Long overdue post---my apologies.
I started HBOT in Dec to help heal my fistulas. I immediately noticed it helped with urgency and that I was able to do kegels and actual feel the contraction. Previously I couldn't feel that part of me.
On Jan 5, 2017 I had an MRI that showed granulation of my recto-vag fistula. I think I had completed 18 dives by then. My symptoms were reduced by 80%. The other 2 fistulas reduced in size, one "moderately" and one "significantly".
My bm's are formed and normal. I did a happy dance every time! I am going between 0-4 times a day usually in the morning. I can kind of tell if I won't have another bm now. I still wore depends more out of anxiety then actually needing them but since I take the subway down I thought it was still a good move. No accidents in the chamber like I feared even though my dives (session) were at 9:30am. Only once did I ask to come up early to use the bathroom missing only the last 15 min.
I was still abscessing though. Lots of disgusting drainage from peri anal abscesses. Lots of pain although it was reduced after each dive. On Jan 30th I had surgery to put a seton in the fistula tract to keep it
open to eliminate pain of the perianal cycle....pressure pain, build up of pus, drain. The seton eliminates the former. Here's where it gets to the good part: I woke up from the surgery with NO SETON! The surgeon could not find any holes in my rectum to place the seton. He also could not find any connection (hole) from my rectum to my vagina!!! The best news ever! He cleaned out the cavity, doing and I &D. It was a very painful recovery and lots of drainage. The week following the surgery I was only going twice, with no urgency. In fact I hopped into the car to go home from my moms who was taking care of me without a thought of pooping! It wasn't until I got home that I realized I did something amazing.
I took a week off of HB since I obviously couldn't lie in the chamber for 2 hours.
Here's the current issue: I continued to heal resuming HB. I could actually feel and follow the swollen tract from my inside butt cheek to my rectum. Not pleasant and extremely painful when swollen with pus. That completely healed. Sadly, 2 weeks later I developed another abscess. Since I had healed from inside the rectum and the bottom half of the tract the abscess had no where to drain. On Feb 16th my recto-vag fistula re-
opened. Things got backed up with no where to drain. Needless to say I am utterly devastated. For those who don't know the fistula tract has to heal from the inside (rectum) out (to the hole in the butt cheek). It's like a straw. You have to essentially press down on one end to flatten it and follow along until you get to the other. What happened is that the top and bottom of the "straw" healed or flattened but that left the middle of the straw trapped with the abscess. Not good. So while I healed, I didn't heal in a systematic way.
The plan: after 40 dives they give you a 2 week break simply because it's a such a time commitment. I'm on that break now and will resume to complete another 20 dives for a total of 60. I am having a seton placed on March 13th. I hope this time I will heal in the correct manner and my recto-vag fistula will close again.
I can firmly say that the HB and combination of humira ( I cannot discount this) and clarithromycin absolutely helped heal my tissue. It's a good sign that healing did occur. I am experiencing a major set back though which has been devastating physically and emotionally. The recto-vag fistula I find humiliating to my core. I do feel like it is breaking me. Since this happened, I've been bed ridden with fatigue, pain and extreme depression. This morning I passed m and b --but wondering if it's due to CBD oil I just started.
But to recap HBOT helped:
- me kegel to build strength in those muscles. I literally could not feel that area or do a kegel for months and months.
- it's helped with urgency. I was able to hold it for 5 min, then 11, then 45.
I still would say that the urgency is the worst in the morning.
-I can now feel in my stomach when I need to go. Previously I only felt it in my rectum then went running. Sometimes the feeling in my stomach passes and I actually don''t go or it buys me some time to find a bathroom.
- my tissue did heal and my 3 fistulas closed or were almost closed
- I stopped running to the bathroom the second my eyes
opened in the morning. Sometimes I don"t go until an hour after waking.
- it helped get me out of the house. I have been terribly ill with the abscess infection. Sometimes I had to hold on to the walls when getting to treatments. I was terribly weak and feeling gross. Worse if I had to stand on the subway. However, I am amazed at what I did. I went every day. I was determined to "go to work" as I call it. I got up at 5:30. I challenged my anxiety about
leaving the house especially in the morning. It meant wearing a diaper and carrying around my emergency bag with a change of clothes, but I did it. I never, every would have taken the subway before, never mind leave the house before 1pm.
- I relaxed as much as I could during my dives and watched a ton of movies. I challenged myself to keep doing kegels in the machine and challenged my mind to push away worries and focus on the movie.
- it helped firm my stools to solid beautiful lovely things
- it gave me HOPE. Some of you know I was really struggling to find that since Aug 2016 when I got fistulas.
Now my challenge is to remain hopeful in light of this major set back. With the seton in I hope this time I will heal properly.