Things are continuing to improve although it's hard for me to say if it's the HB or the increased Humira as both coincided within days.
I can 100% contribute my ability to contract my sphincter muscle within 10 min of my first HB. This is extremely important for anyone with urgency/fistula issues. My colon and rectum had thicken so significantly that I wasn't even able to feel that area. I now can do kegals that are "deeper" and I can hold it for 1.5 seconds.
After my 3rd HB (and before increasing humira) my stool began to form.
After my 8th session (they call it dives, like scuba diving) I was able to hold my bowel for 30 seconds. This was huge for me as I literally had a maximum of 3 seconds prior. Hence living in diapers
9th session-- I held it for 3 min on my way to the hospital. When I felt it come down to my rectum, I stopped walking and willed myself to do a kegal. I still ended up running but those couple of seconds saved me from an accident.
10th -- held for 11 min inside the chamber!! This is the longest I've held it for at least a year. Also huge is that I didn't have an accident in the chamber. That could be odiferous to say the least.
15th (today) Held for 15 min inside chamber---this time I went running and had d.
Pre HB ( and increased humira) I was going about
5 times, severe urgency, at times incontinent. All mush. I'm now going 2-3 times, formed or semi formed and with the exception of 1st thing in the morning, I do have some control. I do not feel comfortable going without a diaper as of yet.
I attribute the kegals to HB and the formation of stool to it as well. I'm sure humira is also helping and cannot discount it.
The goal of adding HB to my treatment is to close my fistulas and get me into remission. It is also hoped that my gyne issues caused by the fistulas will also clear up.
I did speak briefly with the director who was pleased that HB was working. She believes my stem cells will be reactivated and that my improvement will continue. She also said it would heal the abscess infection. I can have a maximum of 60 sessions per year. Fistula closure will happen around 30-40 dives.
Not going to lie. It's a tough schedule going 5 days a week especially on most days when I feel so crappy I can't move. But as awful and disheartened and as hopeless as I've felt I've been given this amazing opportunity to get better. I'm on very aggressive treatment because my disease suddenly became aggressive. To be blunt, I'm not only trying to save my bowel but also my female organ as well.
Will update at dive 25.
IVIG (on hold)
UC/Crohns - tested positive for MAP antibodies & mycobacterium
Flaring 3 years. Currently dealing with fistulas including rectal/vag and vulvodynia caused by IBD (taking 3000mg gabapentin)
started Humira Sept 1, 2016. 80mg weekly
started Hyperbaric Oxygen on Dec 13, 2016