Tag Archive for: UC

My ulcerative colitis, IBD and ileostomy journeys have been a long road for sure! I spent most of my 30s trying every single pill, steroid, infusion, shot, diet, and remedy you could possibly fathom, all without relief. When the Mayo Clinic in Rochester, MN suggested that I undergo ileostomy surgery, I knew I was ready. After a decade of suffering, I was reborn on December 7th, 2015, following a permanent and total proctocolectomy with ileostomy.

My advice for others diagnosed with IBD and/or contemplating ostomy surgery, would be for them to ask ALL the questions; especially of your medical team. I was young and naive when first diagnosed with ulcerative colitis. Upon initial diagnosis, I didn’t think it was that serious. I didn’t believe I was sick, and all I wanted to do was get well and get back to racing triathlon. I took any and every medication doctors gave me, and I never questioned any of it. I never asked for a different way. I never thought that 10 years later, all the medications would stop working or not work at all. If I could do it over, I would find a doctor who was highly experienced with IBD patients.

If I could let people know something about IBD, it would be that I am a living, breathing example of invisible illness. I never looked sick. Even when sick, I continued my competitive triathlon racing. Don’t judge a book by its cover. My sport was my outlet; something I could control while my body continually failed me. Everything happens in your mind. With a positive outlook and a great attitude, everything is possible!

For many years, sick was my new normal. I was not living life; I was just surviving life with UC. Now, as an ostomate, I can say with 100% certainty that I am free. When I made the decision to have surgery, I decided I would advocate to show the world what people living with an ostomy can do. And you know what? There isn’t anything someone living with an ostomy CAN’T do!

Read more: https://meplus.convatec.com/articles/meet-lee-ann-watanabe/

 

Editor’s note: This blog is from one of our digital sponsors, Convatec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

 

Cassandra Kottman’s Story

 

Kottman earning her 2nd degree blackbelt after a recent all-day test.

I started Shaolin Kempo Karate back in 2012. I had trained in Shotokan Karate in high school and really wanted to get back into martial arts. I’ve struggled with ulcerative colitis since I was 12 and staying active always seemed to help. My UC was still severe and I was in and out of the hospital quite often, so training was still a struggle. Eventually, my colon ruptured in 2016, and I was rushed to the ER and had to have an emergency colectomy. I was in pretty bad shape, and almost didn’t make it, even after the procedure. I was bedridden for about 9-months and on TPN for almost half of that dealing with the symptoms of pancreatitis.

I slowly got back on my feet. The whole time nurses were telling me that I wasn’t going to be able to live a normal life, and that I couldn’t do martial arts or many other kinds of activities. It was a very depressing time. Fortunately, I thought to ask my surgeon what kind of limitations I was going to have. She was so positive and let me know of another one of her patients who was a professional water skier, and the precautions he took to get back into his sport. That same day I went and ordered an ostomy guard, foam to make a belly pad, and texted my karate instructor to let him know I was coming back in.

My first class was absolutely horrible. All my muscles had atrophied. I did 3 stationary “jumping jacks.” Basically, I lifted my arms over my head three times and that was all I could manage. I almost passed out and ended up laying on the floor watching everyone else for the rest of class. I kept going back and pushed myself a little more every week. It took a good year and a half to get back to “normal.”

Because of the trauma I had gone through and my passion to continue training, I was inducted into the U.S. Martial Arts Hall of Fame as 2017’s Woman of the Year. Happy to say I am the first ostomate to ever be inducted. It’s a little weird to say, but I actually inspired myself, knowing everything I had gone through, and that I pushed myself to be my best. So, I continued to push my training to where I was able to train 3-4 hours 5 times a week. In 2018, I was invited to perform for the Abbot and test for my black belt at the Shaolin Temple in Dengfeng, China, which was a tremendous honor.

So, on November 6th, I took the test. Six intense hours of high-intensity drills, sparring and defense maneuvers against fists, knives, and clubs. I could barely move the next day, but it was all worth it because I passed. It really is a good feeling, and I’ve impressed myself with how hard I can push myself.

I still deal with day-to-day issues like hydration, or general fatigue, but overall, everything is manageable. If I have learned anything it’s that you need to listen to your body, and if there is something you really want to do, you can find a way to make it happen. It might not be the way everyone else is doing it, but all that matters is that it works for you.

I am Alan Thompson, a New Jersey native who moved with my wife, Vita, to Florida in 2015. I recently joined the Daytona area chapter of the United Ostomy Associations of America; however, I am not a new ostomate, I had ileostomy surgery when I was 30 years old in 1986. I suffered from ulcerative colitis for about four years prior to the surgery and thankfully I never needed serious follow-up medical attention. I view the ileostomy surgery as a positive event in my life that ultimately motivated me to have a successful career in Federal Law Enforcement.

My first symptoms of ulcerative colitis occurred in 1982, when I was a clerk for the Postal Service in Phillipsburg, NJ. The symptoms significantly worsened in 1984 resulting in hospital stays that included hyperalimentation. I was even initially quarantined at a rural New Jersey hospital. The local gastroenterologist did not have a handle on my illness, but thankfully my Mom shared with me an advertisement in Parade magazine that described ulcerative colitis (UC) which matched all my symptoms. I was given Prednisone and Azulfidine to manage the UC. At first the medications worked but ultimately the UC symptoms kept coming back at shorter and more intense intervals. By 1986, I realized that surgery was my only hope. We had two small children and I had nearly exhausted my sick leave with the Postal Service. Vita and my parents, Madeline and Jessie Thompson, were very supportive through this entire ordeal.

Alan Thompson with wife Vita on Capitol Hill in 2017.

I met with Dr. Robert Riether in Allentown, PA. We first tried ileoanal anastomosis surgery in May 1986 at Lehigh Valley Hospital. But by September my condition worsened, and it became clear that an ileostomy was needed. During this tumultuous time, Vita became pregnant with our third child. My surgery was performed on September 19, 1986. I am eternally thankful for Dr. Riether who unfortunately, passed away at a young age in 2006.

Overcoming UC motivated me to reach new heights with my career. I eventually became Superintendent of Postal Operations in Flemington, New Jersey. In 1989, I took a test to become a Postal Inspector, which is a federal law enforcement position that enforces criminal laws related to the U.S. Mail. I passed the test and started the arduous process to become an Inspector which included an intense assessment interview, background checks and a medical physical. At the time, the maximum age for starting a career as a Federal law enforcement agent was 35, which meant that I needed to complete this process and commence a three to four-month training regimen in Potomac, Maryland by March of 1991. Unfortunately, due to budget reasons the training classes were suspended and I “aged out”.
In 1992, the maximum age for commencing a Federal Law Enforcement changed to 37 years old. I now had up to March 1993 to get into a Postal Inspector class. I had another round of background checks and another physical. The local postal doctors knew I had an ileostomy but found me to be in good shape to become an Inspector. I made it! I was slated to start at the Inspection Service Training Academy three days before my 37th Birthday.

To celebrate my potential advancement and spend time together as a family before I left, Vita and I took the kids on a long ride to the Camden, NJ Aquarium on February 26th. We travelled through a snowstorm and came back to a message on the answering machine. A doctor in Washington DC rejected my application because of my ileostomy. I was devastated. I made several calls and wrote letters to the postal hierarchy with little or no response from them. I heard that other Federal Law Enforcement Agency doctors were consulted, and no one had been known to have previously entered Federal Law Enforcement training with an ostomy. Fortunately, I still had my job as a Postal Supervisor.

Over the next several months we fought and secured another physical from a gastroenterologist with Vita’s advocacy on my behalf, the doctor approved of my candidacy to become an Inspector. I believe strongly that letters that we sent to New Jersey Senators Bill Bradley and Frank Lautenberg helped my cause. Our daughter Jessica, at age 11, also wrote a letter to Congresswoman Marge Roukema urging her office to intercede. That letter really turned things around and ultimately, I was granted an exception to the Federal law enforcement maximum age requirement and I was accepted in the next training class that commenced in September of 1993.

Under the heading of things happen for a reason, I learned after my initial rejection that my Mom had been diagnosed with colon cancer in February of 1993. She and my Dad didn’t want to tell me because I was headed to the training academy. My Mom ended up with a colostomy which, with my Dad’s hands on help, she lived with until she passed away in 2006. She always said that my having an ileostomy gave her the courage to handle a colostomy. Obviously, Mom inspired me too!

I passed the training academy and commenced a career in New York City as a Postal Inspector. My assignment was mail theft investigations which required surveillances during all times of the day. Firearms and Defensive Tactics training and annual physicals were also requirements. I also participated in the initial Anthrax investigation and assisted the Secret Service on a protection detail for President Clinton. Having an ileostomy certainly presented some difficulties but it never interfered in my daily activities that included investigating and arresting thieves and testifying on behalf of my agency. Ultimately, I became a Team Leader in New Jersey. In 2006 I transferred over to the USPS Office of Inspector General and continued investigating and supervising mail theft investigations in New Jersey and New York.

At the time of my mandatory retirement in September 2013, I was an Assistant Special Agent in Charge for the last five and a half years of my career. All told I had 33 years with the Postal Service. At no point after I was accepted into the training class in September 1993 until my retirement 20 years later did anyone mention my ileostomy. I am sure that upper management must have known about it, but I let my work speak for the opportunity that was given to me in 1993.

One tip that I can offer is that I quickly recognized foods to avoid and realized early on that weight control was essential in managing my ileostomy. I currently work out at least six days a week riding a bike and doing some weight training. I recently took up golf with low expectations and I love meeting those low expectations. Now as a retiree in Florida, I am grateful that I did not accept the rejection and instead pushed and advocated for the opportunity to demonstrate that my ostomy would not interfere with a career in law enforcement.

Tag Archive for: UC

Nothing Found

Sorry, no posts matched your criteria