Dear Colorectal Surgeon: A Letter From an Ulcerative Colitis Patient

In an open letter to colorectal surgeons, a woman with IBD shares her perspective

Patient Expert
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Dear Colorectal Surgeon,

I know you are incredibly busy with your office visits, hospital rounds, and surgeries, but I just need about five minutes of your time. You see, I have so much gratitude for you and your profession, but I also know, as I’m sure you do, that there is always some room for improvement.

First, a thank you for what you do

Let me start by saying thank you for saving my life and the lives of so many of my friends living with ulcerative colitis (UC) (not to mention Crohn’s disease, colon cancer, and other conditions). You know better than anyone that patients like us don’t end up in your office unless it’s a dire situation, and you worked some bowel magic and not only kept us alive, but also gave many of us our quality of life back.

You literally removed a sickness out of me that was trying to kill me and took hours in the operating room (OR) putting my body back together — multiple times. This experience is your day job, but for me, it changed every aspect of my life. Even though this journey was so mentally and physically exhausting, I cannot thank you enough for giving me back the life I thought I was losing forever.

Advice from a patient perspective

I know as a colorectal surgeon you wear many hats. You’re the in-office doctor, you’re the deliverer of bad news, you’re the hope fairy, you’re a listening ear, and you’re the fixer of bodies. I appreciate you so much, and I know I could never do your job. That’s why it’s so hard for me to confidently offer you advice about what you do — but as a long-term UC patient, with two colorectal surgeons and four open surgeries under my belt (pun intended), I would be remiss if I didn’t take the chance to offer up a few suggestions from a patient perspective to help make the treatment experience better.

Improve the communication chain of command

To a patient who is facing colorectal surgery, you’re like Jesus. You’re going to save the day, and we look up to you, and we put our lives in your hands. With that in mind, I’m going to ask that you reconsider the way in which you deliver information to us.

When I was in process for a three-step J-pouch procedure for my UC, my second step was a failure. My surgeon at the time did not deliver this information to me himself but asked his resident to do so — while I was still in recovery. I was in pain and on heavy pain meds, and I received devastating news from someone I didn’t even know. I was alone in recovery, without my family, and I couldn’t even articulate the questions I had.

Despite the heavy pain meds, this is a moment that is burned into my brain forever. While this exact situation may not be common, communication errors happen all the time. I ask that you take the extra time to talk directly with your patients when you have bad news and to deliver it to them at a time when they can fully understand what has happened. We all know pain medication is distributed liberally post-surgery, so it’s imperative to make sure a patient is capable of receiving information when you are giving it.

Know that mental health is key after surgery

You’re the real MVP of the OR. I know your job is to fix my bowels, and that is your No. 1 concern. I’m so glad this is your focus, but know that it wasn’t my only focus. When my bowels broke, so did my brain — and I really needed you to acknowledge that depression is such a major part of living with inflammatory bowel disease (IBD) and having surgery.

I also needed you to understand that just putting my body back together didn’t mean I was healthy. Once you put those staples into my abdomen, you acted like your work was done, but it wasn’t. With complication after complication, my ability to be resilient died, and I needed you to recognize the signs of depression and suicidal ideations. Your oath to heal involves all parts of the body, even those in which you aren’t a specialist. Please help your patients to get help in the future.

Warn us of long-term complications

Hey, you’re great. Thanks again. But when I was done with my surgeries, you never really told me what I could expect to experience in my body in the future.

Yes, you mentioned what could happen with my J-pouch, but you never told me that the trauma that surgery can cause in a body is a long-term issue that needs to be addressed. I didn’t know that my other internal organs could be affected by this procedure. I didn’t know about pelvic floor dysfunction. I didn’t know about the abnormal signs of pouchitis. I didn’t know I should still get checked for cancer annually. I didn’t know that my core would never heal itself. I didn’t know that my back would become so painful in my 30s from trying to overcompensate for my core.

I didn’t need you to tell me how to fix every one of these things, but I did need you to tell me more about what I could expect after major surgery. I needed you to warn me that although my bowels were much improved, my body would be in recovery forever.

Leave the door open for questions

I never sent you a thank you card, but I promise I meant to. I hope it’s clear how thankful I am for the gift you gave me, but I have just one last suggestion: I know that you can't keep in contact with patients forever, but there were so many things I still didn’t know or understand after surgery. There should be a way for me to ask questions six months, a year, or whenever after surgery to someone who knows my case or was involved in my procedure. Once my final surgery was completed, and my follow-ups were over, that was that.

While direct contact with you forever isn’t something I think any of us want, a resource that is an actual person is something post-op patients desperately need. So many of us rely on the internet and experiences of other patients, but this can be dangerous, so we need your help to create a way for us to get real information that doesn’t involve coming into your office, paying a pricey copay, and feeling confined to our 10-minute appointment that you’re probably running late for. I think there is a way to fix this, but you’re going to need the help of us, your former patients.

We’d love to help you help your patients more effectively. All you have to do is ask. We’d love to give back to you and to those who will soon be on your table. It’s the least we can do.

Sincerely,

Jackie, a colorectal surgery patient