Hello everyone, I'm Kendra, but usually go by Ken. I was officially diagnosed when I was 8 years old, but had been suffering symptoms since I was born. When my symptoms went from my joints to my gut, it was pretty easy to diagnose as my mother has been struggling with Crohn's since she was 12.
I've had about 15 surgeries. Not all were small bowel resections, but they were all connected to Crohn's in some way. I started off with ankle surgeries when I was 4 and continuing on from there. The year I was 8 I spent much of my time in one hospital or another. After a sbr at age 8, I went into remission for 8 years.
But when I was 16 I started flaring and haven't had much time without problems. Sbr at 16, 21, 22 & 25. Ovarian cyst surgeries at 18 & 20. My gallbladder came out at 29. There was a bunch of other issues and surgeries in there. A couple oral surgeries and broken bones needing surgeries due to weakness caused by prednisone.
When I was 8 years old my doctors had be on 180mg/qd prednisone. We now know just how dangerous that is for a 38 pound child. I was quite the mess. Looking back I'm quite upset that I was treated, medically, the same way my mother had been almost 30 years earlier.
Since then, as everyone knows, there's been huge strides in meds for Crohn's and I've tried almost all of them. When budesinide was approved in Canada, we discussed sending me up to get it. We've looked at different medical trials, but none have worked out as there's virtually no trials up here in Maine. When Remicade was approved I brought the info to my doctor. He said it wasn't approved. I showed him the papers that it had been approved a couple days earlier. We had to wait for it to become available and I was the first in Maine to get it. I was also one of the few who had a severe reaction to Remicade and they had no bloody clue what to do about it. What fun!
I've been basically on the edge of not in remission, but not bad enough to really do anything about it until Christmas 2009. After all my surgeries, times in the hospital and ick, that was my first Christmas in the hospital. I had a partial blockage and my dog (Dragon, he's a maltipoo) had been in bed with me for the week before I went in. He knew something was seriously wrong. He's since become my service dog. (More on that later.)
While I was in over Christmas I met my new GI and I'm so happy! He was covering over the holiday as he's Jewish and I love him like no other GI I've had. I was also faced with learning that my surgeon (he's operated on my mother for her Crohn's & gallbladder, my father's hernia and my Crohn's as well as ovarian cysts - for 13 years) had a major spinal injury and will never operate again. I'm still shaken and lost over it.
I went back in the hospital Feb 2010 with the partial blockage acting up again. After stating I did NOT want steroids, I was given them against my wishes. I now have 40lbs to lose from one doctor playing God after I specifically stated no. From then I went through the gamut of tests, put on Humira, been to a neurologist, have serious neuropathy in both arms and legs as well as serious numb spots. So I'm back on B12 shots (YAY!).
But then, over New Years I was in severe pain - blockage spot - so my GI told me to head to the hospital. Spent my first New Years in the hospital. Due to many major snow storms, it took me a bit to see my GI. We're doubling up on my Humira and deciding in a month if we're going to have to go under the knife again. I'm really at a loss over this as I know how horrible it is and the recovery time is longer and longer each time as I get older.
About the service dog thing - Dragon is amazing. He knows when I'm in pain before I know it and tells me so. He's also aware of when my blood pressure drops too low (on bp pills for low blood pressure and very high pulse rate). The wildest thing he does is to drag me to public bathrooms before I know my insides are going to explode. The first time was strange, since then I've learned to listen to him. When he becomes unconsolable, even my daughter asks me what's wrong with my body. He's quite the amazing little guy and I don't go anywhere without him.
What else about me? I took in a teen girl when her father wasn't treating her well. I mothered her as much as I could as she pushed back against it while knowing I was doing it out of love. She now calls me Mom and I'm looking into adopting her even though she's now 24. I live with my boyfriend and have for almost three years. He has full custody of his kids. 17, 14 and 7. They're all great kids and I've turned into the their mom. We're looking into my being able to adopt them. I can the boys as they're old enough to sign off themselves. We're just not going to be able to with Sam as she's young and her mother won't abide by that. Their mother is stone cold crazy and the bane of our family life, but we'll get through it.
I'm disabled, have been for about 14 years, but I write. I work online writing and while I'm not paid very much, I love it. It's more about keeping me busy, but flexible enough for my body to come first.
That's me in more than a nutshell. It's the writer in me. I get going and just can't stop. If you've read this far, thanks for hanging in there through my babbling.
I've had about 15 surgeries. Not all were small bowel resections, but they were all connected to Crohn's in some way. I started off with ankle surgeries when I was 4 and continuing on from there. The year I was 8 I spent much of my time in one hospital or another. After a sbr at age 8, I went into remission for 8 years.
But when I was 16 I started flaring and haven't had much time without problems. Sbr at 16, 21, 22 & 25. Ovarian cyst surgeries at 18 & 20. My gallbladder came out at 29. There was a bunch of other issues and surgeries in there. A couple oral surgeries and broken bones needing surgeries due to weakness caused by prednisone.
When I was 8 years old my doctors had be on 180mg/qd prednisone. We now know just how dangerous that is for a 38 pound child. I was quite the mess. Looking back I'm quite upset that I was treated, medically, the same way my mother had been almost 30 years earlier.
Since then, as everyone knows, there's been huge strides in meds for Crohn's and I've tried almost all of them. When budesinide was approved in Canada, we discussed sending me up to get it. We've looked at different medical trials, but none have worked out as there's virtually no trials up here in Maine. When Remicade was approved I brought the info to my doctor. He said it wasn't approved. I showed him the papers that it had been approved a couple days earlier. We had to wait for it to become available and I was the first in Maine to get it. I was also one of the few who had a severe reaction to Remicade and they had no bloody clue what to do about it. What fun!
I've been basically on the edge of not in remission, but not bad enough to really do anything about it until Christmas 2009. After all my surgeries, times in the hospital and ick, that was my first Christmas in the hospital. I had a partial blockage and my dog (Dragon, he's a maltipoo) had been in bed with me for the week before I went in. He knew something was seriously wrong. He's since become my service dog. (More on that later.)
While I was in over Christmas I met my new GI and I'm so happy! He was covering over the holiday as he's Jewish and I love him like no other GI I've had. I was also faced with learning that my surgeon (he's operated on my mother for her Crohn's & gallbladder, my father's hernia and my Crohn's as well as ovarian cysts - for 13 years) had a major spinal injury and will never operate again. I'm still shaken and lost over it.
I went back in the hospital Feb 2010 with the partial blockage acting up again. After stating I did NOT want steroids, I was given them against my wishes. I now have 40lbs to lose from one doctor playing God after I specifically stated no. From then I went through the gamut of tests, put on Humira, been to a neurologist, have serious neuropathy in both arms and legs as well as serious numb spots. So I'm back on B12 shots (YAY!).
But then, over New Years I was in severe pain - blockage spot - so my GI told me to head to the hospital. Spent my first New Years in the hospital. Due to many major snow storms, it took me a bit to see my GI. We're doubling up on my Humira and deciding in a month if we're going to have to go under the knife again. I'm really at a loss over this as I know how horrible it is and the recovery time is longer and longer each time as I get older.
About the service dog thing - Dragon is amazing. He knows when I'm in pain before I know it and tells me so. He's also aware of when my blood pressure drops too low (on bp pills for low blood pressure and very high pulse rate). The wildest thing he does is to drag me to public bathrooms before I know my insides are going to explode. The first time was strange, since then I've learned to listen to him. When he becomes unconsolable, even my daughter asks me what's wrong with my body. He's quite the amazing little guy and I don't go anywhere without him.
What else about me? I took in a teen girl when her father wasn't treating her well. I mothered her as much as I could as she pushed back against it while knowing I was doing it out of love. She now calls me Mom and I'm looking into adopting her even though she's now 24. I live with my boyfriend and have for almost three years. He has full custody of his kids. 17, 14 and 7. They're all great kids and I've turned into the their mom. We're looking into my being able to adopt them. I can the boys as they're old enough to sign off themselves. We're just not going to be able to with Sam as she's young and her mother won't abide by that. Their mother is stone cold crazy and the bane of our family life, but we'll get through it.
I'm disabled, have been for about 14 years, but I write. I work online writing and while I'm not paid very much, I love it. It's more about keeping me busy, but flexible enough for my body to come first.
That's me in more than a nutshell. It's the writer in me. I get going and just can't stop. If you've read this far, thanks for hanging in there through my babbling.
!
