This week Sarah asked Lauren several questions about her Ileostomy due to Chron's Disease
1. How do you feel having a permanent ileostomy?
My outlook on having a permanent ileostomy has changed a lot over the years. My initial surgery was actually an emergency surgery, so I didn’t get a lot of time to learn about life with an ostomy, or prep myself for what was to come. I was originally embarrassed and ashamed by having an ostomy, but over the years, I have come to love my bag. I have Crohn’s Disease and used to spend a majority of my life isolated and in the bathroom, and I now feel as though I have my freedom back. Now that I’ve adjusted to life with my ostomy, I would never want to go back
2. What have been the biggest struggles?
The biggest struggle of living with an ostomy bag for me, was learning to have confidence. As I mentioned above, I was originally embarrassed and had low self esteem when I first got my ostomy. I couldn’t bare the thought of having to wear a bathing suit, or try to date with it. However, the more used to the bag I got, the more I learned to love my bag, and with that, came confidence. I realized I could do anything any normal person could do, despite the ostomy and that gave me the empowerment to have the confidence. I didn’t choose to have this done, but it saved my life.
3. Have you cut out any particular foods to avoid getting blockages?
As mentioned earlier, I have Crohn’s Disease, so watching my diet, even before ostomy surgery was always a part of my life. Since having the surgery and living without a colon, I do try to stay away from a lot of uncooked vegetables or raw fruits. I LOVE salads, but they seem to be a little too challenging for my belly to digest. Blockages are not fun, so I do my best to avoid foods I know will cause this.
4. Do you exercise with an ileostomy and if so how have you found it?
Yes I exercise with an ostomy! I find I can do pretty much any type of workout with an ostomy. My favorites though, tend to be on the lower impact side, such as yoga or Pilates. I do know immediately following surgery, as your abdomen is healing, it’s best to avoid lifting super heavy weights until you are healed. After that, the sky is the limit!
5. What has been your greatest achievement since having an ileostomy?
My greatest achievement, since having an ostomy, was graduating college, moving out, and now working a full time job in the city. When I first went away to college, there was a point in my life where I thought I would never get through it. I used to live in the bathroom, with severe anxiety, and when I first tried going away to school, I barely made it through one semester. Since having an ostomy, I’ve been given my freedom and health back. I graduated school, and now live a “normal” life.
My name is Lauren, I am 28 years old and live in Boston, MA. I was diagnosed with Crohn's Disease when I was 12 years old. I spent the majority of my middle school and high school years either chained to the bathroom or hospital beds and waiting rooms, often feeling high anxiety over leaving my house, going to school, or hanging with friends. I have cycled through nearly every type of medication and diet available to Crohn's patients, with an emphasis on Prednisone use. It wasn't until I turned 18 where my early times at college led my health to take a turn for the worst.
When I was 19, I underwent emergency surgery, after spending nearly a year in and out of the hospital and on a picc line for abscess infections in my colon. My colon was so inflamed and obstructed, I was told I had a towel bowel obstruction. My surgeon had to go in and divert my colon, creating a temporary loop colostomy. I had no warning of having this surgery, and thus, woke up in shock with a new colostomy bag.
Since then, I've undergone seven more surgeries, each time removing more and more inches of my colon and eventually removing part of my small intestine. I now live with a permanent ileostomy bag.
It took me a long time to adjust to my new body, ostomy bag and way of living, but looking back, I wouldn't change a thing. I am no longer anxious over the bathroom, and while I still have an occasional Crohn's flare, I'd rate my overall health much higher. I have my life back. I can leave my house without worrying where the next bathroom is, I've had relationships, I workout regularly and have even gained weight that constitutes as "normal".
When I first underwent ostomy surgery, I had no one to turn to outside of my immediate friends and family. I created my page, The Colonless Chronicles to share my story and ongoing journey living with Crohn's Disease and an ostomy. I hope to help others going through similar situations and in turn, learn from others in this community along the way.
If you would like to share your story and discuss it with us in a one on one awareness feature please get in touch.