Disclaimer: This piece is based solely on my experience with ostomy surgery. Chances are that each person dealing with their own ostomy surgery will each have their own unique experience. My goal is to only share what I went through as a means of support and understanding to others going through what I did.
I woke up from the surgery with 40 stitches from my belly button to the bottom of my chest. “This doesn’t look right”, I thought and it made me reflect on all that I had been through up to this point.
In the spring of 1999, I was going through a miserable time. Closing in on graduating from college I was constantly in the bathroom and doubling over in pain. I got so sick that my parents finally forced me to go to the doctor where it was assumed I had Crohn’s disease. At that point I had my first “reboot” in the hospital but was able to finish school and move on from there.
“Reboot” is a term that I have used for the majority of my hospital stints. Since I’m a computer guy it makes sense because in my experience, I would get sick to the point I couldn’t go on anymore, rush to the emergency room, and spend a few days being on fluids and eventually being let out of the hospital to carry on albeit a bit more cautious from a diet perspective.
Over the years, I have had about 4 or 5 of these “reboots”. The way I responded to them, I knew that I was very sick, but I never let it get me down and knew that I’d be out in a few days. I consider myself lucky to not have any major reactions to food. Most symptoms I have with Crohn’s usually rear their head when I am extremely stressed in work or in life. I will say that I have had both frustrating times and hilarious stories that have come out of my hospital stays. Including the time I received a couple of impromptu sermons in my hospital room by a local Baptist church my hospital roommate was from.
I don’t believe I’ve ever been given a 100% diagnosis of Crohn’s. I’m not sure if it’s just not been something a doctor wants to say with certainty or that Crohn’s disease can start at any time. I think some of you can understand not knowing exactly what you really had due to a doctor’s lack of confidence in a diagnosis.
Fast forward to 2012: The year had not started off well as I had become very sick near the end of January. While starting a new job I didn’t want to get sick (do we ever) and be unable to be paid due to used up vacation days. This became a pretty vicious cycle of my going to the emergency room staying a couple days & getting back out. I ended up with 3 short stays in the hospital through January & February.
Near the end of February my doctor told me I had an abscess in my colon and they inserted a temporary tube to extract the infection out into a little bag. This was pretty scary for me but I handled it the best I could. I tried to go back to work and though the abscess was better but little did I know it was about to get a whole lot worse.
A week after my third stint on Friday, March 2nd I was at my new job and had been feeling really good. That day I had some medical supply issues with the temporary tube and decided I’d be ok through the day just to clamp it and go to work. During the afternoon around 3 o’clock and had major chest pain. I didn’t know what to do. In fact, I thought it was a heart attack. Thinking that it was just related to the medical supply issues I had earlier, I gutted it out and drove home (stupidest decision I’ve ever made). I got home, got things fixed back up but the pain would not subside, it increased. I did the only thing I could being at home by myself and called 911.
Granted, I wish I had access to that 911 call looking back on it. The lady was asking me all kinds of questions I didn’t want to answer and I cussed her out like I had no one in my life. They sent the fire department to my house which is less than a mile away. Now ladies, despite what you are thinking, the firemen were not shirtless and sweaty in their suspenders and slickers. Quickly after they evaluated me, it was not a heart attack and they deduced that it was major infection in my colon/large intestine. I honest to God have never felt pain like that in my life.
After a couple days in the hospital my surgeon chose to do an ileostomy surgery. Once they got in there the infection was so bad they had to change course and do an emergency colostomy surgery. They removed 6 inches of my large intestine that was infected and made part of my large intestine dormant. When I woke up from surgery, I saw the staples I mentioned earlier and placed an ostomy pouch on my stomach above my belly button. I tend to call it my “digestive detour” or “front butt” for lack of a better term. Depending on the kind of bag you have on there is a circular wafer that sticks to your skin and a ring that connects to a bag. So, I no longer use my b-hole, basically.
For the month of March I was kept in the hospital for recovery, and because I was sooo sick the recovery time was very long. I went at least three weeks not permitted to eat or drink. I was solely on IV, TPN (Google it), and pain meds. I had some fun and not so fun times with those pain meds, but overall they rule.
I was there long enough to know about every nurse that worked the floor. I also became friends with some of my doctors which is helpful because I dislike (hate) doctors. Sometimes I would wake up in the middle of the night and walk the floor. I did this so much that a few of the nurses called me “The Midnight Rambler”. If I could give anyone that has had an ostomy surgery, start walking as soon as possible if you are able. I believe the small exercise that I did was really important to my recovery.
While the surgery and recovery were/has been long process, mentally taxing, etc. etc. I managed not to lose my sense of humor too much. The few times I did, you know I was in bad shape.
I’ve been doing pretty well since I was released. I’m back to work and still getting used to my bodily changes. I’ve had my staples and sutures removed. I’ll just have a nice scar for a while. I still have some issues with getting up and down, out of bed, and don’t move as quickly as I once did. For the most part am back to about 95%.
The prognosis for me right now is that the ostomy will be temporary for a while unless they don’t feel it is safe to do re-attachment surgery. They say at least 6 to 12 months before they even try. I’m leaning more towards longer just because I am now comfortable with the ostomy and want to wait a bit longer before having another surgery.
I do want to state that I would not have made it through as well as I did without my family and girlfriend. Both of my parents sacrificed a lot of time to be there almost every day and stay in the hospital. My girlfriend Jessica was also there as much as possible and sacrificed vacation days and then some to be with me. She also has never flinched to this day with some of the grotesque issues and things she’s had to deal with. I’m extremely lucky to have her.
What I know now is although serious, my condition is nowhere close to some of you that I have talked with and heard from. I realize my journey is far from over, but I want to provide support for those going through it, or about to. Feel free to email me at firstname.lastname@example.org if you ever need some help or an opinion about what it might be like. I’m not a doctor, but I’ll help you find the best answer I can or point you in the right direction.
So, that’s my story, if you ever feel compelled to tell your story on our blog, all you have to do is ask.
Thanks for reading,