The Other Side of the Scopes

Where to start..

I think I’ll start with a thank you to all of you for your support. It really meant a lot. It sure helps.

There was good and bad about the whole thing. I’ll start with

The Good

  • No stomach pain or cramps with the prep
  • The prep didn’t taste horrible at all as I’d expected
  • I never felt hunger which is very weird for me, but a gift through this at the same time
  • I got a few hours sleep the night of prep
  • It didn’t cause too much damage, since it’s mostly liquid. (Sorry for the tmi).
  • I made it through the prep and to the hospital with no accidents. That’s a definite worry with the prep. So double win there.

The bad:

  • The nurses knew very little to nothing about some of the medications I’m on, They should know about them
  • The staff knows nothing about urostomies so I had to make sure things were looked after there. Frustrating
  • The Dr. wouldn’t listen to me. He flat out refused to give me Profinal that I was promised to knock me right out
  • I wasn’t finished discussing it or other questions I had with him, but he just turned away and ordered the nurse to proceed. Even Mr. CrankyPants was there saying knock her out and no response
  • I warned them I don’t sedate well but as is usually my experience they don’t believe me
  • As a result I woke up during the procedure crying in pain. I remember them saying we’re almost done. I sure hope they gave me more sedation. I’m not lying that has now traumatized me further. I almost died in another proceedure in the past because docs wouldn’t believe I wasn’t frozen or sedated even though they had done both. I was screaming in pain and they wouldn’t listen until again Mr. CrankyPants spoke up and pointed out my dangerously high blood pressure. Why weren’t they watching?!  So you can see this being one of many other experiences of the like why I have severe anxiety with anything medical. This brought that all back. I even told the Dr. I’d been abused and he didn’t listen.
  • They couldn’t have picked a more painful place to put the IV.  I’m still in a lot of pain from it today.
  • In the recovery room. They didn’t offer me any food or drink and I had gone almost 48 hours without. I was sick and dizzy as hell and they sent me packing that way. It was sub-par care at best. Kind of awful

The Results:

  • I have an inflamed esophagus and acid reflux.  (A total shock to me as I’ve not had symptoms)
  • I have stomach ulcers. (Nice of my GP to assume my stomach pain came from ibs without testing me)
  • I have internal hemorrhoids that nothing can be done with at the moment since they aren’t swelled. Having said that, to eventually get something done, I have to go through a surgeon and be awake for the procedure. I’m sure you can imagine what I think of that right now.
  • I had a number of biopsies done. They are looking for micro colitis, (which is when it doesn’t show up in the scope), celiac, cancer and I hope because I asked for it they are also looking for lupus and rheumatoid since, I’m diagnosed with it but it doesn’t show up in my blood work. Who knows if the Dr. will have actually listened to me and complied though
  • Everything else looked good and clear. So minus what did show, I still at this point have no idea what’s wrong ,and there is something very wrong. I don’t want to have these diseases but I really need answers. I’m still losing weight and I shouldn’t be. I’m at 102 pounds at 5 ‘1. That’s underweight. I still can’t stop the frequency. That’s not normal.
  • So in two weeks time I have to follow up with my GP who doesn’t even know I had these procedures done to get the results of the biopsies. I will also be getting the results of my blood work I had done through the GP a couple of weeks ago.

I’m glad for now that it’s over with, but I wish I had more answers. I wish I could storm into that hospital and give them a piece of my mind. I wish I could teach the medical world about the things I live with like my urostomy. You know the nurse didn’t even know what Enbrel is?!

So today is the day after my scopes. My gut hurts a bit, my throat way down is tender but nothing unbearable. I’m just resting. The laxatives are still working some so, I’m staying home.

Have you had these kind of scopes? What was your experience?

Over & Out,

CrankyPants

 

 

 

 

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Prep Day

Tomorrow is prep day for my colonoscopy and endoscopy on Tues. I’m so so stressed. The thought of going without food, having to take heavy duty laxatives, the pain it will cause me. Uggggh! Why,why can’t they find an easier on patients way to do these tests.

How the hell am I supposed to take all my medications on an empty stomach without getting sick?! You can’t get sick because you need to keep the laxatives down. I can’t take Gravol. I’m allergic and I forgot to get a Zofran script in time.

This is going to be pure torture. It causes the very thing I’m trying to stop.

I need answers. I need these tests, I just can’t wrap my mind around the prep.

I’ve been though prep once before that was actually even worse than this one. It was for having my bladder removed. I hurled because I couldn’t stomach the shit load of antibiotics they made me take after two days of fasting and emptying out. Two days prior to the surgery, then the day of, and 5 days after of nothing by mouth. 9 days I went without food or fluids other then IV.

This I have to fast for tomorrow, and I won’t be able to eat until sometime after the tests on Tuesday. If all goes as planned, the tests are at 9:30 am thankfully.

Tomorrow I’m allowed to have clear fluids. I’m stocked up on banana Popsicles,  Jello, chicken broth (Although I’m allergic to garlic & onion and chicken broth has both. So for that only if I’m really desperate). And I have lots of Gatorade.

I’ve been given permission to take Ativan before I go to the hospital since my fear is extreme. In fact so extreme with medical procedures that it will trump sedation. Ativan does nothing for me when this fear hits. I will take it anyway before I go and again while I’m there waiting.

I’m also being put right to sleep because of the above. Sedation won’t work for me. I’m grateful they’re willing to put me to sleep. I don’t want to know or be aware.

So wish me luck. I’m going to be one hangry, scared person for the next couple of days. Poor Mr. CrankyPants. He’s going to be home to help me. There is no way I’d be able to look after our needy dog while going through this. I also won’t be able to drive myself.

Tomorrow is our family day holiday so Mr. CrankyPants is home. Tues. he’s taken a day off work to take me to the hospital and look after things after.

I’m scared too that the diagnosis is going to be what I suspect. The other side is that I’m scared things are so bad and there won’t be answers. Sigh. They will be doing biopsies too; With those I’ll have to wait a week or so for answers, but anything they find with the scopes, I’ll know as soon as I wake up enough.

Gahh I want out!

Scared & Stressed,

CrankyPants

 

I Forgot..

Does anyone else struggle with a bad memory? Holy crap on a cracker mine is terrible. I’m impressed I even remembered what I wanted to blog about.

Not only do I have a bad memory but..

I have so much trouble finding my words when I’m talking. Ever since I was on Methotrexate. (No longer on it).

When I was on Methotrexate, it was even worse. I couldn’t form sentences. Especially the night of and the day after I did my injection. I had a lot of side effects on Mtx that forced me to come off of it, but I’m left with this one side effect.

I know what word I want to say but I can’t get it from my head out my mouth. It’s so frustrating. Sometimes I worry what kind of damage these meds do to our brains. I truly hope they don’t cause things like dementia. With my memory so bad, and struggling with words, it really worries me.

I think that’s all I had to blog about today? 😉

Rainbows & Butterflies,

CrankyPants

Arrrgh!

When my Insurance company and the Enbrel company are butting heads on a new payment protocol that’s not working. I’m left without my meds. I called last Friday to renew the script. I found out Tuesday there was an issue. It’s now Thurs. and the issue still isn’t resolved. Tomorrow is when I’m due for my next Enbrel injection and I’ve got none left. I called in what should have been lots of time to have it by now.

If that’s not enough, I shipped a package to a customer Monday it should have been to them Tues. or Wed. at latest. It’s still not to them. So long story short, at this point the package is lost in the mail. No one knows where it is and my poor first time customer is anxiously awaiting it. This does not make me look good to a new customer.

Sometimes I wish things could just be easier, even once in a while. I’m so tired of battling. Battling for answers, for Dr.’s, for meds. If something would go right even once in a while it would be nice. That reminds me, I now have to try and get through to my Internists office. Wish me luck, that’s always a crap shoot.

Yep like yesterday two times, no answer today. If I a leave message they never return my call. I need to know if I need to stop a med before my scopes and how long before. Fat chance I’ll get an answer.

At least we have sun today after getting 50 cm of snow last week and  temperatures that were at -50 c (-58 f).

*Update: Something went right. Not only did I get through to the Internists office on the third try but, and this never happens, they called me back in 15 mins. with an answer. The Dr. just happened to be walking by the secretaries desk just after I called so she asked him. I don’t really have to stop the med at all which is bonus, but I will stop it on the prep day because it does the opposite of what the prep does, so it just doesn’t make sense to me not too. 

Sunny days & Less winter,

CrankyPants

A Better Day

Today was a way better then yesterday. I took my new med and only half a dose. If it works as well as I think it did today. I will get some of my life back. It also seems to be slowing down the frequency I deal with without a bladder. It’s making me thirsty and allowing me to drink fluids without having to run to the washroom.

If it is doing this, holy cow this would be a dream med for me.

I’m cautiously hopeful.

I was able to go into town and get everything done I needed to today with my Hubby’s help. I ended up with a gut ache but I was able to get out of the house and that is good. We were even able to go out for dinner later in the evening.

It’s a brand new medication on the market so docs and Pharmacists don’t know a lot about it. I guess I’m sort of a guinea pig again. I sure hope I don’t grow a second head or something.

If it does work this well I could see it being life changing for those with crohns/colitis/ibd.

I’ll keep you posted.

I made another change this morning. I didn’t have decaf coffee. I wanted to see if it was making things worse. Tomorrow I will have decaff coffee again and see if there’s any difference.

I love the days that give me some hope but, at the same time I’ve hoped so many times before and they were dashed so that’s why I combine cautious and hopeful in the same sentence.

How was your day?

Good days & Breaking free,

CrankyPants

Sick

Oh my goodness I was so sick this morning I was scared. If it hadn’t of improved some when it did, I was debating whether or not I should go to the hospital.

I don’t know if the meds stopped working, or if it’s the nature of this potential disease (crohns or colitis) to override the meds at times. Hubby is picking up the new meds for me on his way home from work tonight, I sure hope that they work better and faster or I could end up at the hospital.

I have so much I have to do tomorrow. I hope I’m not this sick tomorrow.

I’m weary.

That’s all I’ve got today.

Sunshine & Warmer days,

CrankyPants

Make me more Dizzy Thanks

So after the whole, “I need a different med mess” yesterday between the pharmacy and the Dr.’s things have yet again changed.

I get a call back from the pharmacy today from the first Pharmacist I’d talked too. She called to tell me that my GP had got back to her and sent in a new prescription. It took me a minute to process that after being told yesterday no change because we don’t have a diagnosis yet.

In a sense this is good news..

The good part is it’s a pill form, so no more having to drink powder. Yay. I don’t have to work out taking it around my other meds. Believe me that’s been complicated. Yay! And it’s another option yay! With an extra script on file, it saves me another trip to the Dr.’s. Always good!

The bad part is, even after my benefits cover 80% of it, I still have to pay $33 out of pocket. When you’re on lots of different meds that you’re paying 20% for out of pocket,that adds up. It seems the only meds that help me are the most expensive ones. I’m not even a high maintenance person but when it comes to my medical needs, it seem I’m expensive.

Pharmaceutical companies sure make a mint off poor people. It’s sad really.

Thankfully I don’t have to pay anything for my Enbrel because that would be $1800/month. Who the hell can afford that?! My insurance covers 80% of a generic form of Enbrel. The Enbrel Co. itself is covering the rest and giving me the real Enbrel. If I had to pay 20% for that, it would cost me over $800 a month.

I feel bad for those who really need the med and don’t get coverage. It’s got to be disheartening.

So that’s my update for today. I swear I have my own pharmacy here of meds that I’v had to come off of. It’s a shame they couldn’t go to someone who couldn’t afford them. I haven’t been able to dispose of them yet because it just feels like such a waste. It will feel like a bit less of a waste (At least in my mind) to hand them into the pharmacy when they’ve expired.

Hope everyone is having a light pain day today.

Sunny days & Good views,

CrankyPants 

Dizzy from the Runaround

It’s been an interesting few days. Where to start…

I was emotionally wrecked yesterday crying on and off all day with all the below going on. I was scared because I was so sick.

This is the raw reality of complicated chronic progressive illness, not just for me but for most.

First I saw my GP and he told me that the meds the Rhuemie told me to take for my gut were bad to be on for long. I’ve been on them months. Thanks for that Rheumie. Body can become dependent on them. Doc gave me a new med, a script.

New med, isn’t working, I can’t leave the house, things are bad. Add in it’s in powder form so I have to drink it in water. I also have no bladder. So..Still can’t leave the house even if it was working because of that frequency. I also can’t take it anywhere close to any other meds I’m on. Complicated? Gets better.

I phoned the pharmacy, and talked to them about other options. They said call the Dr. I called the Dr. The Dr.’s office said call the pharmacy and have them fax in my situation, other med options and that I can’t leave the house and hopefully the Dr. will just sign off on whatever they suggest.

Forward to today. NO calls. I just called the pharmacy to find out nothing had been done. I talked in length with the main pharmacist who knew nothing about yesterday. She said because I don’t have an actual diagnosis yet she’s not comfortable recommending anything else. It might not be safe for me. I understand that.

So I’m stuck with this stupid powder that doesn’t work and I can’t leave the house.

Scene two:

Remember how I was supposed to get a call back about a colonoscopy and endoscopy? Well I never did. Things were so bad yesterday that I called the specialist’s office to find out what’s up. They never answer when I call from my home phone but always answer when I call from my cell. The second call was made from my cell. They answered. (This is the Internist’s office). Don’t ask me why I didn’t call the first time from my cell.

I found out that the Internist had sent in the orders for the tests two weeks ago. That’s good, but why did no one call and tell me as they had promised? The secretary said my best bet is to call outpatient at the hospital and ask about it. It will get me noticed and probably booked. I did that and finally got booked. The squeaky wheel gets the grease, but I’m so tired of having to be squeaky.

The secretary at the Internists office said my Internist has been off a month do to burn out. Sigh…our medical system. He was also supposed to be suggesting other med options for my situation today. No call. Am I surprised? No.

Then there’s one doc telling me to do one thing and another saying that thing is bad. My head is spinning. Why can’t all my docs work together?

My GP has no idea that I’m booked for these two scopes and I don’t plan to tell him yet. He didn’t think I needed them yet. The other specialists did.

I got a call back from my GP’s office yesterday with regards to my recent blood work. They said it’s nothing urgent and just a follow up. They don’t call unless something is found. I said to her there’s another test I did that is due in next week. I want to know about that one. Can we wait until that is in to deal with both. She said sure. She then asked if I have any other tests coming up. I told her about the scopes. She said let’s just book the follow up after the scopes and deal with it all in one appointment.

I agreed but then..

I realized I want the results of the test coming in next week sooner if there is anything found. It will give me some answers. Annnd if there is something found, the scopes are the next step. See?

I have the scopes booked in advance guessing it will be the next step.

Feb. 19th and 20th will be the days. I dread the prep on the 19th. As far as the scope I’ve talked with the nurse in detail, and they are going to ensure that I am completely knocked out for the procedures because of my extreme anxiety over medical anything. Otherwise, I’d be heavily drugged but still able to respond and move for them. I told her my fear will override the sedation if I’m even a bit aware. That’s no word of a lie. I’ve had it happen in other situations like the dentist. I don’t freeze or sedate.

The nurse told me I could take Ativan before I come and take more there if I need it while I wait. So that has helped put my mind at ease. The biggest stress is the horrible prep and having to be up all night going through it. I’ll be so glad when it’s over with. I’ll hopefully get some answers.

The good thing is, the day of my prep is a holiday here so I will have Mr. CrankyPants home to look after our dog while I go through this prep. There’s no way I could look after him during it.

And…

Hubby has got a paid day off the day of my scopes so he can drive me there and bring me home. Then look after the dog and I. Phew! That will help a lot. He’s the only one I have up here to help me.

Between calls to and from the doctors, the pharmacy and the hospital yesterday, I was getting confused by the end what I was supposed to talk about and to whom. Then there was the constant washroom trips.

You know what I wish?

I wish I could go even just one month without having to deal with any medical appointments. I need a break.

You really do have to be your own advocate or you get nowhere.

What battles have you had?

Better Days & Twinkly Stars,

CrankyPants

 

 

Life with an Invisible Illness

Alyssa says she’s honoured to guest post on my blog but I feel like I’m the one honoured to have her guest posting. Her attitude with her hard fought battle against chronic illness inspires me, helps keep me going and makes me smile. Welcome Alyssa from https://fightmsdaily.com/about-me/  I’m so happy to have you here. I’m sure you will enjoy her posts as much as I do! Don’t forget to drop by her blog! Just hit the green link above. – CrankyPants


I feel so honored to have been asked to do a guest blog for Cranky Pants! I am excited to be able to share my experiences on another blog with hopes that how I deal with my illness will be helpful to others.

Invisible-Illness-AwarenessLearning to master the art of living with a chronic but invisible illness can be fairly difficult at times. I was rather young when the doctor told me that I had Multiple Sclerosis. At 19, I was shocked, terrified and confused because I had only known one person with MS and she was my father’s wife, we are NOT related by blood! All I could think at the time was that I was too young to be diagnosed with a debilitating illness that did not have a cure. I was convinced that I would be in a wheelchair before my 25th birthday and that my life would be over!

It has been almost 17 years since I was diagnosed and I am still alive and walking without assistance! I have had many setbacks over the years, but do find it important to hold onto positive thoughts because the negative will only destroy passions for life. Once I started accepting my diagnosis, I promised myself that I would never allow MS to control my life but that I would control the illness!

In the early years of coping with this illness, I felt shame and did not want anyone to know what I was faced with in life. I felt that people automatically judge others that have a disability, even if it is not really seen! I never wanted to talk about it with anyone and kept all my feelings bottled up inside and choose a bad way to handle my emotions. I started drinking more than I should have, especially because alcoholism runs in my raise awarenessfamily. I thought that if I was drinking, I would not feel the pain and sense of loss of my normal body. My issue with alcohol only continued for a few months and I ended up catching myself going down a really bad road. I think it is normal to try to find an outlet from our struggles and sometimes they are really bad choices. But even if you fall down a bad path, you can correct the issues with strength and courage. I am sharing this to let people know that no matter what you struggle with there is always a way to make the wrongs right again!

Life comes with so many twists and turns through the years that it can get so frustrating. However, I am a strong believer that everything happens for a reason and somehow what is meant to be will be! For some unknown reason, I am the only person in my family that has to deal with MS. I thought maybe it is because I do have the strength to I willfight fearlessly and never give in to the relentless challenges I have to overcome. Or maybe I was dealt this hand in life because I can actually help others battle their struggles incessantly. Who knows? But I will continue to fight until my last breath because we all have only one shot to live our lives the way we want to!

I sincerely hope that you have enjoyed reading the shortened version of my experience with the invisible illness I have been plagued with in life. I hope you can feel in this blog how hard I do fight for my wellness and that I have the determination to win!

Love 2

 

Always, Alyssa

F#%&@n Medical World

Just a heads-up if you couldn’t tell by the title, I’m cranky today. I saw my GP yesterday who is the second Dr. to tell me that he’d book a colonoscopy for me. I come to find out he hadn’t. He said he didn’t know why I needed one. Holy Hell! Number one call and ask me. Number two look at my medical records. My Rhumie thinks I really need one. So do I. I’m not asking for one for shits and giggles. (Pun intended). I really hate the idea so for me to ask means I need it.

My GP never believes me when I feel something is very wrong. It took 4 years for him to believe I had more then Osteo arthritis and tendonitis. You know what I had? Yes Osteo but lupus and Rheumatoid too.

Now I know in my”knower” that I have either colitis or crohns going on. It runs in my family.

Without even examining me my GP tells me that he thinks I have IBS. I wanted to scream, you’re wrong. What’s going on with me is NOT IBS. So now I have to do a stool sample test first. Doc says that it will tell him if something more is going on. I know it is, but I also know he wouldn’t listen if I tried to tell him further.

If the sample shows what I suspect then I will have to have a colonoscopy. Why not just do the test that will tell them and take care of any hemorrhoids and or polyps I have as well. Also they could do a biopsy that would tell them if I have crohns/colitis. It may even show them lupus too.

Oh yeah doc also had me do some blood work to test for celiac.  Umm..an endoscopy would tell him better. I don’t know why I can’t get this GP to believe me when I proved him wrong with the first two diseases.

I’m so tired of getting the run around in the medical world.

If any Dr.’s read this, for the love of God listen to your patients. Trust their gut instincts. More often then not, they are not hypochondriacs. Work with us not against us. We want to feel that our Dr.’s have our back. I haven’t known what that feels like in years.

What happened to your oath of do no harm?!

I’m so weary. Weary from the diseases, and even more weary fighting the medical world. We need validation not to be exhausted further by doctors.

Listen to us. Just listen.

Sunny Days & Rainbows,

CrankyPants