July 25, 2012... The first day of Remicade infusion, tired, fatigued, underweight (150 lbs), multiple fistulas and eager to get going.
Fast forward 6 years...53rd infusion, more energy, ideal weight (170 lbs), still one irritating fistula, but not nearly as bad, and still eager to keep it going.
My weight has finally stabilized and I weigh the same now that I did 30 years ago before I got sick. The only difference is the way its distributed throughout my body...LOL...
I used to have it well distributed being a figure skater (legs, arms, butt, etc) now its more around the waist, but I am working on that with a trainer getting my core back and adding muscle (maybe get my butt back) Crohn's tends to take all the muscle once it's done with the fat. I remember at my worst I weighed 120 lbs.
All in all, I am glad I decided to take the plunge and start Remicade, its worked wonders for me. It may not work for everyone and one day it might stop working for me, but in the meantime, I'm trying to take full advantage!
Thursday, July 5, 2018
Thursday, June 28, 2018
Happy 30th Crohniversary !!
It was 30 years ago this month, in 1988, that I was diagnosed with Crohn's Disease and it's definitely been a roller coaster ride.
I've actually had Crohn's for more than 30 years because I was having symptoms long before and took many months for doctors to come up with a diagnosis. And yes, doctors, not doctor. Finally the last doctor was able to diagnose it because he had another patient with the same symptoms etc. It was soon after that I was in hospital for surgery to remove some of my bowel and so my life took a left turn and went in a totally different direction than I thought it would.
One surgery lead to two, then three and now I've lost count the amount of times I've been in for surgery for one thing or another related to Crohn's. Resections, kidney stones, abscess's, fissure's, fistula's, the list keeps growing. I tried all kinds of meds, some worked, some didn't but eventually found a good combination that kept things stable...for awhile. I've been from a healthy 170 lbs on a 5' 10" frame before Crohn's, to a low of 115 lbs at my worst. I've had friends come and go, mainly go, but the good ones stayed. I've had too many different jobs because I couldn't work. It took everything I had to just get up in the morning, or just to "move". I've even been to that dark place in your mind where you just want to give up.
Today? Well I haven't really had any surgeries for a long time, I'm on one medication (Remicade) every 6 weeks, I'm a stable 168 lbs, I still have the good friends and made some new ones (mainly through the IBD network), I've worked for the same company for 14 years now. I have most, but not all, of my energy back and am working out. There are still good days and bad days, but that's with anyone I think. I'm been married for 16 years to a wonderful woman who didn't seem to flinch when I told her about my condition soon after we went on our first date. We have 2 boys now and yes, it crosses my mind all the time whether they will get Crohn's, especially when they come to me or my wife with a "tummy ache". My mind has not looked back towards the dark.
To think, when I was diagnosed, the World Wide Web wasn't around yet. Today, because of social media, those of us living with Crohn's or Colitis, have access to so much information, support groups and access to others with the same disease. There's lots of support, not only locally but from around the world !
There's no reason to be alone anymore.
I've actually had Crohn's for more than 30 years because I was having symptoms long before and took many months for doctors to come up with a diagnosis. And yes, doctors, not doctor. Finally the last doctor was able to diagnose it because he had another patient with the same symptoms etc. It was soon after that I was in hospital for surgery to remove some of my bowel and so my life took a left turn and went in a totally different direction than I thought it would.
One surgery lead to two, then three and now I've lost count the amount of times I've been in for surgery for one thing or another related to Crohn's. Resections, kidney stones, abscess's, fissure's, fistula's, the list keeps growing. I tried all kinds of meds, some worked, some didn't but eventually found a good combination that kept things stable...for awhile. I've been from a healthy 170 lbs on a 5' 10" frame before Crohn's, to a low of 115 lbs at my worst. I've had friends come and go, mainly go, but the good ones stayed. I've had too many different jobs because I couldn't work. It took everything I had to just get up in the morning, or just to "move". I've even been to that dark place in your mind where you just want to give up.
Today? Well I haven't really had any surgeries for a long time, I'm on one medication (Remicade) every 6 weeks, I'm a stable 168 lbs, I still have the good friends and made some new ones (mainly through the IBD network), I've worked for the same company for 14 years now. I have most, but not all, of my energy back and am working out. There are still good days and bad days, but that's with anyone I think. I'm been married for 16 years to a wonderful woman who didn't seem to flinch when I told her about my condition soon after we went on our first date. We have 2 boys now and yes, it crosses my mind all the time whether they will get Crohn's, especially when they come to me or my wife with a "tummy ache". My mind has not looked back towards the dark.
To think, when I was diagnosed, the World Wide Web wasn't around yet. Today, because of social media, those of us living with Crohn's or Colitis, have access to so much information, support groups and access to others with the same disease. There's lots of support, not only locally but from around the world !
There's no reason to be alone anymore.
Monday, June 18, 2018
Special Thanks !!
I wanted to give a special "Thanks!" to Benjamin Nash Design for the great logo for my blog.
He was great to work with and easy to bounce ideas off.
If you're looking for logo work I highly recommend Ben.
Thanks again for your help and the work done!
He can also be found on Instagram @benjaminnashdesign
He was great to work with and easy to bounce ideas off.
If you're looking for logo work I highly recommend Ben.
Thanks again for your help and the work done!
He can also be found on Instagram @benjaminnashdesign
Wednesday, June 13, 2018
You Might Be A Crohnie...
If you have tried every brand of toilet paper and can rate them by heart
...you might be a Crohnie
...you might be a Crohnie
Tuesday, June 5, 2018
You Might Be A Crohnie...
If you begin to recognize phone numbers written on the public toilet walls
... you might be a Crohnie
.
... you might be a Crohnie
.
Monday, May 21, 2018
Crohn's Obituary
In honor of World IBD Day, I am reposting my Crohn's obituary for the day IBD is cured.....
Crohn’s Disease, prominent bowel disease, died last night from complications of losing his soul mates Ileitis and Colitis. No one is really sure of his age, but according to written records, he was over 86 years old.
Crohn’s Disease, prominent bowel disease, died last night from complications of losing his soul mates Ileitis and Colitis. No one is really sure of his age, but according to written records, he was over 86 years old.
Asked about the loss of his dear friend, IBS, the soon to be obsolete and forgotten disease, described Crohn’s as complicated and was looked up to by other diseases of the body for his wide range of symptoms.
In the final days of his life, he revealed an unknown side of his psyche. This hidden quasi-Freudian persona surfaced in the super-ego-like pursuit of his desire to be the number one disease.
Sadly, the protracted search ended early Monday morning in complete and utter failure. Yet even in certain defeat, the courageous Crohn’s secretly clung to the belief he was to live forever.
He is survived by IBS but has also come to the realization that soon another obituary will be written about him and will only survive in the pages of old medical journals.
Wednesday, May 16, 2018
World IBD Day is May 19
Many of us know that 19 May 2018 is World IBD Day.
Bringing awareness to IBD, Crohns and Colitis is another step closer to a cure and ending the stigma associated with the disease.
World IBD Day
Bringing awareness to IBD, Crohns and Colitis is another step closer to a cure and ending the stigma associated with the disease.
World IBD Day
Friday, May 11, 2018
Crohn's Baby
Wednesday was like any other day. It's my regular day off, went to the gym, ran errands, cleaned around the house, ate dinner and took my son to taekwondo class.
After dinner though, I started to feel tightness in my abdomen, not out of the ordinary but a little different than normal. It was bad enough that I had to lay down in the car while my son practiced. After getting home and getting ready for bed, the tightness was worse. I took a look in the mirror and there it was....... my Crohn's baby.
My abdomen was so distended and tight, I looked pregnant. I tried my normal procedures like laying on my stomach in hopes to maybe relieving the pressure by passing gas....didnt work. I tried having bowels movements (as it felt like I had to go)....didnt work. I was up and down, up and down, up and down from bed to bathroom for hours before I finally had to give in to what was happening to me.
I had a block.
On one of my trips to the bathroom I started throwing up while I sat on the toilet. That continued throughout the night and into the morning until there was nothing left to throw up. Definitely a block in MY experience. Not sure how....but there it is.
Now was the question, do I go to hospital? I need my intestines to rest and the best way is with an IV. I decided to stay home and not eat but just drink water and tea and stay in bed to rest. That seemed to work. Later that night, whatever was causing the block, released. I took over 24 hours, but it felt so much better after that. I am still sore, but the pain is gone.
It's been years since I've had a Crohn's baby, I hope its years more before I have to experience it again.
After dinner though, I started to feel tightness in my abdomen, not out of the ordinary but a little different than normal. It was bad enough that I had to lay down in the car while my son practiced. After getting home and getting ready for bed, the tightness was worse. I took a look in the mirror and there it was....... my Crohn's baby.
My abdomen was so distended and tight, I looked pregnant. I tried my normal procedures like laying on my stomach in hopes to maybe relieving the pressure by passing gas....didnt work. I tried having bowels movements (as it felt like I had to go)....didnt work. I was up and down, up and down, up and down from bed to bathroom for hours before I finally had to give in to what was happening to me.
I had a block.
On one of my trips to the bathroom I started throwing up while I sat on the toilet. That continued throughout the night and into the morning until there was nothing left to throw up. Definitely a block in MY experience. Not sure how....but there it is.
Now was the question, do I go to hospital? I need my intestines to rest and the best way is with an IV. I decided to stay home and not eat but just drink water and tea and stay in bed to rest. That seemed to work. Later that night, whatever was causing the block, released. I took over 24 hours, but it felt so much better after that. I am still sore, but the pain is gone.
It's been years since I've had a Crohn's baby, I hope its years more before I have to experience it again.
Tuesday, May 1, 2018
Sunday, April 29, 2018
All Aboard The Crohn's Train
It's amazing to see how social media has helped people you are in need.
Take Crohn's Disease, or IBD in general, for example. I was diagnosed 30 years ago in 1988, but like many, I started having symptoms months before and even took different doctors to figure it out. The doctor that DID figure it out only really knew because he had another patient that was experiencing similar symptoms. I had never heard of Crohn's and neither had my family or friends and you have to remember, this was BEFORE the world wide web was even out yet. You couldnt just go online and look it up. I had to go to the library and research in a book....when I was well enough to get to the library.
Fast forward 30 years and there are web pages, blog pages, vlogs, etc. out there with a ton of information. Facebook, Twitter, Instagram, etc. help others living with the disease connect talk and share experiences. Many great organizations directly involved with IBD and chronic illnesses, ALL with a keystroke. It's great. Though, with all this comes the snake oil salesmen who claim they have THE cure for Crohn's. I hate to tell them but there is no cure until they find the cause. As many of us have many many different symptoms, there is no one "cure all". They still have to find the trigger, that's the key, in my opinion.
I remember being feeling so isolated and alone suffering though the pain and embarrassment of the disease. Got strange looks from people because of the drastic weight loss, having been asked by a stranger once if I had AIDS. Suicide crossed my mind many, many times.
Things I post online, either on this blog or elsewhere, is what MY experience has been. It might not work for others and if it helps....great! If not, well thats great too because then you know what NOT to do..... for you. Many praise certain diets that put them into remission, which again, is great.....for them, but not for me. Juicing for example. I can't do juicing as it goes right through me, but for others, they have no problems. You need to have trial and error t figure it out....for you.
I like to relate it to this...
All of us are riding the "Crohn's Train" heading towards "Cure Town" and each train car is a different symptom of the disease and within that are different levels of severity.
It makes for a very long and tall train filled with some great people willing to help and support one another.
Take Crohn's Disease, or IBD in general, for example. I was diagnosed 30 years ago in 1988, but like many, I started having symptoms months before and even took different doctors to figure it out. The doctor that DID figure it out only really knew because he had another patient that was experiencing similar symptoms. I had never heard of Crohn's and neither had my family or friends and you have to remember, this was BEFORE the world wide web was even out yet. You couldnt just go online and look it up. I had to go to the library and research in a book....when I was well enough to get to the library.
Fast forward 30 years and there are web pages, blog pages, vlogs, etc. out there with a ton of information. Facebook, Twitter, Instagram, etc. help others living with the disease connect talk and share experiences. Many great organizations directly involved with IBD and chronic illnesses, ALL with a keystroke. It's great. Though, with all this comes the snake oil salesmen who claim they have THE cure for Crohn's. I hate to tell them but there is no cure until they find the cause. As many of us have many many different symptoms, there is no one "cure all". They still have to find the trigger, that's the key, in my opinion.
I remember being feeling so isolated and alone suffering though the pain and embarrassment of the disease. Got strange looks from people because of the drastic weight loss, having been asked by a stranger once if I had AIDS. Suicide crossed my mind many, many times.
Things I post online, either on this blog or elsewhere, is what MY experience has been. It might not work for others and if it helps....great! If not, well thats great too because then you know what NOT to do..... for you. Many praise certain diets that put them into remission, which again, is great.....for them, but not for me. Juicing for example. I can't do juicing as it goes right through me, but for others, they have no problems. You need to have trial and error t figure it out....for you.
I like to relate it to this...
All of us are riding the "Crohn's Train" heading towards "Cure Town" and each train car is a different symptom of the disease and within that are different levels of severity.
It makes for a very long and tall train filled with some great people willing to help and support one another.
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