COLONOSCOPY

First of all, if I didn't absolutely have to get a colonoscopy to find out what is wrong with my colon, I absolutely wouldn't. The opposition says this is a ploy of American doctors to make money. No other country in the world demands such an invasive, dangerous procedure to be done on patients just as a preventative measure. Unfortunately, with my non-working colon, most of the many doctors I've seen in the last four months won't treat me until I have one done for fear there is something serious lurking and treatments might complicate matters. So I don't have a choice. Well, I do have a choice, but fixing this colon is a priority right now.

My GI doctor assured me there was nothing seriously wrong with me. OK. So then WHY do I have to get this done? My naturopath said the GI doctor has no idea if there is something seriously wrong with me because she hasn't done the colonoscopy which is why she ordered it. Yes, GI doctor is a liar. What is new? It's really disconcerting to have doctors argue with each other through me.

And then there is the cost. Federal law claims with Obamacare we are allowed a free preventative, colorectal cancer screening via colonoscopy if we haven't been diagnosed with anything, but come to find out it's only free if they DO NOT find anything. If they find anything whether it's a polyp, mass or other growth, it becomes very costly. Or if it's diagnostic, then all freebies are in the toilet and it becomes twice as costly. One friend said hers was free regardless of the diagnostic purpose. So it seems every medical office, every insurance, every doctor, and every patient gets a different price and getting verifiable financial information is impossible until one makes and confirms an appointment. Mine will cost a base of $860.33 with the first polyp costing from 345.92 to 410.36 (depending on the technique used to remove it) and every polyp thereafter at half price. The required facility fee will be $570.35 for the first polyp and 285.17 for any others. Beyond that it will cost $90.00 per biopsy. GOOD GOD!

Of course, no one told me there is a choice of anesthesia vs. conscious sedation. When I called to get exact financial information the billing department told me the sedation is free, but the anesthesia is expensive. Needless to say, I called the scheduler back and selected the conscious sedation method. I was also hoping the drugs were less toxic.

And the bowel prep solution choices. One is called CoLyte (or GoLyte), mega doses (64 oz. per dose times two) of polyethylene glycol or Miralax on steroids. Since I started having problems with this laxative creating abdominal pain and burning (it causes peptic ulcers), I opted for the other. Suprep is sodium sulfate, potassium sulfate and magnesium sulfate, however, it involves drinking only 6 ounces of a horrible cherry-flavored solution mixed in 16 oz of water, washed down with two more 16 ounces of water. Online people with multiple colonoscopy experiences say Suprep is a much better experience.

But most insurance companies cover CoLyte ($29) and not Suprep which costs five times as much (about $125). One of the GI nurses offered to send me a coupon for a discount. I waited a week and it never arrived so I became proactive figuring nothing good would come from waiting for someone to do what they said they would, went into the office, and kindly demanded my coupon. I didn't get a coupon. Another nurse brought me out a FREE Suprep Bowel Prep Kit! WHOO HOO! I actually threw my arms around her for an impromptu hug. She recoiled as only a nurse would do. It pays to be proactive, but it's a lot of work to keep on top of people who don't give a shit about patients.

So, after waiting three months and not canceling which would have cost me a $200 cancellation fee, I started the low-fiber dietary prep. You can have cakes, croissants, ice cream, pudding, chocolate, and Jello, but you can't have vegetables or fruits. It's totally backward. I tried sticking to my diet, but definitely cheated with fruit juices, white rice, eggs, and sweet potatoes. The last two days were a liquid diet of juices and broths. Blah.

Suprep wasn't as bad as I thought it would be. I'm not sure why all these drinks need to be flavored with toxic bad-tasting chemicals, but I drank it down with a straw and it was tolerable. At least it wasn't thick and chalky like the barium drink for the CT scan. After an hour of burping and feeling like an over-filled water balloon, it all started working. No cramping or pain. Every person reacts different to this solution: for some the diarrhea doesn't start for two or three hours, others it never starts. Some people have cramping and pain, others don't. I think since I'd been living off of laxatives for the last four months, my colon was used to working, but I was peeing every five minutes for about two hours.The second morning dose worked within fifteen minutes and it was just as if water was going through me. I was just thankful all those chemicals didn't kill me after glancing at the side effects packed in the kit. I avoided reading them. I didn't want to know.

The most stressful aspect of this colonoscopy preparation, other than pondering the fact you can die or be permanently maimed on the operating table is the driver requirement. One must have a driver. This was the reason I declined to have the colonoscopy done two years ago. Who? I don't have family and my friends aren't interested in taking a whole day off work to drive hours to my house, drive hours to the facility, sit for an hour or more, drive hours to get me home and drive hours to get home. I asked a few and they refused, but it was difficult to even ask or expect such an outrageous commitment. I checked various medical transport services but most required the passenger to be low-income, elderly, or disabled. I am none of those things so what does a relatively health-ish and young-ish person to do?

I found someone who was willing to drive me from her house, to the facility and back to her house on her day off, and then I would camp in my van in freezing weather outside her house. Not optimal. For this reason I had to choose a facility close to her house. There are none close to my house, but if there were that would not have been an option because of this transportation requirement. Everyone I know lives hours away from me. I had a feeling after being sedated and violated for an hour I would desire to go home and rest in my own bed, but what choice did I have?

I worried whether she would cancel on me at the last minute after reading about the experiences of others. No driver and I'd be denied check-in and have to pay that last minute cancellation fee. I had little confidence in her when she told me two days before the procedure about how she made another appointment during the time she should be driving me, "Is that OK?" HELL NO! WHAT THE FUCK?? was what I was thinking. I didn't scream at her. I was afraid if I started spewing stressful out-of-control exclamations she might cancel then what would I do? Finally she complied, "Oh! OK, I have it on my schedule now!"  NOW? NOW? I made this appointment three months ago, selected the day according to her requirements, and confirmed it with her at least three times since. Talk about adding to my already building stress level! According to online articles and comments, this no driver issue is a common problem for people who are single or new to an area.

My appointment was at 1:30pm. I got to town at 9:00am. Yeah, I probably didn't need to be there that early but I drove the van in order to stay the night. The van has 250,000 miles on it. I had phone numbers for taxi companies in case it broke down. I just felt safer knowing I was in the vicinity and I had some errands to run so plenty to do.

My friend didn't cancel and she showed up right on time. We checked in an hour before the procedure, still too early, but I didn't care as I feel less stressed when I'm early and can settle. I asked the receptionist about the sedation procedure as I was worried about the drugs and she confirmed, "Oh yes, you'll be administered Propofol." "What? Is that the conscious sedation method?" "Hmmm...ahh...no." She shuffled my chart papers, "Oh, you are doing conscious sedation so that will be Fenatyl." Right away I had no confidence in this hospital. I've learned the hard way no one is trustworthy in health care.

The waiting room stunk of something. I have no idea what it was. At one point I looked around for an air freshener. I saw multiple bottles of hand sanitizers all over the place. Was that what smelled? I excused myself I went out to the elevator area where there were more chairs by windows with a strong air ventilation exchange overhead. My friend read her book.

The nurse called me early. I figured this might happen which is another reason I wanted to go in early so I could get out of there early. I was starving. Her name was Cheryl. Big, blonde woman who cooed condescendingly talking to me like I was a five year old. That's fine, I thought, she's just trying to make me feel comfortable. She had me sit on the hospital bed and asked questions. I asked if I could go without the sedative and she lost the baby talk and acted offended, almost hostile, explaining how that would be unconventional and I NEED the sedative. I told her I'd rather go without if possible. She ignored my request. It was very frustrating. While going over the questions and paperwork she tried to tell me I was there because I had blood in my stool. NO, I am there because my colon isn't working. Do they know who I am? Does anyone ever listen?

She had me strip down and put on a hospital gown that was folded up near the pillow. She closed the curtains. When I picked up the hospital gown I noticed there was a large wet spot near the pillow and on the pillow. When I got the hospital gown on there was a small wet spot near my waist from where the gown was soaked. I didn't think anything of it. I asked to go to the bathroom one last time and when I got up to leave she noticed the wet spot, apologized, and started changing the pillow case. She didn't change the bedding.

When I returned she had me lay down on the bed to insert the IV and that's when I smelled the wet spot. Something strong, unfamiliar that tasted metallic in my mouth. I thought to myself it was probably some kind of drug or IV solution.

And then I started crying. It came on sudden. The nurse kept asking me what was wrong and truthfully, I had no idea. I told her it must be stress. I couldn't stop. The more she jabbed me with the IV needle, the harder I cried. Another nurse came in to confirm I was there because I had blood in my stool and I became almost belligerent, "NO, I  AM HERE BECAUSE MY COLON STOPPED WORKING FOUR MONTHS AGO!" My outburst shocked her and she excused herself to check with the doctor. She didn't realize how much control I still had. I kept crying.

The doctor sat next to me and asked what was wrong. I had no words. I had no idea. My cognitive function was gone. I felt confused. I finally said, "I really would rather not be sedated. I'd like to be cognitive enough to watch the monitor." She said I am getting "conscious sedation" so I will be able to watch the monitor. Great. She squeezed my arm reassuringly and left. I think they were as baffled as I was as to why I was crying. No other patient around me was crying, in fact most of them were laughing and joking with the nurses.

Another nurse came and gave me a very quick shot of Benadryl. I didn't even have time to argue, but I should have. They wheeled me into the surgical room. The doctor had me recite my name and birthday. I was baffled. Do they really not know who I am? I'm pretty sure she was testing to see how the Benadryl was working. Obviously I was way too coherent. They knocked me out totally with Fenatyl and Midazolam. I'm guessing I got double doses.

My beautiful butt...perfectly prepped,
no inflammation or infection, no wall thickening, no masses or growths
One polyp.

I woke up back in the pre-op room absolutely furious. I was out totally. No television viewing for me. Did they give me the bad drugs? Or just double dose me? Incredibly groggy, but feeling violated and betrayed. Thankfully the effects of sedation keeping me in control. I dressed and was escorted out to my friend who sat with me for the results and to be discharged. I glared at the doctor while she spoke. I think it was a good thing I was groggy or the skinny bitch would have got an earful. Or more.

I spent the night in the van, waking up constantly, enraged at everything that happened: the dismissive attitudes, the lies, feelings of betrayal. I was instructed not to drive for 24 hours but I kept sitting up to test how the drugs were affecting me. Every time my head spinned I laid back down. At five in the morning I felt fine, not great, but good enough to drive in the dark, in the pouring rain, on a winding country highway praying deer wouldn't jump out in front of me. Even when I'm fully cognitive I'm afraid to drive this highway at night in perfect weather. That's the advantage of drugs. I didn't care.

The whole next day I cycled bouncing from depressed and crying to screaming obscenities at the dishonest, betraying, insensitive doctor. This is what I call "rage cycling". In the world of bipolar illness it's called "ultradian cycling." I write about it in my post called "The Weirdness Awards: MCS Symptoms That Will Make Your Skin Crawl" you can read HERE.

I haven't had a chemical reaction like this since my Environmental Health Specialist shot me full of toxins for a very invasive allergy test sixteen years ago. I'm just not exposed to bad chemicals often. I know how to avoid them for the most part. I knew to stay in my house and ride it out. I knew to avoid the internet, the phone, and all contact with people. If you experience this side effect with strong chemicals, you know what a nightmare this is. My brain was exploding. Everything felt intensely wrong.

I read a book once on bipolar illness research and how substance abuse or other chemical exposures are part of every bipolar patient's history. I'm fairly convinced chemicals are the cause of bipolar illness but for the most part, this goes ignored. I cannot imagine living with this disease day in and day out, experiencing uncontrollable ultradian cycles continually. What a nightmare it must be! And with all the random acts of violence these days, how much of it is caused by chemical exposures?

So five days later with my brain back to normal, I went looking for the drugs that smell like metallic. Fentanyl doesn't have a smell. I couldn't find anything on the smell of Midazolam, but what I did find are some of the more unusual side effects usually experienced by children because they have been given too much. Susceptible populations like the elderly (or the chemically sensitive) are also at risk. Side effects include...wait for it...uncontrollable crying, agitation, confusion, aggression, paranoia, and violent tendencies. Patients have written of their experiences online describing screaming, combative behaviors, throwing things, pushing over carts, and ripping off their hospital gowns and attempting to run out of the hospital. I guess I was more in control than I thought! Other side effects include lingering dementia, headaches, and nausea, with some outcomes: death. Nice.

If they had allowed me to go without any sedative and if they hadn't soaked the bed, pillow, and gown with toxic chemicals that I was forced to smell for an hour, I probably would have had a relatively good experience. I didn't have any pain, no bleeding, no infection, no punctures, and I definitely didn't die. Is it any wonder people do die? And how many of them are chemically sensitive? Too bad these conventional doctors are so narrow-minded they don't understand chemical sensitivity and would rather adhere to their ignorance than make accommodations.

At one point the doctor said, "Well, this is only your first colonoscopy. The second will be much easier." Through my tears I said, "This is my LAST colonoscopy. I guarantee it."

Here's a really good video on what they do while they are digging around. I would have preferred having this guy as my doctor.

This video is what happens when you don't follow the prep directions. It's kind of funny although incredibly gross. I love the background music. Hilarious:

The Sensitives (movie)

I finally got around to watching The Sensitives a documentary film about people with chemical and electrical sensitivities directed by Drew Zanthropoulos. Great filming, outstanding photography, and I enjoyed how the dialogue was mixed over the various shots. Nicely done.

Some of the scenes were very interesting. Like the refrigerator full of supplements. Good god! I was hoping someone would address whether they do any good especially since there are theories that supplements add to the problem. That is a whole lot of financial investment for empty promises.

There sure were a lot of dogs in this movie. Barking dogs. With so many MCS/EMF people who have hearing sensitivities it still amazes me that MCS/EMF people are so thoughtless to subject others to their barking. The community down in Texas was featured - little, safe, EMF-proof houses in close proximity - with dogs milling about all over and barking! Like a ghetto. That place would be my personal hell.

One of the residents yelled at the new tenant to stay away from her house because he stinks. LOL! He's one of the stars of the film so it was a bit discombobulating to think this sick man stunk of toxic poisons, the poisons that make him sick. He called the place "a concentration of crazies." Well, that's not nice, but I totally get his sentiment. It has to be frustrating. This is my worry about moving to a community of any kind...I know I'm a pain in the butt and I don't know how much patience I'd have dealing with other people equally as obnoxious as me as we try desperately to control our environment. It sounds like a war in the making.

Not sure why someone suffering from MCS/EMF thought it would be a good idea to get on a plane and fly to Washington, DC. She couldn't participate in the conference in another way? Was the risk really worth it? They showed her walking along a busy city street filled with passing buses. I was gagging just imagining the fumes. I realize not everyone is as sensitive as I am, but if she has to use a wheelchair after a toxic exposure, I would think the travel risk would NOT be worth it.

She also invited a cigarette-smoke-saturated interviewer to sit on her bed with her dog. She told me I wasn't allowed to sit on the bed with or without the dog! And I didn't even stink! It was a little disturbing she was willing to smell people to determine if they had stink on. There is a lot of risky behavior going on here. The scene where she was testing EMF frequency with a transistor radio was fascinating.

I was a little envious of the support system all these people have. There was a lot of discussion on family members being taken for granted or not being recognized for all the work they do and the self-centeredness of those who are suffering. I think sick people in general are self-centered. It's their reality to do whatever they can to help and protect themselves and that makes them self-centered. In these scenarios, the wife does all the cooking and the ninety-year old grandmother does all the shopping. Their devotion is pretty amazing. I wish I had such devoted people in my life! I think chemical sensitivity would be that much more tolerable if I had a twin to share the experience, someone I could lay around in bed with, someone who totally understood my situation.

I kept pondering the difference between a family support system and no support system. The MCS/EMF people featured in this film who have family support seem far more dependent and helpless than, for instance, the woman who lives alone and is capable of doing a lot for herself. Is she less sensitive or just doesn't have the luxury of relying on someone else? The daughter of the man said if he had to live alone he would be forced to cook for himself rather than have his wife do everything for him. Can he cook for himself? Maybe the daughter doesn't understand his sensitivities, but clearly she thought he should be making more of an effort. And if he can't cook for himself, how could he even think of living alone in the first place? I suppose the appliances were less problematic in the Texas house? The film wasn't clear on these issues.

There were few moments of poignancy and personal emotion that were very descriptive. I think the best one was the phone call received from a woman stranded somewhere, having bad reactions to the environment, and in a panic not knowing what to do. That was very moving and exceptionally descriptive for such a short scene.

In summary, it was interesting, nicely filmed, perhaps a little disjointed and somewhat slow. Again, I would have liked more poignant moments or a different organization of stories to emphasize what it's like to have these kinds of limitations. It needed more of an emotional punch throughout. I found it confusing seeing in one scene where the subjects are so sick they can't function and then in the next scene they are risking exposure on purpose. I know that's reality and maybe that was the point, but a filmmaker would have more control over what is presented which would control the storyline.

Still, well done. It wasn't exploitive, but very honest and compassionate.