Steve Hubbard’s Ostomy and Crohn’s Story
I’m 75 years old and this is my 56th year of living with Crohn’s disease and an ileostomy.
I first started getting sick at 18 years old in 1967 right after graduating from high school. I was starting to get weak all the time, losing weight, couldn’t eat without getting sick and there was blood in my stool. My parents took me to the University of Stanford Medical Center.
The doctors there weren’t sure what was causing me to be so sick. I was down to around 65 lbs and so weak. They thought it was ulcerative colitis and they began treating it as such. When I wasn’t improving they called in a Colitis and Crohn’s specialist that was visiting the hospital from Germany. He diagnosed it as Crohn’s disease and started treatment right away by injecting a lot of steroids into me to help me gain the weight I needed for the first operation. Because I was so young they tried removing small sections of my colon at a time hoping they wouldn’t have to fit me with an ostomy.
The flange was made was solid rubber and it came with see-through plastic bags. The ostomy equipment nowadays is truly a godsend.
(Steve with his two daughters at his grandson’s wedding)
I had to stay in the hospital for around three months after each operation but after four major surgeries within two years time, I was finally fitted
with my ostomy. After receiving my ostomy I was devastated because I was an athlete in school and didn’t know if I’d be ok to play sports or other things I loved to do again.
In the sixties having an ostomy was something kind of new and the only ostomy equipment we could find required a drive that was over two hours away. The flange was made was solid rubber and it came with see-through plastic bags. The ostomy equipment nowadays is truly a godsend.
By 1970, I had recuperated enough to get married. In 1972 we moved to San Diego after my first child was born. Then in 1973, I began to get very,very sick. With input from the WOCN specialist, they realized that they had to reconstruct and move my ileostomy to a different location on my lower belly.
After I woke up from the operation there was a priest next to my bed. He told me that he was giving me my Last Rites because I had passed away during the operation.
My mission has always been to never give up on anything and not use my ostomy as an excuse.
I recuperated and then my second child was born in 1974. After everything that I’ve lived through, here I am at 75 with two kids, two grandkids and two great-grandkids.
I played so many different sports with my ostomy including water skiing, kayaking and tennis. My mission has always been to never give up on anything and not use my ostomy as an excuse.
I hope this inspires people with an ostomy to never give up so you too can live a full life. I have no regrets. Ostomies are life-savers.
Steve, thank you for sharing. I received my ileostomy 3 years ago as a last resort life saving procedure at the age of 73. When I woke up from surgery I was super angry what my family did to me! After reading your story I will never complain again. I lived my life constantly running to the bathroom and never left home without a roll of toilet paper. I traveled the world always adjusting, but happy to be enjoying life within my perimeters. Now I can eat anything worry free and pain free.
Looking back, maybe I would have. Even better off with an Ostomy??
You’re very welcome.
Thank you for sharing your story! I need to stop using my ostomy as an excuse to avoid activities I used to enjoy!
I also believed that I wouldn’t have been able to do what I use to do especially riding Roller Coasters. Loved them before and I’m still riding them. Go enjoy your life. You deserve it
I received my illeostomy as an emergency surgery, December 29th, 2009. That surgery saved my life. I am very careful what I eat and how much acid. My grandson was born July 20, 2011. So if I did not have my surgery – I would not have been able to know him and enjoy him. According to my doctor – I would have died the next day. Thank You Lord.
Hi Steve,
Thank you for sharing your story. I have had my ileostomy for 54 years. I was 11 years old in 1970. I was in St Vincent’s Hospital in Toledo OH for 5 weeks. I was transferred to Cleveland Clinic in Cleveland OH on December 8, 1970. I went into emergency surgery that day to prevent my colon from bursting due to toxic megacolon. I received my ileostomy that night. I, too, was diagnosed with Crohn’s Disease. The doctor that saved my life was Dr. Rupert Turnbull. He was originally from Orange County CA. It seems we have a lot in common.
Hello,
I was diagnosed with Ulcerative Colitis in 1984 (25 years old). My Husband and I had two children 4 and 2 years old. Suffered from very active colitis until 1986. Went in to a manageable remission for 4 years. In 1990 as a single Mom. I became very ill 30 days in the hospital. Too ill to survive surgery. Lost half my weight. Fully recovered. Off and on bouts of active colitis. 2009 the colitis came back strong. I then was the only parent of twins. I made the decision not to put my children through the trauma of visiting me in the hospital and was advised of one of two options temporary ostomy or permanent Ileostomy. I elected the permanent Ileostomy. I still am a little self-conscious with my ostomy. Though nick naming it Bubbles was helpful. I do not regret my decision. Grateful for the options. Grateful for the Ostomate support groups and our unique journeys. UOAA has been a instrument of hope.
Thank you all for your stories of perseverance, hope and strength!
I met the Hubbard family in 1964 when Steve and I were Freshmen. We quickly became best friends and close as family and remain so to this day. I remember when Steve was losing so much weight and went through all these procedures and tests. We just couldn’t believe that such a great and all around athlete could face such a challenge. But he did and I don’t ever remember him complaining in an ungrateful way facing these issues. Finally he was getting better and all the things we all thought he would not be able to do or get to lead a normal life were thoughts of the past. The amazing doctors, specialists and resources regarding Crohns Disease and Ostomy care were right there to help him navigate something that we’d never even heard of. And here he is today with the wonderful memories of a life lived on his terms. Thank you God for keeping my brother safe
Thank you so much my brother. It made me feel loved and cared about.
I am so glad I found this location. I am a 42-year Ileostomate with some loss of the small intestine as well. This was due to a 27-year history of ulcerative colitis. I am now 92 and still enjoying life to the fullest. I volunteer at 2 thrift shops and one hospital. I have to drink 62 ounces of water a day or I become dehydrated. Food is identifiable 30 minutes in my bag after eating. This is not always easy. My biggest complaint is the pain I suffer from body cramps. I wish I knew the cure for this. Any suggestions. I dealt with horrific UC during the birth and raising of my 3 children and it was so difficult getting them off to school with that uncomfortable condition.
The medication of trying to control it was brutal. I was either in the depths of hell or utopia. Back then many doctors did not know how to treat this. We were an AF family and as we moved around, they each wanted to take a look and the AF did not put you down for the procedure. You just climbed up on that table and put your butt in the air and dealt with the pain. I had 21 procedures. I always ask the doctor if his mom knew what his profession was to break the tension. I realized the civilian doctors was raping my good insurance and I bought 4 medical books and realized I was dying. My hair was falling out from the medication and I was depressed and suffering all the time. I had a family friend who was a good colon rectal surgeon 6 hours away in Agusta, GA. I made an appointment and had an elective removal of my diseased organ. I do not understand why more doctors do not perform this surgery when cancer appears in the colon rather than trying to save the colon and it going into losing the battle. There is quality of life after this surgery. I was able to travel abroad and enjoy life without fear of not being able to find a restroom. Sorry….more than you wanted to know.
I’m sorry to what you’ve through but congratulations for seeing it through
My name is Mike, ex son-in-law of Steve. Dad, I am wowed by your story. Of course I’ve heard bits and pieces of your story throughout the years, but I’ve never had the whole story at once. Your perseverance is truly amazing and I have never seen you use your Crohn’s as an excuse. You’ve worked circles around most, including me, and although I new there were time that it was an issue, you never let it be THE issue. I’m proud to call you Dad to this day. Great story and thank you for sharing it. Love you.