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.....

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.

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

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 😭