Posted 10/25/2016 5:21 PM (GMT 0)
I have not been diagnosed with Crohn's, but this was the most up-to-date forum about fistulas I could find.
Here's my story:
In March/April of 2016 I had intermittent pain deep in the tissue on my R sitting bone. By the end of April, the pain had not improved, becoming more consistently painful, and a lump could be felt. I saw my GP and in an office visit on 5/3/16, she diagnosed me with Hamstring Tendonitis at Origin and referred me to physical therapy.
I saw a physical therapist (PT) 5 times over a three week period in May 2016. At the very first evaluation visit, I told her I thought the GP was wrong- I had no pain moving my R leg freely, leading me to believe there was no problem with my hamstring. I directed her to the lump that was easily felt. She thought it could still be a muscular problem, not of the hamstring but of the piriformis muscle. I was prescribed exercises to strengthen and stretch this muscle at home, and during physical therapy appointments, PT directed me in assisted stretching and massaging techniques. On my second to last visit (5/20/16), PT applied direct, firm pressure to the lump for 3 full minutes. about three days after this visit, pain in the area was increased and redness and warmth was noted on the skin. On my last visit (5/23/16), PT used dry needling on my piriformis muscle. During this time, the lump became larger and oddly shaped. I could not sit on my right side due to the pain.
On 5/25/16, I wrote my GP to tell her that all symptoms were worsening and physical therapy was not helping. I asked for an imaging test and my GP ordered an MRI. Due to Memorial Day weekend and bureaucratic hospitals and insurance companies, the MRI did not take place until 6/6/16.
My condition worsened greatly in the two weeks between ordering the MRI and having it done. Redness, swelling, warmth, and pain increased. On 6/4/16, a wound opened on my R buttcheek and began draining.
Immediately after the MRI on the morning on 6/6/16, I called my GP about the draining (I was unaware at this time that I had a fistula or abscess). I was seen at 11:30a that day. GP said I had an abscess and then used local lidocaine and incised the abscess to help drainage at her office. She prescribed Bactrim and 5mg hydrocodone. GP said she believed this abscess was unrelated to her diagnosis of Hamstring Tendonitis at Origin, and tendonitis was still the primary issue.
I received the MRI results on 6/8/16. Conclusion was that I had complex extrasphincteric fistula and abscess right ischioanal and ischiorectal fat extending into the right gluteal fat. My GP referred me to a Colon and Rectal surgeon.
Initial visit with the surgeon on 6/21/16. Surgeon was glad that I had already had an MRI due to the complex nature of the fistula. He thought at this time I would need multiple surgeries. Surgery was scheduled for 7/1/16. He prescribed Bactrim to be taken before surgery.
Surgery 7/1/16:
A draining seton was placed in conjunction with a partial fistulotomy- The seton looped into the hole on my buttcheek and came out next to my anus, in a incision (partial fistulotomy) that my surgeon had made. Surgeon was hopeful after surgery that this was the only surgery I would require; he said the procedure went very well. I was on bedrest for 3 days following surgery. I returned to light duty/office work on 7/5/16. I was not prescribed any antibiotics after surgery.
Office visit 7/27/16:
Scheduled as the first follow up after surgery. Surgeon performed an exam. Decided to leave the draining seton in place for an additional week. Draining had lessened since surgery, but not significantly.
Office visit on 8/5/16:
Surgeon performed an exam and removed the draining seton. He prescribed Cipro as a preventative since the draining seton was no longer in place.
Email on 8/17/16:
I wrote to the surgeon because I was concerned that I was not healing. I wrote "I still have a lot of drainage. For a few days last weekend, the hole in my butt cheek from the seton closed up, but there was still drainage to come out. The scar tissue on my butt cheek was getting very tender and a little swollen. So I sterilized a small pin, pricked myself in the scar tissue on my butt cheek, and squeezed to get it to drain. Since Monday this week, the scar tissue on my butt cheek has split in a few places, allowing drainage to occur on its own.
Just this morning, while standing up, I passed gas and felt it go into my butt cheek. When I went to the bathroom and squeezed my butt cheek, air and drainage came out. That happened one other time- the day after my surgery, and I was laying down on my bum at the time. "
Surgeon prescribed Cipro and Flagyl. An exam was not performed.
Email exchange 8/25/16:
I wrote: Checking in: I had several other instances of gas/air passing into my butt cheek since I last wrote, the most recent time being Tuesday. I've tried to be careful when I need to pass gas and do it... delicately. The hole in my buttcheek from the seton closed up again over the weekend; I used a pin to reopen it and squeeze out drainage. It seems that it closes up on the weekends when I'm able to rest and then reopens during the week when I'm working hard. In the last 24 hrs, the amount of drainage coming out has lessened. Pain in my anus has reduced significantly. I've been able to take a few warm soaks"
Surgeon re-prescribed Cipro and Flagyl. An exam was not performed.
Office visit 9/14/16:
I had this visit scheduled as a check up following the removal of the seton on 8/5/16. During the time of the last email exchange and this visit, I finished the second round of two antibiotics. Air passing into my buttcheek stopped. Tenderness around the hole on my buttcheek from the seton increased, eventually becoming more of a wound than scar tissue and a neat hole by 9/10/16. Pain/discomfort inside (where I assume the hole in my rectum wall is) increased significantly. Surgeon performed an exam. He determined that the fistula was back/had never fully healed and further surgery is required. He is recommended a belt and suspenders attack: a fistula plug and an endoanal FLAP. This surgery was scheduled for 9/30/16.
I was having up to 5 BMs a day and surgeon thought I had developed C Diff due to the prolonged course of antibiotics. This was confirmed after lab analysis. Surgeon prescribed Flagyl.
Surgery on 9/30/16:
I was put under using an epidural and general anesthetic. Surgeon was happy with the results of surgery. He used the plug and did a combination of endoanal and endorectal FLAP. The pain coming out of surgery was intense. I was given a tiny bit of morphine and 15 mg Norco at the hospital. Surgery was at 9a, was home by 11:45a or so. Around 12:30 I began throwing up. I vomited 4 times that afternoon. I'm not sure what caused it, though I'm inclined to believe it was the epidural. I was prescribed 7.5 mg Norco to take as necessary and Cipro and Flagyl.
Email on 10/12/16:
I wrote "I'm healing pretty well since surgery. I have minimal pain and have nearly stopped taking the Vicodin. I completed both courses of antibiotics. I'm still on bedrest. I have a small amount of drainage, mostly from my anal area. My buttcheek has nearly healed over. There is no unusual redness/swelling/itching around my buttcheek or anus. I've felt air pass into my buttcheek a few times in the last 36 hours. It happened when I wasn't straining at all and when I've been in different positions- lying on my back, on my left side, standing. It is alarming and somewhat uncomfortable, but it isn't painful. Is this a normal thing to have happen?"
Response: Yes, passing gas into the buttcheek is not unusual.
Email on 10/16/16:
I wrote "I'm still having gas pass into my buttcheek, frequently. Also, the surface of my buttcheek healed over for a day on Friday. This caused a buildup of drainage, some swelling, and pain at the surface of the skin. It opened back up and has been draining slowly. I've been occasionally applying pressure to the area with gauze to help drainage occur to lessen the pain. This evening, while I was applying gently pressure, approximately 1/4-1/2" of stringy, whitish substance came out of the opening on my buttcheek along with the watery drainage. It seemed more solid (held together more) than what I would expect from drainage/mucous. I was able to cut it at the surface of my skin to prevent more from getting pulled out."
Email on 10/17/16:
I wrote "I've had more of the whitish, stringy stuff come out this morning, on its own. It was on my panty liner when I went to the bathroom. There were two strings, each approx. 2 inches in length." I attached a photo for my surgeon to view.
Response: Surgeon looked at the picture. He said it looks like part of the plug and this is not uncommon for pieces of the plug to come out.
Email on 10/24/16:
I wrote "The wound on my buttcheek opened back up and looks like it did before the second surgery. There is a lot of drainage coming out of it, it's milky/yellow in color- occasionally there is blood as well, and it is foul smelling. I have pain on the surface of the skin of my buttcheek where the skin is raw. I can feel pressure, kind of tickling, inside my rectum near where I assume the opening of the fistula is. I have had a few occasions of sharp, pulsing pain inside my rectum near the opening of the fistula as well. Gas passing into my buttcheek has mostly stopped as I am very careful of when I need to pass gas. I wondered if I should move up my appointment with Surgeon (currently scheduled for Mon 10/31), and/or get back on antibiotics."
Response: no need to move up appointment. Cipro and Flagyl have been re-prescribed.
My follow up visit is on 10/31/16. I'm hoping this new round of antibiotics will clear up the infection and allow everything to finally heal, but further surgeries may be necessary. Though what kind of further surgery, I'm not sure. I've already had the procedures with the best success rates and I'm still in the same situation. A full fistulotomy is not recommended in my situation as incontinence rates would be high.
I'm planning to find another surgeon for a second opinion. I like my current one, he has always been forthright and detailed, but I need to make sure I'm doing everything in my power to help myself become healthy again.
I'm in a lucky situation in that I own my own business and can time off work as I need. But my personal life has suffered and I'm feeling incredibly overwhelmed and sad and feel there is no end in sight to this.
I would love to hear others' stories about a successful procedure after failures. Also would love to hear others' experiences post-op as there is very little medical information out there except for incontinency rates.
Thanks for reading my novel and I hope you are all feeling well today.