Working with Takeda to Educate Others about Gastrointestinal Disorders

 

Ten years ago, I would have introduced myself as Gwen. Today, I am Gwendolyn, a version of me that’s been to hell and back with Short Bowel Syndrome, or SBS. A me who’s come to know a strength she had no idea she possessed. Gwen, before SBS, was career-driven, rushing through life. Everything for me was fast-paced—work, home, and family. But that was ten years ago, before SBS barged in and reshaped my entire life, stripping me of my identity. With August being SBS Awareness Month, I am sharing my story about living with SBS and an ostomy, as a way to drive awareness of this disease among others like me who are impacted.

I’m your typical New Yorker. What comes up, comes out. But not when it comes to SBS. It’s not the prettiest of conditions, is it? Intimate details aside, no one really understands what we’re going through. When I was diagnosed, I felt so isolated. To this day, I still have flashbacks of being in that hospital bed, wondering why. I wasn’t comfortable discussing what I was going through. No one deserves to feel alone with SBS. We are not hopeless. I don’t believe that. I’d like to believe that what I’ve been through is for a reason. Maybe sharing my story is my reason—to help people see that SBS can be a beginning, and not an end.

I entered the workforce shortly after completing high school. In 1991, I began working in construction. The minute I walked onto a job site, I felt at home. I started out as a temporary receptionist and after various projects, I worked my way up to office manager. I worked in construction for over 20 years. Come 2009, I was the administrative manager for the largest construction project in the country. I was happily married, living in the Atlanta suburbs, and enjoying any time I got to spend with my precious granddaughter. Life was good. I really felt like I had arrived. In fact, I was so focused on my job and being everything to everybody that I wasn’t giving the pain I’d been experiencing the attention it deserved.

By then, I’d undergone three separate abdominal surgeries: one to remove my appendix at age four, another to address a small bowel fistula at age 27, and finally a hysterectomy at age 40. For years, I’d been experiencing intense abdominal pain, which I’d alleviate with a pain reliever here and a pain reliever there. Until, one day, the pain relievers stopped doing the trick, and I’d just about had enough. I decided to finally seek medical attention. Turns out, I had quite a bit of scar tissue and adhesions leftover from my past surgeries. After talking it over with my doctors, I decided to go ahead with surgery to clean it up.

As far as I knew, the surgery was a success. I was released from the hospital on my 54th birthday. Two weeks later, my daughter came over and found me, incoherent, with a greenish fluid seeping through my surgical dressing; my temperature had spiked to 104 degrees. I was rushed to the hospital and immediately sent into surgery. I had developed a bad sepsis infection as a result of multiple fistulas found within my small bowels. I underwent two additional surgeries, which required the removal of portions of my small bowel, and was placed in a medical coma. While in the coma, my husband made the decision to have an air ambulance fly me to a larger facility where I was immediately rushed into surgery—again. This surgery would end up costing me additional portions of my small bowel and my colon as well.

I remember waking up days later and having no idea what had happened. So where am I? At a different facility, and in critical condition, so bad that they’d previously advised my daughter to say her goodbyes. My abdomen was completely opened and connected to wall suction. I also was left with an ileostomy. I’d have to now receive nutrition via total parenteral nutrition (TPN) twenty-four hours a day, seven days a week. At no point did anyone say a thing about SBS.

I was admitted in May of 2009. I ended up going home in April of 2010. My body couldn’t seem to hold off the ongoing infections. It seemed that everything that could possibly go wrong did. Let me tell you, I cried a lot. I couldn’t help but think, Why me? What had I done to deserve this?

My husband came to visit every day after work and stayed with me in the hospital on the weekends. One day he came in and I was having one of my uncontrollable crying spells. He lost his temper. He said to me, “What the hell are you doing? You are not doing anything to help yourself!” He spoke the truth; no sugarcoating it. I got angry. But you know what? I needed to get angry. I needed to feel something other than self-pity. I stayed angry for a long time after that day—not at him, not at the doctors, but at myself for not doing my due diligence. It was hard for me to admit that. As an administrator, I was used to surveying contracts, invoices, as well as familiarizing myself with the details. Yet when it came to my health and being my own advocate, I felt I had failed. But that didn’t mean I couldn’t start now. My husband helped me see that. He got me out of bed every single day to walk. He would wrap me up in blankets, place me in a wheelchair, and take me outside in the dead of winter in order for the sun to hit my face.

I managed to make it back to see my original gastroenterologist in April 2010 after I was discharged from the acute care facility, who for the first time diagnosed me with Short Bowel Syndrome (SBS), or what he called “short gut.” After my diagnosis with SBS, it took me a long time to come to terms with it; no one told me how different my life could be. I had no choice but to do a little soul searching, and it was there I met Gwendolyn. Gwendolyn wasn’t scared; she wanted some answers. Gwendolyn knew that, in terms of healthcare, there had to be more options out there.

After I was discharged, I returned to the hospital in May of 2010 in order to reverse the ileostomy and close the opening in my abdomen. I prayed that, afterwards, things would go back to normal. Boy, was I wrong. I had lost 75 percent of my small bowel and 25 percent of my colon.

I was tired of relying on TPN. By that point my doctor and I reduced the amount of time for my infusion requirements at home. There were nights I couldn’t bring myself to connect to TPN, and my husband had to do it. I got tired of wearing the backpack if I went out, and people asking, “Are you going camping?”

My infectious disease doctor recommended a gastroenterologist he thought would be a good fit. He was right. At my first appointment with her, she listened to my case and evaluated treatment options that would help me reach my treatment goals.

To help monitor my health and stay where I want to be medically, I keep a daily log, which includes voids, bowel movements, when I take my medication, daily activities, and what foods I’ve eaten. I even log my blood pressure and temperature. I see my gastroenterologist every two months. A log takes the burden of remembering off my shoulders, and all of my doctors seem to appreciate the effort. I have an amazing medical team. My gastroenterologist. My infectious disease doctor. My therapist. My nephrologist. And my primary care physician. But my surgeon, he was a gift. The last time I saw him was in April of 2017. I had been his patient for eight years. Before I left his office, he gave me some of the best advice to date; he said, “It’s time to go ahead and live your life.” I can hardly talk about that man without crying. He saved my life, in more ways than one.

The reality is, I have good days and bad days. On my good days, I spend that time making cupcakes for my granddaughter. I make a mean cupcake. I do laundry. I go out with friends. That’s right—I leave my house! I don’t go anywhere without my little toolkit. Inside my purse, I’ve got baby wipes, disinfectant spray, odor eliminator, rubber gloves, and hand sanitizer. But you know what? It works for me.

While I don’t miss some of the old Gwen, I do miss her tenacity. So I’m working on getting a little of the old me back—saying “yes” to opportunities and working on relationships with others.

When I was diagnosed with SBS, I wish that I had done more research to learn what the future could be like living with SBS. I think that would have saved me a lot of pain and heartache. So I’m going to tell you what I wish someone would have told me. If you’re not comfortable with where you are, do something to get where you want to be. If you feel like something is wrong, do something about it.

To learn more about Short Bowel Syndrome (SBS), please visit shortbowelsyndrome.com. You can also engage with #shortbowelsyndrome on social channels, especially during the month of August, which is SBS Awareness Month.

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

Living 10 steps from death’s door can take an emotional toll. My name is Makeda Armorer-Wade and I am an inspirational life coach and best-selling author. In July 2010, I received my first ostomy and January 2016, I received my second. While both surgeries were difficult physically as well as emotionally; my first was more difficult than the second, because I was not included in the decision in any way. It was an emergency surgery following a resection surgery a week earlier. The decision was made during a follow-up test and they were actually drawing on my belly in the elevator on my way up to the room. It landed me in the ICU and 10 steps from death’s door.

The second ostomy surgery was a decision that I made based on the recommendation from my GYN and surgeon. I was so debilitated that this was my only option. So although it was very difficult, it was less traumatic than the first, because I was involved in the decision and I thought I knew what I could expect.

I went to the United Ostomy Association of America (UOAA) and read everything that I could. I went to what I call, “Ostomy School.” I did my best to connect with patients who were having a similar experience. Because I have lived with a Crohn’s disease diagnosis from the age of 16; I’ve understood the necessity to research and learn all that I can to manage my condition. Crohn’s disease was not a common diagnosis at the time I was diagnosed, and giving up wasn’t an option for me. Connecting with others and gaining knowledge was freeing. The more I learned, the more comfortable I became with living and embracing life with my new friend (ostomy) Rosebutt Buttercup. Yes, I named her. I was able to support new ostomates by participating in the monthly Mt. Sinai post-surgical support group.

Having my second ostomy has given me the freedom to go back to work, take care of my family, swim, cycle, attend social gatherings, participate in community service and travel. Sometimes listening to the despair of my fellow ostomates and experiencing my own despair at times, for lack of knowledge is what spurred me into action. I wanted to be an example, that there is still life to be lived after an ostomy. Our mindset is important. Where our mind goes, the body follows. Life is what we make of it.

As an author, coach and public speaker. I use my platform to share my story, as evidence that life can be all the things that you are open to making it. I am advocating for sponsorship to release a course that will be available for a small fee, to anyone who has an ostomy, considering getting one or a caretaker of someone who has one.

The biggest positive about living with an ostomy is understanding that without it, I would not be here. The first one was reversed, but as I moved toward having my second one I knew enough and it was the only way. I made the decision to move forward and I am not looking back. I had to embrace that I was enough and the new possibilities for my life were endless.

I realized that as long as I follow my P.L.A.N.(c), I have fewer challenges. I Prepare by anticipating each scenario; I Let go of Shame for all of the things that I can’t always do; I Ask for help when needed; and I Never give up no matter what. Repetition breeds mastery.

So, I share with others that having an ostomy is just an alternative way of going to the bathroom. We all have to go the bathroom. But now, I have the benefit of having more control over when I go. An ostomy is life-saving. An ostomy is an opportunity to really live your best life on purpose.

And while you may not feel that way in the beginning. It does get better. My advice as an experienced ostomate, is to get as much information about your surgery prior to getting it, if time allows. Speak to people who are successfully living with and managing their life with their ostomy. Read, watch videos and ask as many questions as you may have. And then work your P.L.A.N.(c). Be inspired, Be encouraged, Be hopeful. I believe in you. The possibilities are endless.

I  had been increasingly struggling with symptoms for over two years with medical personnel brushing me off because I did not fit the norms for bladder cancer and didn’t check off enough risk factors for it. By the time of diagnosis, at the age of forty, I was perpetually in pain and discomfort, I was periodically urinating blood clots and I was unable to sleep through the night due to the pain and frequent urination. I felt like I spent most of my time and energy running to the restroom. I even had one ED physician laugh at me and assume that I didn’t know my own body well enough to know whether I was urinating blood clots or having issues with my menstruation cycle.

I had my urostomy surgery on September 23, 2016 after receiving a bladder cancer diagnosis on August 12, 2016. I had Stage IV Bladder Cancer with a T4, muscle-invasive tumor.

Having my surgery has allowed me to get back to my own life and start living again…mostly without pain. I’m able to sleep through the night again and I do not spend most of my time running to the restroom.

I have been working in a pediatric GI office since 2012, so not only was I aware of ostomies and that a person could live a long, productive, great-quality life with an ostomy, I also had my very own personal ostomy support crew. My coworkers are amazing and have been so supportive through everything…several nurses have even given me ostomy/stoma care tips and helped me address potential concerns. One nurse, a true-blue friend, even helped me change my bag a couple of times when I first had my surgery and was in rehab!

Finding Support

During my chemo treatments, I first started looking at online resources and started reaching out. I remembered that my WOCN told me there was an active local ostomy support group. It wasn’t until November 2017 that I was physically able to make any meetings in person.

Encountering the Greater Cincinnati Ostomy Association GCOA was the best connection I could have made post-everything. I originally tried to connect with people through the American Cancer Society and the Cancer Support Community, but bladder cancer is sort of a red-headed stepchild of the cancer community. It affects many on a number of levels, but NO ONE talks about. Not everyone diagnosed with bladder cancer has to go through the extreme treatment measures I did, so there are varying experiences within the diagnosis. However, going to the local cancer-focused groups was very frustrating and discouraging for me as most of the people I met there were breast cancer survivors whose experiences did not have any similarities to my own. There were no local bladder cancer-specific groups in my area and there still are not.

When I finally connected with UOAA/GCOA, I found more understanding, empathy, compassion, and comradery in the first meeting than I had in several with the cancer organizations. People definitely made the difference. Online support was okay, but even there I was sometimes frustrated with the set up because it too easily turns into a forum for sharing memes and complaining about their situations. There’s not a lot of educational conversations or intellectual discussions about what I was experiencing, which was something I was craving.

Becoming Active Again

I am still experiencing neuropathy in my feet and ankles as a side effect of the chemo treatments that I will probably deal with for life and I am still working on getting my strength and energy back, but I am gradually reclaiming everything that I did before. I fell shortly after my last chemo treatment and spent about 3 weeks in the hospital/rehab before getting discharged on a Friday and returning to work the following Monday because I had exhausted all of my medical leave and it was either return to work or lose my job. I did not want to deal with the stress of job hunting after all I had been through and going on disability indefinitely was a luxury that I could not afford, so I returned to work completely bald and using a walker. The first day back, I could barely make it from the front door to my office chair. Still, returning to work was one of the best things for me because it forced me to have to rebuild my strength and be active.

I now work 40+ hours a week again with a team I love supporting and I volunteer with the GCOA and Hughes High School, my alma mater, as much as I can. I took over the presidency of the GCOA back in January. I still live alone on the 2nd floor of my quaint, inner-city, 2-bedroom apartment. I enjoy spending time with friends and extended family. Last May, I rented a car and went on a road trip by myself to Columbus, OH to participate in the BCAN Walk to End Bladder Cancer and catch up with some amazing people that I have in my life. I will be taking a plane and train trip in August to attend the UOAA National Conference and go on vacation in upstate New York afterward. I am finally able to start walking and being a bit more active again and have started trying to figure out how to do some of the higher energy things I used to do (like dancing and workout videos) despite the neuropathy, which sometimes makes it hard for me to coordinate my feet. It’s all a process though and I try to take it one day at a time. I’m hoping to be able to take a trip to Argentina in 2020…your attitude and determination are what makes the difference and I’m determined to accomplish things that I have always wanted to do despite the obstacles I’ve had in my past.

Raising Awareness

Both bladder cancer and urostomies are extremely rare and there are huge discrepancies in diagnosis and treatment of bladder cancer, especially with women and minorities. It has been really important to me to bring awareness to both issues because I truly believe that lives can not only be improved, but saved by advocating, educating and raising awareness of bladder cancer and ostomies. So many people immediately think that having your bladder or part of your colon is going to end life as they know it. In part, they are correct, but not in the way that most people think at first thought. People with ostomies can live long, productive lives and be amazing leaders in their communities…just like anyone else. Just because you will always have a medical condition that requires the use of medical equipment does not mean that your life is over. It is different, that’s all. We’re all different though, having an ostomy just makes you extra special.

When my urology oncology surgeon told me that he wanted to remove my bladder (along with various other abdominal parts), I didn’t hesitate at all and said, “Okay. So what’s next?” I knew that my life would be over if I didn’t get an ostomy and I knew that my life would not be over with an ostomy. It was one of the easiest medical decisions I have ever made. He could have asked me if I wanted a cup of coffee it was that easy. That doesn’t mean that I didn’t have struggles and the journey wasn’t a challenge because I did and it was, but I am grateful that I had a choice of life or death and that I was able to choose life so I could get on with mine. Raising awareness for bladder cancer and ostomy awareness means that I could help someone make that life-saving decision that much more quickly and that they would be able to move onto healing and gratitude that much more quickly, instead of being bitter, pissed and depressed over losing a non-essential piece of themselves.

I have raised money, made social media posts, written articles, blog, had discussions, and encouraged others to go outside of their comfort zone to seek support. Additionally, I fairly quickly began being more involved with my local ASG and am committed to thinking outside the box and expanding opportunities to reach people where they are at and, hopefully, encouraging to become/remain involved and to share their own stories.

Staying Positive

I’m alive! I’m not in constant pain and discomfort. I can sleep through the night and not be up every 10 minutes to go the bathroom. I don’t have to do that “gotta go” dance while standing in line for the ladies’ room. I can hook up to my Foley for long trips or binge-watching and not have to move for hours. My bladder does not interrupt me in the middle of the best scenes when I go to the theater. I’m able to concentrate again. I can relieve myself while standing up or writing my name in the snow (gotta see a little humor in the situation)!

My advice is to just focus on living your life. The closer you get to doing everything you did before, the more positive the picture of life with an ostomy becomes. Yes, you can live without those parts and you can still be an active person. Your life and your dreams are still unlimited…it just might take a little extra preparation and planning, depending on your personal diagnosis and situation, but real life and real dreams take hard work, no matter who you are! You have to work for the things in life that you want anyway…no matter who you are or what your circumstance is, but the harder you have to work for something, the more worthwhile, valuable and meaningful it is to you. Only you can make the decision on how meaningful you want your journey to be though.

Overcoming Challenges

Most of my challenges are from my cancer treatments and not from having an ostomy. Still, bending and twisting are sometimes challenges. I do have a hernia that I way too quickly achieved by sneezing and, although it does not typically bother me, it is something to keep in consideration when I am trying new movements or lifting heavier objects. I have neuropathy and slight hearing loss as side effects of my chemo treatments and those are more annoying and challenging than my ostomy issues. Every once in a while, I have a leak, but I generally carry at least a few supplies with me so I just try to catch it quickly, change and move on. I’m really fortunate to have amazing friends, family & coworkers who are really understanding and supportive when these things happen and they don’t bat an eye when I need to deal with these things. Overall, I’ve pretty much learned to have a new definition of “normal” and I take things day by day and slow down when I need to and, most of all, when new things come up, I TRY instead of just giving in.

Advice for those who may need ostomy surgery?

Don’t think twice! No, it isn’t always easy and it isn’t always an easy choice. Sometimes, it’s all very hard. Yes, life will be different, but, in the long run, it’ll be worth it and at least you will still have a life to live.  If you give the ostomy and yourself a chance, having an ostomy will ultimately give you a better quality of life. Also, don’t be afraid to reach out to others who have had similar experiences…that’s how you get through the challenging moments, days, and weeks. Also, I feel like it is critical to share your own story in some way, shape or form. Not only does it help others get through their situations, but it is a great way for you to heal and get through your own story. Sharing your story is a way of honoring yourself and allowing you to shed light on your own strength because many times you don’t realize just how strong you are. Martin Luther King, Jr said, “Our lives begin to end the day we become silent about things that matter.” Keeping your story bottled up inside and not even sharing it with the people you love is detrimental to your journey. You matter and so does your story, so share it.

Making a Difference

Last year, I hosted a virtual Run for Resilience Ostomy 5k walk locally and I had 6 humans and a canine share in a beautiful day at a local park. It was great to share my story with people who hadn’t heard about it before while walking. Prior to my own surgery, my team at work and I would wear blue and green on Ostomy Awareness Day in support of the patients and families we care for.

I have grown up participating in similar events and have always found them inspiring and empowering. This year, we hope to have even more participation and invite everyone to meet at a group meal afterward. I will be attending my first UOAA National Conference in August and I’m excited to make new connections and learn more information that will enable me to assist others in getting back into life after receiving an ostomy. I would like to see others get involved in these events because it gives them connections, information, support and empowerment. There is no substitute for making connections in real life with people who have tackled the same problems, fought similar battles, and, most of all, WON. There is strength in numbers and we are all stronger together.

About 4 years ago, I awoke to the alarm on my cell phone, and for some reason it seemed to be extra loud this time. I had probably only slept for about 2 hours, but still, I anxiously jumped out of bed with a nervous sense of excitement. Today was the day that would forever change the path of my life. Today was the day that I was headed to the Mayo Clinic Hospital in Phoenix Arizona to have an extremely risky abdominal cancer surgery with no real guarantees that I would even survive it. I had no idea that today was the day that would begin the toughest fight of my life.

You see, at the age of 51, I was diagnosed with “Pseudomyxoma Peritonei secondary to Well-Differentiated Mucinous Adenocarcinoma of the Appendix”. Ultimately this means that years ago, a cluster of cancerous cells had formed in my appendix which caused it to eventually explode. Subsequent to this painful event, the cancerous cells spread themselves throughout my abdominal cavity attaching and growing on the exterior of several organs and producing a considerable amount of ascites fluid. My surgeon explained to me that my condition was extremely rare, and risky with maybe a 30% chance of survival. He agreed to perform the surgery, but looked me in the eyes and said only if I will agree to do my part and be willing to fight for my life!

After the twelve and a half hour long surgery, I woke up to my family hovering over me, and praying for strength and healing. As I became more aware of where I was, I began to notice the multiple tubes, cords and electronic devices attached to me. The doctors and nurses were constantly coming in to check on me, making adjustments to my I.V., monitoring my pain level, and recording my vital signs. A little later, I was paid a visit by my surgeon and he introduced me to someone referred to as my ostomy nurse. I didn’t even realize that I had this bag attached to my abdomen until she asked for my permission to inspect it. Prior to the surgery, I remember my surgeon explaining to me and my wife that an ostomy bag was a possibility, but this was the least of my concerns and I didn’t really comprehend what that actually meant. Along with a couple of other organs, my colon was completely removed and I now had to embrace life with an ileostomy.

Robert at the Arizona Run for Resilience Ostomy 5k, “the sense of family, acceptance and understanding at this event provided much needed encouragement.”

 

For the first year, I dealt with it as best as I could, but in the back of my mind I believed that soon, I would be able to have the reversal surgery and no longer have to deal with an ostomy. As I was approaching the one year anniversary of becoming an ostomate, on Facebook I came in contact with a beautiful soul by the name of Jearlean Taylor. You have probably heard of her, and know that she has been a double ostomate since early childhood. We chatted for a while, and after a detailed discussion, I was convinced that having an ostomy wasn’t so bad. A few days later, I sat down with my surgeon to discuss the possibility of the reversal surgery, and we concluded that in my case, I would actually enjoy a better quality of life by keeping my ileostomy, which now has been named Paco.

Now that the decision had been made to keep Paco, I began to research ostomies and discovered the United Ostomy Associations of America. Come to find out, they were having an ostomy conference in California the very next month, so I

Robert at UOAA’s National Conference where he discovered he was welcomed into the “ostomy family.”

booked it, and made my way to Cali. Not really knowing what to expect, I was pleasantly surprised and almost overwhelmed with gratitude as I was so warmly embraced into the ostomate family. I learned so much about ostomies, and the stories shared by other ostomates really inspired me and gave me the courage to now tell my story. Last year, I finally felt I was physically strong enough to participate by walking in the Run For Resilience Ostomy 5K in Mesa, Arizona. Again, the sense of family, acceptance and understanding at this event provided much-needed encouragement.

 

I am inspired to inspire others by publicly sharing my journey of conquering cancer and living with an ostomy. Through music, speaking and near the completion of my first book, I am telling it all so that others will realize that life experiences will ultimately make you, and not break you. I have come to the realization that my ileostomy has not only changed my way of life but has actually contributed to saving my life. I am forever grateful…

“It’s easy to say what you’re willing to die for, but there is freedom in knowing what you’re willing to live for”.

–Robert Harrion

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Support Made the Difference Before Reversal

I was halfway through a 10-hour drive home to Lancaster County PA from Dayton, where I’d just finished a Relay For Life, when I felt the first pains in my lower left side. Thinking they were just cramps, I shrugged them off and kept driving. The cramps persisted though, so I popped a few Naproxen and tried to put my mind on something else.

Eventually I decided to stop at a hotel and sleep it off, then worry about it later. Whatever it was, I couldn’t do anything about it now, I’d call my doctor when I got home. A hospital “just happened” to be next to the hotel I chose, after bypassing 4 others.

When I checked in, though, I was so cramped up that I couldn’t even stand straight. I was sweating, weak, and had a bout of diarrhea. I had always been pretty healthy, so I had no frame of reference for what was going on with me. I figured I had a flu bug or maybe a cyst. I tried eating, taking a shower, more Naproxen, but nothing helped.

Finally at 1:23 am I felt a compulsion to go to the ER. I had no idea what was going on with me but I knew I needed to be checked out. After being checked in, I had a CT scan. The surgeon came back to me himself and announced that I had a ruptured colon and that I was going to have to go into emergency surgery. He could either sew it up or I’d have to have a colostomy.

I had never had issues with my colon and thought colostomies were for “old people”. Alone, still 4 hours from home, I had no clue what I was in for.

I woke up hours later in a drugged daze. The surgeon came in to say that he’d had to do the colostomy. “The hole was so big I could put my thumb through it!” he said in amazement. I looked down at my left side to see this new, strange thing called a colostomy bag attached to me. How was I going to live with this?

At home, I connected with several different sources that I couldn’t have done without. A home health care nurse who showed me how to use and live with the bag, a WOC nurse who educated me, an online support group with fellow ostomates, who were always there for tips or to hear me vent.

I thought my life would be suppressed. But I was still able to swim, jog, bike, go out to eat, travel, and all the others things I did before.

I was fortunate to have a reversal three months later. I recovered quickly with no further health issues. I have a scar, but it reminds me to be thankful for the surgeon, nurses, and support group people who helped me along the way-I could not have done it without them.

Learn more about Jennifer’s story before and after her emergency surgery on her blog.

I was told if I didn’t have the surgery when I did, my Crohn’s disease would have killed me. Surgery made a drastic change in my life for the better. Now I will be around for my wife and kids.

I had a promising career in the United States Army, but that all quickly changed. In 2014 I was deployed to Afghanistan. During my deployment, I noticed something wasn’t right and started having a lot of stomach pains and other symptoms. At the time I didn’t think much about it. I was focused on the mission during my deployment. I always put my soldier’s needs before mine. So nine months went by and I came home in 2015. Still having these symptoms I was asked to do another deployment to Iraq. I took the deployment for another nine months. Towards the end of my deployment, I was in a lot of pain. Once I returned back home I finally saw a medical doctor. After several tests, I was diagnosed with Crohn’s disease. Later I started treatments, but nothing was working. As a result, I was medically discharged from the military in August 2016; whereupon, I continued my treatments back home in Dayton, Ohio. In December 2016, I was still in so much pain that I went to the emergency room for testing. When the doctor came back, he told me I needed to have emergency surgery. That December I had my first surgery and I went home with a permanent ostomy. It was a difficult transition back to civilian life and even more challenging now adapting to life with an ostomy.

I really struggled in the beginning. I felt alone trying to figure things out. I went from being in the best shape of my life from being in the military to gaining weight and being depressed. I even shut my family out. I didn’t think support would benefit me because in my mind they were civilians and not prior military service members. One day I woke up and realized this doesn’t have to be this way and turned it around. I did reach out to a few support groups on Facebook looking for advice and how people deal with having an ostomy pouch. I realized it wasn’t about the military anymore, but all of the support people out there are willing to give. My wife is my biggest supporter!

I’ve read so many articles about Crohn’s and ostomy pouches, but I haven’t really felt like anyone was affected in the military as much. Now I want to share my story. I reached out to UOAA because I hope to advocate for all military and their families that struggle through this. I want to be the one who is there for a fellow service member that when they find out they have this disease that they are not alone and even though you loved and enjoyed the military, there’s still a bright future outside of the military.

Even after two years I still struggle with the thought of having a “bag” and some pain, but I am able to stay active now and recently went back to doing what I love – getting fit, and being outdoors and hunting and fishing. I feel having an ostomy was a slight setback, but it was not the end. There are far worse things in life. So if me having to do this to save my life and be able to enjoy it, then I find that as my motivation to keep going. Most importantly, I’m no longer out with the constant bathroom trips and horrible pain that left me not being able to love life and spend time with my wife and kids.

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.

Ostomy Support, Love and Giving Back

By Jeanine Gleba, UOAA Advocacy Manager

On November 11th the United States observes Veterans Day to honor all those who have served in the United States Armed Forces. This year at UOAA I’d like to shine a light on two Veterans with ostomies who now continue to serve as volunteer advocates with UOAA in the Advocacy Network. Most recently, they were able to raise ostomy awareness in the state of Texas by garnering not one, not two, but three proclamations from their town, County and the Governor!  

Dan Shockley is an Operation Desert Storm; Operation Enduring Freedom (OEF) and Operation Iraqi Freedom (OIF) veteran.  He served for 22 years in “the world’s greatest Navy” onboard 7 different ships. His last tour before retiring was after 9-11 on the ground in Bahrain in direct support of OEF and OIF between September 2001 – September 2003. In 2012 after his first and only colonoscopy revealed 100 polyps embedded in his colon, rectum and anus, he was diagnosed with a rare gene mutation known as attenuated familial adenomatous polyposis (AFAP). In July 2012 at 51 years of age, he had successful ileostomy surgery at Tripler Army Medical Center, Hawaii.

 Donna Desoto, Dan’s girlfriend, began her Military career in 1976. She was in the last basic training class of The Women’s Army Corps (WACS). She also attended the Medical Lab Assistant school at the Academy of Health Sciences at Ft. Sam Houston, TX. She was then chosen to join the medical research team at Headquarter Co Troop Command at Brook Army Medical Center under the Clinical Investigation Services. She co-invented a vaccine for burn patients and received The Army Commendation Medal for meritorious service of her research between 1976 to 1979.  While serving in the military she was diagnosed with Chronic Interstitial Cystitis. After over a year of trying to save her bladder with an experimental drug instilled in her bladder surgically, she had urostomy surgery. She also had a stroke prior to that due to an allergic reaction to an unknown medicine. It took 25 plus surgeries before removing her bladder. She was in the hospital the whole time leading up to the final removal of her bladder and then was medically retired in 1981.

I recently caught up with them and asked the following questions:

UOAA:          How did you two meet and become a couple?

Dan:            Donna and I met on the Singles with Stomas Facebook group in the summer of 2016. We commented on each other’s posts. In the following months we developed a friendship based on our commonalities. We’re both retired military, left-handed, interested in medical research, and of Scottish descent. In May 2018 she called me suggesting it was time for us to get together. At the end of July I relocated to South Texas to be with her.

UOAA:             Such a great story!

UOAA:          How did you get involved in UOAA?

Dan:           My involvement began as an inpatient at Tripler Army Medical Center, Hawaii, after my surgery. Tripler’s WOC nurse shared with me information about United Ostomy Associations of America. At that point I was eager to share my diagnosis and story with others and UOAA and become an advocate.

UOAA:            It’s so important for people to realize that they can make an impact when they do share their story whether it is inspiring someone else or making the journey a little easier for someone questioning life with an ostomy.  There is also a big need in our advocacy efforts especially legislatively because elected officials want to help their constituents who the issues directly affect and hear their stories.  We can raise so much more awareness when we grow in numbers.

UOAA:           Why do you advocate for ostomates?

Dan:               My life’s focus as a colon cancer warrior, having a rare gene mutation and an ostomy is to be a source for the importance of early detection. It’s also important to me to show that life can go on having an ostomy. I consider my diagnosis a challenge rather than obstacle. That said, there’s an old cliche you can lead a horse to water, however you can’t make it drink. I’ve heard there is a way to influence the horse to drink when it reaches the watering hole. Feed it salt along the way. Hopefully my story will serve as a source of salt for those who read it.

Donna:         The main reason I feel the importance of advocating for ostomates is because I feel increasing awareness is very important and other more well known causes get lots of awareness whereas I see that many people have little or no knowledge of what an ostomy is.  Also, I see a need legislatively for ostomates in areas that should be addressed especially one area I have experienced is the usage of restrooms and other public issues.

UOAA: Why is it important for people to get involved?

Dan:        Projecting a positive outlook is important to me. Having an ostomy is a lifesaving surgery. By sending out positive vibes I receive them back tenfold. I may have been diagnosed with AFAP but my AFAP mantra is: Always Forge Ahead with a Purpose!

Donna:   Being involved with UOAA and my other volunteer efforts (Donna founded Sav-Baby Inc.) has helped me to take my mind and focus away from my medical challenges and pain and allows me the opportunity to reach out to those struggling with their current or ongoing medical issues. Not only can I hopefully be an inspiration to others it is also an opportunity to make new friends and encourage them to get involved in some way such as a being a friend to someone else or becoming an advocate or volunteer.

UOAA:          And you and Dan certainly became friends! One of the most significant things that UOAA does is provide support through our Affiliated Support Groups.  It is one of the top reasons that we get calls into our 800 information line.  People are looking for emotional support and to meet others going through similar experiences so they can learn from each other.

Dan:       I’ve been a member of UOAA support groups in Eagle, Idaho; Carmichael, California, Honolulu, Hawaii and now both of us just started attending meetings at the South Texas Ostomy group in San Antonio, TX.

UOAA:         Do you talk about your ostomy and/or military experience with others?

Dan:        I share my ostomy and military experiences every opportunity that presents itself. As a “live case presentation” for the medical community and ostomy groups I feel it is important to show life can go on as if nothing happened. Being a source of inspiration and encouragement is important to me. It’s been said we’re unable to change the wind. However, we can adjust our sails. After 22 years in the Navy I’m good at adjusting. That’s my story and I’m sticking to it!

Donna:       I talk freely with others about my ostomy. I am no longer ashamed or embarrassed.  I am so proud to be a Canadian who became a US Veteran and citizen. I participate in both military and ostomy groups.  I try my hardest not to let my ostomy limit anything I choose to do in my life.

UOAA:            What does Veterans Day mean to you?

Dan:        Veterans Day is when I reflect on and recognize those who made the ultimate sacrifice to defend our 13 stripes and 50 stars. My father served in the Army during WWII, two of my uncle’s served in the Navy and 1 uncle served in the Marines during the Korean War. My brother served in the Air Force during the Vietnam conflict.

Donna:       Veterans Day is a very emotional day for me for so many reasons. My thoughts and prayers go out to all our Sisters and Brothers who lost their lives for our freedom, as well as those currently serving, those now retired and all of their loved ones.  The real special part of Veterans Day for me is that I was born in Canada. After college I decided to join the US Army and officially become a US citizen. I was so proud the day I became a US citizen and that same proudness was felt when I took my path to become a volunteer member of the US Army.  When my two adopted children were little and my little girl that I saved from abandonment was old enough I would tell them that I was “an Alien who wore combat boots”. They loved to share that story with their friends. My Uncle enlisted in the British Army and his submarine was lost during the war. His mother, my Grandmother, who brought me up in the United States was so sad on Veterans Day as it was forever painful losing her oldest son.

UOAA:             You are both a reminder to me of John F. Kennedy’s inaugural speech, when he said the infamous words, “Ask not what your country can do for you, ask what you can do for your country.”  You both embody “service”.

As Advocacy Manager I am in the unique position to not only hear many amazing ostomy stories of resilience but also to watch many passionate and fascinating people as they take action and work together to achieve a common good cause for our community.  It is truly an honor and a privilege for me to work alongside such dedicated, impressive and patriotic volunteers like Dan and Donna.

Thank you to all Veterans who have or are actively serving America! Happy Veterans Day!

“Here’s my UOAA acronym:” ~ D. Shockley

                                                      Understand (your diagnosis)

                                                      Overcome (adversity)

                                                      Attitude = 100%

                                                      Adapt (to your lifestyle as an ostomate)

After eight years of not responding to western pharmaceuticals, at the age of thirty, I found myself facing a colectomy. While I had anxiety about the ostomy surgery and fear of the unknown, my overall emotion was relief. This surgery was hopefully going to be the end of many years of pain and suffering. Thanks to the encouraging words of other ostomates I was wheeled into surgery with a smile on my face, excited about what the future would hold for me–I saw endless possibility!
The support I received from the local ostomy support group along with many wonderful bloggers inspired me to be vocal about my story. I started my own blog and instagram account to raise awareness about life with an ostomy and provide support to fellow ostomates. There is so much value in people who are facing an adversity to come together and lift each other up.
I’ve been on a rollercoaster ride with my permanent ileostomy (I named her Rita) for the past two years. Life is full of ups and downs, however, I am proud to say that Rita and I have traveled to Hawaii to snorkel in the ocean and hike through the cliffs of the Napali coast. We wore a bikini on the beaches of Maryland’s eastern shore, danced our way through weddings, explored new foods at restaurants with friends and worked our way through a graduate degree in acupuncture!
Philosopher Wayne Dyer once said, “When we change the way we look at things, the things we look at change.”  When diagnosed with ulcerative colitis it was easy to fall into a mode of feeling isolated and alone during periods of flares. I forgot what life was like as an energetic and healthy young professional. The expectation of a healthy life and the unfair reality caused a lot of unnecessary suffering. What I learned is that we all have the option to dance with life. Crisis can open a door to a new opportunity, a loss can be seen as a gain, and a breakdown can turn into a breakthrough.

You can follow Rena’s story on Instagram @myintestinalfortitude or her blog www.myintestinalfortitude.com

Bruce and I were so young when we met at a dance, and for the first two decades of our married lives we never thought about life-altering health issues. And then in 1993, I had my first major bowel obstruction caused by an adhesion from a hysterectomy three months before. Suddenly we heard words like peritonitis, bowel resection and small bowel blockages. That vocabulary grew as the ramifications of 22 abdominal surgeries caused more and more scar tissue and concomitant problems. Finally, three years ago, after agonizing episodes and continuous visits to the emergency room, my surgeon and I agreed that it was time to see if an ileostomy would provide some relief.

I virtually bounced into the room with my ostomy nurse as she prepared to mark me right before my surgery, so hopeful that the tide would finally turn. She then walked us to the operating room prep area, preparing me for what was to come. But nothing prepared me for the way I saw myself the first time in my own full-length mirror. My body had betrayed me and I was now “marked” in a very different way. I looked to my lifelong dance partner with tears in my eyes.

Bruce took me in his arms and told me that not only did he love me, but that he had such respect and admiration for me, and I suppose “Lily,” as I refer to my stoma. My mother was Lillian and she gave me my first life, while Lily gave me my new life, and with that a sense that I can do anything. And the best news is that instead of spending time in the emergency and operating rooms, we have time to dance…even closer than ever before!

By the way, I am very proud to say that I am the president of my Ostomy Support Group in New Jersey, and I never miss an opportunity to welcome new or prospective members…how wonderful to be associated with this new life I so desperately needed, and so very much appreciate!