My name is Michael. I am 32 years old. I was diagnosed with Crohn's Disease when I was 11 years old. I had no idea what that meant for my life over the next 20 years at that time.
Durning my Battle with Crohn's I have had 9 surgeries. These sugeries have been repeated removal of damaged intestine. After my last surgery on September 5th, 2015 my entire large intestine was taken out along with a 45 centimeter portion of my small intestine, leaving me with just 40 centimeters of my small intestine. To give you some context on the human intestines, your small intestine is about 20 Feet long and your large intestine is about 5 feet long for a total around 25 feet. I now have less 20 inches.
I now have what is know as short gut syndrome, which means I do not have enough intestine to absorb enough nutrition to sustain life. I currently have to hook up to an IV for 12 hours a day to get the nutrition I need through what is known as TPN. In addition I must also take in regular IV solution to stay hydrated, which is up to an additional 4 hours on the IV each day.
This method of feeding will keep me alive for a period of time, however it is very harsh on the body and will slowly destroy my organs, there by drastically shortening my life span.
The Solution to this is a rather new operation, an Intestinal Transplant which will be done at the Cleveland Clinic. Only 5 hospitals in the United States can actually preform this operation (Cleveland Clinic only did 15 last year) and as you can imagine they are extremely expensive! The average total medical costs are over $1,250,000.00 alone. I will also have expenses such as: I must live within 1 hour of the hospital for the first 6 to 12 months after the surgery. So there will be food, housing, and transportation cost. I am from Dayton, OH over 3 and a half hours away and many, many more cost that will add up quickly.
I do have health insurance which will help cover much of the medical cost, but there are still many many expenses that are not covered and it is a very long recovery process (it can range from 8 months to over 2 years) leaving a large amount of time where I will have no income. I have minimized the amount of bills I currently have but of course I will still have bills such as my cell phone, we are coming up on a new year so I will have a new deductible to pay, car insurance, and I have to have a caregiver around 24 hours a day for the first 3 to 6 months. I am very lucky that my parents have volunteered to take on this roll. They will rotate weeks being up in Cleveland with me and it would be great to take the money burden off of them as much as possible.
Thank you for taking time out of your day to read this! Below is a more detailed story of my life, who I am, and my struggle battling this horrible disease, if you would like to know more about me.
As I opened with, I have been battling Crohn's Disease for 20 years. I have been on and off many medications (mainly prednisone , a strong steroid which has horrible side effects) most of my life as well as extremely expensive drugs called biologics such as Remicade and Humira, however these latter drugs may not work forever because your body eventually becomes immune to them causing them to be ineffective. This has now happened to me.
Just after my 17th birthday I was in the hospital for a severe episode of Crohn's issues. I was hospitalized for a month, released for 3 days and returned with bleeding from my intestine. After another month in Children's I was flow up to Cleveland Clinic where I had the first actual surgery of my life.
All of this was during the 3rd quarter of my Junior year of High School. So when I returned to school I had to make up that 3rd quarter, while also doing my 4th quarter work. I worked very hard and was successful moving on to my senior year with my fellow classmates.
The first quarter of my Senior year, just before 9/11/2001 I had to return to the hospital. I returned to Children's where they again kept me for over a month before sending me back up to Cleveland. This time the surgery was much more extensive and much more small bowel was resected.
After healing I returned to school, determined to graduate on time, with MY class! I made up the entire first quarter of my Senior year, while doing my second quarter work as well. It was a huge amount of work, but I did graduate with my class in 2002 from Springboro High School!!
So from that first surgery around the end of March 2001, to sometime in 2003 I had 5 major abdominal surgeries. All of them were a direct result of Crohn's.
I then by the grace of God got better thanks to advancement in medications and even got to Graduate College from The Ohio State University!! During my time in college I joined the Phi Kappa Psi fraternity where I made some of my best friends to this day. I also had the privilege of interning for U.S. Senator George Voinovich in 2007 and followed that up with an internship in The White House under President George W. Bush in 2008.
After college, I followed my dreams to Washington DC where I lived and worked for a little over 2 years. I came back to my home town of Dayton Ohio where a majority of my family lives when I realized politics was not as enjoyable to me as it once was.
During my time back in Dayton, my youngest brother Jon and I got an apartment together in Centerville, which was awesome getting to have your roommate be someone you were already so close too.
I also started going back to church. Before I had moved out to DC, I was going to a local church called SouthBrook . The church is amazing and Charlie the Lead Pastor is fantastic.
The first time I went, if I'm being perfectly honest, it was because of a girl, but God knows what he is doing up there... the girl was just God's ploy to get me back in the building and well... it worked!! While I was waiting in the lobby for her I saw a friend who I did not expected to see there. I spoke with him, asked about how long he had been going and if he came every week. He said he did and we made plans to meet there the next week.
So after several weeks of meeting my buddy at SouthBrook he introduced me to new people at the church and we slowly acquired a solid group of friends, who honestly under any other circumstances I would never have met, but I now consider family!
Why am I telling you all of this? because God brought me back to my church, to meet an entirely new group of people, who would all be my anchors to make it through the last 2 years of my life and the rest of my story that I'm about to tell you...
So, I was back in Dayton for less than 2 years when Crohn's struck again. I ended up having another flare up and was hospitalized at a local hospital, where after a month they decided they could not fix the problem and sent me to Cleveland Clinic once again. At this point my last surgery had been nearly 10 years earlier.
Once at Cleveland they decided all other methods had been exhausted and surgery was once again the only option. I went into surgery thinking this would fix the problem and that was it. So on August 16th, 2013 I came out of surgery. It was supposed to be an hour to two hour procedure that took more like 6.
I remember coming out of surgery being carted somewhere down a hall and hearing a woman's voice say "Michael, there were complications during the surgery and we had to give you an ostomy bag ." Then I was out again just like that.
I woke up in a room with both my parents there and remembering how I was devastated by how drastically my life had just changed...
The next day the Surgeon came in and updated me on everything and said that I would have to come back in November and they could finish the surgery then, when things had healed. He also said that they could reverse the ostomy as well. That was music to my ears and suddenly I had one focus and that was to get to November 20th as fast as possible!!
November 20th comes and I check in at the hospital, bright and early. I go in for the surgery (the 7th surgery if you are counting) and come out. They were unable to reverse the ostomy due to infection and I was now going to have to wait until April...
I had several trips up to Cleveland to see my Doc's and at an appointment in March the doctor says, in a German accent "You are doing so well, we want to wait so your body is the absolute best shape before we do surgery. So let's see you again in June so maybe we can schedule the surgery in July."
I was once again devastated by this news, because life with an ostomy is hard!! There are different types of ostomies. There is the common Colostomy, an equally common Ileostomy and a few other less common ones.
I had the less common Jejunostomy which is extremely hard to deal with because essentially you are dealing with a very short path from your mouth to your stomach to your Jejunum, which is where my bag was attached. This means there is little time for absorption or digestion of ANY kind. When the bag started to fill up, it filled up fast.
This also meant I couldn't eat for several hours before bed unless I was prepared to wake up several times during the course of the night to empty it. If I didn't empty it in time then that meant a huge freaking mess in the middle of the night and having to change the whole bag, which was at best a 15 minute ordeal and at worse an hour waiting for the stoma to stop spewing out stuff. I know, TMI, gross!! I am just trying to paint the picture for you.
So another thing you might be thinking right now is, how was I getting nutrition if things were just going in and out of me? Well I was and still am on IV nutrition called TPN for 12 hours a day, yep 12 hours every day... and it of course like anything medical is NOT cheap. With all the supplies that went along with it, the cost is thousands a week.
So, June Finally came around, I had my appointment and we scheduled the surgery for September 3rd 2014. So yes what was supposed to be just 3 months of living with an ostomy bag turned into over a year and a year of living on an IV for 12 hours every single day.
On September 3rd I went in for surgery around 7:30 am to check in. I was scheduled for 10:30 am. I wait for nearly 9 nerve racking hours before I was finally taken back for surgery sometime after 4:30pm. It was short and successful!!
I do now have "short gut " and cannot fully absorb enough calories to sustain my own life. I am still on TPN nightly, still for 12 hours each time, and still 4 additional hours for the hydration IV fluid, BUT to not have an ostomy any more was fantastic!! I feel for anyone who has one and is not fortunate enough to be able to have it reversed.
Fast forward th August 26th, 2015. I am once again admitted in Cleveland Clinic with severe Crohn's issues. This time Crohn's was attacking in a new area. Previously it was only my small bowel that was attacked by the disease. It had attacked my entire large bowel as well as half of my remaining small bowel. It became clear that once again surgery was the only course of action remaining. Surgery number 9 (the 4th in just 2 years) took all of my large intestine out along with the diseased half of my remaining small bowel.
With having only 20 inches of bowel left I was once again given a jejunostomy because the remaining intestine was not long enough to reach a connection point.
At this point it has come down to just 2 options. 1)live on the TPN which destroys the liver and other organs, but at least I am alive, or 2)get an intestinal transplant, which means a long recovery, but a real chance at a "normal life" which will likely have the awesome side effect of not having Crohn's disease!!
It sounds like a no brainer to go with option 2 and get the transplant, but it is not a surgery thats done everyday and transplants are an enormous undertaking on all levels. However, thank God for my family and my church family, along with my company because aftermuch prayer and talking it out with all of them it made the answer clear. The transplant offers a chance to basically restart life and God is keeping me here for some higher purpose! I want to find out what that reason is! Its hard to do that stuck to an IV pole...
Going back to what I was saying earlier about God's plan... If I hadn't had to go through having an ostomy and being on an IV every day for 12 hours, I never would have been able to go through what I'm going through now. I would have felt this was the worst, but instead I have experienced worse and know things aren't that bad.
Someone told me once that Everything Happens For A Reason, or as she puts it "EHFAR" (pronounced ee-far). I believe that. I think we all have a different version of this saying that we believe to one extent or another. To me this means when things don't go how you planned them or how you hoped they would go, that God is there saying "I got this, trust me. There is a reason and its part of my plan for you."