The Importance of a Colorectal Surgeon
While certainly not every inflammatory bowel disease (IBD) patient will need surgery, I do believe there are some things every person who suffers from Crohn’s Disease or ulcerative colitis should be aware of. Or, if you are the caregiver of either a minor child or loved one who is feeling very overwhelmed and/or emotional because of the disease, I would recommend internalizing what I am going to share with you.
For any patient or caregiver reading this who was newly diagnosed, still adjusting, or is flat out in an emotional place, the one thing I want you to take away from this article is:
If surgery should come up, always, always, always try to have it done with a COLORECTAL SURGEON.
If you aren’t ready to hear my very strong opinion on why right now (which I totally understand!) then feel free to stop reading. However, don’t forget the above sentence…ever. Even though you should, of course, do your own research and not just take my word for it.
I will also say for the record that I am not a medical professional but merely a patient like you who is sharing her experiences in the hopes of trying to help someone.
I am sure some of you reading this are probably thinking “duh” I would get a specialist if my surgery wasn’t done on an emergency basis. However, when you are in the thick of things, you don’t know much about the disease, and you are relying on one person to direct you (because you don’t know anyone else), things can get overlooked.
When the time came where I exhausted all medical options, my GI recommended a surgeon that she always sent her patients to. My gastroenterologist was emphatic that if I was to have surgery, which she was recommending, that it was to be done by this doctor. She made no room for anyone else which said to my parents and I that he was the best person for the job and that there was no need to get another opinion.
Huge. Huge. Huge. Mistake.
Since I cannot go back in time and change my past, I hope that sharing this experience might help someone either now or in the future.
The surgeon that was recommended for me was the head of pediatric general surgery at a well respected hospital. He was also incredibly kind and a real human being. I will get to more of his personality in a bit.
Because my parents and I had little to no understanding of Jpouch surgery, it seemed as though there was an option to do it in three steps, two steps, or one step. Meaning, I could endure multiple operations while needing a temporary ileostomy in the process or just have one with no need for an ostomy.
Um, that seemed like a no brainer to me and I bet anyone else if it was presented that way.
My parents, mainly my dad, were very insistent on doing this surgery in one step. After all, with no downsides presented, who would want their child to be cut open more than absolutely necessary?? My surgeon did tell us he wouldn’t be able to guarantee anything given he would have to make the call once the operation began but he would do his best.
I went into that surgery as healthy as a person could be. I had received Remicade the week before. I was at my competitive swimming weight (125 lbs). I was feeling pretty well.
I ended up having the surgery in one step.
Without going into gory details, I developed complications immediately.
A massive wound infection which caused my GI to dismiss other symptoms which led to me being accused of having an eating disorder, to me begging my parents to reach back out to my surgeon for help, which led to us finding mountains of abscesses and fistulas in my Jpouch. This then led to multiple drains, picc lines, and 10 months of IV antibiotics under the care of an infectious disease specialist. I know I went into details but trust me, that wasn’t even the half of it.
This doctor gave my parents his cell number, his home number, and even saw me on a Sunday afternoon at a discrete place in the hospital (I know this sounds creepy 🙂 ) to take care of something so I wouldn’t have to go through the ER and possibly be admitted. I loved his personality and I felt very taken care of by him. I also know he put my parents’ minds at ease- especially when my mom did need to call him in the middle of the night while my dad was away and she also had my brother to care for.
Anyway, my point in sharing this with you is that I later learned that general surgeon had done 30 Jpouch surgeries in his entire career. While I venture to guess most colorectal surgeons do those weekly if not monthly, 30 is a very small number.
J Pouch surgery, or any surgery related to inflammatory bowel disease (IBD) is very complicated. Therefore, only someone who understands and has experience with this complexity should lay a hand on you.. in my opinion.
I leave you with what I stated in the beginning, if you took nothing from this article, found it boring, thought I was being whiny, whatever…. Remember that if God forbid the time should come when surgery is brought up, seek out counsel from a colorectal surgeon.