‘I went to the bathroom 10-12 times a day. Each time, I sat crying and begging for it to be over. Then, the last straw. My bottom ripped open after a 2-week recovery.’: Woman’s journey with Crohn’s and perianal disease

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“As I opened my eyes, I could see the blank white ceiling, hear the sound of alarms going off, and feel the indescribable pain spread across my body. The surgery was successful, but did that mean I was okay?

Woman on oxygen lays asleep in hospital bed after surgery
Courtesy Kristen Furey

I was diagnosed with Crohn’s Disease at a young age of 12. From then on, life was and would never be easy. I experienced the type of pain many people couldn’t dream about. The type of pain any good parent could not stand to see their child go through.

I was what most IBD patients would call, a guinea pig. My doctors prescribed me several medications and performed test after test and got absolutely nowhere in improving my horrid disease.

I went to the bathroom 10-12 times a day and each time I sat for at least a half an hour crying and begging for it to be over. I had something called perianal disease. This was a huge open wound on my bottom that severely burned when any wet liquid would touch it.

Picture having a huge open wound on your arm and pouring acid all over it.

Every time I went to the bathroom, I felt this acid burning pain on my bottom, felt the severe cramping in my stomach as I pushed to hopefully relieve the pain, and crouched over on the toilet wishing that this wasn’t how my life would end. I can honestly say I have never thought about suicide but the thought of living this way for the rest of my life was on my mind.

Young girl with Crohn's disease smiles as she sits in beach chair with white sunglasses on
Courtesy Kristen Furey

Fast forward 10 years and I had a life-changing surgery to end my days on the toilet and start my days living life. I had undergone a loop ileostomy surgery at Cedars-Sinai. Fast forward two more years and I had my colon removed because my Crohn’s decided it would not heal in my colon. When I had my colon removed, they also sewed my bottom shut.

I was a 21-year-old female. I had lived 2 years with an ostomy bag on my stomach in college and now they decided to take my butt from me too. It’s an awful thing to have to accept but knowing it saved my life and gave me a chance to LIVE again, gave me motivation to stay positive and to keep fighting.

Then it was the last straw. I had it. My bottom ripped open after a 2-week recovery in the hospital and a couple at home. The feeling of my perianal disease burning me had returned and I was back in the hospital. Back in a bed.

Woman with Crohn's disease lays in hospital bed after her ostomy bag broke
Courtesy Kristen Furey

This time was different.

When I opened my eyes from this surgery, I felt deathly afraid to be where I was. I was contained in a bed that made sure my bottom would heal properly. For this surgery, my plastic surgeon had to make sure my bottom was sewn together for good. He performed a flap surgery where he took skin from another part of my body (my butt cheek) to sew in a spot that needs more protection.

The spot where my perianal disease was.

Have you ever felt like you were drowning? Like you were trapped with no way out? Like there was no air for you to breathe and you felt like you were dying? That’s how I would describe my surgery. That’s how I would describe PTSD.

I was in the hospital for over 2 weeks. I spent most days crying and whimpering and begging for the pain to get better. I was on very high doses of pain medication that made me feel drugged and helpless. I wasn’t alive, I was just barely hanging on.

I got PTSD from the trauma of the surgery I experienced.

Woman with Crohn's and perenial disease lays in hospital bed on oxygen after surgery
Courtesy Kristen Furey

After the horrible 2-3 weeks in the hospital, I was told I would be transferred to a recovery home. This recovery home was even further from my home so that meant I wouldn’t have as many visitors. Every time I was left alone from my parents, again, I felt like I was drowning, like I was dying and being tortured. But really, I was being cared for and lying in a bed in my recovery home in pain.

I spent 4 long weeks in this recovery home, and it felt like 4 months.

Relearning how to sit and walk was the cherry on top of everything I had experienced thus far. Laying alone in that bed for 4 weeks having to pee in a bedpan, be washed and cleaned by another person, and not being able to leave my room, let alone my bed, was unbearable. Then when it came time to leave the bed, I couldn’t even stand.

Every surgery I have had since this one, I get this same feeling of PTSD. This is something I will have to live with for the rest of my life, but what I have done is finds things to make it easier.

To make life with a chronic illness easier.

I don’t have many pictures of me in the hospital. Reliving these memories is torture and being reminded of the pain and hell I went through, is not something I like to do.

Woman with Crohn's and perenial disease lays in hospital bed with sad look on her face
Courtesy Kristen Furey

Now when I look back at these pictures, I can see everything that I went through was worth it. Even though I went through the six surgeries, the drains, the PTSD, and the awful procedures, I can now breathe.

I can live a normal life for the first time in so long. For the first time in what feels like forever.

Although I now have PTSD, some things that I have found that help me is having someone with me in the hospital 24/7.

My mom and dad are the most amazing parent’s anyone could ask for. They take turns in the hospital staying the night with me and almost never leave me alone. They drop everything to be there because I need them. I have needed them for so long and the appreciation and love I have for what they have done for me as parents will never be able to be explained through words.

Some other things that help include listening to music or talking on the phone with friends. Something else that helps is to bring things to the hospital that remind me of home. I bring my own clothes, pillow, and blankets. It reminds me that I will be going home, and I will get through this.

Another thing that has helped my recent trips to the hospital is my family at my job, 11 Health. I now can speak to other patients who are going through this same thing I did and help them feel not so alone. Being a Patient Coach means changing the lives of other ostomy patients. Something I believe was the reason I got my ostomy.

Woman stands on hand on hip with ostomy bag showing as she holds up teddy bear
Courtesy Kristen Furey

No matter what, I will not give up. I will keep pushing through and I will never let my PTSD stop me from continuing living in this beautiful thing we call life.”

Woman with Crohn's disease and ostomy bag sits smiling in front of paintings as she looks down at flower in her hand
Courtesy Kristen Furey

This story was submitted to Love What Matters by Kristen Furey of Placentia, California. You can follow her journey on Instagram here and  Facebook here. Submit your own story here, and subscribe to our free newsletter for our best stores.

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