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 4 - Other People’s Opinions
It was three years after my colectomy that I was sitting at a table at my sister’s wedding across from a boy I went to highschool with. I didn’t really know him very well, but my sister did inform me that he had Crohn’s so I figured at least we’d have something to talk about. After about five minutes of sharing our stories with each other he said to me,
“Man I really wish I would have know you then and I could have told you about aloe vera juice. Then you would have never needed surgery because aloe vera juice has basically cured my Crohn’s.”
Hopefully that statement up there made you just as angry as it did me at the time. It was also followed up by comments about how surgery is a poor choice, and going the “natural” route could have saved my colon. This is something I never dreamed I’d have to deal with after surgery - let alone from another Crohnnie.
An educated choice
When I made the choice to have surgery, it was an educated choice. I talked to my doctors a lot, I tried various natural diets, I tried many medications and when none of them worked, with a heavy heart I chose to have a colectomy. It’s not like I just sat around and thought it might be fun to remove a major organ. No one I’ve met took this decision lightly but for whatever reason, the very personal choice to have surgery is open for criticism from other people.
- I don’t care to hear their opinions and frankly it’s quite rude to even offer them at this point because it’s not like I can go back in time and get my colon put back in.
- I didn’t want to keep my colon. It had caused me so much pain and misery that the idea of keeping it was not even an option. Even if my colon got healthy again, there would always be the chance that it could flare badly again and cause me more pain and misery. I was HAPPY to see it go.
The hardest part about when someone criticizes my decision to have surgery is that they actually mean well. I know deep down that through the belittling of my choices, they actually just want to share whatever miracle cure they think they have found. However, like I said before, even if some miracle cure does appear it doesn’t do me any good at this point. My colon/rectum is already gone and I don’t want it back. Even if I could get a transplant, I wouldn’t want one. I have adapted well to my life without a colon and I don’t need one or anyone’s approval to lead a happy and healthy life. What the critics fail to see is that when they offer up their miracle cures to someone who has already had surgery they’re actually belittling me and the choice that I made. Its unsolicited advice and it’s never appreciated.
There seems to be this perception that people who have surgery gave up on something. The only thing that I gave up on was being miserable and dying from the inside out. I gave up on hating life and instead chose to be happy and to live a healthy life.
You’re too young
My favorite comment that I have received so far about being sick in general, but specifically about having surgery is that I’m too young. I’m not sure how age factors into this discussion but it’s not like colitis asked for my I.D. before it attacked my colon. Again, I know these comments are generally well intentioned but I’m just not quite sure what to say back when someone says, “You’re too young to have had so many surgeries," or “You’re too young to be so sick." The problem with these statements is that I am young, I am sick and that is my reality. Please don’t talk about what should be or how my life should have panned out because it makes me feel worse about it. Instead, let’s talk about what is happening right now.
The cure misunderstanding
One of the hardest parts of having surgery is the misconception that I am now “cured” from ulcerative colitis.
I just want to state for the record that there is no cure for ulcerative colitis or Crohn’s disease.
I did not cure my disease by having surgery, instead surgery was a treatment choice that I made. I always tell people that I traded one very large set of problems for a much smaller, more manageable set of problems.
Do I have active colitis in my body right now? I don’t know, but I could in the 3cm of rectum that I have left. I know I still have colitis there but I don’t think it’s flaring right now.
Do I still have issues with my j-pouch? It’s rare for me, but I can get pouchitis which feels a lot like colitis and it makes me pretty miserable.
What about extraintestinal manifestations? I do have problems with my joints at times though it’s not all the time.
Those questions above are just a few of the things that people who have had surgery still have to deal with. In my opinion, if we were “cured” these would not be things we would have to live with.
I know this article may have a negative tone to it but this is a real problem that I have experienced as well as many of my friends after we have had surgery. I’m not sure anyone appreciates unsolicited advice from people who are trying help, especially in a situation that cannot be undone. So I just ask that if someone in your life has had surgery or is considering surgery that you be kind and conscious of what opinions to share with them. More than anything, they just need your support.
In Case You Missed Iart 1: 5 Things They Don’t Tell Women About Colorectal Surgery
Jackie Zimmerman is a multiple sclerosis and ulcerative colitis patient and the founder 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. In her free time (what free time?!) she spends time with her two rescue pups and plays roller derby. She’s online @JackieZimm.