My 34-Year Crohn's Journey Continues

At the time of my diagnosis back in the '80s, there were 2 options when it came to medical treatment when dealing with my Crohn's. Just 2. Medication or surgery. (Hoping that the medication would slow down the need for surgery. Keep in mind, this was before biologics or biosimilars.)

Managing Crohn's after diagnosis

After trying different medications and combinations of medications, the ones that worked best for me were high-dose prednisone and mesalamine/5-ASA. Within a year of diagnosis, I was in the hospital for my first of many surgeries. Being the procrastinator that I am – or maybe I was in denial – I waited to the last possible moment to head to the doctor after developing a solid mass in my lower right abdomen. My subconscious self said to just increase my meds and it will go away. It was weeks before I headed to the doctor and as soon as I walked through the door, the doctor saw me and was shocked at the sight of me.

I was very pale, bent over, struggling to walk, and he put me in a room right away without waiting. After some quick investigating, not only was I pale but was running a fever and the mass was large and hard. He told me I needed emergency surgery and to get to the hospital.

That was the first of 6 bowel resection surgeries over a span of 15 years, and only part of the 36 hospital admissions over the past 34 years for secondary results from Crohn's (perianal abscesses, kidney stones, fissures, fistulas, and dehydration).

Long-term Crohn's disease complications

It would be 16 years, in 2020, before I would need another bowel surgery, but this was a choice. My GI helped me come to the final conclusion that my 30-year battle with perianal disease needed to end. She had tried several times unsuccessfully to convince me to get the ostomy surgery. Nothing we had been trying over this time was helping. Not medications. Not surgeries. Not even biologics. There was only one thing left to try – and that was to have an ileostomy and proctectomy.

Deep down I knew this was the only recourse I had left, but I still didn’t want to do it. The thought of yet another surgery just didn’t sit well because it would be another new "normal" and felt like I was starting all over again. Though... The thought of never having to run or rush to the bathroom anymore was appealing.

Finally going for ostomy surgery

So, in September 2020 during a pandemic, I took the first step and had temporary ileostomy surgery. We needed to do a temporary loop ostomy to divert waste from my rectum so the perianal disease could heal in preparation for having it all removed. Unfortunately, while the surgery went well, the output was always too watery and by Halloween, I was rushed to the hospital because I was in acute renal failure with a GFR of 4 and creatinine of 1300. I now needed to get my kidneys better before tackling the permanent ileostomy/proctectomy surgery.

It took 3 weeks in the hospital before I was well enough to get the surgery and another 2 weeks to recover from the 6-hour surgery before going home. My surgeon painstakingly, millimeter by millimeter, went through what I had left of my small bowel, separating it from my intestinal wall to give me more length. Over time, my bowels have adhered to the abdominal wall as well as to itself.

How my Crohn's disease is today

It has been over a year now. My kidneys have finally come back to a normal state and even though I have some leaking issues with the ostomy (too many scars around the stoma site) I honestly don’t know why I didn’t do the surgery sooner. I still need to be on a biosimilar, but it’s freeing and there has been no more Crohn’s-related pain. Really, it’s strange.

My surgeon has booked me in for more surgery soon for stoma revision in hopes to alleviate the leaking, and we’ll see how that goes. My stoma is too flat and retracts below the skin causing leaks.

I’ve been asked many times over my time if I had the chance to go back and do something different when it comes to my Crohn’s, what would I do? I would have done the ostomy surgery sooner.