"But, You Don't Look Sick"

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.

When I was in the beginning stages of the disease, I went to several doctors trying to figure out what was going on. Pain, diarrhea, pain, blood, pain, weight loss, oh yes, and pain. I agree could be a variety of issues, but it was focused on my gut. Having said that, there was at least one doctor who even after looking at test results, questioned that it might be all in my head.

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. 

Yes, that is 3, 3-inch, and 2, 2-inch binders. 

Come by and read all about my fake illness, including surgical notes and some pictures. 

I'll put the coffee on.

 

Artwork for Sale

Come take a look at some of my artwork transferred onto a large variety of products, from mugs and cups to skirts and shirts !! 

Artistslaine at Redbubble

Gutsy Walk 2021

 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

Slow and Steady......

 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.

A Different Kind of Christmas

 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.

Twas the Night Before a Crohnie Christmas

 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 version 

***warning: language***


‘Twas the night before a Crohnie Christmas, quiet as a mouse
Trying to get to the bathroom without disturbing the spouse.
The TP was hung by the toilet with care,
In hopes that I don’t run out whilst I sat there.

The children were nestled all snug in their beds,
I hope I’m not too loud lest I wake their sleepy heads.
And mamma in her ‘kerchief, and I in my cap,
But I had to get up, I needed to crap.

When out on the lawn there arose such a clatter,
I sprang from my throne to see what was the matter.
Away to the window I flew like a flash,
Still pulling up my underwear to cover my ass.

I live on the coast so there wasn’t any snow
Just dreary wet grass that I can see below.
When, what to my very tired eyes should appear,
But a miniature sleigh, and eight tiny reindeer.

A decrepit old driver, not lively or quick,
I knew in a moment it must be St Nick.
He didn’t look well, he must be inflamed,
But he whistled, and shouted, and called his reindeer by name!

"Now Crohns! Now, Colitis! Now, Pain and Grouch!
On, Abscess! On, Fistula! On, Ostomy and J-Pouch!
To the top of the porch! To the top of the wall!
Now dash away! Dash away! Dash away all!"

And then, in an instant, I heard on the roof,
The scratching and farting of that big, silly oaf.
As I drew in my head, and was turning around,
Down the chimney St Nicholas came with a bound.

He was dressed all in fur, from his head to his toe,
He looked very fatigued, he moved really slow.
A bundle of toys he had flung on my chair,
He looked in pain, it must be a flare.

His eyes, how they squinted! His face quite scary!
He let out a fart, not pleasant or airey!
His droll little mouth was drawn up like a bow,
I was getting prepared, he was gonna let another one go.

The bags under his eyes, I saw his fatigue
That comes from living with this dam Crohn's Disease.
He had a broad face, (must be the Prednisone),
If he didn’t hurry, he would soon need the throne.

He was chubby and plump, a right smelly old elf,
And I laughed when I saw him, in spite of myself!
The moon face, mood swings and twitch of the head,
Soon gave me to know it was for sure the Pred.

He spoke not a word, but went straight to the bathroom,
And filled my toilet with a splat! and a KABOOM!
And laying his fingers, covering his nose,
Giving a nod, up the chimney he rose!

He sprang to his sleigh, he now weighed so much less,
He thanked me and apologized for the big mess.
But when I heard him exclaim, I realized he knew my plight,
“I have Crohn’s Disease too, it’s going to be one HELL of a night!!”

Merry Christmas everyone, hopefully it is disease-free. At least for one day.

All the best for a happy and healthy 2021 !!!

-Vern

Ostomy Surgery - Take Two

 It'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.

Surgery Update

 After surgery and a little complication, I'm finally out of hospital, but at least I'm home now.

Surgery went well, so now I have a temporary ileostomy. We were going to do a permanent ileostomy and proctectomy but with active peri anal disease going on at the time, it was decided to drain and pack multiple abscesses and have a temporary loop ostomy. The proctectomy and permanent ostomy will be in another 4-6 months to make sure the fissures, fistulas and abscesses are gone. That's the plan anyway.

I'd like to thank all the doctors and nurses at the Royal Columbian Hospital for taking good care of me while inside.

It's taking some getting use to having a bag now, physically and mentally. I know it has/had to be done, but I realized that this is the final step in my long journey, or battle you might say, in fighting this disease. There is no other way to go. I have had Crohn's for 32 years now and 30 of those years dealing with peri anal disease. I had learned different techniques to mange the multiple fistula's and abscesses and they finally got the best of me. Now I wait to see if the re routing of my bowel will help ease the peri anal disease, then I can get the proctectomy and permanent ileostomy.

This will be my NEW "normal" and after all these years, I'll be starting all over again.

So, we turn yet another page and start a new chapter in my book of Life.

300,000 Views !!

 Noticed this morning that my blog has reached over 300,000 views!!

Thanks to everyone who has come by. Hopefully I was able to help in some way, even it was just to have a giggle. What started out as a diary for me has blossomed to what it is today, a place for everyone to either learn something new or for just to follow along on my long journey.

I cannot express enough my gratitude to all who have read my blog, thank you!!

On a side note, I am still awaiting a hospital bed for my surgeries. It's a weird feeling. I have never, in all my Crohn's years, had to walk in the front door of a hospital for surgery. For all my surgeries, I have already been in hospital through the ER and admitted through them. The wait is bothering me, but mentally, not physically. The longer I wait, the more I think about it. It sucks. I know it needs to be done, but try telling that to my head.

The wait continues....

Surgery Time !!

 Had my colonoscopy this morning by the colorectal surgeon. Everything went fine, but as usual, I don't remember leaving the hospital let alone talk with anyone. With new COVID measures in place, after my procedure, I was wheeled out of the hospital by a porter, so I don't remember talking with the nurses or the surgeon. Normally my wife is there and she can listen to the doctors and nurses with what happened and if anything was discovered.

Fast forward 4 hours later and I get a call from another hospital telling me they have my bed ready. Ummmm, what??  I mentioned that I just had my procedure and cant get to the hospital today, plus the fact I had no idea WHAT I needed to go for. They didnt know either, other than they were to secure a bed for me.  A few minutes later, I got a call from the surgeon.

She asked me if I remembered our conversation during the procedure. I told her that I dont even remember coming home. She laughed and said it is always strange to her because I was very lucid and was talking with her. Nope...dont remember.  Anyway, she couldnt get the scope past my small intestine because of inflammation and stricturing. Keep in mind, that I only have a rectum which my small intestine is attached, so that's not very far in. She mentioned because I "looked good" compared to when she saw me last, that she recommends the surgery sooner than later because I would tolerate the surgery better. Nope...dont remember that either.  She wants to get me into a bed even though the surgery probably wont be for a week or so. It's either that, or it wont be until the new year sometime. She was going to see if she can get me into the hospital by Monday or Tuesday so I had time to wrap my head around it because it was happening so fast. I agreed.

Now, of course, my head is spinning. So many things to do to prep. I have bills to pay over the next few weeks....done. Need to get my hospital bag updated and ready....done. I'm sure there's more I'm forgetting.

Now, if I can just get my HEAD ready for an ileostomy and proctectomy......