- Joined
- Jul 18, 2010
- Messages
- 91
That is when they found the Crohns...I was 26 years old and sitting at work. All of a suddent there was a pain like I have never felt before in my lower right side. I keeled over and scared my boss half to death. The pain kinda subsided so I went home and straight to bed. My daughter was so frightened she called my Mom. Between the both of them they got me to the doctor.
I'm not sure about this next part and why he did this, but he told me my appendix burst and that he wouldn't advise surgery until my white blood count was down. So took heavy antibiotics for two weeks then had the surgery.
When I woke up the surgeon said there was good news and bad news...really what you want to hear from a surgeon, right? He said the appendix had encapsulated it self so there was no infection, but he found the right side of my colon was not good. They took a sample and he would get back to me with the answer. Well, I sure didn't rest easy after that.
About a week later, he calls and tells me I have Crohn's. Had no idea what the heck he was talking about, so I just sat down and cried...seemed like the appropriate thing to do at the time. He was a family friend, so he took my case very personally and sent me on an adventure to the book store with the names of some good books. After reading them, I don't really think I felt any better other than the fact that it appeared I wasn't terminal. About 10 weeks after the apendectomy, he did a right colectomy and removed about 2 feet of my colon/lower small intestine. When I recovered from that surgery, I felt like a million bucks. I didn't realize I had been so sick. When you get the bad stuff out it is amazing how good you feel!
At that time the only real effect I had from Crohns was the big D. Did Imodium, but found the cure was worse than the cause. The Imodium shut down my insides completely, and when they woke up, they woke up with a vengance. So I did what I have affectionally named, the "eat and s*&t diet". I new where every public bathroom was in the entire northern california and sourthern oregon region. My husband was a trooper and when I would get that pained look, he never even asked, just took the nearest exit.
Life went on and over the years I developed the dreaded fistula. I was so frightened with the first. Went to the same doctor that wouldn't advise the surgery the first time and after listening to what the surgeon was going to do to me, I told my husband, that I was sure I was going to get better and could just live through this. Little did I know that was the the first of many and life would be a living hell for me in the very near future. By that time my family friend had retired and I didn't have a clue as to who a good surgeon was. But one thing I knew for sure was that I was getting a new GP. This guy scared me to death.
In the midst of all this they tried 6MP, flagyl, so many others, I can't even remember their names. I felt like a poster child for Crohn's...turns out I was alergic to all of them and they did more harm than good. So I made another bad judgement call and decided that this is just the way life was going to be and I would live the best I could.
Another few years go by, MANY more fistula came about. By this time I was so miserable that I was willing to try anything. This was about the time that Remicade came into being. I also found one of the best doctors/surgeons in Northern California. I would do anything for him...except go on Remicade. It was before it was approved and the side affects scared me to death. The insurance wouldn't pay for it, but the drug company was going to kick in for it. I still didn't do it and so began my long haul with the fistula surgeries, setons etc.
The first surgery, I had 28 of them removed...not pleasant, but when I got home, I felt soooooo much better than I was on cloud 9. I felt I had found my cure. About 6 weeks after the first surgery I had to go back for a 2nd go. This worked for about 3 years, then had the 3rd and 4th surgeries. Again, worked for about 3 years and then the 5th and 6th surgeries.
Two days after the 6th surgery, we loaded up the Uhaul and moved to Wyoming. I know the timing sure wasn't good, and try driving 1200 miles on no pain meds (cause you are driving the Uhaul!) with your butt hurting like the dickens.
But, a year after we were here I heard about a GI in Montana that everyone raved about. So I made the leap and called him up. At the appointment, I knew I found my 2nd "best doctor in the world". I felt so blessed. I told him I was ready to go on Remicade...he looked at my medical history and gave me a hug and said "WHAT TOOK YOU SO LONG!!!"
The insurance approved and I started Remi in 2003. I never looked back. Had absolutely no bad reactions to it and looked forward to the 2 hour nap when I was there. The only bad thing was I had to drive 125 miles one way as no hospital, etc. here in No. Wyoming would help me. So that is what I do to this day. Hospital, treatment, Costco, lunch and home.
In 2008 I decided that I was cheap and wanted to try Humira. Human based drug, I could administer, insurance paid the same, and I didn't have to make the drive every 8 weeks...worked for me! Unfortunately, the Humira didn't work as well. After 18 mos on it, I went back to the Remi and never looked back (again!). Been on it a year now and am feeling great. Still some swelling, but I can live with it. The Big D hits every now and then, but it will never go away completely.
I have come to realize that I will never be 100%, but is sure is good to be 80%!!!!
And, the kicker to the story is, I feel I was lucky my appendix burst...I didn't have to go through all the horrible testing that most people do. There is always a silver lining...sometimes you just have to dig deep.
I'm not sure about this next part and why he did this, but he told me my appendix burst and that he wouldn't advise surgery until my white blood count was down. So took heavy antibiotics for two weeks then had the surgery.
When I woke up the surgeon said there was good news and bad news...really what you want to hear from a surgeon, right? He said the appendix had encapsulated it self so there was no infection, but he found the right side of my colon was not good. They took a sample and he would get back to me with the answer. Well, I sure didn't rest easy after that.
About a week later, he calls and tells me I have Crohn's. Had no idea what the heck he was talking about, so I just sat down and cried...seemed like the appropriate thing to do at the time. He was a family friend, so he took my case very personally and sent me on an adventure to the book store with the names of some good books. After reading them, I don't really think I felt any better other than the fact that it appeared I wasn't terminal. About 10 weeks after the apendectomy, he did a right colectomy and removed about 2 feet of my colon/lower small intestine. When I recovered from that surgery, I felt like a million bucks. I didn't realize I had been so sick. When you get the bad stuff out it is amazing how good you feel!
At that time the only real effect I had from Crohns was the big D. Did Imodium, but found the cure was worse than the cause. The Imodium shut down my insides completely, and when they woke up, they woke up with a vengance. So I did what I have affectionally named, the "eat and s*&t diet". I new where every public bathroom was in the entire northern california and sourthern oregon region. My husband was a trooper and when I would get that pained look, he never even asked, just took the nearest exit.
Life went on and over the years I developed the dreaded fistula. I was so frightened with the first. Went to the same doctor that wouldn't advise the surgery the first time and after listening to what the surgeon was going to do to me, I told my husband, that I was sure I was going to get better and could just live through this. Little did I know that was the the first of many and life would be a living hell for me in the very near future. By that time my family friend had retired and I didn't have a clue as to who a good surgeon was. But one thing I knew for sure was that I was getting a new GP. This guy scared me to death.
In the midst of all this they tried 6MP, flagyl, so many others, I can't even remember their names. I felt like a poster child for Crohn's...turns out I was alergic to all of them and they did more harm than good. So I made another bad judgement call and decided that this is just the way life was going to be and I would live the best I could.
Another few years go by, MANY more fistula came about. By this time I was so miserable that I was willing to try anything. This was about the time that Remicade came into being. I also found one of the best doctors/surgeons in Northern California. I would do anything for him...except go on Remicade. It was before it was approved and the side affects scared me to death. The insurance wouldn't pay for it, but the drug company was going to kick in for it. I still didn't do it and so began my long haul with the fistula surgeries, setons etc.
The first surgery, I had 28 of them removed...not pleasant, but when I got home, I felt soooooo much better than I was on cloud 9. I felt I had found my cure. About 6 weeks after the first surgery I had to go back for a 2nd go. This worked for about 3 years, then had the 3rd and 4th surgeries. Again, worked for about 3 years and then the 5th and 6th surgeries.
Two days after the 6th surgery, we loaded up the Uhaul and moved to Wyoming. I know the timing sure wasn't good, and try driving 1200 miles on no pain meds (cause you are driving the Uhaul!) with your butt hurting like the dickens.
But, a year after we were here I heard about a GI in Montana that everyone raved about. So I made the leap and called him up. At the appointment, I knew I found my 2nd "best doctor in the world". I felt so blessed. I told him I was ready to go on Remicade...he looked at my medical history and gave me a hug and said "WHAT TOOK YOU SO LONG!!!"
The insurance approved and I started Remi in 2003. I never looked back. Had absolutely no bad reactions to it and looked forward to the 2 hour nap when I was there. The only bad thing was I had to drive 125 miles one way as no hospital, etc. here in No. Wyoming would help me. So that is what I do to this day. Hospital, treatment, Costco, lunch and home.
In 2008 I decided that I was cheap and wanted to try Humira. Human based drug, I could administer, insurance paid the same, and I didn't have to make the drive every 8 weeks...worked for me! Unfortunately, the Humira didn't work as well. After 18 mos on it, I went back to the Remi and never looked back (again!). Been on it a year now and am feeling great. Still some swelling, but I can live with it. The Big D hits every now and then, but it will never go away completely.
I have come to realize that I will never be 100%, but is sure is good to be 80%!!!!
And, the kicker to the story is, I feel I was lucky my appendix burst...I didn't have to go through all the horrible testing that most people do. There is always a silver lining...sometimes you just have to dig deep.
!!
