From the US National Library of Medicine: “Familial adenomatous polyposis (FAP) is an inherited disorder characterized by cancer of the large intestine (colon) and rectum. People with the classic type of familial adenomatous polyposis may begin to develop multiple noncancerous (benign) growths (polyps) in the colon as early as their teenage years. Unless the colon is removed, these polyps will become malignant (cancerous).”
We are taking a look at FAP this March, which is Colorectal Cancer Month. We interviewed Caroline, who was diagnosed with FAP when she was 10. In some cases, surgery is necessary to remove polyps – and sometimes the colon – among those with FAP, which can result in the person needing an ostomy pouch. Caroline does not have an ostomy pouch but may need one in the future. Thank you to Caroline for her informational and honest answers to our questions!
When did you first find out about this medical issue? How much were you initially told? What were you told was the “plan?”
I was 10 when I was diagnosed with FAP. My mom has it, but my parents waited until I was a preteen to have a blood test done to see if I also had it. I wasn’t told much at first. I suspected something was going on because of the blood test. My parents explained a little more when I had to have my first colonoscopy, but I didn’t know what FAP was or the scope of what I would have to do throughout my life to monitor it. I was a kid and they wanted to protect me. The plan was basically to have annual tests to check on the polyp growth and go from there. When I was a little older they explained that eventually I would need to have surgery. My dad did a lot of research and I was on a drug study for a few years while in high school and college that thankfully halted the polyp numbers and allowed me a few more years before surgery.
Once it was decided that you would have surgery to remove your colon after college, what questions did you have?
My main questions were about quality of life and how my body would function post-surgery. The reply I received was essentially, “everyone’s body adjusts differently,” which was not helpful. I wanted specifics. I remember wondering “How am I going to travel? Can I go camping? How will this affect dating? Will I always need to be near a bathroom? How often will I have bowel movements and how frequent will they be?” I also wanted to confirm that post-operation I would not have to do the severe preparations that I was currently doing for scopes. That was one thing I really wanted.
Did you experience any symptoms of this issue before your surgery?
No, I never experienced symptoms from having the polyps. I always had regular colonoscopies to check on polyp sizes and numbers.
Tell us a little about your surgery experience. What was the medical staff like? Did you have any experiences that you felt should have been handled better? Or was there any staff that was really awesome and that you remember fondly?
My surgery experience was pretty good. I had a great surgeon who was really experienced and had good bedside manner. I felt comfortable with him, which was important since it was such a scary and vulnerable experience. Additionally, I had a wonderful nursing staff taking care of me. I was a bit of a nightmare after I woke up, and they did a fantastic job putting up with me. I remember being very insistent that I always needed more morphine.
The only experience that was slightly unpleasant were the effects of the epidural. It ended up restricting my ability to urinate on my own which was an issue when the epidural and catheter were removed soon after one another. It meant I had to have another catheter placed until the medication had worn off, which was a bit unpleasant. I had some prior issues with medication affecting my bladder and I wish I had been more insistent about waiting longer between when both were removed.
I don’t recall anyone specifically. I was pretty loopy for most of my hospital stay. Soon after I sent thank you notes to all the nurses.
After surgery, how long before you felt “back to normal?’
It was back to a “new” normal. You’re never exactly the same, but body functions do adjust and eventually you forgot what it was like “before.” I think it was probably close to six months for the recovery. I had staples for about a week and there were about three to four months when I couldn’t lift anything over five pounds or exercise. My recovery was a bit brutal because I had my first bowel obstruction about a week or so after I left the hospital.
You experienced a few intestinal blockages since your surgery. What lead to these and how did you deal with them? What was your recovery like after they had passed?
The obstructions are caused by adhesions that formed soon after my surgery. The adhesion combined with food that is too rough or fibrous can cause a blockage. I think they form in about 30-40% of patients post-op. I had no idea it was something that could happen so the first obstruction was shocking. It was horribly painful and I ended up back in the hospital for a few days. Dealing with them has varied. The worst one required a hospital stay and an NG tube. I’ve had others that have only required an ER visit, or if I’m lucky, only urgent care with an IV bag and some anti-nausea medication. Through trial and error I’ve discovered which medications help to relax my body. That, combined with IV fluids, means I can sometimes resolve the obstruction without major issue. The recovery is always at least a week, maybe two, no matter the severity. It takes my body that long to get back to solid foods and regain my energy.
If you could go back and talk to yourself following your diagnosis, what would you tell yourself in regards to this experience?
Don’t drink the gallon of prep before your colonoscopy! There are alternatives that aren’t as bad! The prep is awful no matter what, but for my first colonoscopy I had to drink the gallon and I could not do it!
I would also tell myself that managing FAP isn’t as bad as I originally thought and that I’m lucky that it’s a medical condition that is so well researched. I would also tell myself that if you can get through the surgery you can get through anything.
In what ways do you live your life differently than you would if you didn’t have this medical issue?
I don’t live my life any differently. The only thing I do is to make modifications based on specific circumstances. For example, if I’m on a road trip or camping, I’ll modify the food I eat. I’ll avoid dairy and roughage. I also avoid or reduce my intake of certain foods and make sure to stay hydrated. These adjustments just help improve my quality of life. I’ve done a bit of backpacking and when I’m overseas and/or in remote places I travel with an IV and syringe kit. I also take medication with me and purchase travel insurance just in case I have an obstruction.
What has the medical follow-up since your surgery been like?
I have an upper and lower endoscopy every 12-18 months. This past year I did my first pill camera to check my small intestine for polyps. That’s something I’ll now do every four years. I also see a genetic specialist for an annual physical. This is new — I’ve just started to do it and have found it helpful and informative. The specialist stays up to date on new treatments and medications that may help with FAP. They also check for symptoms that relate to other cancers in the FAP family that I may be more susceptible to.
You’ve always been very open about this issue (which is great!). What do you think is the reason you’re comfortable talking about issues that others shy away from?
Well, I think I probably overshare a bit too much. I’m comfortable talking about it because it’s been a part of my life for just about my entire life. It’s part of who I am and it’s normal to me. My mom and sibling have FAP also, and talking about it was dinner conversation. I probably started speaking more, opening up about it, after my surgery and obstructions – because that’s when it started to really impact my life. It was just easier to explain the weight loss and general look of fatigue to friends and co-workers. I also have no shame or issues with speaking about it. I’m proud of how I take care of myself, manage the problems when they happen, and monitor my check ups. I feel as in control of my health as I can be.
Thank you again, Caroline, for your helpful answers to questions that those with FAP or other intestinal disorders may find helpful!
For more information, see related articles and resources here:
How can one limit ostomy output while sleeping?
I shouldn’t be replying to this……….I scanned through the whole article…..this girl doesn’t have a colostomy? Well, I do, and it is not the end of the world!…….I have for eighteen years….LIFE GOES ON AND LIFE IS GOOD!
I have been living with fap most of my life had surgery in my 20s am now 59 have regular check ups not always easy but I’m still here in Belfast
I sometimes think we are a rare breed