Ostomy & IBD

This is the first in what is going to be a series of posts focused on things that have helped me in my IBD journey. Today we talk about ostomies.

You lost me at Ostomy…

For a long time, the word ostomy really freaked me out.

Thankfully, not everyone living with IBD will have to experience life with an ostomy (colostomy, ileostomy or other). Some may have an ostomy due to reasons other than IBD too, such as cancer, injury, etc. Ostomies can be temporary, while others are permanent.

If you are someone living with an ostomy, this post may be of interest to you. Perhaps you are new to the ostomy game…or perhaps you are a seasoned pro. Maybe you are supporting a loved one who has an ostomy.

Or maybe you are facing the prospect of getting an ostomy yourself…. it can be scary. Very scary. At least it was for me.

For some reason, I’ve never been 100% comfortable with the word Ostomate. Maybe it just sounds weird to me. “I am an ostomate”. Personally, I prefer “I am a complex and multi-faceted human who just happens to be living with an ostomy”. But that is harder to say.

The more I think about it though, ostomate is not that bad of a term. And really, having an ostomy isn’t that bad either. I know getting one most likely saved my life.

Having an ostomy is no walk in the park. But most people will say the same thing: “It saved my life”. “It improved the quality of my life”…varying degrees of “it gave me my life back”.

Bye bye colon

Prior to surgery, my colon was a wreck. Massive inflammation. Bleeding. Ulcerations (trivia: the medical term for all this is “friable”). Unfortunately it had to come out. Steroids and biologics were no longer doing their job. I was miserable. It was a hard truth to face. Beyond hard.

And the initial few months after my ileostomy were rough. I will spare the details…perhaps that is for another post. But it sucked. I’m not going to lie, an ostomy is a big adjustment. In the beginning, it just feels so damn…foreign. And there are the body image issues. Feelings of stigma. Dealing with leaks. I felt shame. I felt very defeated.

Once things begin to heal though, and you find an appliance set-up that works for you, things do get better. You will get more comfortable changing your appliance. After a while, it just becomes part of your normal routine.

Some people absolutely love their ostomies. I am more in the camp that it is a “necessary evil”. I respect my ostomy and am extremely grateful for the freedom and reductions in pain it has given me. But I’ve never named my stoma. Some people do though:)

Importance of finding a good ostomy nurse

One thing I cannot stress enough is the importance of having a good Ostomy Nurse. For me, this has been a saving grace. Finding an ostomy nurse who is understanding, helpful and accessible made all the difference in the world.

Some stoma nurses are based out of hospitals, others out of community clinics or pharmacies. Many even do home visits. But literally every single ostomy nurse I have met has been ridiculously nice. Maybe I am just lucky in that regard.

The nurses at the pharmacy where I go to get my supplies are some of the most compassionate, non-judgmental, and knowledgeable human beings on the planet. Establishing a good relationship with your ostomy nurse is especially important in the beginning (both prior to surgery and after).

A few of the ways ostomy nurses may be able to help:

• Providing teaching and improving your confidence in doing appliance changes
• Problem-solving if you are having appliance issues (fit, leakage, etc.)
• Peristomal skin management and wound care for things like skin irritations, breakdown, discomfort, irritation
• Being a liaison between you and your GI Doctor or Surgeon
• Trying different appliance types, products and brands (free samples, free samples, free samples)
• Fittings for ostomy belts and hernia support belts
• Treatment coordination, referral to other services

A new normal

Life after ostomy surgery is challenging and overwhelming. That is an understatement. But there are things you can do to make it suck less.

Reach out to any support services you can. Remember acceptance takes time. Even after 3 years, I’m still not 100% “there” yet. But I am much more comfortable with it. Learning to deal with an ostomy just becomes a part of life…a minor inconvenience.

Are things perfect? Hell no! But having an ostomy is a minor price to pay for less abdominal pain and cramping. Not being on the toilet 20-30+ times per day is also good too.

I think sometimes I forget how bad things were prior to getting an ileostomy. Perhaps that is a good thing…it means I am moving on. You can too.

What’s on your mind?

In the comments section, feel free to post anything that comes to mind – your experiences, questions. Anything. This is a safe space:)

How has your experience with an ostomy been? What challenges have you faced? Any words of wisdom to share?

Thank you and I look forward to hearing what people have to say. Be gentle with yourselves.