Hi folks! 
I have a long story (don't we all!) that I'm going to try to share in some sort of organized fashion.
In August, 2007, I started having this unbelievable pain in my rectum. Of course, I was an idiot, and was too embarrassed to go to a doctor or the ER, because I figured they'd look at me like I did something to cause the pain. Also, I was busy - I had finished my PhD the year before, was trying to get work done in a post-doctoral fellowship, was preparing to teach a new class, was engaged to be married (yes - WAS) - and this was all just before I turned 30.
When it finally reached the point when I could no longer sit or lay down, I decided to hit the ER, and found out I had a gigantic peri-rectal abscess that had ruptured. I was septic, and was rushed into surgery. Imagine my surprise when I woke up, understood 3 days later what had happened, realized I had drainage tubes coming out of my rear end... I screamed, and threw up on my nurse.
So began the journey.
That drainage operation was repeated in October 2007, and unfortunately, both of those drain tracks turned into fistulas - I had a double (Seton tubes) fistulotomy in July 2008.
FINALLY, in December 2008, I was able to have a colonoscopy, and we were able to see that yes indeed, I had a whopping case of Crohn's from my terminal ileum, through my colon and rectum. It was absolutely incredible to see the pictures and to see how much damage there was. I immediately started taking 6-MP, but 4 months later (April 2009) I had yet another abscess, and we decided it was time to try Remicade. I take my infusions every 6 weeks, and so far, that seems to keep the rectal abscesses and fistulas away. Also, the medications really seem to have cleared up most of the ulcers and other problems I had in the gut. My latest intestinal pictures are beautiful.
So... fast forward to last fall. I started having rectal pains again. I figured it was the revenge of the killer abscess, but a million doctors (GI, ER, surgery people) poked me and told me that while they thought they felt something there, it wasn't an abscess. I finally changed surgeons (and hospitals for this purpose), and within 5 minutes of having an anoscope inside me, the new surgeon basically said "Houston, we have a problem."
The problem? All of the rectal operations I had, with all of their tubes and tissue manipulations, had caused scar tissue to start wrapping around my rectum. It's strictured, and if we'd let this go longer, it would have closed off. How all of those other people missed this was beyond me.
Where am I now?
My new surgeon (Dr. M) suggested that I go on bowel rest for 6-8 weeks before having my rectal repair done. That means that I currently have a temporary loop ileostomy - something that I never, ever expected to have in my life.
Oscar the Grouch (or Stumpy... he has many names!) was born on June 7th. He was a normal looking stoma, and I was released from the hospital after 5 days. Unfortunately, a few days after my release, I started vomiting and being unable to keep stuff in. Stupidly, I didn't do anything about it, and let it go for a few more days. On June 19th, I was admitted to the hospital, and had my ENTIRE ileostomy redone on June 20th. It turns out that my bowel had gotten all twisted around and was a mess. I was in the hospital for 8 days with that one. Oscar/Stumpy the 2nd is somewhat retracted, so I'm currently playing with convex systems to see what I can do. The recovery has been difficult since I had these surgeries so close together - the healing in my abdomen is brutal.
I'm hoping that all of that stuff is behind (ha!) me at this point, and that I can look forward to getting my rectal repair/reconstruction some time in September. We're not sure how long after that I need to heal before we can reverse the ileostomy, but it'll be a while, I'm sure. Dr. M doesn't even know what the entire rectal operation will entail yet - my rear end is apparently complicated.
I'm sure I'll be posting on all other kinds of topics/threads at some point. My current, biggest concerns for myself have to do with pretty typical things - dealing with keeping myself hydrated, depression, intimacy, and ultimately, returning to work (which I probably won't be doing until after the new year). I'm pretty open about all of this, which is a good thing considering my job - I'm a college professor that works with pre-med students, so they're always interested in anything involving health.
Thinking back to this time, 4 years ago, I never would have imagined that this is where I'd be today. It's a humbling, life changing experience that I don't wish upon anyone, but at the same time, it might have also been something that I really needed. Strange how that all works out.
I have a long story (don't we all!) that I'm going to try to share in some sort of organized fashion.
In August, 2007, I started having this unbelievable pain in my rectum. Of course, I was an idiot, and was too embarrassed to go to a doctor or the ER, because I figured they'd look at me like I did something to cause the pain. Also, I was busy - I had finished my PhD the year before, was trying to get work done in a post-doctoral fellowship, was preparing to teach a new class, was engaged to be married (yes - WAS) - and this was all just before I turned 30.
When it finally reached the point when I could no longer sit or lay down, I decided to hit the ER, and found out I had a gigantic peri-rectal abscess that had ruptured. I was septic, and was rushed into surgery. Imagine my surprise when I woke up, understood 3 days later what had happened, realized I had drainage tubes coming out of my rear end... I screamed, and threw up on my nurse.
So began the journey.
That drainage operation was repeated in October 2007, and unfortunately, both of those drain tracks turned into fistulas - I had a double (Seton tubes) fistulotomy in July 2008.
FINALLY, in December 2008, I was able to have a colonoscopy, and we were able to see that yes indeed, I had a whopping case of Crohn's from my terminal ileum, through my colon and rectum. It was absolutely incredible to see the pictures and to see how much damage there was. I immediately started taking 6-MP, but 4 months later (April 2009) I had yet another abscess, and we decided it was time to try Remicade. I take my infusions every 6 weeks, and so far, that seems to keep the rectal abscesses and fistulas away. Also, the medications really seem to have cleared up most of the ulcers and other problems I had in the gut. My latest intestinal pictures are beautiful.
So... fast forward to last fall. I started having rectal pains again. I figured it was the revenge of the killer abscess, but a million doctors (GI, ER, surgery people) poked me and told me that while they thought they felt something there, it wasn't an abscess. I finally changed surgeons (and hospitals for this purpose), and within 5 minutes of having an anoscope inside me, the new surgeon basically said "Houston, we have a problem."
The problem? All of the rectal operations I had, with all of their tubes and tissue manipulations, had caused scar tissue to start wrapping around my rectum. It's strictured, and if we'd let this go longer, it would have closed off. How all of those other people missed this was beyond me.
Where am I now?
My new surgeon (Dr. M) suggested that I go on bowel rest for 6-8 weeks before having my rectal repair done. That means that I currently have a temporary loop ileostomy - something that I never, ever expected to have in my life.
Oscar the Grouch (or Stumpy... he has many names!) was born on June 7th. He was a normal looking stoma, and I was released from the hospital after 5 days. Unfortunately, a few days after my release, I started vomiting and being unable to keep stuff in. Stupidly, I didn't do anything about it, and let it go for a few more days. On June 19th, I was admitted to the hospital, and had my ENTIRE ileostomy redone on June 20th. It turns out that my bowel had gotten all twisted around and was a mess. I was in the hospital for 8 days with that one. Oscar/Stumpy the 2nd is somewhat retracted, so I'm currently playing with convex systems to see what I can do. The recovery has been difficult since I had these surgeries so close together - the healing in my abdomen is brutal.
I'm hoping that all of that stuff is behind (ha!) me at this point, and that I can look forward to getting my rectal repair/reconstruction some time in September. We're not sure how long after that I need to heal before we can reverse the ileostomy, but it'll be a while, I'm sure. Dr. M doesn't even know what the entire rectal operation will entail yet - my rear end is apparently complicated.
I'm sure I'll be posting on all other kinds of topics/threads at some point. My current, biggest concerns for myself have to do with pretty typical things - dealing with keeping myself hydrated, depression, intimacy, and ultimately, returning to work (which I probably won't be doing until after the new year). I'm pretty open about all of this, which is a good thing considering my job - I'm a college professor that works with pre-med students, so they're always interested in anything involving health.
Thinking back to this time, 4 years ago, I never would have imagined that this is where I'd be today. It's a humbling, life changing experience that I don't wish upon anyone, but at the same time, it might have also been something that I really needed. Strange how that all works out.
