Charlotte County Ostomy Support Group Newsletter for January 9, 2023
Officers:
President: Jerry Downs 941-629-7568 fldowns@embarqmail.com
Vice President: Ken Aukett 609-315-8115
Secretary: Lovelle Meester 612-240-2175
Treasurer: Lorelie Godbout 603-474-9063
Directors: Janice Creutzmann 910-382-2509
David Sandora 941-828-1076
Committees:
Newsletter: Lorelie Godbout
Programs & Education: Jerry Downs,
Gloria Patmore, RNET (retired) 941-627-3077
Nancy Frank, RN, BSN, CWOCN 941-629-5118
Marie Michel, RN, CWCA, CHRN, OMS 941-626-2607
Visitation: Nancy Frank, RN, BSN, CWOCN
Library: Lorelie Godbout, RN (retired)
Professional Advisors:
John P. Rioux, MD, F.A.C.S.
Nancy Frank, RN, BSN, CWOCN
Marie Michel, RN, CWCA, CHRN, OM
A 501 (C) (3) nonprofit organization, (tax-deductible donations) Website www.ccosg.org
HAPPY NEW YEAR! Happy 2024!
Another year has come and gone and the older I get the faster time seems to go by. On December 12, 2023, we had our Christmas party at the Golden Corral. Fourteen people attended. Our speaker Jessica was unable to make the meeting because she became sick and some people called Linda and Jerry and said they couldn’t make it, because they were sick. We ate and talked with others and then we had our gift exchange and I think everyone had a good time. Jerry recited (Sung to Jingle Bell tune) Jingle Bells Florida:
“Dashing through the sand, in a rented mini-van. Driving by the bay, laughing all the way. Tourists drive too slow, everywhere you go. Oh, what fun it is to live in sunny F-L-A. Jingle bells, coconut shells, and dolphins in the bay. Oh, what fun it is to live in sunny F-L-A. Orange juice stands, Mickey Mouse land, gators in your way. Oh, what fun it is to live in sunny F-L-A. Crowded shopping malls, lotto and bingo halls. Sunshine that’s too hot, a football team that’s not. When Santa hits the shores, he finds jellyfish galore. Oh, what fun it is to live in sunny F-L-A. ” It is a fun lyric to sing with friends.
Our next meeting will be on Tuesday
January 9, 2024, at 2:00 PM
at Charlotte Community Foundation
227 Sullivan St
Punta Gorda, FL 941-637-0077
I found the following articles in UOAA E-Mails I receive.
Ask Dr. Beck
Dr. Beck is board-certified in general and colon and rectal surgery and is a Clinical Professor of Surgery at Vanderbilt. Dr. Beck conducts research into colorectal diseases, has authored and edited nine medical textbooks, and has written over 350 scientific publications. He was the President of the American Society of Colon and Rectal Surgeons (ASCRS) from 2010-2011. He is a nationally recognized expert in inflammatory bowel disease, anal, rectal, and colon cancer, stomas, adhesions, bowel preparation, sphincter-saving surgery for cancer, laparoscopic surgery, and postoperative pain management.
Rectum Stump Removal
I have had my ostomy for ten years and have no desire to have it reversed as it has given me a high quality of life. My concern is my rectal stump although I have no real problems with it. The doctor told me it had narrowed and atrophied when I had my last visit two years ago. I hear having the entire rectum and anus removed is quite painful and involves a long recovery. Are there any other options?
W.P.
It is important that your residual rectum get checked once or twice a year to make sure cancers don’t develop. If your anus or rectum scars, it may not be possible to surveil it. As a general rule, if you are not using your rectum and/or can’t surveil it we recommend removing it. Depending on how your original surgery was performed, removing the rectum may be a medium or large operation. With minimally invasive techniques and modern postoperative care, the operation is not too painful and the recovery is usually not long. I would discuss your options with an experienced colorectal surgeon.
Finding a Doctor with Experience Treating Short Bowel Syndrome (SBS) Can Be Challenging
Short bowel syndrome (SBS) is a rare condition and as a result, the number of healthcare providers experienced in treating the disease is limited. It’s important to advocate for oneself and find a provider who understands what you are going through. Healthcare providers can include a range of doctors, clinicians, and specialists.
So what resources are available to help you find an experienced healthcare provider? One resource tailored to providers experienced in treating short bowel syndrome is the SBS Healthcare Provider Locator. Patients and their caregivers have the option to enter search criteria such as zip code, mile radius, or state to generate search results. Any decisions related to contacting a healthcare provider identified in the search results is left to the patient or their caregiver.
SBS management may involve a multidisciplinary approach. The SBS Healthcare Provider Locator was developed to include a range of different providers, including gastroenterologists, surgeons, dietitians, and more.
Overall, finding a doctor with experience treating SBS can be challenging. By doing your research and utilizing available resources, you can prepare for your healthcare journey.
Start your search with the SBS Healthcare Provider Locator: www.SBSLocatorTool.com
Guide to Healthy Skin
Maintaining healthy skin is more than simply checking if you are applying and removing your ostomy pouching system correctly and with the right frequency. The length of time between changes will vary for each individual.
Using the following ‘Apply Remove Check’ process described here will help ensure you are in the right routine.
Apply
- Make sure the skin is clean and dry before applying.
- The barrier should fit snugly around your ostomy.
- Accessories, such as rings or a paste, can help you achieve a good seal around the stoma.
- Ensure that the barrier has made full contact with the skin by applying gentle pressure to the barrier during application – begin in the area closest to the stoma, and then move outwards towards the edges
Remove
- Protect the skin around your stoma by gently removing the ostomy barrier
- Pull down on the removal tab to loosen the barrier from the skin
- Gently push down on the skin as you pull down on the barrier going side to side to gently release the adhesive from the skin
- This is called the push-pull technique
Observe or Check
- Observe the skin underneath the barrier
- If necessary, use a mirror to check your skin
- Check the back of the barrier
- If you see one or more of the following signs, it may be because you need to change your barrier more often:
- Erosion of the barrier
- Leakage on the barrier or your skin
- Irritated, broken, or red skin
Experiencing skin irritation? If you see any changes in the appearance or color of the skin around your stoma (compared to the skin on the rest of your stomach), consider comparing photos or notes from your pouch changes.
Information from Coloplast Care is for educational purposes only. It is not intended to substitute for professional medical advice and should not be interpreted to contain treatment recommendations. You should rely on the healthcare professional who knows your individual history for personal medical advice and diagnosis.
Naming Our Stomas
by Ellyn Mantell, morethanmyostomy.com
When I was in high school, a close uncle had a double amputation of his legs. He suffered from a rare situation that caused him to have the “arteries of a 90-year-old man” despite the fact he was only in his 30s. His two young daughters were terrified of his new anatomy, as well as all of the changes in their lives that were necessary. The social worker from his rehabilitation center suggested having the girls name his stumps, giving them the ability to feel closer to their dad, hoping to ameliorate their fear. I do not remember both names, just Shapey, and remember wondering what was in Laurie’s and Shari’s minds as they chose that name. In fact, that time in my life was so impactful that I chose my first career, speech therapy, because of the time I spent visiting my uncle in rehab. I was incredibly impressed with the work I saw being done in physical, occupational and speech therapy, and knew that was my future.
All of these years later, I am in the position of recommending naming our stomas in order to become more comfortable with, and able to, embrace our new anatomy. In reality, according to the Food and Drug Administration, an ostomy is considered an amputation. That is because our stoma actually replaces the function of an organ that no longer functions, such as the colon or bladder.
As many of you know, I call my stoma Lily, since my mother was Lillian, and she gave me my first life Lily has given me my second life, and my gratitude is enormous. Each time I meet a new ostomate, I am very aware that they may have a while, perhaps a long while, to go before they feel gratitude. But eventually, I believe they will be grateful. Our stomas save our lives!
The first phone call or visit I have with new ostomates allows me to listen to what has brought them to this new anatomy. All of us have the same thing in common…we are survivors, having been through so much. Whether it is an intestinal blockage, cancer of the colon or bladder, an accident, a perforation, a disease process such as Ulcerative Colitis or Crohn’s Disease, or pathological dysmotility, the outcome is pretty much the same. There must be an adjustment period, and I try my best to support them in that process. The key, I believe, is to point out how strong and determined they are to have survived, and they will use that determination to find their best lives in the future.
I also recommend joining an ostomy support group, since there are so many questions they will have, and to make the United Ostomy Associations of America website part of their recovery. I am always amazed at the amount of information available for the patient and their caregiver.
Lastly, I want to remind all who are adjusting to a new situation to have grace with themselves. We are much stronger than we ever thought possible, but even the mightiest of warriors needs to take time to assess their goals and the path to achieve them. And that may include reaching out to another. Please let me know if you need my support, from one thriver to another!
