CORRECTION: We have learned that Jon Egan of ConvaTec will not be able to present at our May 3rd meeting (he has left the company). Instead, our own Charles Sloan, WOCN extraordinaire, has agreed to step in and answer all of our questions. He will present a slide show of what a wound ostomy nurse does in a day, and the services that they provide. Come prepared for an informative session and a unique opportunity to ask questions.
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For April, we will have a presentation from Stealth Belt V.P Collin Jarvis. At 21 Collin was a nationally ranked middle and long distance runner when he was diagnosed with Ulcerative Colitis in 2013, Stealth Belts fit snugly against the body in order to provide support, comfort, and protection for ostomy and urostomy appliances. They have belts for all kinds of activities, from sleeping to water sports. And they are a NASCAR sponsor with driver and ostomate Ray Ciccarelli!
Our speaker this month will be Roger Pomainville. Roger is a long-time resident of Longmont and an avid climber. After his diagnosis of UC in 1977, and ileostomy in 1980, he was told he could do anything in life. And he’s made that happen! Roger has climbed our own Longs Peak more than once, climbed to Base Camp at Mt Everest, and represented the Denver Metro Ostomy Group and our local CCFA on a climb to Mt Elbrus in Russia (elev 18,510 ft). He has a compelling presentation and, if time permits, can show how to change your ostomy pouch while roped to the side of a mountain! As always, time will be available to ask questions and share concerns. Hope you can make it!
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!
Blockages
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
c/o AOPR
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!
