My name is Bethany Lowe. I am twenty-nine years old and live in Houston, Texas. I have been married for a little over four years to my husband Louis, and we have a toy poodle named Wrigley. I have had Crohn’s disease for eleven years. I had a temporary ileostomy for eight months that was reversed in March 2019.
I found out about the Patient Coaches program through Instagram. I was following one of the current Patient Coaches and saw her post about 11 Health and the Patient Coaches program so I began following those Instagram accounts. When I had several issues come up while I had my ostomy, I would message the Patient Coach account and ask for help or ask if any of them had experience with things I was having issues with. Their feedback and advice was so helpful and it was comforting to know I had someone at the tip of my fingers that I could ask questions when I needed help.
I am so excited to now be a Patient Coach and hope to be able to share my experiences to help other ostomates who may be experiencing the same struggles I went through. I’m also excited to be able to share my reversal experience and to help others know that you are just as accepted in this community even if you have had or will have your ostomy reversed.
I have had Crohn’s disease for eleven years, never reaching remission and always having moderate to severe disease activity. I failed every biologic drug that I tried and in 2017, had Clostridium Difficile (c-diff) that lasted for over twelve months. In March 2018, I ended up in the emergency room right before I was supposed to have a fecal transplant to combat the recurring c-diff infections. While in the ER, a scan showed a perforation in my sigmoid colon. This ER visit led to an appointment with a colorectal surgeon where I was given three options: continue medical therapy, try a diversion ostomy to see if the disease would calm down and give medication a chance to work or have a permanent colostomy placed.
After my colorectal surgeon did a flexible sigmoidoscopy and found that my disease was so severe that a diversion ostomy probably would not help, I decided to have a permanent colostomy placed. During my ostomy surgery in August 2018, my surgeon ended up finding healthy tissue in my sigmoid colon and rectum and performed a resection to take out the diseased intestine and then placed a diverting (temporary) ileostomy.
In February 2019, my surgeon decided that I was ready to have my ostomy reversed. There were many diagnostic scans and other prep work I had to do in order to be ready for the reversal surgery and in March 2019, I had my ostomy reversed.
Having an ostomy dramatically changed my life. For the eight months that I had my ostomy, I was able to do more than I had done in the past ten years of my adult life. I could eat at a restaurant without severe pain or anxiety, I could go on road trips without having a panic attack, and I could go on a walk with my husband without fear of having an accident.
Prior to my surgery, I had no idea what an ostomy was, and I was so fearful of surgery, feeling like an ostomy was an end of the road option for those of us with IBD. Little did I know, it was just the beginning of a brand-new life for me and my entire family. We have all been through an extreme whirlwind over the past twelve months and have become closer and also learned so much about ostomies and the ostomy community.
My one piece of advice for other ostomates is to never be afraid to ask for help. If you have a question or are struggling with your supplies, reach out to another ostomate and ask for their advice. It’s likely that they have some great tips and tricks that even your healthcare providers do not know.
This does not take the place of reaching out to your healthcare provider but in my experience, was a great supplement as I was learning so many new things about my ostomy so quickly!