Hi everyone! When I initially thought about sharing my story, my friend Sara put my very first entry on her blog. It was a HUGE turning point for me. The feedback and responses I got from her loyal readers was one of the things that gave me the strength and courage to put my story out there, in my world, for everyone to see. I would like to give that opportunity to a fellow IBDer. Please be the kind and warm people I know you all are and show your support to this very brave man. Thank you : )
Crohn’s Disease Through My Eyes by Joshua Lower
My name is Joshua Lower, and I have Crohn’s Disease. By writing this, my intent is to raise awareness, share information, and educate others on just how serious this disease is. I am passionate about this not only because I have the disease currently but because I think there is a lot of misinformation out there that may lead people to form incorrect conclusions about this disease.
I was diagnosed with the disease at 23, and I remember that event like it was yesterday. At times, we find ourselves with troubling aches and pains, but we tend to ignore them thinking they’ll work themselves out or just go away as quickly as they came. For me, it was pain involved with having a bowel movement that led me to seek the help of a doctor. This wasn’t minor discomfort; this was serious pain.
After a battery of tests, I was diagnosed with the disease, and for the next thirteen years, I took medicine after medicine, had countless colonoscopies, flare ups, fistulas, fissures, stomach pain, blood leaking from my rectum, and pain that would make people say, “Please just kill me!” There were often occasions where I would have accidents at home, at work, and in public which were dreadfully embarrassing and inconvenient at best. My body was outpacing my mind where there were often times very little time for me to make it to a restroom to avoid these accidents.
In September of 2011, I had finally had enough. After feeling that my healthcare situation just had to improve, I was fortunate to find a great doctor and rectal surgeon in Plano, TX. He was amazing! He spent a lot of time with me that day even going so far as to have his staff move around his existing appointments so that I was the number one patient on his agenda that day. He didn’t care if it took him the entire day; he was determined to give me my quality of life back.
At one point, I remember him saying to me, “Mr. Lower, I apologize for thirteen years of doctors doing nothing for you but masking your symptoms with various medications. They really did nothing for you, and that makes me angry.”
He informed me that I had Perianal Crohn’s Disease which means the disease is primarily confined to my rectum. This is actually a good thing as various other forms of the disease start much higher in the gastrointestinal tract, and can cause far more complications than this version. Before leaving his office, he informed me as we both got emotional that he would improve my life “by 200%.”
From September to October 2011, I was hospitalized three times for two weeks at a time. I made the decision with my doctors and family to have a procedure called a Temp End Ileostomy. This procedure creates an opening (usually in the stomach just above the groin) which is then attached to a replaceable bag that allows the body to eliminate waste from the body without the inconvenience of having to find emergency trips to the bathroom. I simply empty the bag when I use the restroom as normal and replace it every so often.
When I came out of surgery, I remember giving my surgeon a big hug and a thank you! We both cried because it was a successful procedure, and I now had my freedom back! I can’t tell you what a relief that is! I’ve had the Ileostomy for eleven months and counting, and I can honestly say it’s made a tremendous difference in my life. I can eat what I want, when I want, I’m pain free, and I can also give the middle finger to every bathroom I walk by with a smile on my face!
What I hope you take from this is a little more knowledge about Crohn’s Disease, but I also want those living with this disease to know that with the right doctors and proper attitude, you do not have to suffer. It doesn’t have to be a case of, “Well, that’s life for me now. I just have to deal with it.” There is help available.
I’m very happy to have my bag, and I’m proud that I have it. Every time I change out the appliance, I draw a little smiley face on it. While it’s not easy initially after surgery (there were definitely some trial and error moments!), it becomes as routine as brushing one’s teeth.
There’s one other, important thing to consider when deciding on an Ileostomy, if and when the time is right: acceptance early on and the right attitude is key to making this work. You have to want to do this, and you must listen to the healthcare workers who advise you on proper care and use. They educate you for your own good, and sometimes they have to be stern with you to make sure you’re taking care of yourself.
Please do not be like me and go to the movies two days after surgery and try to eat a big tub of popcorn just because you feel like testing your new limits. You might feel okay for a day after eating it, but trust me, after three or four days, you’ll be sorry as you’re curled up in a ball with excruciating pain. It will mean another trip to the hospital for two weeks and the surgery will have to be done all over again.
I’m extremely thankful to the doctors and medical staff who helped me through the surgery and gave me advice on how to care for the Ileostomy. I’m thankful for the life free from pain and inconvenience of having to always be near a restroom. At the age of 36, my new life’s journey begins.
I hope that in reading this, you’ll find a little more information about Crohn’s Disease and that it may clear up any misconceptions there are. In addition, if you are dealing with Crohn’s Disease, there are other options. Suffering doesn’t have to be the only option.