I’ve been suffering with Crohn’s for over 10 years. I just recently had the ostomy surgery in Oct 2016. It’s been a very big lifestyle change and my incision still has not healed. My stoma is sinking in and on 1 side causing leakage every day, which has my entire tummy inflamed with rashes, and not healing. It’s very frustrating as my ET nurse and doctor’s have told me they don’t know what to do. I don’t leave my home to go anywhere, I can’t sleep because I’m very paranoid about leaking on my bed so I sit up all night. I don’t want to eat anything as I’m afraid it will cause more damage and just don’t have an appetite because I’m so depressed.
Please if you can help in anyway, kindly let me know.
You have suffered for a very long time, the years of Crohn’s, surgery, and now a difficult recovery. Many of us who undergo ostomy surgery must endure challenging recoveries. We do recover fully, often with the support of fellow ostomates and professionals who help us find the correct ostomy equipment for our individual requirements, and emotional support.
In many locations in Canada and around the World there are Ostomy Support Groups. People with ostomies do not have to endure alone. There are many issues that arise with being an ostomate, a caregiver of an ostomate, and there is often a need for support. Over the years, there has been an evolution of organizations to educate, assist and empower persons with ostomies. The Ostomy Support groups are affiliated with organized Ostomy Associations and Societies. The Canada Ostomy Society https://www.ostomycanada.ca, for example has been in place for many years working toward a common goal in support of the needs of persons with ostomies, needs that include encouragement, emotional support, empowerment, and education.
The support groups are volunteer-run charitable organizations dedicated to helping all persons, including families and caregivers, who have been affected by ostomy surgery. Their mission is to provide practical support and encouragement to all ostomates by visiting them at home or at hospital, by holding monthly meetings, by providing an assistance hotline and through a monthly newsletter, outreach programs, educational seminars/training programs, and operating a lending library of ostomy literature.
I cannot say enough in support of these groups, I have learned so much and the camaraderie is priceless.
Having said this, I highly recommend that you locate a support group close to your location. Currently, I understand that it will be challenging for you to leave the house to go to a meeting. The support groups as mentioned above, provide trained ostomate volunteers who can arrange a home visit. To receive visit(s) with a fellow ostomate who understands your current challenges, who is connected with other ostomy resources in the support group, would be a real moral boost for you.
To locate a Support Group in your area:
Ostomy Canada website:
At top of page there will be a bar menu, click “Support”, another menu will drop down, click “Find you local ostomy group”, click on this and follow the instructions.
In addition, although it has been challenging to find the best equipment for your stoma and body type, there are some solutions, but, it may be a matter of further investigation. It would be the NSWOC.
To find a NSWOC in your area:
Our friends over at Nurses Specialized In Wound, Ostomy And Continence Canada [NSWOCC] (formerly called The Canadian Association for Enterostomal Therapy (CAET)) have renamed their handy look-up page on their website. It was formerly called “Find An ET Nurse” and is now called “Find a NSWOC“. Click on the image to the left or link here to go to their site.
Finding the right type of ostomy supplies:
Finding the right type of ostomy supplies is an essential element for living well with an ostomy. After surgery we leave the hospital wearing a particular brand of ostomy equipment. Many people stay with their initial brand and live happily. However, there is more than one manufacturer of ostomy supplies. Your WOC (E.T.) nurse is a good source of information on new products and for supplier recommendations. Your choice of both product type and place of purchase is limited only by your personal requirements.
Many of the ostomy equipment manufacturers are very helpful for choosing the equipment that may work for you. You have consulted with your ostomy nurse for information and recommendations for you particular situation. Remembering that every person is different and you need to find what works best for you. For example, it is sometimes necessary for individual to have ostomy products (usually a wafer) fitted for their particular situation, ask your E.T. Nurse for recommendations. Many of the manufacturers have specialists on staff who will discuss your equipment issues with you, they will come up with a recommendation, and will send a sample supply for your use, (free of charge), and then will follow up with you within a certain time frame. Most have knowledgable nurse(s) or other staff available to answer any questions you may have. Call the manufacturer’s toll free 800 number and request to speak with one of the professional representatives, after their recommendation, ask for a free sample.
Following is a short list of manufactures, it is important to note that the list is not in any particular order of preference, nor are they an “Ask the Ostomy Lifestyle Expert”, recommendation of any sort. In my experience, all of the manufactures and there are many, provide superior supplies and services. The following is a small list that has been compiled to be a quick resource list only to get you started, there are many manufacturers that you may prefer to contact. For additional manufacturers, check with your E.T. Nurse.
Sample Makers of Ostomy Systems:
2401 Bristol Circle, Suite A205