This series of blogs may discuss topics not normally discussed in polite
conversation. This includes parts of the digestive tract and intimate
details of surgeries.
At the urging of my wife (her blog here: http://b3lifeonmentalpause.blogspot.com/2013/07/holy-testosterone-batman.html), I will share a bit about my experiences with both Crohn's Disease and athletics (and running in particular).
In today's blog, I will provide a short Crohn's biography.
In 1990, I went to donate blood. The Red Cross performed a blood screen and rejected me as a donor. They told me to go see my doctor as soon as possible but they refused to tell me why.
At my doctor's office, I found that I was very anemic (hemoglobin around 10.5 gm/dl). With a few other tests (fecal occult blood test), my GP doctor discovered that I had blood in my stool and he referred me to a GI specialist.
Unfortunately for me, I discovered this a few weeks prior to my planned wedding date. The GI doctor began a series of tests that took more than a week to complete. Each test turned up no results, meaning they found no evidence of bleeding in my GI tract. With only 4 days left before my wedding, the doctors told me that if the colonoscopy did not show where I was bleeding, then they would have to perform exploratory surgery and it would have to be performed before the wedding!
Luckily, my GI doctor was very skilled and able to work the scope several inches into my terminal ileum and find the site of my Crohn's Disease.
My initial treatment was prednisone, sulfasalazine, and iron. Prednisone worked wonders and cleared up my symptoms. It acted like a wonder drug. It increased my energy levels, stopped the bleeding, and stopped my abdominal cramping.
For the next 8 years, I bounced between needing and not needing prednisone to control my Crohn's symptoms. Over this time, my Crohn's symptoms worsened, prednisone became less effective, and I started suffering severe negative side effects from the steroids.
In late 1998, my company sent me on a business trip. During the trip, I began bleeding heavily into my intestines. So heavily that I had severe diarrhea that was completely black from the digested blood. While at work the next day, my co-workers mentioned that I was extremely pale and looked “very bad.” Therefore, I went to an emergency room for evaluation. They performed a blood test and found my hemoglobin was about 6 gm/dl. Since I normally run 16+ gm / dl, it meant that I had lost almost 2/3 of my blood in 2 days. The hospital admitted me.
The next 6 days included conflicting orders by different groups of specialists, multiple blood transfusions, blood tests performed every 4 hours, and not being permitted to eat (the thinking was that food moving through the intestines might abrade any clots keeping me from bleeding). I will write up the details of this hospital stay as another post as I think there are important lessons that I should share with others who might experience similar problems.
Ultimately, the doctors performed a small bowel resection and removed 14 inches of the terminal ileum affected by my Crohn’s Disease.
That operation significantly lessened my major symptoms and they are still (July of 2013) mostly under control. I experience very little cramping, little or no blood loss, few night sweats (just 2-4 per month now). However, I still suffer from severe diarrhea, meaning on a good day I only need to go to the restroom 2-4 times. On a bad day, I may need to defecate eight or more times per day.
Since 1998, my Crohn’s Disease has:
Triggered two kidney stones (2007 & 2012), the second of which had to be surgically removed.
Triggered three fistulas (2004, 2008, & 2013). My first fistula required two surgeries. The first placed a seton. The second removed the seton and cut open the fistula track. This entailed an *extremely* painful recovery. The second surgery simply required gluing the top end of the fistula shut, after which I healed with very little pain.
This brings me to the current date (7/31/2013). Today I will have the third surgery for my third fistula. The first two surgeries for this fistula were not that painful (cutting and draining an abscess that formed from the fistula and a seton placement). Today’s surgery has a low probability of success; however, this approach has no negative consequences. If it fails, it does not prevent the doctor from attempting other possible approaches. The more radical surgeries are more likely to success, however, if they fail then they cannot try other approaches and it could cause incontinence.
In my next post, I will discuss some aspects of running with Crohn’s Disease and in the one that follows that, I will discuss the various Crohn’s medications and treatments and how they have affected my athletics and me.
You have been warned
At the urging of my wife (her blog here: http://b3lifeonmentalpause.blogspot.com/2013/07/holy-testosterone-batman.html), I will share a bit about my experiences with both Crohn's Disease and athletics (and running in particular).
In today's blog, I will provide a short Crohn's biography.
In 1990, I went to donate blood. The Red Cross performed a blood screen and rejected me as a donor. They told me to go see my doctor as soon as possible but they refused to tell me why.
At my doctor's office, I found that I was very anemic (hemoglobin around 10.5 gm/dl). With a few other tests (fecal occult blood test), my GP doctor discovered that I had blood in my stool and he referred me to a GI specialist.
Unfortunately for me, I discovered this a few weeks prior to my planned wedding date. The GI doctor began a series of tests that took more than a week to complete. Each test turned up no results, meaning they found no evidence of bleeding in my GI tract. With only 4 days left before my wedding, the doctors told me that if the colonoscopy did not show where I was bleeding, then they would have to perform exploratory surgery and it would have to be performed before the wedding!
Luckily, my GI doctor was very skilled and able to work the scope several inches into my terminal ileum and find the site of my Crohn's Disease.
My initial treatment was prednisone, sulfasalazine, and iron. Prednisone worked wonders and cleared up my symptoms. It acted like a wonder drug. It increased my energy levels, stopped the bleeding, and stopped my abdominal cramping.
For the next 8 years, I bounced between needing and not needing prednisone to control my Crohn's symptoms. Over this time, my Crohn's symptoms worsened, prednisone became less effective, and I started suffering severe negative side effects from the steroids.
In late 1998, my company sent me on a business trip. During the trip, I began bleeding heavily into my intestines. So heavily that I had severe diarrhea that was completely black from the digested blood. While at work the next day, my co-workers mentioned that I was extremely pale and looked “very bad.” Therefore, I went to an emergency room for evaluation. They performed a blood test and found my hemoglobin was about 6 gm/dl. Since I normally run 16+ gm / dl, it meant that I had lost almost 2/3 of my blood in 2 days. The hospital admitted me.
The next 6 days included conflicting orders by different groups of specialists, multiple blood transfusions, blood tests performed every 4 hours, and not being permitted to eat (the thinking was that food moving through the intestines might abrade any clots keeping me from bleeding). I will write up the details of this hospital stay as another post as I think there are important lessons that I should share with others who might experience similar problems.
Ultimately, the doctors performed a small bowel resection and removed 14 inches of the terminal ileum affected by my Crohn’s Disease.
That operation significantly lessened my major symptoms and they are still (July of 2013) mostly under control. I experience very little cramping, little or no blood loss, few night sweats (just 2-4 per month now). However, I still suffer from severe diarrhea, meaning on a good day I only need to go to the restroom 2-4 times. On a bad day, I may need to defecate eight or more times per day.
Since 1998, my Crohn’s Disease has:
Triggered two kidney stones (2007 & 2012), the second of which had to be surgically removed.
Triggered three fistulas (2004, 2008, & 2013). My first fistula required two surgeries. The first placed a seton. The second removed the seton and cut open the fistula track. This entailed an *extremely* painful recovery. The second surgery simply required gluing the top end of the fistula shut, after which I healed with very little pain.
This brings me to the current date (7/31/2013). Today I will have the third surgery for my third fistula. The first two surgeries for this fistula were not that painful (cutting and draining an abscess that formed from the fistula and a seton placement). Today’s surgery has a low probability of success; however, this approach has no negative consequences. If it fails, it does not prevent the doctor from attempting other possible approaches. The more radical surgeries are more likely to success, however, if they fail then they cannot try other approaches and it could cause incontinence.
In my next post, I will discuss some aspects of running with Crohn’s Disease and in the one that follows that, I will discuss the various Crohn’s medications and treatments and how they have affected my athletics and me.
So glad you are doing this! You never know who you may inspire to do things they thought they couldn't because they have a disease. Very proud of you.
ReplyDeleteThis is interesting to me on a clinical level. I have had clients with Crohn's.
ReplyDeleteVery glad you are writing this. Always wish the best for you nephew and a cure someday soon. Very proud of you. This will be great for others with the same or similar situations. You have always amazed me how you have never let Crohn's control your life, instead you have always taken control of Crohn's.
ReplyDelete