Tag Archive for: ostomy

I Just Need a Moment- Taking a Break from the Expectations of Ostomy Life

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By Tricia Hottenstein

The problem with being strong is that people expect you to always be strong. When your body has been put through so much, people expect it to willingly fight through anything. After life hands you a few too many lemons, you’re expected to just make an extra-large lemonade. The problem is, sometimes I can’t be strong. Sometimes I just don’t want to be.

When I get a new diagnosis or the old one flares up, I don’t always react with immediate strength. When I wake up to a leak or suffer through an obstruction, I don’t always react with immediate strength. When I need to call off work or cancel with friends and feel like I’m letting people down, I don’t always react with immediate strength. And sometimes, my lack of strength is why I need to cancel. Because it is damn exhausting sometimes. Dealing with life, dealing with an ostomy. Dealing with doctors and tests and medicine. With random pain or nausea. With what seems like a constant cycle of bad news after the last bad news. Dealing with an independent and stubborn 5-year-old when I’m not at my best. It’s exhausting.

And I just don’t want to be strong. I want to slump down in my seat and sob. I want to be needy, and helped. Most of the time, I feel like the benefit to

The author gets some much-needed self-care that is so important in life with an ostomy or chronic disease.

this life is that it made me a better person, a better friend. I can support someone through their hard moments because I’ve been through enough of my own. I may not be the most compassionate person in the world, but I will be there. For even an acquaintance. I will help anyone I can, however, I can. But the downfall is that sometimes I want to be the person on the other end. I give my strength to so many other people, yet for the most part, I feel I rely mostly on my own. And most of the time, I am strong enough for that to be possible.

Although I always think I’ve had this strength, having an ostomy made it necessary to rely on myself. By the time I had the surgery, I learned what I could and couldn’t eat. I had to self-navigate my triggers and try to make sense out of them. Oftentimes, I needed to coordinate doctors with specialists and be competent enough to fill in the blanks of my medical history. Mainly, I just had to deal. With the embarrassment, the unpredictability, and the often crippling pain. And then I had surgery, and had to be strong all over again. I had to relearn what I could and couldn’t eat and figure out all the tricks for keeping my ostomy happy. The learning curve was a tough one. Sure, there are support groups. But this is also an individual journey and I needed to be self-sufficient and strong.

But mid-meltdown? I am not. I want to be weak. I need to take a moment to feel sorry for myself. I do not want to hear about how I can beat anything because my body has already tackled everything else. I need to cry and process all the thoughts swirling in my head. I need to feel frustrated at the nonstop barrage of crap being thrown at me. I need to let my shoulders fall and my eyes sink. I need someone to be there for me the way I hope I would be there for them. I just need a moment. Because honestly, I AM strong. And I am damn proud of it. I try to be positive and handle things with composure and as much grace as my body (and personality) can put forth. And once I stop feeling sorry for myself, I will stand up and shake off and go forward and tackle everything on my plate with a vengeance.

I just need a moment.

More on Emotional Health

March is Colorectal Cancer Awareness Month

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UOAA Supports the Survivors of Colorectal Cancer

 

Colorectal cancer is the third most common cancer diagnosis among men and women combined in the United States. There is currently no cure, but it’s 90 percent treatable if caught early with a screening. American Cancer Society estimates there will be over 140,000 new cases and over 50,000 deaths this year.

Recent research has confirmed what many have long suspected–more young people are dying of colorectal cancer. Ten percent of all new colorectal cancer patients are under the age of 50 and are too often misdiagnosed.

People with other bowel diseases have an increased risk for colorectal cancer. This includes ulcerative colitis, Crohn’s disease, pre-cancerous polyps, and hereditary syndromes such as familial adenomatous polyposis (FAP) or hereditary non-polyposis colon cancer (HNPCC), or Lynch syndrome.

If you need to have lifesaving ostomy surgery because of colorectal cancer or any other reason, education and peer-support is available from the approximately 300 affiliated support groups of United Ostomy Associations of America. Ostomy patients of all ages and their families, friends and caregivers are welcome. Find a meeting near you today. You are not alone.

UOAA is proud to be a member organization of the National Colorectal Cancer Roundtable (NCCRT). The NCCRT is a collaborative partnership with more than 100 member organizations across the nation, committed to taking action in the screening, prevention, and early detection of colorectal cancer.

Back to Work with an Ostomy

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From the board room to construction, to long shifts in a hospital, people with living with an ostomy (colostomy, ileostomy, urostomy, ect.) work every job imaginable.  Embracing a “new normal” in life after ostomy surgery is key to living an active life, and that daily norm means going back to work.

According to the American Society of Colon and Rectal Surgeons once a person has recovered from surgery your ostomy should not limit your return to work. When you return depends on your individual recovery, ease of pouch management and how physical your job is (due to the increased risk of hernia).

Whether to tell your employer or co-workers is a personal choice depending on your unique work situation, but some feel it comes in handy if you require frequent breaks or other accommodations. Remember your co-workers will likely not realize you have an ostomy unless you tell them. With some preparation you’ll soon be confident in the workplace, and for many, feeling in better health than before surgery.

Here are a few tips from the UOAA Facebook community and Advocacy Network.

  1. Be Prepared:  In the case of a possible leak have a complete change of your ostomy supplies as well as a change of clothes you can bring to the bathroom. “Pack in a backpack, zippered tote, or small duffle bag that you can store in your desk drawer or locker” –Jane Ashley-publishing/author
  2. Know Your Rights: You have legal rights under the American Disabilities Act prohibiting employment-based discrimination. Workplace complaints to UOAA are rare but it can still occur. “My coworkers all knew, especially of the trials and tribulations pre-op. But still, there was hostility and harassment at times.” Jacque- Retired Government.
  3. Dispose/Empty Your Pouch Properly: Investigate the best restroom/changing facilities to empty or change your pouch. Consider the use of pouch or ostomy type deodorants. “My purse contains a 1-ounce bottle of Poo-Pourri, a Tide pen, a lubricating deodorant sachet, and baby wipes.” Margie, Academia.
  4. Find the Best Clothing for Your Job: Consider loose clothing if sitting for long hours or a stoma belt if you have an active job with lots of bending. A skin barrier may be helpful if you perspire on the job. “I wear a hernia belt”- Megan-Nursing
  5. Don’t Stress Stoma Noise: If your stoma decides to speak up at the next meeting relax, you may be the only one who notices “All bodies make sounds” Penny- Construction
  6. Hydrate: “Stay on top of your fluid intake. Don’t get distracted and have it result in an ER visit.” Heather Brigstock-Nursing
  7. Find Support: Know that you are not alone. UOAA has about 300 affiliated support groups around the United States that offeradvice, information and support.

Wish some preparation and patience you’ll soon be confident in the workplace, and for many, feeling in better health than before surgery.