June Newsletter 2018

Charlotte County Ostomy Support Group

Website www.ccosg.org

A 501 (C) (3) nonprofit organization, (tax deductible donations)

Officers

President: Jerry Downs…….
629-7568…………..email:fldowns@embarqmail.com

Vice Pres…Bonnie Coker 423-8542

Directors
Janice Creutzman;941-639-2370

Secretary: Lovelle Meester….637-8167 David
Sandora…..941.828-1076

Treasurer: Lorelie Gadbout 603-474-9063 Joan
Huber………941.575-8708
Committees

Webmaster: Bonnie Coker

Newsletter: Gloria Patmore & Karen Chalfant

Programs & Education: Jerry Downs, Penny Maki, RNET,CWS, 205-2620
Gloria Patmore, 627-9077

Nancy Frank RN,BSN,CWOCN, 629-5118,

Marie Michel RN,CWCA, CHRN,OMS, 941-626-2607

Visitation: Nancy Frank BSN,CWOCN

Library: Karen Chalfant

Professional Advisors:

John P. Rioux, MD, F.A.C.S. Nancy Frank, RN,BSN,CWOCN;

Marie Michel,RN,CWCA,CHRN,OMS

Charlotte County Ostomy Support Group Summer newsletter

By Gloria Patmore, RNET(Retired?)

Twenty Three people attended our last meeting of the season, including 3 new ones. It was election day and elected were   President Jerry Downs, Vice President Bonnie Coker, Treasurer  Lorelei Gadbout, and secretary Lovelle Meester.

 Bonnie Coker who has her business of C&SPouch Covers, was our speaker.

womens-set-white-backgroundPouch covers are underwear for your pouch, providing comfort and security. There are pouch covers designed for all size pouches and brands of pouches. When ordering covers supply her with the pouch number you are using. A display of covers was presented and included prints, a men’s collection, satin collection, children’s collection, some with funny quotes and designs. A quick dry collection in terry cloth dries your pouch after showering or swimming. A lingerie collection is soft and sexy. Urinary bag
covers have a bottom opening for easy emptying and drainage. Bonnie’s business is now worldwide.  To order by phone call 877-754-9915. Email: Customerservice@cspouchcovers.com  and to view products
www.cspouchcovers.com

.

Our new treasurer, Lorelie Gadbout , has a very interesting background. She is an RN, earning it through the years with perseverance and hard work, starting as an aide, then an LPN, and then an RN. She has had not just her own health problems with bladder cancer requiring chemo therapy and a long trail until she finally had her
bladder removed and an ileal conduit done. In the mean time she lost a daughter, and her husband developed prostate cancer. Trouble just seemed to
plague this beautiful couple. Lorelie has a wonderful ability to write, and included the details of her bout with the bladder cancer, much I will quote.

“I was born and raised in New Hampshire. I have lived in the White mountains, the lake region, and the Seacoast of New Hampshire. I was a paper girl, worked at a motel as a chambermaid and behind the counter at Woolworth’s to earn money to go to nursing school. I became an LPN and worked at our local hospital. After I married my husband Bob and I moved to the lakes region and we had two daughters. We then moved to the Seacoast where my husband worked for Seabrook Station, a nuclear power plant, and I went to work in a nursing home. I went back to school and earned my RN, and then worked for a Nursing Home/Rehab/skilled care and Alzheimer’s care facility as a floating nurse.

“Bob and I retired in 2004 and did a lot of traveling across our country and Canada on a motorcycle and later in a motor home with our motorcycle in tow. We also have been on about 20 cruises and plan on going on an ocean cruise to Barcelona Spain, ending up in Rome. We moved to Florida in 2014. Bob’s brother who lived in North Port wanted us to move down. It took us a few years to decide and we went house hunting and found our home here. Bob had to have a workshop so we found a large piece of property and had it built.”

In 2007 Lorelie had occasional symptoms that were similar to a urinary infection, but tests came back negative. They were traveling on their motorcycle in the national parks.   When Lorelie passed blood clots her doctor referred her to a urologist who did a scope and found and diagnosed bladder cancer. There were two growths that were found and the cancer had spread to the bladder muscle.

She was sent to Boston for a second opinion. This doctor agreed with her local urologist, so Lorelie had treatment in her local hospital with her local urologist. She had confidence in his ability. The plan was 3 weeks of chemotherapy, and then a week off, for three to four months with a month off, and then to have surgery to remove the bladder.

“In January of 2009 our daughter in Arizona was diagnosed with Progressive Bulbar Palsy and I had gone to be with her from December 19th 2008 until the end of January because she was in the hospital after being unable to swallow or bring up a cookie. The doctor mentioned ALS, but she needed more tests. A neurologist diagnosed her with ALS. She passed away January 8, 2010. “I was able to go to her funeral services in Arizona, but I also was prepared for surgery on my return.”

One good report   when Lorelie had her bladder removed there was no cancer in her lymph nodes or elsewhere.
“The staff nurses weren’t very good at applying pouches, but the ostomy  nurse arrived and set me up with the right equipment and taught both me and  my husband how to do the pouching. Lorelie says her husband learned too and has been a big help.

”Sometimes I get into a situation where I need an extra set of hands, and he is there for me.”
 Visiting nurses did come to her house after discharge for a length of time.  When an infection occurred she was put on an antibiotic that didn’t work,  but a culture and sensitivity was done and the right medication cleared up the infection. “When my husband suggested we go on a motorcycle ride I wasn’t quite sure about it, but went. We stopped at a Bar-B-Q place and I had a coke and a  pulled pork sandwich with beans and sweet potato. After this I started feeling more myself!” ‘In May of that same year my husband had trouble with an overactive bladder. He was diagnosed with prostate cancer, and had successful surgical removal of the cancer. “It was a very trying two years
, but we made it through and did more traveling after that. We have kept very busy. My husband is a workaholic and never stops. When he gets an idea in his head he executes a plan and then starts putting his plan into action. This is how he builds furniture, does yard upgrades and renovations, etc. I help him a lot whenever he needs me and if I am able to. “I enjoy traveling, gardening, reading, flea markets, puzzles, putting together albums, shopping, and helping my husband with his many projects  . I feel blessed to still be able to do the things I enjoy.” Lorelie has a urostomy. When her bladder was removed the surgeon needed to  provide for an avenue for the urine to be excreted. An ileal conduit is often made for the patient by using a portion of the colon, the ileum, to construct the outlet for the urine. This portion of the ileum is dissected from the colon keeping its blood supply, and used as a conduit to take the urine from the kidneys to the outside of the body creating a stoma to do this. This is an ileal conduit and several of our members do have this. It is indeed a urostomy.

Welcome our new Treasurer.

 

When you have a urostomy you are very aware you want to keep free of infections so it is important to keep your pouch empty at night. Hooking up to straight drainage is recommended. A night drainage bag or bottle can be threaded through the leg of pajamas and the bag or bottle placed at the foot of the bed. Check with your doctor about keeping your urine on the acid PH by taking vitamin C tablets. Contrary to this is the fact that orange juice when taken in excess will swing the PH in the wrong direction. Another fact you need to know. We have several men and women in our group with urostomies. If your drainage is fecal it is not a urostomy. There have been urostomates that have called their stoma an ileostomy. If urine drains, it is a urostomy. Most companies have urinary pouches that are non refluxing. You don’t want
the urine pooling around your stoma. Keeping the flow is important. Drinking lots of fluid helps of course.uirnostomy pouch

Some of you have stepped up to help our group and are faithful attendees. Ihave been helping the group now for over thirty years and feel blessed that I can still do this. I had my 90th birthday in December, and Iam grateful to God for the ability he gives me to continue to help. I know it is a blessing to you, but it also is a blessing for me as well.

Jerry Downs, our President , is in there with his wonderful wife Linda, filling many needs. Jerry has had many surgeries, radiation, and chemo to keep him functioning. Jerry’s story was written up in the “Phoenix” national magazine. He is a pilot with seven instructor licenses for aircraft, and is often called away to pilot the air ambulance. It is hard for him to say no
when he sees a need that has no one else to do the job.

 

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He also tries hard to find the ostomy visitor when there is a person in need. He also goes to our ostomy closet in the Wound Care Center of FawcettHospital where we have stored donated supplies. He is, and has been, a faithful president and we are blessed that he has consented to continue inthe coming year. Speaking of the “Phoenix” magazine. We have several on hand for you to borrow, if you haven’t subscribed. It is a wonderful
magazine!

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3 Responses

  1. gloria patmore says:

    I WRITE IT AND YOU POLISH IT! Thank you ladies.

  2. Tony Ferlazzo says:

    Good letter….This keeps me informed…I look forward to it…Hope to be at the next meeting
    ( as usual)…Regards Tony Ferlazzo

  3. Dennis Rose says:

    My wife had 9” of her colon removed in March and we dealt with her ostomy bag for 5 months in September she had a successful reversal and we now have ostomy products that we would like to donate but don’t know how to do this. Can you help us?
    Dennis Rose. seafever3 @cs.com

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