Monday, February 2, 2009
Welcome
Greetings readers! I am the Intestineless Wonder.
So here's the deal, today is the 15 month anniversary of the day my life changed forever. I had a mid-gut volvulus on November 2, 2007 and needed to have 95% of my small intestine removed as well as a portion of my descending colon. Contrary to common misconceptions, the small intestine is not an everlasting tube that could stretch around the earth, nor is it over a mile long. An adult small intestine is usually about 20 feet long. This means, of course, that my small intestine is now only 10 inches long.
Having such a short gut, I have what is known as "Short-Gut (or Bowel) Syndrome." I was on TPN for about 8 months. It was after my second blood infection from the port that my doctors and I decided to give life a try without TPN. Luckily for me, I have been able to survive for 7 months without TPN. Unfortunately, I have only survived, I have not thrived. My diet requires me to limit myself to about 50 grams of fat and 50 grams of sugar per day, yet I am also supposed to consume 3,000-5,000 calories per day. I have had difficulty even coming close to this since most of the foods I can eat are "diet" foods. I am also supposed to eat 6 to 8 small meals each day, as opposed to 3 large meals. I have passed 10 kidney stones since the initial twisting of my intestine, and yes, you read that correctly. I cannot gain any weight permanently, but I can lose a few pounds by skipping one meal. I take about 25 to 30 pills and supplements daily to make everything "work."
I will be 19 years old this March, yet I feel as if I am about 40. I am a freshman in college at The Ohio State University. My life is incredibly difficult, considering everything I have to deal with. I have grown increasingly frustrated with my lack of results.
So, I created this blog to give and get feedback. It is difficult finding information online because Short-Gut Syndrome only affects 1 in every 500,000 people. That means 1200 Americans have Short-Gut Syndrome, which is also how many people will earn a position on a Major League Baseball roster this spring. My goal is to find the other 1199 people to swap ideas for what does and does not work. [Although I may find it necessary to vent here every once in a while] Please feel free to comment with ideas or hypotheses, and I will add more posts with what I have tried.
Sincerely Yours,
The Intestineless Wonder
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Hi John,
ReplyDeleteThe blog looks great...remember to try to stay positive...you have handled the past 15 months with amazing strength and perserverance. You are an inspiration to us. Stay focused on your health...we will figure it all out.
Love ya,
me
Hey Johnny!!
ReplyDeleteIt's Mrs. Kamlowsky!! This is such a great idea. Mr. Kamlowsky did this during his stem cell thingamajig and it was the best!! I will go look up every possible positive thinking quote I can find and send them to you!! HA! Seriously though, I believe that is 99% of recovery. Positive thinking! Easier said than done, but possible. You are one amazing kid ( man ) and you are an inspiration to us all. You are always in our prayers!!
Love,
Mrs. K
P.S.
ReplyDeleteI don't know what your mom was talking about..it took me half an hour to sign up and post this. And I'm not sure how I did it.
Thanks Megan
Hi John,
ReplyDeleteI think this is a great idea and I hope other gutless wonders (ha!) will find you and share ideas with you. You are anything but gutless, it takes lots of guts to deal with what you are going through every day! I know that God will give you the strength each new day and that you will be able to help many others through your struggles and suffering. I will pass this on to my sister who has worked with others with short gut syndrome through her work as a dietician. It has really helped Kristen to talk to others with Crohn's Disease and share ideas and struggles with teenagers living with the same difficulties. I pray for you often and will continue to ask God to give you strength, hope, and peace and to find others to talk to and share ideas with. Love, Aunt Cindy
Yeah, I'm an official follower! But really, if you get more "fans" than me I will not take it lightly, next Thanksgiving will be akward...
ReplyDeleteWhat a great name for a blog about Short Bowel Syndrome! I may be the first person outside your friends and family to comment. I was linked here through a post your mom your made at another site. I congratulate you on taking on this disease with such a great attitude. I have had SBS for 15 years (I am much older than you...36)so I'd like you to know that, although some days might not be easy, you can still live a full life with SBS. I am married, work full time, and like to travel...something that is admittedly not all that easy with SBS. I have done TPN for 3 years and have been lucky enough to not have had any infections (so far). I am only on it 2 times per week at this point, but each time I go off for any extended period I lose the weight I gained (I know you can relate to that frustration). There is a lot of studies and programs out there for weight loss but not a lot out there for weight gain. Good luck with everything. Now that we've "met" you only have 1198 more SBS people to go!
ReplyDeleteHi brother!
ReplyDeleteYou're awesome and this blog is pretty cool. Keep hanging in there and try to stay positive (i know, the same thing everyone else is saying... so original). I pray for you every night and think about u all the time.
Always remember: "Wherever you go, there you are."
Love, Shellers!
Hey Johnny,
ReplyDeleteIt only took me 1 hour on how to figure out this blogging stuff. I need a nap now! You are an inspiration to all who know you! I know this isn't the life you signed up for, but it is life and I am so glad you are here!! It's o.k. to get pissed and wonder why me( believe me, asked that question many of times)Try to stay positive and take one day at a time. Always know, you are in our prayers and that we are here for you!!
Love ya,
Old lady Carden
Hi Johnny,
ReplyDeleteWhat a great idea for a blog and a great name! You are an amazing person. God must have a special purpose for you. I know it must be hard , especially trying to eat such a restrictive diet at school. I sent your mom some information/questions to ask your doctors. Hang in there!
Aunt Cindy's sister- Kim
Son,
ReplyDeleteThe Vince Lombardi quote is perfect. He is one of my all time favorites and although many of his quotes were based on the game of football, many of his lessons can be easily transferred to our daily lives. Earlier in that same speach he said "winning is not a sometimes thing; it's an all the time thing. You don't win once in a while; you don't do thinks right once in a while; you do them right all the time. Winning is a habit." Always remember that YOU are a winner. Your'e my boy Blue!
Hey Kiddo,
ReplyDeleteWay to scare me with the start of your post...Michelle and I have been fighting some sort of flu...so we know just what you are going through....Ha...just kidding...a lot of new info. from Kim...I will look into it...warmer weather is on the way...see you tomorrow...
love,
me