When you’re preparing for colorectal surgery, it feels like your surgeon throws a ton of information at you. Left and right, risks and benefits, pros and con. However, no matter how much information they throw at you, there is always something you won’t know until you’re living it. In this four part series, I hope to tell you some of the things that I learned after my own surgeries. This series is not meant to scare anyone but to educate on the things I wish I had known.
Part 3 - Your Surgeon’s Priorities
In my experience with colorectal surgeons (and I’ve had a few) they are very concerned about one thing: that your bowels function properly. And this totally makes sense considering we are trusting them with our bowels - and our lives, to some extent. However, if you’ve had any colorectal surgery you know that there is so much more to these procedures than just functioning bowels and living.
I’ve had four open surgeries which resulted in one wicked scar along my abdomen. This scar is not something I’m ashamed or embarrassed about, but some people do have some hang-ups about their scars. In a perfect world, your surgeon would care about how your abdomen looks after surgery. They would understand that a gnarly scar is not ideal for a lot of people, and that these scars can tie in directly with body image.
I asked my surgeon on numerous occasions to please sew my incisions closed instead of using staples. My request was never honored and I was never told why. Perhaps there is a medical reason he never sewed them shut. But for me, each time I was cut open and stapled shut my scar grew bigger and wider and maybe even to some other people’s eyes - uglier.
For my final surgery, I requested the same thing for my ostomy take down—please use stitches instead of leaving it open like many do. I have a lot of friends who have that bullet hole type scar from their takedowns, and I didn’t understand why surgeons dont sew them shut. So I asked him to sew it shut, and he did, but it resulted in two giant dog ear corners. Clearly, a pretty scar was not of his concern. In my personal experience, my surgeon did not care about my concerns about how my body looked after surgery.
I understand that some of these requests may sound vain, however, I am the one who had to look ay my body every day after surgery. Not only accepting my disease, but also accepting how my body had been changed forever. In my journey, this consideration was never made for me as a patient. My surgeon wanted me alive and wanted my bowels functioning to the best of their ability. How I looked during and after was never given a second thought.
In my experience with various surgeons, when I expressed problems with my mental health due to surgeries/IBD, there was very little concern on their behalves. I struggled a lot with mental health during my surgeries because I experienced many many set backs that were directly related to my surgeries thus directly affecting my mental health. Don’t get me wrong, I want a surgeon who knows what he’s doing in the OR and is capable of helping me, but I also want a person who understands that I am also a person. As patients, we do not deal with surgery on a daily basis—it is not our job. We are people, who are having traumatic life changes happening and sometimes we break. I don’t expect surgeons to act as mental health specialists, however, I do expect them to help their patients when they’re having a tough time coping, even if that just means giving them a referral for a mental health specialist.
When I asked some of my friends what they wish their surgeon cared about, there was an overwhelming response about fatigue and nutrition. It can often feel like once you’re done having actual surgery that your surgeon pushes you out the doors and says “Have a nice day!” There is a desire for more care and compassion after surgery.
After surgery when a patient goes home there are often 6-8 week of recovery that the surgeon has little interest in. Nutrition after colorectal surgery can be tough. I think one time I was referred to a nutritionist by a nurse but never by my surgeon. Many patients leave the hospital and have no idea what to eat, what to look for, and how to eat the proper things to encourage healing. Now when it comes to fatigue, that is an on going issues that many IBD patients experience for a lifetime. However, specifically after surgery fatigue can be a doozy - especially when it is combined with pain medication. In my experience when I told my ddoctor about the fatigue I was experiencing, he basically nodded and said “ok," but there were no follow up questions and zero desire to help me regain some of the energy I once had.
Long term complications
I wrote an article for this series specifically on long term complications but it’s worth touching on here. In my experience, a surgeon does not care how your body is doing 2-5 years down the road after surgery. As long as your bowels are functioning, the long term complications are really none of their concern. I think the biggest problem with this is that as patients we are not educated on most of the long term complications, so we don’t know to find other specialists.
I want to stress here that these are my experiences and those of my friends. I know that there are doctors and surgeons out there who give complete care and touch on all of the things that I have mentioned above. I know that some doctors might say that some of these things are not their job as it does not relate to their specialty. I know there are exceptions to every rule. The above listed complications are what I would have received through my experience.
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Jackie Zimmerman is a multiple sclerosis and ulcerative colitis patient and the founder and executive director of Girls With Guts. Since diagnosis, she has blogged her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community and pays it forward as Social Ambassador of the IBDHealthCentral Facebook page. In her free time (what free time?!) she spends time with her two rescue pups and plays roller derby. She’s online @JackieZimm.