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Patient Story: Traveling the World

Sep 2, 2018 | Candy-CWOCN RN | @candywocrn | Comments (4)

Teddy

written by Teddy S.

Growing up I did not know I had Ulcerative Colitis until I was diagnosed at 18 years old, but looking back I had symptoms since I was a little kid. When I was finally diagnosed, I was using the restroom 10 or more times per day, urgently with intermittent abdominal pain. I had difficulty living the life of a normal college student. I spent many years trying different medications with minimal success. Finally, after years of being in a flare at the age of 25 I reluctantly decided to undergo Ostomy surgery with the support of my family and girlfriend at the time, who is now my wife. My medical providers had spent years telling me about the surgical options to relieve my symptoms, but the thought of having an ostomy was frightening.

Before surgery, I did not know if I could live a full life doing everything I wanted to do with an ostomy bag. The ostomy nurses and medical providers reassured me that I could do anything I wanted with an ostomy, but I was in fear of the unknown and I did not know anyone with an ostomy I could talk to. It turns out they were correct and I do more now than I ever did before having surgery.

The first month after surgery was very difficult because I was still recovering while trying to get used to living life with an ostomy. However, day by day I recovered and saw that a whole world of possibilities had opened up for me. I could now take part in a myriad of activities that I would have never done before. First, it was the little things, like going on a walk without constant fear of being away from the restroom, or getting on plane without having to sit in the last row on the aisle right next to the restroom. Thanks to my newly-found freedom, I was able to go to nursing school, become a registered nurse, get married, and travel the world. In the last few years, my wife and I traveled to Buenos Aires, Santiago, Machu Picchu, California, Washington and Hawaii and we are already planning future trips to Asia and Europe. We went ziplining and snorkeling in Hawaii, hiked around Machu Picchu and Mt. Rainier, and wandered through the streets and parks of Santiago, Buenos Aires, and Cusco. I can now go to restaurants without the fear of new foods terrorizing my intestines. These were trips and activities I would have never dreamed of doing before surgery. I go hiking, swimming, play sports, go to the gym, use hot tubs, work full-time, and have the freedom to do anything I want to do without the ostomy holding me back.

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It took several months to get used to life with an ostomy, but I could not be happier that I made the decision to have surgery and take my life back. My only regret is that I waited as long as I did to have surgery. I live my life to the fullest and I am very thankful that having an ostomy has allowed me to do this.

Read more patient stories on Mayo Clinic's In the Loop

3 Reactions

Interested in more newsfeed posts like this? Go to the Ostomy blog.

jstanhill | @jstanhill | Dec 28, 2018

Wow!. I recently was a patient at Mayo for a bowel obstruction. I have had an ileostomy for 39 years (I will tell my story on another page). I was fortunate to have Teddy as one of amazing nurses during my stay. I thank him for his inspiration to be part of this group and share my story.
THANKS TEDDY!
Jeff Stanhill

REPLY
jstanhill | @jstanhill | Jan 4, 2019

My Ostomy Improved My Quality of Life

My story goes back to 1974. I had just graduated from culinary school in Los Angeles. I was having digestive issues, and on the advise of my parents, went to see a gastrointerologist. I was diagnosed with ulcerative colitis. A year later, after many prescriptions, the diagnosis came in with Crohn's disease. At that time not much was known about Crohn's, only to treat it with diet and medication. At one time I was taking thirteen pills three times a day. The worst of it was prednisone. 50 MG a day. For those that have been on it, you know what it does to you. Not pleasant!.

For three years, I saw my doctor monthly and stayed on the meds as I was told. I stayed on the diet (no fresh fruit or fresh veggies, no milk as they thought I was lactose intolerant. I was a regular at the local hospital. At least once every two months from bad cramping and spasms. Demarol was the only thing that would ease the pain.

Finally in April of 1978, I went in for a colectomy. In those days, the surgery took 7-8 hours and left me with a twelve inch scar from below my chest to my groin. A year later the Crohn's reappeared. The rest of my large intestine was removed and an ileostomy was put in place. Fortunately I have not taken any medication for Crohn's since then.

During my illness I was blessed to have met my beautiful wife. We actually met before my first surgery. I must tell you that there is no way I could have made it without her. She was my rock then and is still today. This August we will celebrate our 40th wedding anniversary. We have also been blessed with two beautiful children and now two amazing and loving grandkids.

Fast forward 35 years. I had a few visits to the hospital due to adhesions, but managed to only be in for a few days each time.

I have been dealing with bowel obstructions and a Stomal hernia for the past four plus years. Twice the hernia has been repaired. Since the obstructions started, I have had to remove items from my diet. The doctors at Mayo have been amazing. And I can't say enough about the nurses and the quality of care that I have received each time I had to be admitted. They are the BEST! Each time, my wife would stay with me. It is so important to have an advocate with you while you are a patient.

During my recent visit, one of my nurses was Teddy. He also has an ileostomy. He shared with me about a support group that was being formed at Mayo for Ostomy patients. I was very excited to hear this and told him that I wanted to be part of it. To say the least, I look forward to helping other Ostomy patients with their issues and just being there to listen to what they have to say.

I am currently a culinary arts teacher the Peoria Unified School District.

Thank you for letting me share my story.

Jeff Stanhill

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 25, 2019
In reply to @jstanhill "My Ostomy Improved My Quality of Life My story goes back to 1974. I had just..." + (show)
@jstanhill

My Ostomy Improved My Quality of Life

My story goes back to 1974. I had just graduated from culinary school in Los Angeles. I was having digestive issues, and on the advise of my parents, went to see a gastrointerologist. I was diagnosed with ulcerative colitis. A year later, after many prescriptions, the diagnosis came in with Crohn's disease. At that time not much was known about Crohn's, only to treat it with diet and medication. At one time I was taking thirteen pills three times a day. The worst of it was prednisone. 50 MG a day. For those that have been on it, you know what it does to you. Not pleasant!.

For three years, I saw my doctor monthly and stayed on the meds as I was told. I stayed on the diet (no fresh fruit or fresh veggies, no milk as they thought I was lactose intolerant. I was a regular at the local hospital. At least once every two months from bad cramping and spasms. Demarol was the only thing that would ease the pain.

Finally in April of 1978, I went in for a colectomy. In those days, the surgery took 7-8 hours and left me with a twelve inch scar from below my chest to my groin. A year later the Crohn's reappeared. The rest of my large intestine was removed and an ileostomy was put in place. Fortunately I have not taken any medication for Crohn's since then.

During my illness I was blessed to have met my beautiful wife. We actually met before my first surgery. I must tell you that there is no way I could have made it without her. She was my rock then and is still today. This August we will celebrate our 40th wedding anniversary. We have also been blessed with two beautiful children and now two amazing and loving grandkids.

Fast forward 35 years. I had a few visits to the hospital due to adhesions, but managed to only be in for a few days each time.

I have been dealing with bowel obstructions and a Stomal hernia for the past four plus years. Twice the hernia has been repaired. Since the obstructions started, I have had to remove items from my diet. The doctors at Mayo have been amazing. And I can't say enough about the nurses and the quality of care that I have received each time I had to be admitted. They are the BEST! Each time, my wife would stay with me. It is so important to have an advocate with you while you are a patient.

During my recent visit, one of my nurses was Teddy. He also has an ileostomy. He shared with me about a support group that was being formed at Mayo for Ostomy patients. I was very excited to hear this and told him that I wanted to be part of it. To say the least, I look forward to helping other Ostomy patients with their issues and just being there to listen to what they have to say.

I am currently a culinary arts teacher the Peoria Unified School District.

Thank you for letting me share my story.

Jeff Stanhill

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Hi @jstanhill, Thanks for sharing your story. I also invite you to share with fellow ostomates in the Digestive Health group on Mayo Clinic Connect. I hope you'll read through the posts to see where you might be able to offer hope and support.

- Ostomy: Adapting to life after colostomy, ileostomy or urostomy https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/

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