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 4 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 2 - Long Term Complications
Recovery from each of my four abdominal/intestinal surgeries was 6-8 weeks. After that time I could resume normal activity, I could run a half marathon, I could jump and lift milk jugs. I could do anything according to my surgeon because I was healed.
What they didn’t tell me
I was given the impression that once I was cleared for normal activity that I was healed, and essentially that my body may go back to doing whatever it did before. Perhaps this was a silly assumption on my behalf, but my surgeon spent a lot of time telling me that my life would go back to normal or at least some sense of normality after I had completed the steps to my j-pouch. It was never explained to me that these surgeries would continue to affect my body for the rest of my life.
A weak core
I had four open surgeries and I have the badass scars to prove it. What this meant at the time of my surgeries was that I was too sick for laparoscopic surgeries (again, another thing they didn’t tell me until I was being wheeled into the OR) and that I would have a harder time healing those incisions. Of course I knew that they were not only cutting through my skin but also my muscles, but at the time, I didn’t realize the huge repercussions that would result from those four surgeries.
What my doctors never explained to me was that this type of vertical incision cuts through your abdominal core and that your core is literally responsible for holding together most of your torso. They never told me that a weak core can cause back problems, bone and joint problems and a significant amount of pain in the long run.
Many adults have weak cores because we don’t work on them. Ab workouts are not just for a pretty six pack but they’re also to help keep everything aligned. The muscles that are in your core support tendons, which support bones, which support you. I never realized how one affected the other until the pain that I experienced was so severe. I wish that my surgeon had told me that I’d need to spend more time working on my core after surgery and that if I didn’t I risked a lifetime of intense pain and possible irreparable damage in my spine. This seems to me like something that should be listed under “risks of surgery” in those initial talks.
Misaligned joints and tendons
In early 2015, five years after my first open surgery, I was in physical therapy for pain in my lower back. A pain that I couldn’t explain but was so extreme it rivaled IBD pain. It wasn’t until talking to my physical therapist about my past surgeries that it was explained to me that my core was so weak that it couldn’t support my back, which meant that my back was over compensating and thus causing the pain. On top of that, it was causing my hips to fall out of place over and over and therefore causing my legs to misalign. This created a vicious circle of pain all over my body that I couldn’t explain.
After three months of physical therapy I had made some improvement but by no means had I made a miraculous recovery. My PT told me that I had one of the weakest cores of anyone they’d seen, because once your muscles have been cut, they do not form together as strong as they once were. Which means I will never have a “normal” core but I can still have a strong core. I spend a lot of my time working on my core now because I’ve experienced the harsh truth of severe weakness.
Scar tissue problems
Many patients experience complications after surgery with scar tissue, especially after multiple surgeries in the same region. Scar tissue also creates fluid in the body and can sometimes result in large pockets of fluid that need to be drained. These pockets of fluid can result in pain, pressure, and infection. Strictures, which are essentially scar tissue tightening around an intestine can also cause pain, blockages, and sometimes result in more surgery. Both scar tissue and strictures can be treated with more surgery but that is often not a surgeon’s or patient’s first choice.
Before, after and during surgery many IBD patients take high dose steroids to help keep their disease under control. Steroids—which, in my opinion are over prescribed—can have devastating long term effects on the body. If you’ve been on high dose steroids for any length of time, I’d recommend a bone density scan to make sure the integrity of your bones has stayed intact. Weak bones and joints can be a long term complication of extended steroid use.
When faced with life or death surgery, none of the above listed complications should be enough to make you reconsider surgery. When people ask me about surgery I always say I traded one very large set of problems for a much smaller, more manageable set of problems. As a patient you need to be educated about how surgery will affect you for the rest of your life and be sure to ask your doctors about what you can expect one year after surgery and then one years, five years and beyond. Be sure to advocate for yourself!
In Case You Missed Iart 1: 5 Things They Don’t Tell Women About Colorectal Surgery** Part 3: Your Surgeon’s Priorities Through Your Colorectal Surgery**** Part 4: Keep Your Opinion to Yourself About MY Colorectal Surgery**
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.