Life on the inside.
Sunday, 12 June 2011 10:36![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
a_bit_of_wit_2It's been about a year now since my Crohn's decided to move into another phase. The day it began is branded into my brain, as if someone took a hot iron to it. I'll never forget seeing Toy Story 3, and wondering what the odd pain and swollen lump forming between my legs was all about...the many visits to the doctor that followed afterward, since it began to hurt to the point where sitting up was not possible.
Originally thought to be a freak abscess, an infection, I wound up getting sliced open, and spent a weekend in the hospital. I thought relief was on the way. When it wasn't healing, I was referred to a colorectal surgeon, who determined that it wasn't just an abscess. It was, in fact, Crohn's disease. Even though my stomach hadn't been given me trouble for a while (at least, not in terms of the screaming flare-ups I've come to know), it decided to manifest itself in my ass, creating a fistula which needed surgical correction. So I went under the knife and was cut open for a 3rd time.
This led to me being out of work, out of sight, and out of mind for 8 weeks. I was forced to withdraw from school AGAIN, leading me to think that really, Fate does not want me to finish school. First, I leave two schools because I can't afford them, and once I finally make it back to school, my body decides to declare open war. Even now, even as I plan to go back to school in about a year, I occasionally ask myself why bother? I can't help but think that when I do go back to school again, the Universe will find another way to kick me back down. It's not optimistic, I know, but I can't help but think that when one's had the string of rotten luck with colleges as I.
For 8 months after the surgery, I had to deal with a seton, a special device put inside me to help close the fistula my body created. Last January, feeling pretty good, I thought I was well enough to return to school. 3 weeks later, the stress of full-time work and going to school 4 nights a week caught up with me. Healing stopped. I left school yet again, but began to heal again in the process.
One month ago, I underwent surgery again, but this time it was to remove the device, having done its job. And healing continues, even if does look like I have a vagina. And while I'm getting better, and physically feel worlds better than when this new phase of Crohn's began, I'd like my life back. I haven't been able to really properly exercise (a hole between your legs will do that)--I miss being outside and playing tennis. I haven't been able to return to school. I miss photography, not having picked up a camera in months. I'd like my boss to not express her displeasure, however subtle, whenever I have to go see the doctor for a weekly checkup.
Most importantly, though, I feel like I've been a terrible husband. I feel that I've been more a patient to my wife than a husband, for she's been having to clean, dress, and bandage the wound nearly every night since September. Every night, it seems, it's go to the bathroom, take a bath, put in a new dressing, and then lie in bed to recover from pain. She puts on a brave face, but I know that she wants her life back too. Even though she has been instrumental in the healing process, I know that she too must be getting tired of this daily ritual. No going out on date nights, no taking trips, no going to see my family, not having sex...it's maddening. It's maddening to look completely well on the outside, but the inside tells a totally different story.
I know I'm healing. I know that--there's physical proof of it. I've seen the proof. But my god, is it slow. And I know that some of the reason why is the Crohn's--compromised immune system and all that. It's the reason why I look forward to seeing my gastroenterologist every 8 weeks to get that IV infusion of Remicade, because I know that for the first 2 or so weeks after the injection, my immune system calms down, tells the Crohn's to back the fuck off for a little while, and rapid healing ensues. As the amount of the drug in my body gets less and less over the span of 8 weeks, so does the rate of healing. I almost wish I could get the drug weekly, but as it's a powerful immunosuppresant, so...not a good idea.
I can't wait for this to be done, so I can put it behind me. No more nightly bandage changes, no more taking hydrocodone every time I see the surgeon, no more pain. Back to friends and family, back to my camera, back to being a husband again.
Back to enjoying life.
Originally thought to be a freak abscess, an infection, I wound up getting sliced open, and spent a weekend in the hospital. I thought relief was on the way. When it wasn't healing, I was referred to a colorectal surgeon, who determined that it wasn't just an abscess. It was, in fact, Crohn's disease. Even though my stomach hadn't been given me trouble for a while (at least, not in terms of the screaming flare-ups I've come to know), it decided to manifest itself in my ass, creating a fistula which needed surgical correction. So I went under the knife and was cut open for a 3rd time.
This led to me being out of work, out of sight, and out of mind for 8 weeks. I was forced to withdraw from school AGAIN, leading me to think that really, Fate does not want me to finish school. First, I leave two schools because I can't afford them, and once I finally make it back to school, my body decides to declare open war. Even now, even as I plan to go back to school in about a year, I occasionally ask myself why bother? I can't help but think that when I do go back to school again, the Universe will find another way to kick me back down. It's not optimistic, I know, but I can't help but think that when one's had the string of rotten luck with colleges as I.
For 8 months after the surgery, I had to deal with a seton, a special device put inside me to help close the fistula my body created. Last January, feeling pretty good, I thought I was well enough to return to school. 3 weeks later, the stress of full-time work and going to school 4 nights a week caught up with me. Healing stopped. I left school yet again, but began to heal again in the process.
One month ago, I underwent surgery again, but this time it was to remove the device, having done its job. And healing continues, even if does look like I have a vagina. And while I'm getting better, and physically feel worlds better than when this new phase of Crohn's began, I'd like my life back. I haven't been able to really properly exercise (a hole between your legs will do that)--I miss being outside and playing tennis. I haven't been able to return to school. I miss photography, not having picked up a camera in months. I'd like my boss to not express her displeasure, however subtle, whenever I have to go see the doctor for a weekly checkup.
Most importantly, though, I feel like I've been a terrible husband. I feel that I've been more a patient to my wife than a husband, for she's been having to clean, dress, and bandage the wound nearly every night since September. Every night, it seems, it's go to the bathroom, take a bath, put in a new dressing, and then lie in bed to recover from pain. She puts on a brave face, but I know that she wants her life back too. Even though she has been instrumental in the healing process, I know that she too must be getting tired of this daily ritual. No going out on date nights, no taking trips, no going to see my family, not having sex...it's maddening. It's maddening to look completely well on the outside, but the inside tells a totally different story.
I know I'm healing. I know that--there's physical proof of it. I've seen the proof. But my god, is it slow. And I know that some of the reason why is the Crohn's--compromised immune system and all that. It's the reason why I look forward to seeing my gastroenterologist every 8 weeks to get that IV infusion of Remicade, because I know that for the first 2 or so weeks after the injection, my immune system calms down, tells the Crohn's to back the fuck off for a little while, and rapid healing ensues. As the amount of the drug in my body gets less and less over the span of 8 weeks, so does the rate of healing. I almost wish I could get the drug weekly, but as it's a powerful immunosuppresant, so...not a good idea.
I can't wait for this to be done, so I can put it behind me. No more nightly bandage changes, no more taking hydrocodone every time I see the surgeon, no more pain. Back to friends and family, back to my camera, back to being a husband again.
Back to enjoying life.
