In the fall of 2016 I had an end ileostomy created with my colon being detached and left in my abdomen. Having an ileostomy has been a life changing experience. It has taught me how to accept when my own vanity cannot be micromanaged, how to have an intimate part of your body suddenly taken out of you and be exposed, and how to accept that beauty does not have standards. In the summer of 2016 my medical team began to push for an ileostomy. We had reached a point in my journey with Chronic Intestinal Pseudo Obstruction, a rare and severe motility disorder, that there was absolutely nothing they could do to manage the colonic aspect. I was put through countless invasive, traumatic, and violating procedures to try and salvage what they could of my colon’s function. The goal of the ileostomy was to divert my intestinal tract from the colon. Everyone was hoping that disconnecting at least one failed organ would allow me to tolerate feeds into my jejunum or some oral intake. After being presented my alarming gastrointestinal scans in a room full of expert medical professionals, I accepted something that I was denying for months. That was the fact that I would need to go through with the surgery. We had held off on the ileostomy operation for months. However, once I needed around the clock narcotics and was on the brink of my colon perforating due to it being so dilated and full of stool and air, we knew it enough was enough. It was time to take action. I remember my mom sitting at the foot of my hospital bed, and my surgeon by my side, as we went through the details and possible outcomes of the surgery. I remember my mom asking “How do I sign okay to this?” as we stared at the massive change I would have to endure. My incredible surgeon just tried her best to comfort us… We signed the papers and gave consent. We knew that if there was any possibility to help me recover, we needed to take full advantage of it.
On the day of my surgery I remember praying with my mom and dad in the pre-op area. We prayed and hugged each other amidst a room full of nurses and doctors eager to take me back to begin. I remember being given the opportunity to get out of bed and walk myself from the hall onto the operating table. I won’t ever forget walking into that sterile room and seeing the tables beside the bed full of different instruments. I did not feel fear looking at the tools, but I felt a tragic sense of hope. I went to sleep with Coldplay on in the background as I looked into my anesthesiologists eyes. I went under praying and hoping that this surgery would be the answer to our prayers. That this surgery would ensure that I would have a chance at a healthier future. And then my eyes closed, and my team swooped in and took over from there. Having control for those last few moments was a crucial part of me receiving my ileostomy. I was able to maintain my dignity for as long as I could, because soon it would all be changed.
Waking up in recovery was a shock. I made it a clear goal that after I was brought up from recovery, I wanted to try to go for a walk. I wanted to be as aware and alert as I could be. However, waking up in recovery brought the reality of the operation I had just undergone. I had countless lines and tubes running and draining, my legs being wrapped up in pumps. I was put on a basal rate of narcotics that left me feeling sleepy and fatigued. The combination of the medications was administered with the goal of keeping me still and somewhat comfortable for the first day. Needless to say I did not get to go for my walk that first day. I remember looking at my ostomy and being unsure of what to feel. Normally at the age of 17 you are focused on crop-top photo shoots and cute bikinis. I was staring at my small intestine being brought to my abdomen and attached to a bag. I remember gingerly resting my hand on my ostomy, noticing its warm sensation. It felt so foreign. I felt violated having such an intimate part of my body suddenly being left exposed. I felt everything, and at the same time nothing at all.
My first appliance changes were full of anxiety, tears, and raw emotions. Honesty was something I had to realize, because I was feeling fear over this change in my life even though I did not want to realize it. I would cry upon looking at the ostomy, have anxiety over changing the bag, and dry heave every time I had to empty or drain the bag. I say these private and hard to reveal things because others have had to go through this, and others in the future will too. The least I can do is to let people know they are not alone. I had to keep reminding myself I would heal and I would accept the change. As the weeks went on, I was slowly able to accept more of this change. Slowly I stopped crying when I would have to change my bag. Eventually I no longer needed someone outside of the bathroom for emotional support. And once those emotions were eased, the gratitude soaked in. For the first time in months my abdomen was able to decompress. My ileostomy was giving me relief from agony that was beforehand never ending. Even though I battled chronic mucocutaneous separation around the site, I fell into a wave of immense gratitude for my ileostomy. For a few months, it gave me back my life.
Looking back on my ileostomy journey is emotionally agonizing. It is full of joy and heartbreak. I look on the spring of this year, when everything changed again. After a few good months of function, my ileostomy began to fail. My Chronic Intestinal Pseudo Obstruction decided to progress further, this time marking my small intestine. After countless surgical revisions, my ileostomy was declared to be in failure this summer. My abdomen now is constantly hard and distended, and the ostomy has minimum function. Now, I deal with never ending peristomal skin issues from the distention and tearing of the skin around my abdomen. While my ileostomy ceased to change my life, it did save my life. Without my ileostomy, I could have died from severe complications with my colon. Indeed, things with my ostomy did not turn out to be satisfactory or valuable, but it saved my life. Now, I accept my ostomy. I still suffer from anxiety every time I must change my bag. I have people turn away as I do not like people to see my ileostomy. I deal with worries over its odor and the fact I can not control when it makes noises. With that said, I have learned to embrace it. I find immense gratitude in the two months of relief it gave me, along with the fact it saved my life.
Having an ostomy is life altering. However, it does not define you. You will endure. You will adjust. You will be able to live with an ostomy. You will accept it and see it as a simple part of you. Do not let your ostomy impact your confidence. Embrace it and know it is a battle mark of a fight you will win, no matter the reason for having an ostomy. The road with an ostomy will be violating, exhausting, and sometimes scary. The road will also be full of victories, healing, and laughter. It is just about choosing to find the joy. Life is too precious to let things dim it’s beauty.
With this said, happy “Ostomy Awareness Day”. It is with this honest and raw post I hope to provide a sliver of ostomies and to peel back some of their stigmas. An ostomy is not a “poop bag” or an “embarrassment”. An ostomy is a sign that someone has conquered the unimaginable, and they are still standing. An ostomy is a sign of resilience. Together, we can raise awareness and erase the fears. Together, we can show the world that having an ostomy is acceptable. Together, we can lift each other up.
I am thankful for my ilesostomy, it truly tried it’s best, and in the end it saved my life.
To anyone that has an ostomy, had an ostomy, will have an ostomy, or just anyone in general: never forget you are beautiful, strong, and powerful. Simply living in this crazy journey called life is an accomplishment. Never question your true light.
All my love,
Here are some great websites to learn more about ostomies! Knowledge is power.