It's my birthday today, and I've turned 49 years old - wow. There were moments this year where I honestly thought I wouldn't see this birthday. Thankfully, those dark and dire thoughts have passed. It's been just over two months since I posted my last update, "Never Surrender," following a Corey Hart concert we saw at the Bell Centre. A lot has happened in those two months, which is why it's taken this long for me to write another update! I went back to that post and re-read it to see where I left off. Believe it or not, I was hospitalized a 2nd time for an IBS crisis on July 2nd, about two weeks after the first hospitalization! It was by far the most horrible experience of my life. I was in a state of absolute despair and struggling with physical discomfort like nothing I've ever experienced before. My wife was driving me to the hospital, and I was moaning and groaning the whole way there. I was counting the seconds and wishing I could be teleported into the E.R. because the drive was taking too long. We ended up missing our exit from the Décarie expressway, which delayed our arrival by an extra half hour! I was going insane, and my poor wife was doing her best to keep it together and get us there safely - which she did, God bless her. Unfortunately, the triage nurse was really unpleasant. Despite me pleading with them that I needed a bed, telling them that I could not sit for an extended period of time due to my prosthetic hips, they had me sit in a wheelchair for over an hour waiting to be seen by the doctor. Anyhow, I was eventually seen and treated, and then sent home later that night - like the last time.
IBS has ruined my life. Literally. I have become a prisoner to this condition. There are days where I can't leave the house because of it. My entire life revolves around chronic abdominal pain, bloating, constipation or diarrhea, and daily enemas. It's a nightmare. I can honestly say that living with IBS is far worse than living with Psoriatic Arthritis and Ankylosing Spondylitis. With what I've been through, i.e., the surgeries and comorbidities that have come along with those diseases, I think that says a lot about how bad IBS can be. The sad news is that gastroenterologists don't know what to do. I've seen several over the past two months.
None of them had answers or suggestions for treatments. The G.I. who initially diagnosed me two years ago had nothing much to offer either except to say "Diet and exercise" but with no specific dietary recommendations - what good is that? I'm doing my research online, and I'm part of a few SIBO/IBS Facebook groups where I can learn tips and trick from others who are in the same boat. One of the possibilities that I am seriously researching is a Fecal Microbiota Transplant. We have investigated Fecal Matter Transplants as a treatment for IBS. Although they are ONLY treating C.Difficile in Quebec, my doctors agreed that it was certainly something I should seriously consider. My wife and I have reached out to doctors across Canada who do this type of treatment, but so far, we have not had any responses. One of my doctors is working on getting back to me regarding some clinical trials taking place in Québec City and British Columbia. My endocrinologist and I are also working on a lead we have in Edmonton to be seen by Dr. Dina Kao, who specializes in FMT.
There is also the DIY at home option. People all over the world have been doing it and curing themselves of various intestinal disorders and other conditions. Check out this informative article: https://www.webmd.com/digestive-disorders/news/201...
My challenge is finding and gaining access to a donor sample that I can use. But I'm working on it. This company (https://www.openbiome.org) in the U.S. provides doctors who treat patients with FMT with the safest donor samples. But you need a doctor to order it. I'm going to see if my doctor can do it for me!
Below is a link to an interesting article on other conditions that are being treated with FMT.
All I can say is: what a saga 2019 has been so far. Without question, it has been the most difficult, challenging, and emotionally draining year of my life. That says a lot given all the challenges I've already had to face in my 49 years which have all taken their toll, but none quite like the challenges I faced this year.
Having said all that, it's my birthday today, so I want to move on and write with a positive tone. I'm going to share some beautiful moments I've had as well as some recent good news with all of you!
• KRATOM - I FOUND SOMETHING THAT WORKS
My brother in law, David, who had a very similar neck fusion surgery to mine a year ago discovered something for managing pain that he passed on to me. It has changed my life. It's called "Kratom." It's similar to cannabis in that it is extracted from a plant (the botanical name is Mitragyna speciosa). It comes in three strains - one for general well being (GREEN), one for pain (RED), and one for stimulation and an energy boost (WHITE). This stuff really works!! And it works FAST. Within 15 minutes, I start to feel better - all my pain goes away.
There is a lot of controversy over it at the moment, but I can tell you that millions of people are benefiting from it. It's not been legalized for human consumption yet by the FDA, but like cannabis, people have been using it regardless of whether for not it's legal. My brother in law was able to go off his opioids overnight, and so was I! I've been off opioids now for three weeks - no more Nucynta or BelBuca. For me, it's proven to be much more effective than cannabis for controlling pain and anxiety. If you are interested, I buy my Kratom here: http://www.madamkratom.ca
• NEW THYROID MEDICATION
After seeing my doctor about five weeks ago, I switched to another form of Thyroid medication that my cousin Lisa was taking and recommended I try. It comes from desiccated pig or cow thyroids, and it was an overnight game-changer for me. I suddenly found myself having more energy and less chronic fatigue. I no longer start sweating profusely for no reason. I'm able to work physically and not break out in a sweat and have to stop and catch my breath every 5 minutes. It's really been incredible. Despite still coping with many other symptoms from other conditions such as Sjögren's syndrome, this has made such a difference in my quality of life. My wife still can't believe the change she has seen in me.
• THE FODMAP DIET
I recently adopted the FODMAP diet, and it has made a difference in my IBS. Symptoms have been much less severe. I have two reminder sheets on my refrigerator door. One that reads HIGH FODMAP FOODS and one that reads LOW FODMAP FOODS. So far, it's been helping!
• SOCIALIZING AGAIN
These latest improvements in my health have allowed me to do more and get out of the house to see people and socialize, something that had become virtually impossible. I was able to attend an annual family gathering on my wife's side of the family this past week, one that I missed last year because of my IBS). It was such a nice feeling to be around people, enjoying good company and good food in a lovely and cozy back porch setting. When you've been as sick as I have, it's the simplest pleasures that become so incredibly special. A couple of weeks ago, I was also able to go for coffee and spend an evening with our favorite neighbours Ray and Sherill. Again, it was just a simple basic pleasure that meant so much to me.
• THE BEST HAIR CUT I'VE EVER HAD
About four weeks ago, my son came over for a visit. He and I had previously talked about him using a clipper to shave the sides and back of my head to give me a more updated "2019" look, and we finally got around to doing it! My son cut my hair and did a fantastic job! My son has never cut anyone's hair before. This was a first for him. He morphed into a hairdresser right there on the spot! He was so attentive and meticulous; it was something to see. I can honestly say that it's the best haircut I've ever had! And, for the first time in my life, in keeping with the "style," I shaved off my Elvis sideburns! Sherrie took pics and recorded some video. Below are the before and after pics!
• GODPARENTS TO A MONARCH BUTTERFLY
On August 11th, we started watching over a caterpillar that turned into a chrysalis right before our eyes! Every day, we would come out to see how it was evolving. It took 16 days for it to emerge. It emerged last Tuesday, August 27th, which was Sherrie's grandmother's birthday. Her grandmother passed away many years ago, of course, but she still observes her birthday. The birth of the butterfly was a lovely way to commemorate it! Sherrie had named her "Mona" before she emerged, and it turned out to be a female Monarch!
I had set up a tripod and was lucky to capture the emerging process with time-lapse photography on my iPhone. They usually emerge midmorning, which is precisely when this one appeared, somewhere between 9 and 11 am. What probably took about one to two hours to record is condensed into a 30-second clip. It's amazing! As we ate our breakfasts out on the front porch, we watched as the Monarch took it's time to let its wings dry completely. It was preparing itself for its first-ever flight. I had to leave for an appointment, but Sherrie was able to stay with it until it finally flew away. It will be heading down to Mexico shortly to escape the cold weather. The monarch migration usually starts in about October of each year but can start earlier if the weather turns cold sooner than that. Monarch butterflies are the only insect that migrate to a warmer climate that is 2,500 miles away each year.
I’m seeing this caterpillar turning into a butterfly as a parallel to my current transformation. This past year, I’ve had no choice but to accept the changes that have occurred to my body over time and accept that I have, in a sense, become partially disabled and dependent. I’m using the nickname “Patrick 2.0” to represent that evolution.
Below are the photos showing the evolution of the chrysalis and a link to time-lapse photography video!
I have several friends who are also suffering from various chronic health issues as well as some who are also fighting cancer. They are facing some serious health problems, even life-threatening in one case. I think of them every day, and it helps me to cope. It doesn't change my situation, but it helps me keep things in perspective, which is what gets me out of bed every day. You know who you are. Thank you for inspiring me to keep on going.
Patrick 2.0 - Your Friendly Neighbourhood Bionic Man