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Friday, November 9, 2018

How I do CAT Scans, Capsule Endoscopy and MRI The HARD WAY


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I  started seeing yet another Gastroenterologist who came highly recommended by one of my many doctors, unfortunately, I can't remember which one.  

I've been in excruciating pain lately.  It seems everything goes on with my left side and for years now, I've had horrific stomach pain on my upper and lower left side.  My left leg is what suffers the worst from the Lympedema as well. It is also the leg that usually gets the cellulitis.  I also get unexplained swelling on the left side of my face.  


I've seen a Neurologist for the swelling in the face and the memory issues I've been having the past five years or so.  He can't explain the swelling but the memory issues is due to severe anxiety.  (See I SEE GISTS - Many, Many GISTS)  and (See The Neuropsychologist and the Nutritionist)

The doctor and the insurance company would not allow me to be medicated for the MRI that I was deathly afraid of, so instead I went to a Stand Up MRI, where I didn't have to go into a coffin-like tube.  I tried to do that again for this new MRI of the stomach and pelvis, but they couldn't do it.  So... I had to get a regular MRI.  My anxiety was through the roof. 


Lets start with the first test the Gastro ordered after my consultation.  Back in June she ordered a CAT scan with contrast.  Oh joy. CAT scans don't bother me, I don't fear them, however, the contrast was cause for concern.  Because of IT, which is still a mystery, anything that enters my body is cause for concern, especially "chemicals", which is why I eat all organic, no genetically modified foods, no antibiotics, no pesticides, etc.  It's also why I can't have a flu shot, pneumonia shot, chicken pox shot, etc.  (See Why Am I Not Posting Recipes? Because IT Has Started Again!)



The first issue is getting approval from the insurance carrier which takes, only FOREVER.  As I sit in pain, waiting, they take their sweet time.  So, I make a million calls and spend literally hours on the phone with the carrier and doctor's office and finally, after a month, my CAT scan is scheduled. 

Most people pick up the medication at the facility, drink it at home and arrive at the appointment and have their scan.  NOT ME.  

Because the doctor ordered with contrast, and I have allergy and asthma issues, I had to pre-medicate. My gastro ordered:
  • Thirteen hours before drinking the contrast I needed to take 50 mg of Prednisone (steroid)
  • Seven hours before drinking the contrast I needed to take another 50 mg of Prednisone (I had to set my alarm and wake up in the wee hours of the morning to do it)
  • One hour before drinking the contrast I had to take yet another 50 mg of Prednison AND 50 mg of Benadryl 
  • In the morning, I must also take my Famotidine (helps control histamines), Levocetrizine (allergy medication), Nasalcrom nose spary, my asthma medication which at the time was Asthmanex but has recently been switched to Arnuity and finally a half hour before I must take Cromolyn Sodium Oral Solution.  

All of this is an attempt to avoid a serious reaction.  I must do this at the facility in the presence of a nurse who will monitor me.  I always carry my EpiPens  at all times and always have Benadryl and Prednisone 20 mg on me but the facility also has EpiPens and Benadryl, possibly the kind that they can inject into my IV.  They also have a doctor on staff.  

Of course, I can't drive myself because I'm drugged out of my mind, so my dad has to take me.  

Luckily, I was okay and the pre-medication kept everything at bay.  I got through the test. 

When I saw the Gastro, she said she suspects I have Crohn's Disease.  She wanted to order a capsule endoscopy.  Fun.  


Another fight with the insurance company for approval.  Another month goes by.  I finally schedule the test at the Gastro's office.
  • I had to stop eating 12 hours before the test and use a laxative (prescribed medication) just like one would do for a colonoscopy.  I had to pre-medicate and be watched to be sure there was no allergic reaction.
  • I go into the doctor's office the next morning. They hook me up with this monitor I must wear all day and they make me swallow a pill that has a camera in it.  
  • I had to go back eight hours later to remove the monitor.  All went smoothly, or so I thought. 
Click on video

That night I started to have severe pain.  I called the doctor the next morning.  She wasn't in.  Her office told me she would call me back.
  • The doctor reviewed the results and realized the capsule did not make it all the way through the intestinal tract, in fact it never left the top. 
  • She sent me to the ER and said she'd meet me there. 
  • She was afraid that either I had a blockage that was causing the pill to get stuck or the pill was causing a blockage (neither good).
  • I spend 12 hours in the ER, five of them in the waiting room as it was so overcrowded. 
  • They take x-rays, do a sonogram and some other tests I can't remember now.
The diagnosis is spasms due to swallowing the pill.  They are very painful.  They gave me a shot of anti-spasm medication, but of course, before they could give me meds they had to check with the pharmacy to make sure of the ingredients.  They had to monitor me for any reactions.  I got an oral medication also to ease the nausea. 


I had to see the doctor the next day.  Of course, the two oral prescriptions they sent to my pharmacy were a problem.  One of them the insurance wouldn't cover, the other had ingredients I was allergic to in it.  (See Strep, ZPak, Pharmacies, Manufacturers And Allergies)

I went to the office the next day.  My doctor wasn't in.  I saw another one of the doctors.  He gave me yet another prescription and again, the insurance wouldn't cover it.  FUN TIMES.  So.... I suffered in pain.  What else is knew. 

The MRI was ordered after the pill test failed. 


Because the doctor ordered with contrast, and I have allergy and asthma issues, I had to pre-medicate. My gastro ordered:
  • Thirteen hours before drinking the contrast I needed to take 50 mg of Prednisone (steroid)
  • Seven hours before drinking the contrast I needed to take another 50 mg of Prednisone (I had to set my alarm and wake up in the wee hours of the morning to do it)
  • One hour before drinking the contrast I had to take yet another 50 mg of Prednison AND 50 mg of Benadryl 
  • In the morning, I must also take my Famotidine (helps control histamines), Levocetrizine (allergy medication), Nasalcrom nose spary, my asthma medication which at the time was Asthmanex but has recently been switched to Arnuity and finally a half hour before I must take Cromolyn Sodium Oral Solution.    
  • I also took my anxiety medication (approved by my doctor) due to being very nervous about the MRI.  
  • After all that they put me into the machine.  The mediation didn't go through my system.  I had to wait 20 minutes.  They put me in again. Same thing.  Wait another 20 minutes.  They tried a third time, still no luck.  Now I was told to wait 40 minutes and to walk around.  
  • I sent my dad home to eat, he has to eat or he gets sick and this was taking very long.
  • Finally after the fourth try they were able to do the test. 
Both the CAT Scan and MRI suggest something called Mesenteric panniculitis.  The gastro wants to send me to a surgeon for a biopsy but before that I have to see my Primary doctor to rule out Multiple Sclerosis. 
  • I saw the primary this past Tuesday.  She is gathering all my testing in the past and will get back to me about the next step by Monday  
The saga continues...

November is National COPD Awareness Month
I have deleted some links to my posts as I have joined a writing group and although it will take years, I'm attempting to write a book of short stories.  I was advised not to post any of my stories but instead to wait until I put them all in the book.  

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Monday, October 29, 2018

Halloween, the Mashed Potato Queen And Anxiety


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My daughter asked me to make mashed potatoes for her annual Halloween party.  I happen to make awesome mashed potatoes, but, I seem to be the mashed potato Queen these days because it's what I actually CAN make.

Due to my allergies, gluten, nuts, corn, eggs, and soy, plus IT, which no one can figure out what is causing IT, I can't cook much.  So, I make mashed potatoes for Thanksgiving too at the request of my children.  (See Why Am I Not Posting Recipes? Because IT Has Started Again!) and (See Thanksgiving Day)

I can't actually taste the potatoes, so I need a taste tester, usually my husband, son or parents.  They will tell me if there's enough salt, if they are smooth enough, etc.  Imagine cooking things you can't taste?  Yeah, that's me.


My daughter ordered two trays of food from the Italian Restaurant, but could not put them on sternos to keep them hot, because if she did, I couldn't be there.  She also ordered a hero. She had to have my sister make certain dishes at her house otherwise I would't have been able to be there.  Everything is more difficult and people have to go crazy and do extra work in order for me to attend. (See Ladies Night - At The ER??????) and (See Per Allergist I Should Have Used EPIpen and Called Ambulance!)


Anywhere I go is a problem.  Even going to Sam's Club caused a problem one time.  They started baking in the bakery, which they usually do early in the morning.  I go later in the day for that reason and stay away from the bakery or go pick up items near it as quickly as I can.  I was picking up a prescription for my parents and they started baking in the afternoon.  (See Hashimotos and a Nima Sensor)  It's happened in the supermarket a few times too.  I had to leave the area and have my husband stay behind or, if I was alone, not buy what I needed in the surrounding area.

Some supermarkets have a hot food area with seating where people can purchase food buffet style.  The bathrooms are right near that area.  I can't go there due to all the steaming food.


I could be home and wind up having an attack!  (See But It's JUST... - Part 1 of Series)   An attack is nothing to laugh at.  It's scary as hell.  Somehow, people can't grasp what's really happening and even think it's funny and something to make fun of.  (See How Is This Funny? Don'ts and Dos)


In order to attend my niece's Sweet 16, my sister had to pull a ton of strings.  (See Incredible, Amazing Party With My Fabulous Fun, Insane Family And Friends!)  I can't expect extended family, friends, acquaintances or strangers to do the same, hence, I miss a lot.
  • I was rushed from my last job via ambulance and/or they called someone to pick me up as I couldn't drive in my condition, more times than I can remember.  It wasn't me calling the ambulances, it was the nurses on duty at my government job (they have a mini ER on sight).  
  • I even tried wearing a mask but it didn't work and caused more issues than anything else.  I couldn't be heard easily, especially on the phone and all I did was scare coworkers who thought I had a horrific disease they didn't want to catch. (See Wanted - Short, Dark-haired, chunky woman... You Won't Believe Witness Descriptions!)
  • I didn't go to my husband's niece's graduation party about two years ago.
  • I missed my cousin's granddaughter's communion party about four or five years ago.
  • I refused an invite to a former coworker's house about a year ago, I was actually in the ER with an asthma/allergy attack when she called.
  • I had to rush out of an outdoor event on my birthday two years ago. (See What About Restaurants, Parties, Invites And Public Places?)
  • I missed a birthday party for my mom because I couldn't go to the restaurant the family picked.  (See Awesome Anticipation Of A Delightful Night)
  • I had to leave a movie once, now we go when we know it will be empty and no one will have foods or chemicals that will cause an attack.  
  • There's much more, basically my issues are life-debilitating and I, who was never a homebody, find myself at home almost 24/7 unless I'm seeing a doctor, going to a pharmacy or buying food.  
This isn't a pity party.  Though sometimes I do get very upset, suffer severe anxiety, and get very sad, especially when I had to miss my aunt's 80th birthday party.  Sometimes I feel like life is passing me by.  (See How to Deal With Life's Bizarre Challenges)


It hit me again today when I received the thank you note in the mail for the gift I sent my aunt with my family and when I saw all the pictures and videos of the party on social media.  I wished I could be there.  It sucks, in plain English, to have the whole family together and you can't be with them.  (See Family, Friends, Food And Fun!)

I give the facts because I know there are others out there who have similar or worse issues and maybe if they read about someone else suffering, it will somehow help them.  Maybe they might have suggestions too that might help me or others. (See Pros And Cons)

Until someone figures out all these crazy issues I continue to see doctors.  (See I SEE GISTS - Many, Many GISTS)   And I cook what I can for myself.  I can no longer eat beef, even organic beef after IT came back.  So I eat chicken and turkey (but I can't eat ANY organic chicken or turkey) only certain brands.  If I buy a different brand of organic turkey or chicken I can have a reaction.  Crazy, I know.  (See Soup Whatchamacallit)

I have deleted some links to my posts as I have joined a writing group and although it will take years, I'm attempting to write a book of short stories.  I was advised not to post any of my stories but instead to wait until I put them all in the book.  

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