Published On: 03-05-2010 07:45 PM
Blog Category: No Category
Blog Tags: im new to this site
Hi Everyone!
I've never blogged before so forgive any awkwardness. My name is Sharon and I was diagnosed with Ulcerative Colitis in 1980 when I was 20 years old. I've got alot of experience with the disease and the many "adventures" it's taken me on. I was on and off Prednisone for years. Mostly for 2 or 3 months at a time. Each time I gained about 30 pounds. The longest I ever had to take the drug was 2 years!!! OH MY GOD THAT SUCKED! I had just met my future husband and soon after dealing with the stress of his ex-wife I fell out of remission and could not seem to get the disease under control. I gained 60 pounds right off the bat. My face and back broke out in horrible acne and I was always sweating. I asked him how he could stand to look at me. My amazing husband's response was, "You are so beautiful. You'll only be more beautiful when you get off this drug." We have been together since 1992.
The longest I was ever in remission was 2 years. My GI doctor had me on Imuran and Dipentum. The drag about Imuran is that one of the possible side effects is lymph cancer. But I was able to avoid that and stay in remission until I found out I was losing my job of 10 years. UC symptoms began showing up within one week. Once the disease came back I couldn't seem to go into remission again. It was 2003. I had now had UC for 23 years. They say that after 10 years your risk of colon cancer goes up 2% each year. That made my risk 26% higher than the average person. Coupled with the fact that cancer runs very high in my family and that my dad had just been diagnosed with colorectal cancer the year before I knew it was time to have J-pouch surgery. It was either do it now or do it when I had to have chemo and radiation. A J-pouch is sort of like a cut and paste. They cut out my colon and brought down my small intestine and fashioned a sort of new colon (as close as you could come to a new colon, anyway) out of it, in the shape of a J. This prevents the need for an ostomy or outer bag (all of this explanation is to the best of my knowledge, however, I am not an expert for anyone else, just my own experience.) The J-pouch worked out very well for 6 years. I had to get used to not having the same absorption that I would if I had my colon. That meant going to the bathroom more frequently depending upon what I ate. If I wanted to eat something that I knew was going to keep me active (in the bathroom) then I would just plan to be home that evening. I called it TAKING THE HIT. I knew what I was going to be in for but sometimes you just have to have the food you want and are willing to suffer the consequences.
After 6 years, however, I began to suffer from horrendous belly aches. This started in December 2008. Out of nowhere I would suddenly be doubled over in agony. At first these attacks happened maybe once every 10 days or so. Then they became increasingly more frequent. It felt as though once the food I ate left my stomach it would just stop. This was causing me so much pain because I was unable to go to the bathroom. I saw so many different doctors who kept telling me that there wasn't anything wrong with me and that I was just going to have to go home and live with it. I tried to explain that I couldn't eat and that if I just went home and "lived with it" I would eventually die of starvation. Many doctors giggled because at the time I weighed almost 200 pounds. I guess it's hard to imagine a 5'7" woman who weighed 200 pounds starving to death. Test after test seem to reveal nothing. Finally I saw the surgeon who performed my J-pouch surgery. He looked at the test results and concluded that I had a blockage or several blockages in my small intestine known as adhesions. He performed surgery in April 2009. He was astounded at what he found. He told me that my intestines looked like a "frozen block of cement." I had so many adhesions it was almost impossible for the food to get through me. The surgery was 4 hours long and the doctor stopped at the J-pouch for fear of damaging it and giving me a permanent ostomy. Unfortunately the surgery was unsuccessful and the blockages continued. Since I was unable to eat I was put on TPN which is a liquid form of nutrition that goes into you through an I.V. at night. This was the only way I could get enough calories to survive. My blood would get tested every week because apparently TPN can be very hard on your liver. One day I got a phone call from a doctor who said I had to go to the hospital immediately because my hemoglobin (red blood cell count) was 4 when it should be a minimum of 12.
At the hospital they performed a colonoscopy. Something I'm very used to. Soon into my hospital stay I developed horrendous diarrhea. It wouldn't stop. I was told I had contracted CDIF during the colonoscopy. This is a horrible bacterial infection that you get from a hospital or doctor's office. Then something happened that I didn't even know was physically possible. I began having diarrhea out of my vagina!!! This is known as a fistula. OH MY GOD! I couldn't believe the horror. Apparently when they did the biopsy during the colonoscopy the CDIF ate through that site and through my vaginal wall thus creating a new route to poop out of, uncontrollably! To add to this nightmare was the fact that I had an internal abscess that the doctors couldn't do anything about until it got big enough to reach the surface of my skin. A few months later it did so a surgery was performed to extract the infection. Of course the site of the abscess was my butt cheek, very close to my anus. As luck would have it I developed another fistula and was now pooping uncontrollably through my butt cheek as well. Because of my malnutrition, I was now down to 120 pounds, I began losing my hair.
Finally, the big decision had to be made. I was scheduled for an ileostomy surgery for January 6, 2010. It was the surgery I had been running from since 1980 but I no longer had any other choice. If I didn't have it I would die. So, here I am, about 2 months later and, I'm living with a bag. It's not easy. It's scary, very scary and sometimes I'm overwhelmed by it. But I'm alive today. I'm eating. I'm learning how to live my life a new way. I've not gone out into the world really except for once and my bag gave out on me. I survived. I had a backup with me. My sister helped me through it. And with loving support of my family and friends I'm getting through it. I look forward to the day that my bag is no longer an issue. I'm holding steady at 125 pounds, a good weight for me. My hair is growing back, slowly, but it's growing back. I rely heavily on my loved ones for support and they've not let me down. For anyone reading this I hope that it helps you to know that you're not alone. When I found this site I know it helped me. God Bless, Sharon
if someone loves you then you must be worth loving. go easy on yourself
Diagnosed with Ulcerative Colitis 9/1980
J-pouch surgery 5/2003
Ileostomy surgery 1/2010
Blog Category: No Category
Blog Tags: im new to this site
Hi Everyone!
I've never blogged before so forgive any awkwardness. My name is Sharon and I was diagnosed with Ulcerative Colitis in 1980 when I was 20 years old. I've got alot of experience with the disease and the many "adventures" it's taken me on. I was on and off Prednisone for years. Mostly for 2 or 3 months at a time. Each time I gained about 30 pounds. The longest I ever had to take the drug was 2 years!!! OH MY GOD THAT SUCKED! I had just met my future husband and soon after dealing with the stress of his ex-wife I fell out of remission and could not seem to get the disease under control. I gained 60 pounds right off the bat. My face and back broke out in horrible acne and I was always sweating. I asked him how he could stand to look at me. My amazing husband's response was, "You are so beautiful. You'll only be more beautiful when you get off this drug." We have been together since 1992.
The longest I was ever in remission was 2 years. My GI doctor had me on Imuran and Dipentum. The drag about Imuran is that one of the possible side effects is lymph cancer. But I was able to avoid that and stay in remission until I found out I was losing my job of 10 years. UC symptoms began showing up within one week. Once the disease came back I couldn't seem to go into remission again. It was 2003. I had now had UC for 23 years. They say that after 10 years your risk of colon cancer goes up 2% each year. That made my risk 26% higher than the average person. Coupled with the fact that cancer runs very high in my family and that my dad had just been diagnosed with colorectal cancer the year before I knew it was time to have J-pouch surgery. It was either do it now or do it when I had to have chemo and radiation. A J-pouch is sort of like a cut and paste. They cut out my colon and brought down my small intestine and fashioned a sort of new colon (as close as you could come to a new colon, anyway) out of it, in the shape of a J. This prevents the need for an ostomy or outer bag (all of this explanation is to the best of my knowledge, however, I am not an expert for anyone else, just my own experience.) The J-pouch worked out very well for 6 years. I had to get used to not having the same absorption that I would if I had my colon. That meant going to the bathroom more frequently depending upon what I ate. If I wanted to eat something that I knew was going to keep me active (in the bathroom) then I would just plan to be home that evening. I called it TAKING THE HIT. I knew what I was going to be in for but sometimes you just have to have the food you want and are willing to suffer the consequences.
After 6 years, however, I began to suffer from horrendous belly aches. This started in December 2008. Out of nowhere I would suddenly be doubled over in agony. At first these attacks happened maybe once every 10 days or so. Then they became increasingly more frequent. It felt as though once the food I ate left my stomach it would just stop. This was causing me so much pain because I was unable to go to the bathroom. I saw so many different doctors who kept telling me that there wasn't anything wrong with me and that I was just going to have to go home and live with it. I tried to explain that I couldn't eat and that if I just went home and "lived with it" I would eventually die of starvation. Many doctors giggled because at the time I weighed almost 200 pounds. I guess it's hard to imagine a 5'7" woman who weighed 200 pounds starving to death. Test after test seem to reveal nothing. Finally I saw the surgeon who performed my J-pouch surgery. He looked at the test results and concluded that I had a blockage or several blockages in my small intestine known as adhesions. He performed surgery in April 2009. He was astounded at what he found. He told me that my intestines looked like a "frozen block of cement." I had so many adhesions it was almost impossible for the food to get through me. The surgery was 4 hours long and the doctor stopped at the J-pouch for fear of damaging it and giving me a permanent ostomy. Unfortunately the surgery was unsuccessful and the blockages continued. Since I was unable to eat I was put on TPN which is a liquid form of nutrition that goes into you through an I.V. at night. This was the only way I could get enough calories to survive. My blood would get tested every week because apparently TPN can be very hard on your liver. One day I got a phone call from a doctor who said I had to go to the hospital immediately because my hemoglobin (red blood cell count) was 4 when it should be a minimum of 12.
At the hospital they performed a colonoscopy. Something I'm very used to. Soon into my hospital stay I developed horrendous diarrhea. It wouldn't stop. I was told I had contracted CDIF during the colonoscopy. This is a horrible bacterial infection that you get from a hospital or doctor's office. Then something happened that I didn't even know was physically possible. I began having diarrhea out of my vagina!!! This is known as a fistula. OH MY GOD! I couldn't believe the horror. Apparently when they did the biopsy during the colonoscopy the CDIF ate through that site and through my vaginal wall thus creating a new route to poop out of, uncontrollably! To add to this nightmare was the fact that I had an internal abscess that the doctors couldn't do anything about until it got big enough to reach the surface of my skin. A few months later it did so a surgery was performed to extract the infection. Of course the site of the abscess was my butt cheek, very close to my anus. As luck would have it I developed another fistula and was now pooping uncontrollably through my butt cheek as well. Because of my malnutrition, I was now down to 120 pounds, I began losing my hair.
Finally, the big decision had to be made. I was scheduled for an ileostomy surgery for January 6, 2010. It was the surgery I had been running from since 1980 but I no longer had any other choice. If I didn't have it I would die. So, here I am, about 2 months later and, I'm living with a bag. It's not easy. It's scary, very scary and sometimes I'm overwhelmed by it. But I'm alive today. I'm eating. I'm learning how to live my life a new way. I've not gone out into the world really except for once and my bag gave out on me. I survived. I had a backup with me. My sister helped me through it. And with loving support of my family and friends I'm getting through it. I look forward to the day that my bag is no longer an issue. I'm holding steady at 125 pounds, a good weight for me. My hair is growing back, slowly, but it's growing back. I rely heavily on my loved ones for support and they've not let me down. For anyone reading this I hope that it helps you to know that you're not alone. When I found this site I know it helped me. God Bless, Sharon
if someone loves you then you must be worth loving. go easy on yourself
Diagnosed with Ulcerative Colitis 9/1980
J-pouch surgery 5/2003
Ileostomy surgery 1/2010
