The speaker at our next meeting at Longmont United Hospital will feature our own Debra Noel. Debbie spent her career in non-profit social services work for people struggling with life issues as well as children and adults with disabilities and the elderly. Now in her 60s, she is able to enjoy retirement and her art work. Living more than two decades with paralysis from an accidental gunshot, Debbie understands body pain. She has a colostomy and like everything else in life, it doesn’t stop her from doing those things she enjoys. Come hear her dramatic story.
There was a recent post on the OstomyConnection page of Facebook by Amber Wallace. In it, she talks about her tip for keeping her pouch dry in the shower. I can relate! She uses the same Hollister pouch that I use, and I cringe at getting it wet (I find the Coloplast and Convatec pouches dry much more quickly, and the Coloplast are the best). I’ve not tried her technique, but it involves using the standard disposable bags that come in our pouch orders, and taping them around the pouch to keep it dry. If I’m in a rush, I just put on a new bag and dry the wafer with my hair dryer. But I confess to extra showers sometimes before going out in the evening, and this might be a good tip to try.
You’ve had your ostomy now for years. You’ve figured out how to change your wafer and seldom have any leaks. Some of you are grateful that you now have the life that you weren’t able to enjoy for years. But there are still things that bother you about having an ostomy.
Laura Cox, the Ostomy Lifestyle Specialist at Shield Healthcare, did a video on this topic earlier this year, “Things That Still Bother Me Since Getting Ostomy Surgery – And How I Resolve Them“. She covers things like leaks, explaining dietary restrictions to others, and the concept of “you don’t look sick”. The “you don’t look sick” is the hardest one for me. In spite of feeling really good and healthy right now, I just can’t forget how sick I was. I had ulcerative colitis, and still have memories of hours on the toilet and the life events that I had to cancel just because I was unable to function. Don’t get me wrong, I’m happy now that I don’t look sick! But I heard this phrase more than once, or it’s companion phrase “you look really good”, when I was truly unable to make it through a day. Those comments try to take away someone’s personal experience, so try to avoid them when possible.
Don’t Forget Lunch!
Our December meeting will be at La Madeleine, 1236 S Hover Rd, Longmont, CO 80501, in the Village at the Peaks shopping district. December 7 at 11:30 am. Save the Date!
Nobody wants a blockage. They can be due to strictures, both in the small bowel or ureter, but are most common from food. A good rule of thumb is to follow the UOAA Diet and Nutrition Guide, and slowly introduce new foods. Who can tolerate what varies from person to person. I find I can’t eat more than a couple of bites of romaine lettuce without pain, but others can eat vegetables freely. The UOAA has a great Blockage Card. If you find yourself experiencing pain or any of the symptoms on that card, try some of the at-home techniques. But don’t hesitate to go to the ER — blockages can be dangerous and should not be ignored. Take a copy of the Blockage Card with you, because many ER doctors and technicians have never seen an ostomy, and this card gives great guidance for professionals. I keep a copy of this card on the home screen of my computer so my family can get to it, too!
Supplies for Puerto Rico
Martha Velez de Nieves is the coordinator for the Puerto Rico Ostomy Assoc. This is Martha’s personal address, and she states Ostomates there are in need of supplies. Mail is still slow, but getting through via USPS. Please contribute if you think you can help:
Martha Velez de Nieves
13 Palacios del Escorial, Apt 1371
Carolina, Puerto Rico 00987-6039
December Meeting and Gathering!
For December let’s do lunch! A private room has been reserved at La Madeleine, 1236 S Hover Rd, Longmont, CO 80501, in the Village at the Peaks shopping district. Date is December 7 at 11:30 am. Hope you can make it!
Had a great event at the Denver Crohns and Colitis Educational Symposium, last Saturday. We were so happy to meet and answer questions for current and potential ostomates. This was a unique forum for those with Crohns and Colitis to meet with members of the UOAA, and we appreciate the opportunity to attend!
It was such a great day last Saturday at the Take Steps for Crohns and Colitis in Ft Collins. Hosted by the Rocky Mountain Chapter of the Crohns and Colitis Foundation, there were over 120 walkers raising money for IBD research. We had a table promoting the Boulder County Ostomy Support Group, and were happy to share information for those with Crohns or Colitis considering an ostomy. Thanks, too, to Lois Fink, who helped at the table, sharing her story. There was great music, catered food from Texas Road House, and lots of positive energy for those suffering from Crohns and Colitis!
Our next meeting will be on October 5th at 1:00 pm. Our guest speaker will be Lois Fink, author of the book “Courage Takes Guts“. Ms. Fink wrote “Courage Takes Guts” as a way to share her battle with Crohn’s disease, and illustrate how full and active her life is as a result of ostomy surgery. This humorous book is for patients, family members, friends, caregivers, as well as gastroenterologists, colorectal surgeons, and certified wound ostomy continence nurses. Her book shares the life lessons she learned after losing her colon, and how Crohn’s disease and ostomy surgery offered her opportunities for personal growth when she chose to change how she viewed her situation.
We look forward to welcoming Ms. Fink and will have some free copies of her book available.
I attended the UOAA National Conference last week and got some great new information. I’ll be sharing it for weeks. If you get the chance to go to the next one in 2019 in Philadelphia (they only occur every two years) I recommend you start planning now.
One of the recurring sessions is the Barrier Cooking Show hosted by Hollister. It’s a hands-on lab where you actually get to make a wafer! The chemist that taught the class had a couple of really good wafer tips that I hadn’t thought of:
–Before putting your wafer on, gently heat it first. He recommended simply placing the wafer under your armpit while prepping your skin. The ingredients in the wafers become much more sticky when warm, and you’ll find adhesion is much improved if you warm it first. He said you could briefly warm it with a hair dryer (not too long!), but don’t ever put it in the microwave. It will quickly explode!
–The other tip was caution if your bathroom tends to steam up a lot when you take a shower. If you have your supplies ready and waiting, the steam can seriously effect your wafer adhesion. He recommended actually keeping your wafer in another room, or an area where steam won’t compromise it.
I’m now paying attention to both of these and can say I see a definite improvement in immediate adhesion after heating my wafer under my armpit before putting it on. My next post will talk about the amazing Stoma Clinic hosted by the conference. Experienced WOCNs evaluating your stoma with advice and suggestions for a multiple of appliances. So much to learn!
Are you going to this year’s UOAA conference? The United Ostomy Association of America has a national conference every two years, and this year it takes place in Irvine, California. I’m going, and here are some of the topics I’m most interested in:
–Fecal Microbiota Transplant (FMT) – As a patient with Ulcerative Colitis I’m quite interested in research for FMT for those with Crohns and UC.
–Chemo and Radiation effects on an ostomy – Because I was part of the UC community for so long, it was eye-opening to see that most ostomies are due to other factors.
–Gynecological Issues for Women – I’m not sure I’ll have time for this session, but I’d like to hear a discussion about the unspoken complications and challenges that women face after ostomy surgery.
I assist the WOCN team at our local hospital, and I’m active with our local ostomy support group. I’ll be attending the UOAA Affiliated Support Group sessions to learn how to grow our group and understand how we can best use the services of the UOAA. Also, I’ve learned that I can actually get certified for doing what I’m doing, through the UOAA Visitor Program. I’m quite excited about this and can’t wait to take the test!
The conference has the usual exhibitors (I’m looking for lots of samples and new product info), and there is a daily WOCN clinic. At the Clinic you can schedule time with a WOCN nurse to evaluate your stoma and give feedback. I’m definitely doing this, as my stoma has retracted considerably since my surgery and I fear more surgery is in my future.
I plan to share lots of information!