Some of the amazing ladies at the 2015 Girls With Guts Retreat
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 1 - Women’s Issues
Before my colectomy, my surgeon sat me down and explained to me very carefully that as a young woman of child birthing age, my fertility may be at risk with the impending surgery. Having kids is not something that is very important to me, so I brushed him off and requested that we keep moving with the other potential risks.
And that was that.
What my surgeon, a male, didn’t tell me was about all of the other issues that go along with having a colectomy or other intestinal surgeries when you’re a women. Here is are some things that happened to me post op.
Birth control complications
At the time of my colectomy, I was taking a birth control in pill form, something that none of my doctors or surgeons had any problems with. After my colectomy, I had my first ostomy, and end ileostomy and almost immediately I noticed that I was passing whole birth control pills out of my ostomy, which meant that I was not covered under my current birth control plan. As a new ostomate, I didn’t even know that was possible. Now, I’m well aware of absorption issues and that often you can pass whole pills, but I’m a firm believer that this is something that female patients should be made aware of in order to avoid unexpected pregnancies during their surgery sequences.
At the time second surgery, I had switched to the Nuvaring for my birth control, which is a small silicon ring that is placed inside your vagina. It just sort of hangs out in there but you can’t feel it and I liked this method because I knew I wouldn’t have any issues absorbing the hormones. My surgeon was well aware of my chosen method of birth control. About 2 days after my surgery, I noticed that I had started bleeding and was really concerned that something was going wrong medically/surgically. What I later learned was that my surgeon removed my birth control during the surgery, did not put it back, and did not tell me that he removed it.
I hate to pull the, “he’s a man” card, but I would really like to think that a female doctor would know risks and complications that can arise when birth control is removed or changed without a patient’s knowledge. Imagine if your doctor removed your IUD while in surgery and never told you. While the Nuvaring isn’t as hard to replace as an IUD, it was a similar situation in that I wouldn’t have known had my period not come very unexpectedly. When I told my gynecologist this story, she was shocked and appalled. Medication of any kind, even birth control, needs to be handled carefully.
After recovering from my first surgery, the first time I did have my period I noticed that I had some issues inserting a tampon—issues that I had never had before and that really concerned me. I called my gynecologist and explained the issues and she called me in for an exam. Upon examination, she noted that my uterus was completed tilted due to swelling from the surgery. A problem that I was never made aware that could happen. She told me that it was likely that once the swelling went down that my uterus would return to its previous place but couldn’t guarantee it. It was here, in this moment, that I realized how little communication there are between doctors. I can’t speak for a man’s experience, but since my colon and my uterus share the same real estate, I would have really liked to know that one affected the other and that surgery in the region could cause complications, even if they were temporary.
I don’t know if these two issues happened because of lack of education on my surgeon’s part of because he simply did not care about the results. These are just two of the issues that I personally experienced. Below are some of the complications that friends of mine have experienced.
Pelvic floor dysfunction
The organs in your body depend on each other in terms of support. They hold each other up and when you remove one or two of them there are large open spaces that can enable your other organs to fall or sag. In many women who lose their colon or rectum, their uterus can start to sag inside them. This can cause general pain, scar tissue and painful intercourse. This can result in surgery to tac it back in place, but a common treatment is pelvic floor therapy, which can loosen up the scar tissue resulting in less pain.
Another organ that can be supported by your colon is you bladder. After surgery some women experience difficulty emptying their bladder fully or the opposite, urinary incontinence. Pelvic floor therapy can help with this and so can some medications.
Ovarian entrapment syndrome
Ovarian Entrapment Syndrome is allegedly a common complication after a colectomy, however it is almost never mentioned as a potential risk. Common with j-pouches, ovaries can get trapped behind the jpouch, causing pain, discomfort, and potentially can result in more surgery.
A woman’s perogative
This article listed just a few of the things that I have experienced along with a few of my friends. These are issues that our doctors did not tell us about, but that may be because they are not common issues. The best way to combat being blinded by side effects of surgery is to ask a lot of questions. If you can, get your surgeon and your gynecologist to talk to each other about risks and benefits. You will never be able to prepare for every possible complication or speed bump during your recovery but being an educated patient, who asks questions, can help combat a lot of surprise.
The above conditions are just some of the potential complications of colorectal surgery as a woman. This article is not intended to scare anyone but rather to create informed patients who know the right questions to ask.
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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.