Posted 5/30/2013 4:12 PM (GMT 0)
hi all,
I will be 29 in August, and have had 5 surgeries in the past 25 months, first of all, i do not have CD, but i didn't know where else to post this. I have a condition called hidradentis, it has plagued me for 15 years, with large painful cysts and deep growths clusters of chronic abscesses, epidermoid cysts, sebaceous cysts, pilonidal cyst or multilocalised infections, which can be as large as baseballs or as small as a pea. It can also start as a single abscess and once it pops, can make tracts of many more abscesses. These cysts can be extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in incision and drainage of pus, often leaving open wounds that will not heal. For unknown reasons, people with Hidradenitis develop plugging or clogging of their apocrine glands, I am considered stage 3 with diffuse or broad involvement across a regional area with multiple interconnected sinus tracts and abscesses. (Inflammation of sites to the size of golf balls, or sometimes baseballs; scarring develops, including subcutaneous tracts of infection and i was always told that there was nothing that could be done.
in April 2011, i gave birth to a 9.5lb baby girl via c section, due to the fact i have something refereed to as a uterine septum or 'heart shaped' uterus. as well, my daughter was breech, posterior and big. i am only 5 foot 3 with a small frame, weighing in at 131lbs pre pregnancy. after my c section i had terrible constipation, i was afraid to poop, i believe i went 9 days without a bowel movement, and once i had one, i strained quite hard,
and ended up with what a peri rectal abscess. which turned into a fistula, i thought it was an anal fistula, but, turns out, it was the hidradentis that caused my fistula, but i digress.
i had the peri rectal abscess drained in 2/12, a triangle incision that was left open to heal from the inside out with gauze packing, this formed the fistula, in 12/12 i went to see another "specialist" she was nothing of the sort, didn't do any imaging, she just said, yep its a fistula, did a colonoscopy and then told me she was going to put in a cutting seton, the silk kind. when i woke up the doctor was gone, i was told i had a tube inserted into the external opening of the fistula and stitches from the external opening to my perineum. i was still waking from anesthesia, so i didn't understand, no one explained anything to my husband i had to call the next day for aftercare. i was shocked at what she had done, i looked like i had been gored, so much blood and pain.
4 weeks later i lost the ability to pass gas,went from being constipated to having painful Diarrhea, a vicious cycle over and over, and the pain got worse, i went back to the doctor and she said she had gone in scrapped the sinus tract put in a drain, and hoped it would close, well it didn't i ended up with a bowel defect and tons of pain, she wouldn't give me any pills and told me i had to wait 6 weeks to have the seton put in, the seton she was supposed to do in the first place.
well i wasn't letting her touch me again, so i went to the other hospital in town, saw an actual specialist, and he did an MRI and referred me to university of Michigan, because the fistula had grown upward into my pelvic muscles.
U of M was amazing, they placed a rubber seton, told me there wasn't any muscle involved that the pain i was feeling during bowel movements was due to a fissure. less than a week post op, i feel much better and am able to pass gas, but i don't know what to do with the rubber that is hanging out of my rear, i protect the area with gauze obviously because of drainage, but there is still some discomfort, friction and such, I go back to u of m in june for a follow up and to explore the options of excision of the skin around my groin and skin grafts.
Can i swim in a lake? how long will it have to hang there? whats the average time before its removed? i know everyone is different, is it true some people choose to leave them in forever?
any help at all would be so awesome. thanks in advance if anyone can help.