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Thu, Feb 13 5:05pm · Ostomate Jonathan Negretti Finishes World Marathon Challenge in Ostomy

Jonathon finishes World Challenge

Jonathan Negretti finishes the World Marathon Challenge.  7 Marathons in 7 Days on 7 Continents

Congratulations, Jonathan on being the first Ostomate to finish this amazing accomplishment.

The world marathon challenge is a logistical and physical challenge to run 7 marathons on 7 continents in 7 days between February 6 – 12.  Competitors ran the standard 42.2 km marathon each day for 7 days on the continents of Antarctica, Africa, Australia, Asia, Europe, South American and North America.

What an accomplishment.  We would love to hear your accomplishments.  Please share your triumphs and successes while living with an ostomy.

 

Thu, Feb 6 8:41am · Patient Story: Challenging Yourself in Ostomy

Jonathon pic

The world marathon challenge is a logistical and physical challenge to run 7 marathons on 7 continents in 7 days. Between February 6 – 12, competitors will run the standard 42.2 km marathon each day for 7 days on the continents of Antarctica, Africa, Australia, Asia, Europe, South American and North America. The clock starts when the first marathon begins in Antarctica.

Jonathan Negretti is one of the 50 competitors in the 2020 World Marathon Challenge. Jonathon was diagnosed 20 years ago with Ulcerative Colitis (UC), a type of inflammatory bowel disease. His disease eventually led to surgery and the removal of his large intestines, which now requires him to live full time with an ileostomy. Having an ileostomy is not stopping him from running in this year’s World Marathon Challenge.

“Participating in the World Marathon Challenge is not only an epic personal challenge, but an incredible platform for me to raise awareness for Heather’s Mission,” said Jonathan. “My hope is to garner enough attention to make a difference in people’s lives and inspire others who are living with an ostomy.”

If you would like to learn more about the World Marathon Challenge, visit

https://worldmarathonchallenge.com

 

Fri, Jan 3 4:29pm · Giving Back - Heather's Mission and Awesome Ollie in Ostomy

Ollie

We would like to introduce you to Heather’s Mission. Heather’s Mission is an Ostomy Foundation dedicated to improving the lives of those with Crohn’s disease and Ulcerative Colitis. Heather’s Mission was started by Heather Christiansen. Heather was diagnosed at the age of 40 with aggressive ulcerative colitis. After many different treatments and medications, her colon completely stopped working and she underwent surgery resulting in a temporary ostomy. Heather’s story and hard work inspired the Arizona based non-profit organization known as Heather’s Mission to be born. With the help of her friends and fellow ostomates, Heather provides support and friendship to those in need and those suffering from Crohn’s and Ulcerative Colitis.

One of Heather’s friends is Awesome Ollie. Ollie is a teddy bear who also has an ostomy. It is the goal of Awesome Ostomy and Heather’s Mission to ensure anyone needing hope, comfort and encouragement while undergoing ostomy surgery are introduced to the Awesome Ollie bear and his book. Ollie and his story travel from hospital to hospital providing education, comfort and counseling.

For more information on Heather, her Mission or Awesome Ollie, please click on links below.

Heather’s Mission

Awesome Ollie

What provided you with the most comfort and hope during your recovery? Did you have a special friend or organization and story that you would like to share?

Nov 18, 2019 · Ostomate Runs Fastest Marathon Ever in Ostomy

 

Collin Jarvis Marathon

Collin Jarvis, Vice President of Stealth Belt Inc. just ran one of the fastest marathons ever with an ostomy, proving that those with an ostomy have no limits. He recently ran the Edmonton Marathon and finished in third place with a time of 2:27:30.

Collin Jarvis was diagnosed with Ulcerative Colitis in 2013 when he was 21 years old. 8 months after his initial diagnosis, he was forced to undergo emergency surgery to have his large intestine removed and ileostomy placement. After surgery, Collin returned to college to finish his degree and prove to the world that he still had what it takes to compete with some of the highest level distance runners in the country.

We would like to share his inspirational story from the recent issue of Runner’s World. With Collin’s permission, please follow this link to read his story and learn more about his recent marathon.

Runner’s World – Collin Jarvis Runs Fastest Marathon

Collin now works with Stealth Belt.  The Stealth Belt is a variety of ostomy belts designed to help you live your life to the fullest.  If you would like to learn more about Collin and his work with Stealth Belt, please visit http://www.stealthbelt.com

We would love to hear about your challenges and victories. Please share your stories below.

Oct 23, 2019 · Mayo Clinic Arizona Ostomy Support Group in Ostomy

MCaz

Mayo Clinic Arizona

Ostomy Support Group

If you or someone you know has a colostomy, ileostomy or urostomy, you may be interested in attending the Mayo Clinic Arizona Ostomy Support Group

  • Information on managing stoma and skin surrounding stoma
  • Updates on new and current ostomy care and products
  • Helpful tips from other members
  • Invited speakers such as physicians, ostomy nurses and ostomy product representatives
  • Support and Education
  • Led by Mayo Clinic Arizona Ostomy Nurses certified in Ostomy Care.

Meets every 1st Tuesday of the Month at 6:00 pm

Mayo Clinic Arizona Hospital Campus

5777 East Mayo Boulevard

Phoenix, Arizona 85054

Room 1-212

Jul 11, 2019 · Swimming with an Ostomy in Ostomy

swimming pic

written by Charlene Germer, RN, C.W.C.N

There are people who enjoy swimming but feel as though having an ostomy prevents them from continuing to enjoy this activity. At first it may seem that swimming is no longer acceptable because of having to wear an ostomy pouch and fear that people may believe or think that someone with an ostomy should not be allowed in a pool, lake or even a cruise.  But the truth is you can swim with an ostomy and should not give up the activities that you enjoy.

The pouching system is water resistant and designed to not leak if properly sealed. Water will not harm nor enter your stoma. Always make sure the seal is secure. Empty your pouch before and make sure the wafer has been on for an hour prior to getting wet. If you are concerned about the output especially an Ileostomy eat a few hours before swimming. Use a filter cover stick on your deodorizing filter which prevents water from entering the pouch. Once you are dry you may remove the filter cover stick.  Always carry extra supplies with you. If you are still unsure about swimming fill your bathtub with water, put your bathing suit on and sit in the tub for half an hour and when you see that there is no leakage your will feel more confident and you also get to see how you swimming suit looks with an ostomy pouch.

What to wear is always a question especially when it comes to swimming. Wear what makes you feel comfortable and swimming with an ostomy should be fun and stress free-no worries.

 

May 28, 2019 · Ostomy Diet After Surgery in Ostomy

food

written by Olivia Baker, MS, RDN

When you hear that you need to have ileostomy surgery, you may wonder how this will affect your diet. The biggest concerns that patients with an ileostomy have include ostomy output, odor, and gas. While there is not an “official” ileostomy diet, there are some foods that can aggravate some of these symptoms.  Some general suggestions to prevent or manage these concerns include:

  • Keep regular meal times, this helps regulate ostomy output
  • Chew all food thoroughly.  Chewing eases the digestive process and can reduce the occurrence of blockages.
  • Include stool-thickening foods. You typically absorb more nutrients and water when food moves slowly thorough the digestive tract. Foods that can help with this include applesauce, bananas, bread, rice, and pasta.
  • Stay hydrated. Making up for fluid lost in your ostomy is key to preventing dehydration
  • Try new foods one at a time. This will help you choose the foods that best agree with your body and can help manage stool consistency
  • Avoid using straws and chewing gum. These cause excess gas.
  • Know which foods cause odor, and which can help lessen it. For example, buttermilk and yogurt can help prevent odors caused by foods like asparagus, eggs, fish, garlic, and onions

It is a good idea to stay away from foods that cannot be completely digested during the first two weeks after surgery. This includes fresh/raw fruits and vegetables. Once you are cleared to begin adding these foods back into your diet, take it slow. Add one new food back in at a time, so you can help find what foods agree with you, and foods that do not. But it’s important to not eliminate a food from your diet without trying it a few times. A well-balanced diet will help your body recover from surgery and keep you on track for a healthy lifestyle.

Have more questions? Ask your care provider or ask them to schedule a nutrition consult with a Mayo Clinic RDN.

May 20, 2019 · Intimacy with an Ostomy in Ostomy

intimacy pic

written by D. Fechner RN, CWOCN

Intimacy and an Ostomy

Let’s talk about one of the things that no one wants to bring up…..but what everyone is thinking! Am I right?!? One of the biggest concerns for new ostomates is how the ostomy will affect their relationships.  It’s natural to feel stressed about possible relationship issues related to your ostomy.  Some common questions are: Will my partner look at me differently?  How will it affect my dating life and/or sexual relationships?  How will the pouch affect my sex life?  The good news is intimacy and sex is still possible after having ostomy surgery!

The most important thing to remember is there is more to intimacy than just sexual relationships. Being intimate with your partner is about a deep level of familiarity, closeness and trust between two people.  Being open and honest with your feelings will help your partner understand what you are going through and create a deeper bond.  It’s very important to talk and share about your feelings and not hold them inside.

If you are dating and you anticipate things getting more serious, make sure to be open and honest with your partner. Be upfront about what they can expect with your body.  Explain why you had the surgery and why you need to wear a pouching system.  Explain to them how this has changed your life and situation for the better so your partner understands.  This will create a level of trust and intimacy.

If you are in a committed relationship, make sure to include your partner as soon as possible. Bring them to all your pre-op appointments where the topic will most likely get brought up.  You can talk to the surgeon about how it will affect your body together.  Most couples feel this actually brings them closer.   Involve them early in pouching changes in the hospital so they know what to expect.  Attend a pre-op education class to learn about all the information upfront.  If you learn all this upfront, it lessens the shock and fear that comes with the unknown.

Here is a list of suggestions to make intercourse more comfortable following surgery:

  • Empty the pouch prior
  • Make sure all connections are secure and locked
  • Buy special clothing options to make yourself feel more comfortable such as silky tops, wraps, cummerbunds, and/or specialized underwear
  • Consider a fabric pouch cover to prevent rubbing on your partners skin
  • Smaller pouches and pouches with opaque covers will conceal contents in the pouch
  • You don’t need to change anything with positioning-do what you are comfortable with
  • Take things slow and remember sex is about your comfort level
  • Never use the stoma for intercourse

Remember, the most important thing is to be proactive, open and communicate. Support groups are also available after surgery and a good place to share your concerns.   Your WOC RN is also a great resource to help with clothing and accessory options.  The United Ostomy Association of America (UOAA) has wonderful written information and resources about intimacy and sexuality on their website: http://www.ostomy.org.

Meet other people talking about living with an ostomy on Mayo Clinic Connect. Join the conversation, share experiences, ask questions, and discover your support network.