(Another) New Normal After Ostomy

I have lived three lives since I was born. Before I was 20 years old, I grew up like any other kid, did sports, got into trouble, drank from the hose, etc. I played soccer and was a competitive figure skater spending most of my teens in an arena. I went to school and had lots of friends. You know, a “normal” life. That was life number one.

That changed forever suddenly in 1988, at age 19, when I started having severe abdominal pain and bleeding. Six months later I was diagnosed, finally, with fistulizing Crohn’s disease.

Spending 30 years with Crohn's

Hour after hour, day after day suffering in pain, diarrhea, blood loss, loss of appetite and dropping weight fast. About a year later I had my first of many bowel resections. It was an emergency resection as I procrastinated and let it go too far. The surgeon cut out a grapefruit sized abscess in which my small and a portion of my large fused together. No wonder I was in so much pain.

I had six more resections over the next 30 years, usually for obstructions or abscesses. Not to mention the dozens of hospitalizations for various secondary Crohn’s ailments from kidney stones to fistulas. For much of this time I developed perianal disease and many of my surgeries were trying to remedy this pain and suffering. I spent years trying to figure out how to sit comfortably. Just looking at a chair was traumatic.

What Crohn's has taught me

I learned a few things over these years. Getting Crohn’s was not my fault and I did nothing to cause it. That was hard to comprehend. I learned how to eat all over again. What I could eat or drink and when, before, during and after flares. I learned to keep track of everything I consumed.

I learned what my limitations were with having an inflammatory illness and an invisible one at that. I learned who my friends actually were and who to trust. I learned that some co-workers and bosses could care less that I was ill even though it was my illness that was unreliable and not me. I learned how to make excuses for missing out just so I did not have to explain everything. I also learned how to swallow pills and how to inject myself.

More importantly I learned that mental health is an important aspect of having IBD. Do not hold everything in, if you need to talk, talk. Find someone to vent to, it is worth it. That was life number 2.

Life with a permanent ostomy

As for life number three, for the past four years I have been living with a permanent ostomy and all I can say to that is that I wished I had done it sooner. The ileostomy and proctectomy surgery was the best way to “cure” my perianal disease as biologics were not helping this portion of my disease. Biologics helped with everything else with regard to my Crohn’s, just not the perianal aspect.

Once again, I have had to re-learn what I can and cannot eat. Some things I avoided during my second life I can now eat. I had to learn how to remove and apply the pouch and how to take care of my skin. I also learned that it is very easy to get a hernia now. I’ve been learning to cough and sneeze while holding my abdomen because getting a hernia is as simple as coughing and sneezing.

Hacking my ostomy

I have also learned some “hacks” when it comes to affordability with ostomy supplies. Simple things like purchasing dog feces bags from the dollar store instead of where I purchase the pouches. I can get hundreds of bags for $4. I learned that nasal spray, which is a corticosteroid, is great for my skin to keep the redness down. It actually works, keeping in mind that what works for me, may not for you.

Eating a couple or marshmallows can help slow down output so it’s not so watery. Using a hairdryer on low to help dry skin before attaching the appliance. As for the absorbent pads I use while changing my bag (just incase my stoma is active) I head to Costco and buy a large pack of puppy pads and cut them in half. They are identical to the ones at my ostomy store for a fraction of the price.

Getting my life back

Each of my lives have their own challenges and if I could have just had the one life then I would have been happy but its not how things turned out for me. Having said that, my ostomy gave me my life back and possibly saved my life in a sense. I have no regrets getting the surgery, only that I wished I had done it sooner.