Quick Resource Guide for New Ostomates
A link to download a PDF of this guide can be found at the end of this post
1. American Cancer Society: www.cancer.org; 1-800-227-2345
2. Crohn’s & Colitis Foundation of America: www.ccfa.org; 1-800-932-2423
3. Middlesex MD: www.middlesexmd.com; female sexual health website and store
4. United Ostomy Association of America: www.ostomy.org; 1-800-826-0826
5. Diet & Nutrition: https://www.ostomy.org/diet-nutrition/
6. Intimacy: https://www.ostomy.org/intimacy-after-ostomy-surgery/
7. WOCN Peristomal Skin Assessment Guide: https://psag-consumer.wocn.org/#use-guideline
8. Blogs:
• The Stolen Colon (www.stolencolon.com).
• Vegan Ostomy (www.veganostomy.ca).
• Uncover Ostomy (www.uncoverostomy.org).
9. YouTube (as recommended by our readers):
10. Facebook (there are a large number of self-help support groups. Make sure the groups are “private” if you don’t want your comments on posts to appear in your friends’ feeds.
11. Forums at United Ostomy Association of America www.uoaa.org/forum/index.php
12. Find a support group near you: www.ostomy.org/support-group-finder/
13. Online discussion boards: www.uoaa.org/forum/index.php
1. Hollister - www.hollister.com 1-800-323-4060(Secure Start program)
2. Convatec - www.convatec.com 1-800-422-8811 (ConvatecMe+ with telehealth option)
3. Coloplast - www.coloplast.com 1-800-533-0464 (Coloplast Care program with app option)
4. NuHope - www.Nu-Hope.com 1-800-899-5017
5. Marlen - www.marlenmfg.com 1-216-292-7060
6. CyMed Ostomy- www.cymedostomy.com 1-800-582-0707
Please contact the following companies.
1. Ostostore. www.Ostostore.com
2. Ostogroup: www.ostogroup.org ; 1-877-678-6690
3. Hollister Program:1-800-323-4060
4. Convatec Access Program: 1-800-422-8811
5. Coloplast Patient Assistance Program: 1-877-781-2656
6. Kindred Box: www.kindredbox.org
7. The Pouch Place: www.pouchplace.com/; 866-531-1285
1. Byram Healthcare * (877-90-BYRAM) * website: Byram Healthcare
2. Better Health Supplies * (844-260-0720) * website: Better Health Supplies
3. EdgePark * 800-321-0591 * website: EdgePark
4. If you have a supplier you like, please let us know in the comments section below..
1. Ostomy Secrets- www.ostomysecrets.com 1-877-613-6246
2. White Rose Collection- www.whiterosecollection.com (UK-based; ship to US)
3. Stealth Belts- www.stealthbelt.com 1-800-237-4491
4. NuHope Ostomy Support Belts-www.Nu-hope.com/beltlit.pdf or 800-899-5017
5. Celebration Ostomy Support belt- https://celebrationostomysupportbelt.com/ or 413 539-7704
6. Swim apparel/undergarments- https://prismhealthservices.net/conniusa or 413 539-7704
7. Stomaguard: www.stomaplex.com 570-560-1016
8. Stoma shield: www.stomagear.com 800-681-1584
9. Stoma support: www.ostomyarmor.com 719-689-0203
“Boy Shorts underwear: They are…comfortable, and the pouch lays flat, and the stool is distributed throughout the pouch instead of collecting at the bottom of the pouch.”
“Camisoles or Trendy Top: are perfect to wear with low-cut jeans or fitted outfits. The pouch will stay in place. (No more pooching out at the perfect).”
“Consider buying maternity pants (or bellybands).”
“If you have a stoma above the waistline, supportive wraps by Ostomy Secrets will help distribute and smooth the contents of your pouch and conceal pouch. They are also great to wear for romantic moments."
1. Be Free Odor Elimination System: www.befreetechnologies.com or (855) 914-4926. 2. Hollister M-9 drops. 3. Deveron pills. 4. Over-the-counter options: Insert mouthwash or mints (ex.,Tic Tacs™ Altoids™)into the pouch. 5. Never insert products into the stoma.
1. Diamonds (Convatec)
2. Osto-gel Super Absorbent (Montreal Ostomy)
3. The Original ILE-SORB (Cymed)
1. Call your surgeon’s team OR send a message to your surgeon via the patient portal or whatever means you use to communicate with your surgeon (be sure to get contact information before discharge).
2. If you have one, call your ostomy nurse (be sure to get contact information before discharge).
3. Call your primary care team.
4. If available in your area, consult your outpatient ostomy clinic.
5. Ostomy pouch manufacturers. They often have nursing staff available to advise ostomates on how to use their products and the best products available for your situation. They also provide free samples so you can see if their recommendations work for you. See “Affordable/Low-Cost Supply Resources” above for their contact information.
General Tips:
6. Follow up with your surgeon/ostomy nurse or clinic as scheduled to avoid pouching issues. Trouble with pouching can damage the skin quickly. Unfortunately, your general practitioner will often lack the experience necessary to address these issues but may be able to steer you to appropriate healthcare professionals in your area.
7. If you are having issues with the skin around your stoma, you may want to consult the WOCN Peristomal Skin Assessment Guide https://psag-consumer.wocn.org/#use- guideline], as well as your medical/surgical team, manufacturing companies, and other ostomates).
If you have Home Health (HH) services, your supplies will be provided by the agency:
- Medicare: The home health company must provide ostomy supplies. The supply order can be faxed to the home health company (many still use fax). When home health is no longer needed or available, obtain a prescription from your doctor (surgeon, primary care physician, or ostomy nurse) and contact a Durable Medical Equipment (“DME”) company to order ostomy supplies. DMEs will bill your insurance company for you, although you will typically be required to pay a copayment.
- If a private insurance company pays for your supply, contact your insurance company to find their preferred DME company.
- If you have Affordable Care insurance that does not cover supplies or if you are self-pay, you will need to pay out of pocket. You can order ostomy supplies on the internet, use a DME company, or at some local pharmacies. We suggest you shop around for the best price. See the “Affordable/Low-Cost Supply Resources” section above.
After Home Health is Discontinued:
Each insurance company has its preferred provider for DME. Please call your insurance company to find out their preferred DME company. Then call the DME company o set up an account. Bring the information to your next clinic appointment. Please speak with the DME company about your out-of-pocket costs. For example, you will be responsible for 20% of the cost with Medicare.
CompanyName: My account number:
Telephone #: Fax #:
You must get a prescription when your supplylist changes.
Please call your doctor’s office and ask for the DME information to be put in your chart. Please see “Ostomy Product Suppliers that accept Insurance” for a list of possible DME suppliers.
We recommend you evaluate which pouch works best for you.
1. Call any of the six ostomy manufacturing companies (i.e., Hollister, Convatec, Coloplast, NuHope, Marlen, CyMed Ostomy) listed on the first page.
2. Tell the representative you have a new ostomy and want to try different pouches. Ask for two of each so you can try the pouch twice.
3. Use the “Your Ostomy Product Information” chart above to explain what type of system you need (ex., two-piece with a filter).
4. Keep track of your results with each ostomy used with the chart below.
5. Bring this sheet to your follow-up appointments to review for future orders.
We wish you the best of luck. If you have questions or would like to suggest additions or changes to the above, please do so in the comment box below.
Quick Resource Guide for New Ostomates
.pdf
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