I love traveling, trying out new experiences and foods, and working with people from different countries and cultures. I’m generally a relaxed & easy-going guy with a sense of humor.
Current Colitis Symptoms:
Symptom free at the moment
How Smart Is Surgery?
The standard approach of GIs for ulcerative colitis is to treat with medicine & monitor for cancer. Cancer is dealt with if and when it shows up. Hopefully it can be caught early & eliminated via surgery, in the event it does show up (which, for most of us, it won’t). Since my initial diagnosis I’ve never given colon cancer much serious thought & definitely would not have considered surgery as a means to mitigate cancer risk. However I’ve had an experience lately that’s changed my perspective.
I’ve been diagnosed with UC for 2 years. I had a pretty intense 4-week flare in Oct 2014 which was brought to an end via prednisone. As of late Nov 2014, I had been symptom-free for a full month. I went for colonoscopy in late Nov expecting to be 100% clean, given I’d had no symptoms for a full month & my body normally heals pretty quickly. I definitely didn’t think there would be anything to indicate cancer. After all, cancer risk is supposedly not escalated for the first 8-10 years of a UC diagnosis.
The colonoscopy revealed that the disease was still active & I had hundreds of polyps throughout the entire colon (no way to tell if they were a problem until the histology came back). I also had a stricture in the sigmoid colon. My GI said the stricture may be malignant. I said “shit, I’m scared” and he said “I’m scared too”. That didn’t make me feel any better. I immediately pulled up some academic studies & discovered that, indeed, strictures are often malignant in the context of UC (one study said they’re malignant 40% of the time, and that cancer in the context of a stricture is often late-stage).
So I spent a miserable weekend waiting around for histology results & was extremely relieved to receive the pathologist’s report with no dysplasia or malignancy.
This was a bit of a wake-up call: over our lifetimes, our risk of colon cancer is very, very high. Yes, according to the stats it doesn’t escalate for 8-10 years after diagnosis. But over our lives, this risk is over twice as high as a pack-a-day smoker’s risk of getting lung cancer.
Sure, meds may slow the inflammatory process, which is what ultimately leads to cancer. But we’re all on the same meds, and the cancer risk is still very high according to the most recent studies.
Moreover, regular colonoscopy screening is generally not a good tool to catch cancer. They completely miss the cancer about 30% of the time. And in the context of ulcerative colitis, the type of cancer that manifests is generally very aggressive (only 20-25% 5-year survival rate, versus >50% for normal people with colon cancer). So in my opinion, waiting until you see cancer to make a surgery decision is a poor strategy.
My question to all of you is: why not get surgery preemptively?
Assuming I live into my 70s, with pancolitis I have a 30-40% chance of getting colon cancer during my lifetime. Getting colon cancer would be 10,000x worse than living with a j-pouch, which would be a manageable lifestyle adjustment that I’d probably get used to within a year or two. It seems like the smart thing to do is to get surgery & eliminate the cancer risk.
My current plan is to see if a change in meds can result in long term mucosal healing, which I’ll monitor via routine sigmoidoscopies every 6 months & full colonoscopies every year. I’ll also continue to play with my diet & try out some natural remedies (acupuncture, hypnosis, etc.) But if that stuff doesn’t work, I’m pretty set on colectomy in the next 2-3 years.
Let me know if you think I’m crazy.
Medications Supplements I’m Taking:
Currently on pentasa & prednisone. Getting TPMT test & probably switching to azathioprine soon.
Supplements: tumeric, folic acid, calcium / vitamin D, iron / vitamin C, fish oil.
written by John F
submitted in the colitis venting area