiotics..but Flagyl makes me very I'll after 7 days so we go 7 on, 7 Cipro, 7 on, 7 cipro)

My fistula has never healed shut. The best we have been able to do is lessen the mucus output from it. My fistula is a lower RVF that has branches to the rectum and anus--thus making me incontinent. (And lessening the chance of being hooked back up) To help with the skin irritation I would shower, hose out the RVF, jump out, dry and put Calmoseptine on/inside RVF to avoid future irritation. It was exhausting. I was showering 6 to 8 times a day until we got the mucus somewhat under control. (Now it's 2 or 3 times a day... Still too much but better.)

Hope you feel better soon! Hang in there.

Clo