There are 2 days left in 2017 and I've considered writing this blog post for most of the previous 363. It's on a topic that nobody wants to talk about. Ever.
Let me start by saying Crohn's disease is a stigmatized disease. A recent study found it's more stigmatized than HIV/AIDS and genital herpes among the general public. And this topic, I think, takes that stigma and multiplies it by about 8.
Most people who know anything about IBD know it involves a few main issues: diarrhea, abdominal pain, and sometimes blood in said diarrhea. Because Crohn's is a giving disease, it also comes with a slew of other problems including joint pains, eye inflammation, skin inflammation, bone density loss, mind-numbing fatigue, and fuzzy toenails.
Ok maybe not that last one.
Around 1/3 of us develop "fistulizing disease." Or what I like to call body termites. Fistulas aren't unique to IBD and can happen for other reasons, but IBD is a main source of the fistulas in the world. A fistula occurs when one part of your body creates a tract, or tunnel, to another part of your body. It's not entirely known why the hell IBD starts this process, but it does and it sucks when it does. Many fistulas form between the colon and the skin, but they can also tunnel to your bladder, another part of your intestines, or, for us ladies, the vaginal wall.
Fistulas are a bitch to treat a lot of the time. And they often come with an abscess that can cause continuous drainage of various fluids. Depending on where the fistula starts, where it ends, and the state of your bowels you have a few treatment options: 1) you can have surgery (e.g. a fistulotomy), 2) have some dental floss strung through them to keep them open to prevent abscess formation (i.e. seton placement), or 3) hope to whatever force in the universe you prefer that one of the fancy biologic medications (e.g. infliximab, adalimumab) close the tunnel without further intervention.
I'm one of the 33% and have 2 fistulas during my 15-year Crohn's tenure. Let's call them Cersei and Joffrey.
Cersei was a simple colon to skin fistula that was repaired with fistulotomy in 2004. I think it was 2004. That's what I always write on my surgical history forms, but honestly all this shit is a blur.
Joffrey, on the other hand, Joffrey has been in my life since 2006. He was relatively well-behaved up until the past year when I had a pretty bad Crohn's flare.
Joffrey is a small bowel to vaginal fistula. At least that's the theory, anyway. Nobody really knows where Joffrey starts, but we have consensus as to where he ends. Because of the genuinely fucked up nature of this type of fistula, there are officially zero good treatment options. The best bet is for medications to keep the disease in check which, in turn, keeps Joffrey quiet. Surgery for a vaginal fistula is effective less than half the time and when you read up on the approaches you can't help but cringe. Transvaginal inversion repair? Endorectal advancement flap? Or in my case, a small bowel resection with god knows what else.
Joffrey comes with fun symptoms like the passage of bowel contents from a part of your body that should never pass bowel contents. And because of this, Joffrey irritates the living hell out of things and makes you feel about the least attractive person on the planet. Joffrey is why I had to have 2 c-sections because of the high risk of jacking my area up even more if I went the way nature intended things to go.
Joffrey fucking sucks.
How in the hell do you try to tell people in your life about Joffrey? I'm at least old and married with an understanding AF husband. I feel immensely for the young women out there dealing with this S.O.B.
I don't know how many women living with IBD have a Joffrey in their life, but a 2007 study says these account for 9% of IBD-related fistulas. So if we do a little math, statistically speaking....
1.6 million people with IBD, 33% of which, or 528,000 are in the fistulizing club. 9% of that is roughly 50,000 women.
The same number as those killed by drug overdose last year.
The same number as those who die from colorectal cancer each year.
The same number as those newly diagnosed with Parkinson's disease each year.
10,000 more than annual newly diagnosed cases of HIV.
10,000 more than those who died in a car accident last year.
With a Joffrey in her life.
We should be talking about this more. No matter how hard it is.
--T2
Let me start by saying Crohn's disease is a stigmatized disease. A recent study found it's more stigmatized than HIV/AIDS and genital herpes among the general public. And this topic, I think, takes that stigma and multiplies it by about 8.
Most people who know anything about IBD know it involves a few main issues: diarrhea, abdominal pain, and sometimes blood in said diarrhea. Because Crohn's is a giving disease, it also comes with a slew of other problems including joint pains, eye inflammation, skin inflammation, bone density loss, mind-numbing fatigue, and fuzzy toenails.
Ok maybe not that last one.
Around 1/3 of us develop "fistulizing disease." Or what I like to call body termites. Fistulas aren't unique to IBD and can happen for other reasons, but IBD is a main source of the fistulas in the world. A fistula occurs when one part of your body creates a tract, or tunnel, to another part of your body. It's not entirely known why the hell IBD starts this process, but it does and it sucks when it does. Many fistulas form between the colon and the skin, but they can also tunnel to your bladder, another part of your intestines, or, for us ladies, the vaginal wall.
Fistulas are a bitch to treat a lot of the time. And they often come with an abscess that can cause continuous drainage of various fluids. Depending on where the fistula starts, where it ends, and the state of your bowels you have a few treatment options: 1) you can have surgery (e.g. a fistulotomy), 2) have some dental floss strung through them to keep them open to prevent abscess formation (i.e. seton placement), or 3) hope to whatever force in the universe you prefer that one of the fancy biologic medications (e.g. infliximab, adalimumab) close the tunnel without further intervention.
I'm one of the 33% and have 2 fistulas during my 15-year Crohn's tenure. Let's call them Cersei and Joffrey.
Cersei was a simple colon to skin fistula that was repaired with fistulotomy in 2004. I think it was 2004. That's what I always write on my surgical history forms, but honestly all this shit is a blur.
Joffrey, on the other hand, Joffrey has been in my life since 2006. He was relatively well-behaved up until the past year when I had a pretty bad Crohn's flare.
For the record, I've seen about 4 and 2/3 episodes of Game of Thrones, but I know enough about Joffrey to liken him to a fistula.
Joffrey is a small bowel to vaginal fistula. At least that's the theory, anyway. Nobody really knows where Joffrey starts, but we have consensus as to where he ends. Because of the genuinely fucked up nature of this type of fistula, there are officially zero good treatment options. The best bet is for medications to keep the disease in check which, in turn, keeps Joffrey quiet. Surgery for a vaginal fistula is effective less than half the time and when you read up on the approaches you can't help but cringe. Transvaginal inversion repair? Endorectal advancement flap? Or in my case, a small bowel resection with god knows what else.
Joffrey comes with fun symptoms like the passage of bowel contents from a part of your body that should never pass bowel contents. And because of this, Joffrey irritates the living hell out of things and makes you feel about the least attractive person on the planet. Joffrey is why I had to have 2 c-sections because of the high risk of jacking my area up even more if I went the way nature intended things to go.
Joffrey fucking sucks.
How in the hell do you try to tell people in your life about Joffrey? I'm at least old and married with an understanding AF husband. I feel immensely for the young women out there dealing with this S.O.B.
I don't know how many women living with IBD have a Joffrey in their life, but a 2007 study says these account for 9% of IBD-related fistulas. So if we do a little math, statistically speaking....
1.6 million people with IBD, 33% of which, or 528,000 are in the fistulizing club. 9% of that is roughly 50,000 women.
The same number as those killed by drug overdose last year.
The same number as those who die from colorectal cancer each year.
The same number as those newly diagnosed with Parkinson's disease each year.
10,000 more than annual newly diagnosed cases of HIV.
10,000 more than those who died in a car accident last year.
With a Joffrey in her life.
We should be talking about this more. No matter how hard it is.
--T2