Came across this article from McMaster University.
McMaster University: Crohn's Research
Hopefully, this leads to better treatments and maybe the cure.
I've always wondered what triggered my Crohn's as I was healthy and athletic. Everyone I've talked to has all had different experiences, but all of us have the same question, "how the hell did I get it?" Maybe this is the beginning of the end.
Fingers crossed!
Thank you to everyone who visited my Redbubble account this past month, there were 99 visits, and especially to those who purchased items.
As promised, 100% of my profits went to Crohn's and Colitis Canada in the form of a donation through my Gutsy Walk campaign.
The Walk is on June 6, 2021, and this will be my third year walking and my first as an ostomate. At least I won't have to worry about rushing back to go to the washroom LOL.
Please come and participate on June 6 (virtually) and/or donate to the cause either through my campaign or someone else local to you.
Thank you !!!!
Exciting announcement !!
For the month of March, 100% of my profits from sales at my Redbubble account, will go to Crohn's and Colitis Canada in the fight for a cure.
You can find a wide variety of products with my artwork here:
Here are a few examples:
...... and so much more !! There are dozens and dozens of products
Just remember, 100% of my profits from sales, go towards finding a cure for IBD.
Help fight the fight, and thanks in advance.
~Vern
I know I've talked about this before. How people who either don't have a chronic illness, like Crohn's, know someone with a chronic illness or are a little ignorant, just don't understand. This covers a wide variety of people from friends, co-workers, employers, and even doctors.
Friends, or who I thought were friends at the time, some co-workers and even some employers use to say, "but you were fine yesterday" or "you don't LOOK sick". Not knowing or understanding, but assuming or insinuating that I was faking being sick. The fact that I was actually faking being well never dawned on them.
So to all those doubters for the past 33 years that I have been diagnosed and battling this "fake" disease, here is a picture of the 5 full binders of my health records.
Come take a look at some of my artwork transferred onto a large variety of products, from mugs and cups to skirts and shirts !!
It's been a long and hard 6 months struggling with my disease.
Multiple surgeries, kidney problems, and ostomy issues, but I'm alive and getting through it...slowly. But even with all that I'm dealing with physically and mentally, there are still many others who have IBD worse than me. I'm "lucky" to be considered a mild case.
It might be too late for me when it comes to a cure for crohn's or colitis, but we can still raise some money to help find that cure.
So again I'm participating in the Crohn's and Colitis Canada's Gutsy Walk, June 6, 2021 as part of Fraser Valley West.
Please click the link below to support my walk and help find the cure and raise awareness for IBD.
Vern's Gutsy Walk Donation page
Please help me find a cure and end the stigma.
~~Vern
There's that saying, "slow and steady wins the race", which may be true, but it is so frustrating.
So, for me, it's more than frustrating. I had my first surgery mid September for temporary ostomy which failed and caused further problems with my kidneys from the watery output. My GFR was down to 5 (normal LOW is 60) and was going into kidney failure. That ended me back into hospital for almost a month for my kidneys, making my ostomy permanent and a proctectomy (removing rectum and anus).
The slow part of my recovery after all of "this", is the proctectomy. It's taking way too long for my liking simply because of its location. Don't get me wrong, it's healing, just slow. On top of it all, I need to monitor my kidneys still and make sure I take in a lot of water every day. I get bloodwork every week to make sure, but they are still not up to 60. I drink a minimum of 4 liters of water everyday, but if I have watery output through my stoma (who I have nicknamed "Squirt"), I have to drink more to compensate.
It's coming along, slow and steady.
I am taking this "new year, new you" thing seriously this year.
I definitely am new.
2020 has made Christmas different this year, for me and for everyone.
Personally, 2020 will be remembered for my health. Not that it was bad, but a lot happened as far as trying to "fix" me. My colonoscopy results caused my GI to contact my surgeon to take a look. I needed to have another one months later and she was concerned enough to schedule surgery and finally give me the ostomy I was trying to avoid for my 32 years of Crohns. I was given a temporary ileostomy in September as well as peri anal abscess's removed in preparation for a permanent ostomy with proctectomy. That surgery was done in November after complications from the first surgery. I was in hospital for the month of November and am slowly recovering at home.
Christmas this year was different, but in a good way. For the first time in 32 years, I was able to actually enjoy Christmas dinner. I had a proper meal this year, I tried everything. I didn't have to pick through it. And you know what? I had no pain or discomfort. None. I have not had that feeling since I was 19 years old, Christmas of 1987. I'm 52 now. There were even years I just plain missed Christmas all together.
So with all the bad things happening in 2020, I will remember it for what I COULD do and not what I couldn't. My surgeon, Dr. Elena Vikis, a colorectal surgeon, was fantastic and a miracle worker. It took 6 hours, but she was able to separate what was left of my small bowel and lengthen it, giving me more to attach to the ostomy. Millimeter by millimeter, she separated it from the mass of bowel and scar tissue. I could eat my food again with no pain. I'm not afraid to eat anymore. Having an ostomy, named "Squirt", gave me my life back and yes, I think to myself, "why didn't I do this sooner?" I cant thank my surgeon and her team enough. It's still a long road to fully recover (the Barbie butt is taking longer than I expected), but I'm on the right road.
Squirt gave me my life back.
Every year for the past 15 years, I read "Twas the night before Christmas" to my kids on Christmas eve before they go to bed....
Here's the Crohn's Disease versionIt's been a hard few months, which is why I haven't posted since September and I apologize for that.
So, that last time I posted, I had had surgery for removal of a couple of peri anal abscesses and a temporary loop ostomy done. A lot has happened since then.
I was having too much output from my ostomy and I was becoming very weak, throwing up, dizzy and light headed. I requested my family doctor for some blood work because obviously something was not right. I got it done on the Friday before Halloween in the afternoon and by Saturday morning, my doctor called and told me to get to the hospital ASAP as I was in acute renal failure and there was a chance my kidneys could shut down. It was a scary thought and strange as I was not having any symptoms for renal failure, that I knew of anyway. No kidney pain, I was still urinating, clear flow, no fever or chills, I was drinking lots, nothing. My Creatinine levels after the blood work was 1068, normal is 45-110 and my GFR was 5, normal is 60-100. I had my wife call an ambulance. More bloodwork was done in the ER and my levels dropped more. I was so tired and worn out, I could barely move.
Two days later, my surgeon had me transferred to her hospital to tackle my kidneys and then have my final surgeries, make my ostomy permanent as well as a proctectomy (Barbie butt). It took about 10 days for my kidneys to recover to a point the doctors were happy enough for the surgery to go ahead. A lot of water and IV fluids. My surgery was set for November 13..... Friday the 13th.
Surgery went well, although it was over 6 hours. She was able to release some matted small bowel that was secured to my pelvic wall with scar tissue for previous surgeries. This gave me more length to help the ostomy. My rectum was removed and she found it was full of a pus like material most likely because of 30 years with peri anal disease. She did mention to me that looking through the small intestine I have left, she only found 2 inches of diseased bowel, so some good news. It was a very long surgery and was given 6 pints of blood, which I don't think I have ever had that much ever with all my surgeries. The ostomy was moved from the left side (temporary loop) to the right side. I have more scars added to my collection now with the temporary ostomy removed, vertical scar through my belly button beside my old scar and numerous laparoscopic scars.
I needed to stay in recovery for 3 days because of low blood pressure. They moved me to the HICU after 24 hours and remained there another couple of days before moving me back up to the ward. The hospital allowed my wife come visit me while in recovery which was very nice. With COVID restrictions, visitors are not allowed and she needed permission to visit. For some reason, I wasn't given an NG tube so of course after a couple of days I was throwing up bile...a lot of it. Back up in the ward, the dreaded NG tube had to be inserted. I don't normally have good experiences with the NG being inserted after surgery, but they gave me a smaller more flexible and it went in just fine, no problem, but still uncomfortable in my throat.
Slowly, and I mean slowly, I started to recover. Its taken longer than I expected but the proctectomy is taking forever to heal. Twenty seven days in hospital for this surgery and as of today, 19 days recovering at home. Every day is frustrating with one thing or another, whether that be my butt or the bag leaks. The flange leaks on either side with belly button on one side and an old scar on the other, very challenging. Another challenge is my kidneys. I have blood work once a week and my GFR and Creatinine have dropped, even though I drink a ton of water....apparently not enough. It's gone up in the right direction lately but the doctors are monitoring it carefully. I don't want to go back to before.
It's been a long 3 months so far, including my first surgery back in September, and I hope it's not another 3 months in recovery. Fingers crossed for a complication-free recovery.