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My Colostomy Saved My Life

Without a colostomy, I would likely not be here to write this blog. It saved my life. I am a quadriplegic as a result of a spinal cord injury (SCI) that occurred when I was 16. That was 36 years ago. I am paralyzed from the neck down and SCI impacts the operation of the bowels. In simple terms, to move your bowels you have to use some type of stimulation because the regular nervous system is unable to work on its own.

For many years, I successfully used suppositories for my bowel routine. When they stopped working, I switched to a different type of suppository and began to use numerous stool softeners. Approximately three years ago, my system began to limp along. I couldn’t fully evacuate my bowels and I was losing my appetite.

And then one day my bowels stopped working. At that point I was using multiple enemas without success. I went to the hospital. Unfortunately, I had a history of bowel obstruction surgeries, so no doctor was willing to do a colostomy because of the risk of perforation of my bowels. As an attorney with the Federal government, I was unable to keep up with my job and had to retire on disability. I was bloated as if I was expecting triplets and felt horrible and weak. My quality of life was significantly impacted and my husband was cooking as much soup as he could, and that didn’t even help when it came to my appetite and nutrition. I tried acupuncture, stomach massage, herbal tea, you name it. I was depressed, exhausted, and scared.

My gastroenterologist suggested that I go to Mayo Clinic as a last resort. I traveled from Virginia to Minnesota with low expectations, hoping that the medical team could even just figure out something to help me go to the bathroom.

To my great surprise, Mayo Clinic agreed to do the colostomy. The surgery took place in late June, 2018, and since then I have regained my quality of life and feel like a new person. I have never been healthier. I have energy for work (my husband and I started a business, Happy on Wheels, LLC), social life, and exercise.

Many factors contributed to getting it right. First, colostomy nurses are my heroes. They marked the site for the surgery, fitted me with appliances to start off with, and explained how to apply everything. They trained my attendant on how to attach the flange and we examined the different types of pouches. I left with an initial supply, but they were very clear that it would be trial and error.

The ostomy nurses were spot on about flexibility. Every person is different and trying out different appliances is a necessity. There have been accidents and leaks and I have made adjustments. I have high output and cannot change my bag independently, so I devised a way to use an irrigation bag as a regular colostomy bag during the day, and I use a smaller pouch at night when I’m in bed. Additionally, figuring out the amount of supplies needed is unknown in the beginning. For the first couple of months we were frantically running around because I would run out of flanges and pouches. After about three months, I knew what I needed was able to establish a consistent ordering system.

My advice to anyone considering a colostomy is that the surgery is not the hard part. It is the period afterward when flexibility is needed. It is a learning process and each person is different. No pun intended, but there is no one size fits all.

Don’t get frustrated if your particular appliance doesn’t work. The companies that sell supplies, such as Hollister, Coloplast and Convatec, have very helpful representatives and are willing to send free supplies to try. I encourage new ostomates to also reach out to others who can provide tips on what has and has not worked for them. I have a good friend with a colostomy and her advice has been very helpful. The bottom line is that if you are open-minded and don’t get frustrated, within six months you should have things settled and develop a routine.

Getting a colostomy was a miracle for me. I intend to advise all quadriplegics that after a certain number of years they should talk to their doctor about proactively getting a colostomy before their bowels stop working. I am a happy bag lady!

By UOAA Advocacy Manager Jeanine Gleba

Under UOAA’s national advocacy program we develop position papers on topics concerning people living with an ostomy or continent diversion. This official “position” is formally approved by the Board of Directors. These important documents might give background information, description of the impact on our community, and in some cases, advocate for change. 

These papers also provide a perspective into UOAA’s views, and can be used by you, to strengthen your own self-advocacy efforts. Individuals and UOAA Affiliated Support Groups can use them when talking to key decision-makers such as your elected officials, the media, or anyone who wants to know more about where UOAA stands on the topic/issue. 

UOAA currently has position statements available on the following advocacy efforts:

 

Disability Integration Act (DIA) (S117/HR555)This civil rights bipartisan legislation would require insurance providers to cover community-based health care services for people with disabilities as an alternative to institutionalization. The DIA would ensure that people could not be prematurely forced into nursing facilities because they couldn’t get assistance with health-related tasks such as maintenance and use of a stable ostomy. This is a good thing and we support it! UOAA’s position is here

Medicare’s Competitive Bidding Program – UOAA is actively working to maintain the current Medicare reimbursement system for ostomy and urological products. Currently ostomy and urological supplies are not included in the Competitive Bidding Program and we want to keep it that way. UOAA’s full opposition is here

Opioid Crisis – UOAA wants to ensure that any plan, especially legislatively or regulatorily, to address the opioid crisis considers the needs of those who require the use of opioids for non-pain treatments of medical conditions such as high output stomas for some people living with an ostomy or fecal continent diversion. UOAA’s position is here

Removing Barriers to Colorectal Cancer Screening Act (S668/HR1570) – This act would eliminate cost-sharing for initial and follow-up colorectal cancer screening tests such as removal of polyps for Medicare beneficiaries. Cost-savings for senior citizens and move lives saved is a no-brainer. UOAA’s position is here.

All of our position statements are available for download and printing on our advocacy webpage.  We encourage our community to frequently check this page as efforts get updated or closed, and new issues may arise.

There are many things to think about when preparing for a trip. Whether traveling a few hours from home, or to another country, for a dream vacation, or for business, the more prepared you are, the more at ease you will feel. Luckily, there are resources available to assist you in planning for all sorts of travel destinations. Coloplast® Care offers comprehensive support for all areas of life, including tips on packing and planning for your trip. Making sure you have extra supplies, and the right contacts for any additional supplies you might need in case of an emergency at your destination will keep your mind calm and clear and allow for you to spend time enjoying your trip instead of worrying about the ‘what-ifs’ often associated with having an ostomy.

Traveling with your service animal can require a little extra preparation. If you are flying to your destination, be sure to save yourself time and hassle by calling the airline to understand their unique regulations and specifications, and to give them any additional information they may need about your unique situation. Here is a helpful checklist to ensure you have all the documentation you might need:

  • Certificate of your service animal
  • Current health records (including up to date vaccinations)
  • A note from your healthcare professional
  • A note from your veterinary clinic
  • A personal travel certificate which explains your condition, the medical supplies you are carrying and why you might need support and privacy as you go through security

Note that it can be extra helpful to have these documents already translated into the language of the country you will be visiting.

Depending on your destination, you might also want to look into other requirements, for example, if you are flying to an island such as Hawaii, there may be a quarantine period for your animal. If your travel plans are taking you to a country in Europe, making sure you have an ISO microchip is important as not all microchips can be read in different countries.

Leading up to the hours before your trip, you may want to limit food and water if your animal will be on a train or plane for several hours. Be sure to carry water for them to have as soon as you land. If your travels are by car, plan a route with easy places to stop to allow your animal to relieve themselves and get some exercise.

In the Airport

Arrive earlier than normal to the airport to ensure you have plenty of time to go through security and find your gate. Make sure the security personnel are aware that your animal is a service animal, this should help to speed up your security check and move you through faster. You should not have to be separated from your service animal at any time, it is your right and privilege to have them accompany you at all times.

Most airlines require a 48-hour advance notice of service animals on flights, be sure to contact your airline to make them aware that you will be traveling with your service animal, and ask any questions you might have about the day of travel.

Hotel Stays

Similar to your airline travel, you may want to contact your hotel before your stay. Let them know you will be traveling with your service animal and ask them to inform their staff. As a service animal is not a pet, they cannot be refused in any public space. As well, a hotel cannot charge a fee for having a service animal stay in a room unless they cause damage. Be sure to clean up after your dog as you would at home, and never leave your service animal in the hotel room alone. Even the best-trained ones can become anxious or stressed if left unattended in a new atmosphere.

Lastly, once you reach your destination, should you have any questions or need any medical supplies or advice, Coloplast has put together a downloadable list of all of their local offices around the world.  The more prepared you are before you travel, the more you will enjoy the trip and be at ease. Happy Travels!

For more information, visit www.coloplast.us.

 

Editor’s note: This educational article is from one of our digital sponsors, Coloplast. 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.

Support the Disability Integration Act

By Jeanine Gleba UOAA Advocacy Manager

    Sue Mueller, BSN, CWOCN

Does an ostomy qualify as a disability? This is a question that UOAA receives on occasion. You are living with an ostomy, you feel pride that you are independent with your ostomy care, that you are able to problem solve the glitches that arise, you have resumed your former activities and tried a few new ones…life is good.  So it’s confusing when you hear someone tell you that you qualify under the Americans with Disabilities Act (ADA) as having a disability. Perhaps you can walk and talk and see and hear and are independent with your care. You may envision a disabled person as someone who needs help with care, uses a wheelchair or a walker; someone obviously disabled. Well, elimination of waste is a major body function and your elimination of waste has changed; in fact you need to wear a prosthetic device (ostomy appliance) to manage this change. You have a record of an impairment of a major body function, therefore you are protected by the provisions of the ADA. You do not have a visible disability, and not all disabilities are visible. (Please be aware that the term disabled means different things in different systems i.e. in Social Security disabled means unable to work.)

Fast forward 15-20-30 years, you have aged and might be experiencing any number of the challenges that aging brings….combine that with ostomy care and you may find yourself in a whole new world trying to get your needs met and survive in the environment of your choice. That’s when you will be especially glad that you are protected by civil and disability rights legislation such as the Rehabilitation Act of 1973, the ADA, Olmstead vs LS, case law and provisions of the Affordable Care Act. Basically, what these legal documents establish is the expectation that people living with disabilities have the same opportunities as people without disabilities; to live and work and participate in their communities, that the same services and supports that are provided in institutions are provided in the community. Many improvements have been accomplished but the institutional bias in service provision has not been eliminated and the services needed to support non-institutional living have not been created.  The Disability Integration Act (DIA) has been proposed in both the US House and Senate as a measure to end institutional bias and promote services in the community and extend the principles established in previous legislation.

The act is bipartisan legislation that ensures people with disabilities have a federally protected right to live and receive services in their own homes or in the setting of their choosing. The DIA further secures our Constitutionally protected right to liberty by preventing disabled people from being forced into costly institutional settings by unnecessary government regulations.

In addition, the DIA assures the full integration of disabled people in the community by ensuring that people with an ostomy and other conditions are able to exercise real choice in where they wish to receive attendant services, assistance with health-related tasks such as “maintenance and use of a stable ostomy” or other services that enable a person with a disability to live in the community such as in an assisted living facility and lead an independent life.

Our patient bill of rights advocacy efforts have illustrated the gap in expectations and the reality of care.  An issue facing the ostomy community especially as they age is that most assisted living facilities (ALF) across our country will not admit someone with an ostomy or in the rare cases where they do, the ALF no longer needs to retain them once the individual can no longer perform self-care with emptying or changing their pouch. Once the door to assisted living is closed the only option is placement in a long-term care facility/nursing home. Assisted Living homes and nursing homes are radically different environments.

We believe that emptying a pouch is a simple activity of daily living that should fall under toileting assistance/hygiene.  When the issues with care at assisted living facilities result in an ostomate requiring long term care in an institution, when that is not their choice it is a civil rights issue and is exactly what the DIA is trying to address. UOAA supports and advocates for this landmark legislation and encourages the ostomy community to take action here to help us garner legislator support and pass this in 2019.

By R.S. Elvey

Caring for an ostomy can often be a frustrating and challenging experience at any age. But combine advanced age and dementia and it becomes even more of a challenge for caregivers and loved ones. According to the Population Reference Bureau, the number of Americans 65 and older will gradually increase from 15% of our population to 24% by 2050. With this growth has come a rise in existing and new ostomies combined with Alzheimer’s or other dementias. The Alzheimer’s Association of America reports in their 2017 Alzheimer’s Disease Facts and Figures report, “Of the estimated 5.5 million Americans with Alzheimer’s dementia in 2017, 5.3 million are age 65 and older.” The association predicts a half a million new cases of Alzheimer’s dementia will develop annually.

This explosive growth in new cases of dementia is putting an enormous strain on family caregivers. The Family Caregiver Alliance estimates, “44 million Americans age 18 and older provide unpaid assistance and support to older people and adults with disabilities who live in the community.” These caregivers often have little or no preparation or support in providing care for people with disabilities such as stoma care. They become frustrated and worn out. In an online forum, an anonymous writer expressed her frustration about caring for her mother’s stoma as follows, “I am TIRED of it. I need someone to take over dealing with an ostomy and ordering the correct supplies for her, etc… And I am just going to make whatever decisions seem right regarding her bladder care, as I find out more info. I really wanted to yell at her tonight and that makes me feel like a terrible, awful person. I didn’t, but I did get a little firm.”

Studies have shown that family caregivers who provide care to family members with chronic and disabling conditions are also putting themselves at risk of developing emotional and physical health problems. When seeking stoma care information, caregivers often participate in online chat rooms and forums for anecdotal advice. Additionally, visiting nurses with wound and ostomy training often make home visits and teach ostomy care. But when they leave the caregiver is often faced with ever-changing challenges as their loved one’s dementia worsens. Most often they face the challenge of not knowing when a pouch needs to be emptied, appliances being ripped off by their loved one or attempts to empty and change the appliance that miss the mark and require massive cleanups.

Realizing the complexity of stoma care and dementia and the pressure it causes to caregivers, the Colostomy Association of the United Kingdom and the Dementia Association of the United Kingdom combined to issue a twelve-page downloadable leaflet at www.dementiauk.org entitled, “Caring for a person with a stoma and dementia”. They readily recognize that not all persons with dementia will profit from learning to care for their stoma. But where it is possible a person should be encouraged to participate in their own stoma maintenance.

The leaflet’s content is based on input from health professionals who care for ostomates with dementia and a stoma. A few of the hints and tips included in the publication are:

  • “People with dementia who are actively involved in changing their bags should be encouraged to wear gloves. This reduces the risk of infection, feces under the nails and fecal spreading.”
  • “Some people with dementia who require their bag to be changed for them might resist. In these cases distraction could help. For instance, encouraging the person to clean their teeth or brush their hair during the process might be helpful. Standing the person in front of a mirror so they can focus on the task they are performing and not the bag change can help.”
  • “Bag choice is important. One-piece bags with pre-cut aperture have the advantage of being uncomplicated for both person and caregiver. Two-piece bags, where the flange can remain in situ for up to three days, helps protect the skin where frequent changes are necessary.”

Individual and professional caregivers also provide additional advice based on their experiences. Many staff who work in nursing homes put a plastic bag over the pouch so that in case of any leakage, there won’t be a much larger incident. Many persons with Alzheimer’s or other dementias either pick or rip off their pouches. To prevent this from happening, many caregivers dress their loved ones in special clothing that has no openings in the front but still gives the appearance of normal clothing. One source for this type of clothing is Buck and Buck. Their online catalogue features adaptive clothing by gender and condition. Lastly, in this smartphone age there is even an app that might help. 11 Health has created the Alfred Alert Sensor. The sensor is applied to the pouch at a point where it should be emptied. When that point is reached it connects by Bluetooth wireless technology to the Alfred Alert app on your smartphone to tell you it is time to empty. The app can also capture patient output volume over a period of time. The data is stored in a HIPAA compliant cloud server where it can be shared by medical professionals and family members.

In the final analysis, caring for a loved one with dementia is a joint effort between the person with dementia, their loved ones, their medical consultants and other professional caregivers.

Editor’s note: UOAA Affiliated Support Groups all around the United States are open to ostomy and continent diversion patients, caregivers, family, and friends.