Ostomy Lifestyle Question (May 5, 2015)

Question:

I have had a colostomy since March 12, 2015, bags have bursted 3 times, not comfortable with this very nervous and feel very down in myself, people say on the phone things will get better but am having a very hard job believing and it is worse when I do not have people coming during the day. My husband just likes to watch tv all day, he does some of the cooking but he is also unwell, would just want to get back to me – any idea when this will happen?

Answer:

So many folks new to having an ostomy, (colostomy, ileostomy and urostomy) sure can relate to your question!  For many of us when we have a newly created ostomy, we often have equipment failures. There are a number of reasons for this;

  • we are inexperienced at applying our ostomy equipment,
  • until our abdomen settles down from the swelling of the surgery our abdominal profile changes, and so equipment that worked initially, may not work as well over time,
  • depending on what the initial disease was that required the colostomy to be created in the first place, we may have varying stool consistency for some time.

Accidents of course can happen from time to time, but in most cases it should not. Therefore, I strongly urge you to speak with a stoma specialist who can work with you to find the ostomy equipment that will best suit you. If you are in Canada I would suggest you stay on this website, on the bar above click on “Support” and the menu will drop down and you will then click on “Find an E.T. Nurse”, this will direct you to, The Canadian Association of Enterostomal Therapy (CAET) introduction blurb, and on this page you will see “Find An ET Nurse”, click on the word “here”. You will then be able to locate your nearest stoma specialist. If you do not live in Canada, then do a google search for your country and area. ET Specialists can be located globally through the internet.

Many of us initially feel a sense of isolation when first we become an ostomate, it sure is understandable. We’ve endured some form of disease and suffered prior to the creation of the ostomy, this in itself is a challenging journey. And then, we must adjust to our new physical alterations as we recover from a major surgery, and some of us are still on medications for a period of time. This is only the beginning for us, as we must also learn how to work with our equipment. While this is happening we are also trying to understand what our new normal is. We have a second chance at life, we are altered, even though we are grateful we now have to find out what our new normal is, and begin again to try and live it. This is a huge undertaking and it is made easier with time, (I believe time does not heal, but it sure takes time to heal), and most importantly with fellowship. In other words, it is important to connect with fellow ostomates. The ostomy community in Canada and globally is very organized and involved in support, awareness and advocacy. I strongly suggest that you find the nearest ostomy support group in your area, and attend a meeting, you can then decide to become a member. In addition, many of the ostomy support groups have a list of trained volunteers who are ostomates themselves, they will come to your home to visit with you. If you are in Canada, once again go to the bar above click on “Support”, and the menu will drop down, you will then click on “Canadian Chapters”  You will be directed to a page that will assist you in finding a Chapter near you. If you do not live in Canada, then once again do a google search, with search words such as; ostomy support groups in (add your city or country), for example.

There are Support Chapters around the world that are set up to provide an opportunity for people who have had ostomy surgery and their families, partners, caregivers and friends to meet, that are committed to providing support, understanding and to share important ostomy information. Many of the Chapters invite health care professionals, manufacturers/suppliers of ostomy products for example. By connecting with fellow ostomates the feelings of isolation that you are experiencing at this time will be fully understood by them, and your fellowship with them will help you know you’re not alone. There are legions of us out here in the world, we here for each other, we care, and you are not alone.

You will find a new you with a bit of time and fellowship. Wishing you the best as you embark on this new adventure.