Jay’s Battle w/Short Bowel Syndrome
Donation protected
Hello, my name is Jay and as I sit and write this I am laying in the Jefferson wing of Morristown Memorial Hospital which is my 6Th admission in the past year and a half. Normally before any of this happened to me I was typical middle-aged tattooed Star Wars geek who liked to game and play with my little boy. I have been married to my beautiful wife for the last 15 years and we have a wonderful three year old son. I work in the public safety department for The Jersey City Police Department. In 2005, I began my career as an 911 dispatcher and as of 2013 I transferred to the Bureau of Criminal Identification as an I.D. Officer and I am also the shop manager at the Ink Gallery Tattoo studio in Staten Island. NY.
I thought I had planned for everything in life, but the one thing that I did not plan for was this long-term, life threatening illness. This illness has affected me both physically and financially. This is going to be a life- long battle for me and my family. Your donations will go towards the outstanding medical bills that I have already acquired as well as future ones. They will also help with the monthly medication costs and the daily living expenses for my wife and three year old son.
I was out of work from November 2014 to October 2015 most of which was without pay. I have used all of my savings. I have returned to work on modified duty. Due to the complications of my illness, I have had to call out sick and missed medical testing appointments as there are times when I am unable to leave the house
The true nature of my underlying illness has yet to be found. In February of 2009, I underwent gastric bypass surgery and within two years my weight leveled off at 195 lbs. I was doing well and felt great until September of 2014. I suddenly became very sick and started to drastically lose weight. I was constantly vomiting and had no energy. I dropped over 20 lbs. in a little over a month and was getting worse. I went to my gastroenterologist and after numerous tests she stated she couldn’t find anything wrong, but my issues continued and I was getting worse by the day. She suggested that I go see the doctor that did my bypass surgery. I took her suggestion and saw the doctor in November 2014. After meeting with him, he said it sounded like I had a hernia and he would have to go in and look for it because there was no test that would show the hernia. He did send me for an upper GI CT scan a week before my surgery. No blockages were seen in my small intestine. I agreed to undergo surgery and went in for it on December 10, 2014. After waking up from that surgery, I was told that there was no hernia but a lot of scar tissue from my original bypass surgery in 2009. The surgeon stated he removed the scar tissue and I would be fine. I was advised to stay on a liquid diet for three days and then return to normal food. He said enjoy your son’s birthday and come see me in a few weeks. Well, four days after that surgery my life as I knew it no longer existed. I started vomiting uncontrollably again and after two days of that the resulting stomach pain became crippling. My wife rushed me to the emergency room. After a few tests in the ER, I was told that my small intestine was completely blocked and my gallbladder had failed. I would need emergency surgery. So six days after my first surgery I found myself back on the operating table where they removed a section of my small intestine and my gallbladder. When I awoke from that surgery I was told that within 4 days from the first surgery where the scar tissue was removed it had grown back twice as much and 10 times as hard and it crushed my intestine.
The initial recovery from the second surgery was horrific and I came very close to death the first two weeks. I was still losing weight and had all my original issues with new issues on top of it. I missed my son’s 2nd birthday and I missed his 2nd Christmas. I lived in hell for the first three months after that surgery. I kept going back to the surgeon and he kept telling me to give it time, your body is in shock, you had a lot done to it in a short time. That’s all he kept saying, “Give it time, give it time”. As my health was failing rapidly, I left this doctor and I had to find a whole new medical team. I was so malnourished at this point that my body was shutting down. Basically, I was starving to death and sadly, I still am but at a slower rate. I have been placed on TPN which is feeding you through a PICC line that goes in your arm and stops above your heart.
The condition I am left in is that I suffer from malabsorption and malnutrition due to Short Bowl Syndrome. This condition is very rare; they say 3 in every million adults get it either by injury or by surgically removing part of your intestine. There are only a few drugs that treat this but they are all approved under the orphan drug act which means there aren’t enough people for full trials. They can cause other severe issues in my body. I could have the gastric-bypass reversed but 2 surgeons on my medical team agree that without knowing what the underlying cause of my illness is that the surgery will do more harm than good. So at this time we are continuing with further testing to find the cause. When my nutrient levels fall too low I will either have a feeding tube put in or go back on the TPN.
If you can help, even the smallest amount will be greatly appreciated. Or, if you cannot help with a donation, then I ask you to share this because the more shares this gets, the further it will spread. I thank you for taking time out of your day to read this and I thank you for any assistance you can afford me.
I thought I had planned for everything in life, but the one thing that I did not plan for was this long-term, life threatening illness. This illness has affected me both physically and financially. This is going to be a life- long battle for me and my family. Your donations will go towards the outstanding medical bills that I have already acquired as well as future ones. They will also help with the monthly medication costs and the daily living expenses for my wife and three year old son.
I was out of work from November 2014 to October 2015 most of which was without pay. I have used all of my savings. I have returned to work on modified duty. Due to the complications of my illness, I have had to call out sick and missed medical testing appointments as there are times when I am unable to leave the house
The true nature of my underlying illness has yet to be found. In February of 2009, I underwent gastric bypass surgery and within two years my weight leveled off at 195 lbs. I was doing well and felt great until September of 2014. I suddenly became very sick and started to drastically lose weight. I was constantly vomiting and had no energy. I dropped over 20 lbs. in a little over a month and was getting worse. I went to my gastroenterologist and after numerous tests she stated she couldn’t find anything wrong, but my issues continued and I was getting worse by the day. She suggested that I go see the doctor that did my bypass surgery. I took her suggestion and saw the doctor in November 2014. After meeting with him, he said it sounded like I had a hernia and he would have to go in and look for it because there was no test that would show the hernia. He did send me for an upper GI CT scan a week before my surgery. No blockages were seen in my small intestine. I agreed to undergo surgery and went in for it on December 10, 2014. After waking up from that surgery, I was told that there was no hernia but a lot of scar tissue from my original bypass surgery in 2009. The surgeon stated he removed the scar tissue and I would be fine. I was advised to stay on a liquid diet for three days and then return to normal food. He said enjoy your son’s birthday and come see me in a few weeks. Well, four days after that surgery my life as I knew it no longer existed. I started vomiting uncontrollably again and after two days of that the resulting stomach pain became crippling. My wife rushed me to the emergency room. After a few tests in the ER, I was told that my small intestine was completely blocked and my gallbladder had failed. I would need emergency surgery. So six days after my first surgery I found myself back on the operating table where they removed a section of my small intestine and my gallbladder. When I awoke from that surgery I was told that within 4 days from the first surgery where the scar tissue was removed it had grown back twice as much and 10 times as hard and it crushed my intestine.
The initial recovery from the second surgery was horrific and I came very close to death the first two weeks. I was still losing weight and had all my original issues with new issues on top of it. I missed my son’s 2nd birthday and I missed his 2nd Christmas. I lived in hell for the first three months after that surgery. I kept going back to the surgeon and he kept telling me to give it time, your body is in shock, you had a lot done to it in a short time. That’s all he kept saying, “Give it time, give it time”. As my health was failing rapidly, I left this doctor and I had to find a whole new medical team. I was so malnourished at this point that my body was shutting down. Basically, I was starving to death and sadly, I still am but at a slower rate. I have been placed on TPN which is feeding you through a PICC line that goes in your arm and stops above your heart.
The condition I am left in is that I suffer from malabsorption and malnutrition due to Short Bowl Syndrome. This condition is very rare; they say 3 in every million adults get it either by injury or by surgically removing part of your intestine. There are only a few drugs that treat this but they are all approved under the orphan drug act which means there aren’t enough people for full trials. They can cause other severe issues in my body. I could have the gastric-bypass reversed but 2 surgeons on my medical team agree that without knowing what the underlying cause of my illness is that the surgery will do more harm than good. So at this time we are continuing with further testing to find the cause. When my nutrient levels fall too low I will either have a feeding tube put in or go back on the TPN.
If you can help, even the smallest amount will be greatly appreciated. Or, if you cannot help with a donation, then I ask you to share this because the more shares this gets, the further it will spread. I thank you for taking time out of your day to read this and I thank you for any assistance you can afford me.
Organizer
James Caputo
Organizer
Parsippany-Troy Hills, NJ