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Answers to 10 questions I’ve been asked about living with an ileostomy

Stacey Willins

We all come with a little baggage.

I was diagnosed with ulcerative colitis in 2010 at the age of 20 and struggled with mild symptoms but that was only the beginning of a long journey. By March 2015 I was having over twenty bloody bowel movements a day. I was given the choice, try a new medication or surgery. My doctor could see I was struggling with the decision and suggested a scope in hopes of it helping with the decision. That was done a week later and she stated that my colon was still very sick, with no sign of healing. She told me to think about it and come back to her office in a week. Pondering this life-changing decision I chose to relax over the weekend and celebrate my birthday. And this is what did it. On October 4, my actual birthday, I had an embarrassing accident. Sitting on the couch and as soon as I felt the need to go, I ran upstairs to the bathroom but didn't make it. While cleaning myself up I finally said to myself, “if sh*tting your pants on your birthday is not a reason to have surgery, I don’t know what is.” And as easy as that the decision was made.

Even though many of my friends and family have been through the surgery process with me, I still get a lot of questions about living with an ostomy. Thankfully they aren't afraid to ask those weird or outrageous questions, so I can embrace them and answer to the best of my ability.

Here are the most asked questions I've had about living with an ileostomy:

1. Did they remove your entire intestine or just part of it?

They removed my entire large intestine (colon). The disease affected the entire organ and it was too sick to remain in my body. Technically the procedure was called a sub-total colectomy because the surgeon left my rectum in place, which will allow for the option to have J-pouch surgery down the road.

2. What is a stoma?

The stoma is the opening in which my small intestine was pulled through onto my stomach. Mine is on the right side of my tummy, just below my belly button.

3. What does having a stoma feel like?

The actual stoma does not have nerve endings so I can’t feel that. There is some irritation around the stoma sight which I do feel as it’s a little bit painful and itchy. If that was healed it wouldn’t really feel like anything. Sometimes I can feel a gurgling sensation as either waste or gas is eliminated.

4. Do you have the urge to "go"?

I can’t feel when I’m going to have a bowel movement and aside from a little gurgling, I don't feel when it’s happening. I know I have to empty the bag either when I can visually see it’s getting full, or from the weight of it.

5. Do you still fart?

Gas is also eliminated through the stoma so I basically fart from my tummy. I can’t feel it coming and I can’t control it but it sounds like a gurgling, grumble and can potentially be fairly loud. I also need to monitor the air in the bag and make sure it doesn’t fill up.

6. What happens to your butt?

It’s still there. Now nothing comes out of it though.

7. Do you still need to take medication?

Nope, not right now! Before having surgery I was taking about 25 pills a day. Now other than vitamins and supplements, nothing.

8. Will you have an ostomy for the rest of your life?

No. I’ve elected to have j-pouch surgery. I can try to explain it to the best of my knowledge. Basically, instead of the small intestine sticking out from my stomach, they’re going to reconstruct it to attach to the rectum that was left in from the first surgery. They will bring it down and loop it to form what looks like a “J” creating an internal pouch. This is where waste will collect until I can eliminate though the anus and go to the bathroom normally again.

9. Can you still pee normally?

Everything about my urination is normal and always has been.

10. Do you feel better after ostomy surgery?


Article credit: IBD Baggage Claim