Living with an Ostomy: 5 Tips for the New Ostomate

Living with any kind of ostomy can be difficult. On one hand, you have the physical changes a person goes through after undergoing surgery to have an ostomy (permanent or temporary).

Following this type of operation, the body is completely altered which can cause complications and/or just minor issues (like skin irritation, for example).

On the other hand, there is the emotional aspect of living with any kind of ostomy. Self-esteem and body image issues are just one of a host of emotions ostomates feel sometimes.

Getting an ostomy for ulcerative colitis or Crohn's

I once lived with a temporary ileostomy (aka loop ileostomy) for 3 years, and now I've lived with a permanent ileostomy (aka end ileostomy) for the past 6 years.

Throughout my 9 years of living with an ostomy, I have come across a lot of things. There are a few specific areas I want to talk about for new ostomates.

Tips for someone newly living with an ostomy

Allow time to grieve these new changes

Your body has just been completely altered. You just went through a major, life-altering operation. Everything seems different now.

You have to adjust to using an appliance on your abdomen. You need to figure out how to change the external appliance. It can take time to figure out what type of appliance is best for you, and how frequently to change it. Figuring out how to empty the contents of the bag without making a mess can be a challenge initially.

The relationship between how your body is working and food can take some time to explore. Showering and swimming are often different. Even sleeping positions may need to be altered a bit. I could go on and on.

Accepting an ostomy takes time

No one wakes up from ostomy surgery and automatically accepts what has been handed to them. No one.

Even if someone tells you they are completely happy with their ostomy (which many, many are!), don’t think for a second that that person did not have moments, days, weeks, and/or years of disliking what has happened to their body. There is nothing wrong with YOU for taking a long time to accept and come to grips with the person you currently are.

Don't listen to others advice on what to eat or not eat

I can't tell you the number of times I have been told that a certain food would be perfect for my body when it wasn’t. I cannot tell you the number of times I was told to stay away from a type of food, only to realize it was absolutely fine for me.

I also see delicious foods being posted from other ostomates that I know (through trial and error) would land me in the hospital which leads me to wonder – what is wrong with me? There are way too many articles out there about diet and nutrition with an ostomy that do not take into account that everyone is different.

For example, the more surgeries you have, the less likely your body is able to digest certain foods. I have just started to recognize that within the past year. It gets me down and makes me hate my own ostomy sometimes.

Then I remember, our journeys toward ostomy surgery are all different. Therefore, there is no one-size-fits-all for eating with an ostomy. Be smart and introduce things slowly. Maybe even keeping a journal might help.

Try odor neutralizing drops in your ostomy bag

I was personally appalled at the smell of the contents of my ostomy when I initially had the surgery. It not only grossed me out, but it made me worry about emptying my ostomy in public or in other people's homes. This then led to me not wanting to eat much during the day.

Almost all of the major ostomy appliance companies (Hollister, Convatec, Coloplast) have odor neutralizing drops which are a godsend for many. I highly recommend calling your ostomy supply company, speaking to a nurse, and seeing what he/she suggests. I have had great experiences personally.

Emptying the contents of the bag

This can help avoid any splatter. It's something I do every single time I empty my ostomy. I think I would be cursing it out a lot if I didn’t do this. :)

Be patient with loved ones

Understand that just like this whole experience is new, scary, confusing, and vastly different for you, those same things hold true for your loved ones.

They may say things that upset you or ask too many questions, but try to keep in mind that they are going through their own adjustment period. Whether it is a significant other, a parent, a child, a sibling, or a close friend, try to be mindful that others are just trying to be there for you. I know it can be very frustrating, though.

Do you have tips for living with an ostomy?

There are about a hundred other tips I can think of that I wish I had known early on in my journey with an ostomy. I hope some of these are helpful to you. Please feel free to share more in the comments section below. You never know what seemingly simple tip you might have that can completely change another person’s life for the better!