I don’t know if you have ever had a medical procedure in which a camera is inserted into your body when you are awake and aware, but it is a VERY weird thing to see. I had another colonoscopy today. The last one was in October, and even though there was a screen where I could see the camera movement then as well, it was awkwardly placed and would have required me twisting my neck weirdly and because a colonoscopy is both uncomfortable and slightly painful, I mostly didn’t try to look last time, but kept my eyes closed and endured.
Today, the screen was right across from me so I could watch as the doctor moved the camera into my intestines all the way to the very end. That’s a LOT of intestine to work through. Intestines are weird. It’s like being inside a pink slimy worm. I never saw Fantastic Voyage (which is a movie about when a blood clot renders a scientist comatose, and a submarine and its crew are shrunk and injected into his bloodstream in order to save him. There was a comedy “rip-off” of it later named Innerspace, which I also never saw). But I imagine it was a similar view inside the blood vessels as in an intestine. Maybe less twisty.
I didn’t watch the entire time today either. It’s a little freaky to realize that what you are feeling inside your abdomen is what you are viewing on a screen. Thanks to the prep you have to do in advance, with brutal laxatives, it’s nice and clean when they perform this intrusion, and it’s very clear when the walls of the intestine are inflamed as mine were for a good way in. (not all the way, but most of it). At one point, the camera encountered a big obstacle, and the doctor said “that’s one of your Mesalazine pills!” and had to maneuver around it. Why it was still complete all the way down there is a mystery, as I would have thought it should have dissolved long since, but since the function of those tablets is specificially to reduce symptoms of ulcerative colitis directly in the intestines, maybe that’s why.
They also blow air and saline solution in along with the camera, so there is a lot of uncomfortable pinching and bloating during the procedure. The doctor was Danish and obviously very experienced (and much older than me, which was kind of comforting, haha), and even though he was speaking Swedish to me, I kept having to ask him to repeat what he was telling me. He also took biopsies in several places, and THAT was especially hard to watch as he was pinching the walls of the intestine with a silver implement and it was bleeding afterwards in each spot. I could feel the tugging inside as well, so I stopped watching completely at that point, and just tried to go into a zone of endurance.
He confirmed that I have ulcerative colitis, and also told me that he was very surprised that I hadn’t been told that back in October after the first procedure, because he had read the report and seen those images, and it was very clear that I had it already back then. The previous doctor ONLY told me that I had no polyps or cancer, and though the walls of my intestines were “slightly inflamed”, colitis or IBS was never mentioned, and he only told me I should stop taking any ibuprofen at all since it can trigger inflammation.
Ulcerative colitis is an inflammatory auto-immune bowel disease that causes chronic inflammation, bleeding, and ulcers in the superficial lining of the large intestine, also called the colon, and the rectum. It causes “rectal urgency”, abdominal pain, and diarrhea mixed with blood. Thankfully, there is a well-documented treatment plan, though I’ll apparently be on the Mesalazine for the rest of my life, since auto-immune diseases never go away, and cortisone if and when I should have flare-ups. According to the Mayo Clinic, this disease can weaken the body and can sometimes lead to life-threatening complications, when untreated, which is exactly what was happening to me 2 weeks ago. While it has no known cure, treatment can greatly reduce and relieve symptoms of the disease. It also may bring about long-term remission.
The exact cause of ulcerative colitis isn’t known. Genetic factors can play a part, but no one in my immediate family has this (or had). Previously, diet and stress were suspected, but now healthcare professionals know that these factors may worsen but don’t CAUSE ulcerative colitis. So, even though there is a lot of stuff out on the internet about diet triggers and what you should and shouldn’t eat, as long as you are not in the middle of a flare-up, diet seems not to play a significant role. If you ARE, then avoiding things that can temporarily cause irritation or inflammation is a given: high-fiber foods, which are harsh on your digestive system, particularly during a flare-up; dairy products, fatty and greasy foods, sugary foods and drinks, alcohol and caffeinated drinks, and, of course, spicy foods.
After hearing what the doctor told me today that I should have been informed in October about this, and the entire ordeal that I dealt with at the healthcare clinic with my primary care doctor, I’ll also be filing a complaint against the medical system for the treatment, information, and examinations that I didn’t receive in good time. I doubt anything will come of it, but I really feel that the reception I got in the first 5 weeks was completely unacceptable, as well as the fact that if I had been told back in October that I had this condition, or that it was even suspected, I could have moved forward with requesting a checkup and a plan.
Afterwards, this afternoon, I sat outside, as Karin was coming to pick me up, and I talked to my manager and filled her in on all the results. She’s been in the loop from the beginning, and is the only one at work who knows all the details of what has been happening. The rest of my team has only been told that I’ve been really sick and they knew I was in hospital, and now home and recovering. My sick leave ends on Friday, and I’ll work (partly from home, with a vacation day in the middle) next week, and then I am on vacation for 3 weeks, so will really be in relaxation and recovery mode then.
Karin and I picked up sushi and came home and sat in the sun out on the deck and talked. Then we got her US taxes done and did the numbers for her FBARs, but realized later after she had left, that we had forgotten an account, so have to look at that again. Martin and Theo left for Corfu for a week, on Tuesday. They are there with 6 members of Theo’s family. I don’t think Martin has EVER been on a sun/beach/island vacation, so I hope he enjoys it!
Through this whole ordeal, I have been extraordinarily touched by the care and support and kindness of my entire circle of friends, colleagues, and family. I’ve never felt more loved. Even though in the beginning, not too many people knew what exactly was going on (partly because I was so upset, embarrassed, and ashamed of what was happening, completely unnecessarily), everyone was worried about me, and showed it. Once I was actually starting to communicate about my ordeal in more detail, I’ve been overwhelmed by the response. Messages, phone calls, visits to the hospital, comments on my very vague posts, and a real feeling of love surrounding and uplifting me. I’m not a spiritual person in any religious sense, and I don’t really care about thoughts and prayers but knowing that people were thinking about me, worrying about me, reaching out, and hoping for the best made a huge difference to my outlook, attitude, and peace of mind. I’m so grateful for the people who surround me.
Mood: relieved and thankful
Music: Vinnie Who—Only Dreaming