Opening the bathroom stall door to find:
the book "10,000 Excuses NOT To Attend An Event Because of Your IBD: Volume 2"
See you tomorrow for the next door.
Monday, December 2, 2019
Sunday, December 1, 2019
Crohns Advent Calendar : Day 1
And here we are once again, hard to believe it's been a year already.
It's the Crohn's advent calendar, let's see what there is this year, shall we....
Opening the bathroom stall door to find:
Toilet paper !!
See you tomorrow for the next door.
It's the Crohn's advent calendar, let's see what there is this year, shall we....
Opening the bathroom stall door to find:
Toilet paper !!
See you tomorrow for the next door.
Friday, November 29, 2019
Remicade Divorce
Well, it's over.
8 good years have come to an end.
It's been a little rocky this past year, I'll have to admit, but the decision has been made.
We're done.
The final straw was my last visit to the hospital for surgery on another peri anal abscess, but my colonoscopy last October already showed the tell tale signs of my body becoming immune to the Remicade (Infliximab). My gastro told me that she saw "significant" ulceration even though my Remicade levels were pretty good. I have noticed these past few months that I have not been 100%, tired all the time, no energy what's so ever.
So, what's next for me and my crohn's? Humira (Adalimumab). I have never had to inject myself before, so it should be interesting.
All this comes at a time where I would have to come off Remicade anyway as the government is forcing everyone on Remicade to switch to a biosimilar, for no medical reason what so ever. It's all about money and not what the individual patient needs. No consultation with doctors or patients, just switching them. The government set a deadline and the companies taking over the treatments are NOT prepared and are overwhelmed with the amount of patients. This was not thought out very well.
In my case now, Humira, even though it is a biologic, does not fall under the governments "decree'.
I have to start all over again with tests, talking with Humira, Pharmacare, etc. I need to find out if I'm covered or if it's going to cost me. I've done everything else, now just waiting to hear about coverage, fingers crossed.
I do like the fact I don't need to go to a clinic anymore and I can have the Humira delivered to my house. I'm sure injecting myself will be something I need to get use to, but you have to do what you have to do to survive in this world.
My first injection should be end of December beginning of January.
Great way to bring in the new year.....
8 good years have come to an end.
It's been a little rocky this past year, I'll have to admit, but the decision has been made.
We're done.
The final straw was my last visit to the hospital for surgery on another peri anal abscess, but my colonoscopy last October already showed the tell tale signs of my body becoming immune to the Remicade (Infliximab). My gastro told me that she saw "significant" ulceration even though my Remicade levels were pretty good. I have noticed these past few months that I have not been 100%, tired all the time, no energy what's so ever.
So, what's next for me and my crohn's? Humira (Adalimumab). I have never had to inject myself before, so it should be interesting.
All this comes at a time where I would have to come off Remicade anyway as the government is forcing everyone on Remicade to switch to a biosimilar, for no medical reason what so ever. It's all about money and not what the individual patient needs. No consultation with doctors or patients, just switching them. The government set a deadline and the companies taking over the treatments are NOT prepared and are overwhelmed with the amount of patients. This was not thought out very well.
In my case now, Humira, even though it is a biologic, does not fall under the governments "decree'.
I have to start all over again with tests, talking with Humira, Pharmacare, etc. I need to find out if I'm covered or if it's going to cost me. I've done everything else, now just waiting to hear about coverage, fingers crossed.
I do like the fact I don't need to go to a clinic anymore and I can have the Humira delivered to my house. I'm sure injecting myself will be something I need to get use to, but you have to do what you have to do to survive in this world.
My first injection should be end of December beginning of January.
Great way to bring in the new year.....
Wednesday, November 27, 2019
Peri Anal Adventure
Let me start by saying:
Peri anal disease (fissures, fistulas and abscesses) are a pain in the ass!! 😄
In my 31 years living with Crohn's, 29 of those years have been dealing with peri anal disease.
Twenty nine years of not being able to sit down like a "normal" person.
To say that I am sick and tired of this disease is an understatement, to say the least.
Let me tell you how the past couple of weeks have been for me.
I started to have problems on November 15 when I started having pain and an abscess form between my anus and scrotum. Not my "usual" place for abscessing, so right away I knew something was wrong. Normally, I get them lower and on either side and they would drain on their own, so when this one wasn't usual, I started to worry.
Now, I'm bit of a procrastinator, so I, of course, will wait until it drains on it's own (snicker).
Deep down I knew I should probably head to the ER and have it drained, but experience tells me, it's a Friday and Friday's and Saturday's are some of the worst times to go.... so I wait.
I stopped eating so to avoid going to the bathroom and just laid in bed, but even then, good luck trying to find a comfortable position. Of course as soon as I find that position, I have to get up, or move, or something. The pain from the pressure is getting to the point that anything touching the abscess, even the air itself, brings a tear. It would be nice NOT to be wearing underwear, but, well, I have to.
It's now Sunday the 17th and it's clear that the abscess is not going to get better nor will it drain without help. Having said that, I STILL procrastinated about heading out to the ER, but around 11 am my mother in law (who was already at the house for something else) agreed to take me. I got on my "hospital gear" which consists of track pants and T-shirt and removed my wedding ring. My track pants have a rear zipper pocket which is where I keep my phone and medical card, cuz that's all you need.
I had to lay down in the back seat for the 10 minute journey and popped my head up when we got there to see how busy it was in the waiting room. Luckily you can see it from the road. 1, 2, 3....8, not too too bad so I got out to check in. I had to bend down at the registration desk instead of the chair and explained why I was there. Got my wrist band and told to wait. I stood in the far corner "trying" to stay somewhat comfortable leaning against the wall waiting for my name to be called to triage.
Not too long of a wait, about 20 minutes before I was called. Got my blood pressure checked, temperature and pulse and explained again, in more detail, what was going on. The nurse looked genuinely concerned and asked if I normally had low blood pressure and high heart beat.... nope.
She directed me to a third window for registration and I waited about 5-10 minutes before they called me in to beds, thank god they had one for me because laying down was the only comfortable position. Got changed, laid down and waited.
Two hours later, a lab tech came by for blood work even before seeing a doctor, which took another hour. It's been 4 years since I have been to the ER and which doctor comes through the curtain, but the same one from 4 years ago. He had a look and you never want to hear the doctor say "hmmm, well THAT's interesting". He was reacting to the location of the abscess as it looks as though this one had tracked up from the ones lower down closer to my actual butt instead on where it is now pushing up on my scrotum. Right away he has to touch it, the abscess, not my scrotum, LOL...and I had to jump because it's sensitive to the touch. He said that he want to get an ultrasound done and recommended I get IV pain meds first, cuz it's going to hurt. Had to totally agree, no argument here.
Now, I know I hadn't been in awhile but they didn't bring my normal Morphine/Gravol mix, nope, they brought Tramadol/Gravol mix. I told the nurse that I have never had Tramadol before and he said it's better and faster than Morphine and boy was he right! Felt it immediately. I'm not one for pain meds because I don't like how they make me feel but I knew I'm going to need it for what's going to come.
I got wheeled down in the bed to the imaging and had my ultra sound. Not too too bad actually, but the technician had to call the radiologist in, so there I am spread eagled on the bed while now 2 people scan my privates. All I really cared about is what the radiologist said and that was "it looks like just a pocket of fluid" , which is what I had hoped. I did my best to clean up all the gel which is hard to do on a good day, let alone a bad day and in weird places you never thought you would ever get gel. Wheeled back down to the ER department now to wait for the doctor to look.
The doctor came back to tell me that he has referred me to a surgeon, but he's in the OR right now and will come down when done. He would have done it himself with conscious sedation right there, but still wasn't comfortable with the abscess's location just in case something went wrong. I understood and thanked him.
The surgeon finally came down to see me, I have now been in the ER for 9 hours, and he agreed the OR would be a better place to get this done. Signed the paperwork and within minutes I was up to the OR. Did the typical discussion with the OR nurse and the anesthetist and off into the room to hook me up with the good stuff and a nice sleep.
Woke up and the pain was gone....thanks goodness...but now have pain from the surgery. Now comes the question, what did he do? Did he just cut and drain? Did he cut away more? It's all taped up so I can't tell. Luckily, I was in a room right next to the bathroom which is always nice. Needed some pain meds, but only once. Sleepless night, I never could sleep in hospitals plus I was up to the bathroom frequently as my intestines start to work again.
Surgeon came by later that day around noon and let me know it was about 40 minutes in surgery and he cut, drained and packed the area, but he didn't find anything "extra" to be concerned about. It appeared to just be a pocket of fluid which when tested, came back negative for bacteria, etc. I could take the packing out myself the next day and doesn't need re packing. Turns out, the packing came out on its own the following day anyway.
It's now over a week post surgery and everything is working fine and "back to normal". It's still a little uncomfortable to sit and my energy level is very low, I have to rest more than I like, but the pain is gone.
This just goes to show that crohn's will pop up in some form just to let you know that it's still there. For me, it's been 4 years since my last hospital visit and maybe my crohn's was giving me a little nudge to say, dont forget about me.
I never will, I never will.
Peri anal disease (fissures, fistulas and abscesses) are a pain in the ass!! 😄
In my 31 years living with Crohn's, 29 of those years have been dealing with peri anal disease.
Twenty nine years of not being able to sit down like a "normal" person.
To say that I am sick and tired of this disease is an understatement, to say the least.
Let me tell you how the past couple of weeks have been for me.
I started to have problems on November 15 when I started having pain and an abscess form between my anus and scrotum. Not my "usual" place for abscessing, so right away I knew something was wrong. Normally, I get them lower and on either side and they would drain on their own, so when this one wasn't usual, I started to worry.
Now, I'm bit of a procrastinator, so I, of course, will wait until it drains on it's own (snicker).
Deep down I knew I should probably head to the ER and have it drained, but experience tells me, it's a Friday and Friday's and Saturday's are some of the worst times to go.... so I wait.
I stopped eating so to avoid going to the bathroom and just laid in bed, but even then, good luck trying to find a comfortable position. Of course as soon as I find that position, I have to get up, or move, or something. The pain from the pressure is getting to the point that anything touching the abscess, even the air itself, brings a tear. It would be nice NOT to be wearing underwear, but, well, I have to.
It's now Sunday the 17th and it's clear that the abscess is not going to get better nor will it drain without help. Having said that, I STILL procrastinated about heading out to the ER, but around 11 am my mother in law (who was already at the house for something else) agreed to take me. I got on my "hospital gear" which consists of track pants and T-shirt and removed my wedding ring. My track pants have a rear zipper pocket which is where I keep my phone and medical card, cuz that's all you need.
I had to lay down in the back seat for the 10 minute journey and popped my head up when we got there to see how busy it was in the waiting room. Luckily you can see it from the road. 1, 2, 3....8, not too too bad so I got out to check in. I had to bend down at the registration desk instead of the chair and explained why I was there. Got my wrist band and told to wait. I stood in the far corner "trying" to stay somewhat comfortable leaning against the wall waiting for my name to be called to triage.
Not too long of a wait, about 20 minutes before I was called. Got my blood pressure checked, temperature and pulse and explained again, in more detail, what was going on. The nurse looked genuinely concerned and asked if I normally had low blood pressure and high heart beat.... nope.
She directed me to a third window for registration and I waited about 5-10 minutes before they called me in to beds, thank god they had one for me because laying down was the only comfortable position. Got changed, laid down and waited.
Two hours later, a lab tech came by for blood work even before seeing a doctor, which took another hour. It's been 4 years since I have been to the ER and which doctor comes through the curtain, but the same one from 4 years ago. He had a look and you never want to hear the doctor say "hmmm, well THAT's interesting". He was reacting to the location of the abscess as it looks as though this one had tracked up from the ones lower down closer to my actual butt instead on where it is now pushing up on my scrotum. Right away he has to touch it, the abscess, not my scrotum, LOL...and I had to jump because it's sensitive to the touch. He said that he want to get an ultrasound done and recommended I get IV pain meds first, cuz it's going to hurt. Had to totally agree, no argument here.
Now, I know I hadn't been in awhile but they didn't bring my normal Morphine/Gravol mix, nope, they brought Tramadol/Gravol mix. I told the nurse that I have never had Tramadol before and he said it's better and faster than Morphine and boy was he right! Felt it immediately. I'm not one for pain meds because I don't like how they make me feel but I knew I'm going to need it for what's going to come.
I got wheeled down in the bed to the imaging and had my ultra sound. Not too too bad actually, but the technician had to call the radiologist in, so there I am spread eagled on the bed while now 2 people scan my privates. All I really cared about is what the radiologist said and that was "it looks like just a pocket of fluid" , which is what I had hoped. I did my best to clean up all the gel which is hard to do on a good day, let alone a bad day and in weird places you never thought you would ever get gel. Wheeled back down to the ER department now to wait for the doctor to look.
The doctor came back to tell me that he has referred me to a surgeon, but he's in the OR right now and will come down when done. He would have done it himself with conscious sedation right there, but still wasn't comfortable with the abscess's location just in case something went wrong. I understood and thanked him.
The surgeon finally came down to see me, I have now been in the ER for 9 hours, and he agreed the OR would be a better place to get this done. Signed the paperwork and within minutes I was up to the OR. Did the typical discussion with the OR nurse and the anesthetist and off into the room to hook me up with the good stuff and a nice sleep.
Woke up and the pain was gone....thanks goodness...but now have pain from the surgery. Now comes the question, what did he do? Did he just cut and drain? Did he cut away more? It's all taped up so I can't tell. Luckily, I was in a room right next to the bathroom which is always nice. Needed some pain meds, but only once. Sleepless night, I never could sleep in hospitals plus I was up to the bathroom frequently as my intestines start to work again.
Surgeon came by later that day around noon and let me know it was about 40 minutes in surgery and he cut, drained and packed the area, but he didn't find anything "extra" to be concerned about. It appeared to just be a pocket of fluid which when tested, came back negative for bacteria, etc. I could take the packing out myself the next day and doesn't need re packing. Turns out, the packing came out on its own the following day anyway.
It's now over a week post surgery and everything is working fine and "back to normal". It's still a little uncomfortable to sit and my energy level is very low, I have to rest more than I like, but the pain is gone.
This just goes to show that crohn's will pop up in some form just to let you know that it's still there. For me, it's been 4 years since my last hospital visit and maybe my crohn's was giving me a little nudge to say, dont forget about me.
I never will, I never will.
Thursday, November 14, 2019
You Might Be A Crohnie
If you would rather stand that sit down in one of those hard, pain inducing, tear jerking, torture chambers for your ass at your doctor's office....
you might be a Crohnie
you might be a Crohnie
Tuesday, November 12, 2019
You Might Be A Crohnie
If you know the difference between fistulating and nonfistulating perianal disease...
you might be a Crohnie
This is me today and the past few days...not been a pleasant or comfortable this week ðŸ˜
you might be a Crohnie
This is me today and the past few days...not been a pleasant or comfortable this week ðŸ˜
Tuesday, October 29, 2019
IBD Survey
The Gastrointestinal Society, badgut.org , is conducting a survey called,
IBD Patients: What's Missing In Your Care?
They are looking for IBD patients of all forms and their experiences and opinions to help shape future programming for patients
Please click here https://badgut.org/ibd-survey-2019/ and help
Thanks!!
IBD Patients: What's Missing In Your Care?
They are looking for IBD patients of all forms and their experiences and opinions to help shape future programming for patients
Please click here https://badgut.org/ibd-survey-2019/ and help
Thanks!!
Saturday, October 26, 2019
You Might Be A Crohnie...
If you can suffer from Crohn's disease, peri anal disease, kidney stones, psoriasis, fatigue, dehydration, malnutrition, and depression and STILL get up everyday looking as fresh as a daisy
...you might be a Crohnie
...you might be a Crohnie
Thursday, October 24, 2019
Crohn's Disease in the Workplace
I am happy to have helped with this article from Antidote along with Matt Strutt from Give Crohn's a Slap From Me and Natalie Hayden from Light's, Camera, Crohn's
https://www.antidote.me/crohns-disease-in-the-workplace
Thanks to Nancy Ryerson from Antidote for the article and the ease of communication.
.
https://www.antidote.me/crohns-disease-in-the-workplace
Thanks to Nancy Ryerson from Antidote for the article and the ease of communication.
.
Friday, October 11, 2019
My Date With The Flexible Camera
I had my annual colonoscopy last week and looking back, it's almost like having a first date.
It's not like a normal colonoscopy because, well, I don't have much colon left...about 6 inches, so it's more of a flexible sigmoidoscopy with sedation.
My "date" was on a Wednesday, so I started to prep on the Monday prior by starting to fast. I had breakfast that morning but then nothing except water or broth for the rest of the time. Drastic? Maybe, but I wanted to look good.... my colon that is. I found after all these years, not eating is easier than taking the disgusting colon prep. The day before, I take two Dulcolax, just in case there's anything left cuz by now, it's just water coming out.
My test isn't until the afternoon, so I have what I'm going to wear laid out. I'm going for minimalism today, t-shirt and track pants, mainly so I don't have a lot to take off when I get there. No accessories except for my drivers license (because it has my medical number on it) and one ski glove. Ski glove, you might ask? Yes. I normally have the IV put into my left hand, so I heat my hand before heading out, then slide the glove on. Keeps my veins nice and big.
After getting dressed, I now just wait for my ride. I can't drive because of the sedation, conscience sedation. Not sure why they call it that, cuz I never remember anything until the next day.
I get to the outpatient clinic, check in and usually only wait less than 5 minutes. It's like I've arrived at the restaurant and waiting for my table. The nurse calls my name and I head to my chair where she goes over my name, birth date and why I'm there. She tells me to take everything off except my socks and shoes....moving a little fast for my liking LOL...and slip into the little blue number she's laid out for me. She said she'd be back with my IV, like I've just made a drink order, and covered my hands in a warm blanket. There's 3 other people sitting waiting, all of us dressed the same, but I always find it amusing. Sitting in the big comfy recliners, little blue "dress", socks and shoes and holding your belongings in a cloth bag. For me though, I'm all that PLUS my big black ski glove on the left hand...sexy! The nurse comes back with my IV "order" and asks me my name, birth date again and then sits down to do my IV....in my right hand! She explained they needed my right hand because I would be laying on my left side. Oh well, at least my left hand veins were poppin' ! No worries, at least she did a good job and the IV slid right in no problem, now it was just sitting and waiting for my name to be called. I never bring my phone or anything just in case someone makes off with it. I never expect to get in on time. After all these years, I don't think I've ever had a test that was on time, so why fret over it. It was about 30-35 minutes later another nurse came and called my name and verified my name and birth date...again. We walked down to the room where my Dr. was sitting reviewing her notes on the computer about me. There were three other nurses in the room prepping everything while I undid my little blue gown and laid on the table, had electrodes stuck to my body, finger pulse attached, all the while "chit-chatting" with my Dr. I've had my gastroenterologist for 30 years so the conversations are always light hearted, but this time she was discussing how I will need to switch from a biologic (Remicade, Infliximab) to a biosimilar (Inflectra, Renflexis) because the Government "said so". It's a touchy subject for me and one of the nurses knew it because my heart rate went up talking about it. After all the chit chat, the Dr was ready for my meds. I always ask for lots, because I dont want to remember anything. She started injecting the first one...there are 3... and tells me to relax and not to fight it. Sounds like she was slipping me something in my drink, but she knows me too well, because I always try to keep my eyes open as much as I can, even to the point of opening them reeeeeeally wide to stop them from closing LOL.
The next thing I remember.... I'm at home. I don't remember anything. My wife picked me up and she said I was already dressed and sitting in the wheelchair waiting for her. I don't remember getting dressed. Apparently the nurse discussed paperwork after the "date" but I have no idea what about. She took a nice video of me after she got me into the car where, I think, I was pretending to be stripper putting my glove on and off while humming. I don't remember the drive home, getting into my house, talking with my kids, going to bed......nothing. Apparently, though, it was quite humorous. Like I had too many drinks. Have look and listen.....
It's not like a normal colonoscopy because, well, I don't have much colon left...about 6 inches, so it's more of a flexible sigmoidoscopy with sedation.
My "date" was on a Wednesday, so I started to prep on the Monday prior by starting to fast. I had breakfast that morning but then nothing except water or broth for the rest of the time. Drastic? Maybe, but I wanted to look good.... my colon that is. I found after all these years, not eating is easier than taking the disgusting colon prep. The day before, I take two Dulcolax, just in case there's anything left cuz by now, it's just water coming out.
My test isn't until the afternoon, so I have what I'm going to wear laid out. I'm going for minimalism today, t-shirt and track pants, mainly so I don't have a lot to take off when I get there. No accessories except for my drivers license (because it has my medical number on it) and one ski glove. Ski glove, you might ask? Yes. I normally have the IV put into my left hand, so I heat my hand before heading out, then slide the glove on. Keeps my veins nice and big.
After getting dressed, I now just wait for my ride. I can't drive because of the sedation, conscience sedation. Not sure why they call it that, cuz I never remember anything until the next day.
I get to the outpatient clinic, check in and usually only wait less than 5 minutes. It's like I've arrived at the restaurant and waiting for my table. The nurse calls my name and I head to my chair where she goes over my name, birth date and why I'm there. She tells me to take everything off except my socks and shoes....moving a little fast for my liking LOL...and slip into the little blue number she's laid out for me. She said she'd be back with my IV, like I've just made a drink order, and covered my hands in a warm blanket. There's 3 other people sitting waiting, all of us dressed the same, but I always find it amusing. Sitting in the big comfy recliners, little blue "dress", socks and shoes and holding your belongings in a cloth bag. For me though, I'm all that PLUS my big black ski glove on the left hand...sexy! The nurse comes back with my IV "order" and asks me my name, birth date again and then sits down to do my IV....in my right hand! She explained they needed my right hand because I would be laying on my left side. Oh well, at least my left hand veins were poppin' ! No worries, at least she did a good job and the IV slid right in no problem, now it was just sitting and waiting for my name to be called. I never bring my phone or anything just in case someone makes off with it. I never expect to get in on time. After all these years, I don't think I've ever had a test that was on time, so why fret over it. It was about 30-35 minutes later another nurse came and called my name and verified my name and birth date...again. We walked down to the room where my Dr. was sitting reviewing her notes on the computer about me. There were three other nurses in the room prepping everything while I undid my little blue gown and laid on the table, had electrodes stuck to my body, finger pulse attached, all the while "chit-chatting" with my Dr. I've had my gastroenterologist for 30 years so the conversations are always light hearted, but this time she was discussing how I will need to switch from a biologic (Remicade, Infliximab) to a biosimilar (Inflectra, Renflexis) because the Government "said so". It's a touchy subject for me and one of the nurses knew it because my heart rate went up talking about it. After all the chit chat, the Dr was ready for my meds. I always ask for lots, because I dont want to remember anything. She started injecting the first one...there are 3... and tells me to relax and not to fight it. Sounds like she was slipping me something in my drink, but she knows me too well, because I always try to keep my eyes open as much as I can, even to the point of opening them reeeeeeally wide to stop them from closing LOL.
The next thing I remember.... I'm at home. I don't remember anything. My wife picked me up and she said I was already dressed and sitting in the wheelchair waiting for her. I don't remember getting dressed. Apparently the nurse discussed paperwork after the "date" but I have no idea what about. She took a nice video of me after she got me into the car where, I think, I was pretending to be stripper putting my glove on and off while humming. I don't remember the drive home, getting into my house, talking with my kids, going to bed......nothing. Apparently, though, it was quite humorous. Like I had too many drinks. Have look and listen.....
Last year my wife told me that I was pretending to be driving a race car while she was wheeling me out of the clinic, this year I was a stripper.
Still not sure what the camera saw inside, hopefully its all good, but we'll do it all again next year.
Wonder what I'll be next time....
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