CT and MCS

Something is wrong with my colon. It stopped working on November 6th. I've had two different health care providers order a CT scan. This count does not include the monstrosity of a doctor at the hospital who said a CT scan would be the preferred diagnostic tool, but their machine wasn't in working order, of course. Instead, the Temple of Death and Doom did everything but the CT scan: x-ray, ultrasound and way too many blood labs. All showed nothing, of course. The CT is preferred because it is so precise taking minute slices of x-ray imagery details. It also uses an enormous amount of cancer-causing radiation, much more than any other x-ray procedure.

The formerly-fired-rehired-but-useless Nurse Lady ordered an abdominal scan without contrast. She believes my gall bladder is causing all the problems and needs to be surgically removed immediately. With little thought whatsoever, that was her diagnosis after five minutes. This may be right as something is causing my colon not to work, but she's proven to be untrustworthy in the past so I can't rely on her shoot-from-the-hip diagnosis. Besides no one is going to remove an organ from my body without a fight. However, if it is my colon and only the abdomen is scanned, will someone expect me to get another CT scan? One is enough.

The second doctor, a GI Specialist, ordered an abdominal-pelvis scan WITH oral contrast. She believes there might be an issue with my colon. Contrast is required for colon imagery because it moves around too much for a clear image. She's a very expensive specialist so I have to trust she might know more, but she also gives her children Miralax for their constipation so I don't have much faith in her since she obviously doesn't even know how to feed her kids.

POISON. Panic. There are two types of contrast: oral and IV with two main choices of contrasting ingredients: iodine and barium. None of that sounds healthy. The oral contrast is barium. That can't be good. I have to drink poison? I tried to tell the doctor and her nurse I don't do well with chemicals, but of course, this is a conventional medicine doctor and they just think I'm crazy. Chemicals don't cause problems! They disrespectfully dismissed my concerns with a wave of a hand and persisted in treating me like I'm stupid. I asked about ingredients because I know it's the fillers and additives that will make me miserable if the barium doesn't kill me first. The nurse condescendingly argued with me. When I didn't give up she sneered then searched online. Artificial flavor, benzoic acid, citric acid, natural flavor, potassium sorbate, purified water, saccharin sodium, simethicone emulsion, sodium benzoate, sodium citrate, sorbitol and xanthan gum.

XANTHAN GUM? Didn't I just write a post on the evilness of xanthan gum? This is the stuff they put in gluten-free baking that causes all kinds of intestinal problems including constipation, intestinal blockage, and abdominal pain. So what I have is going to be made worse? Great. Let's not forget about the exploding flatulence I experienced with the xanthan gum-laced gluten-free gingerbread cookies.

The nurse gave me two bottles flavored vanilla and banana. I'm clearly freaking out, but she ignores me. I start hyperventilating. I ask if there is another flavor besides banana as I know I can't get that down. She's treating me like I'm a pain in the ass, but she finds a berry-flavored container of poison. They are calling them "smoothies". That's not reassuring.

I'm in a panic. They refuse to give me any information on the side effects and I know from past experience if there is a side effect to be had, I will have it. When I get home I get online. Hives are the most common side effect followed by constipation, intestinal blockage, and abdominal pain probably due to the xanthan gum. This doesn't even make sense - why have me drink something that will make my symptoms worse? GirlAlive tells me she went into anaphylactic shock with her first and last contrast poisoning and there it is online...some experience anaphylactic reactions...and some die. If the patient has any allergies this is a red flag.

Oh. My. God. I am doomed. I will die and no one is listening to me! What really concerns me is I am to drink one of these bottles the night before. I live out in the middle of no where. What do I do if I have a reaction and can't get help fast enough?

I contact the two different radiology offices, both have my referrals. The one for the non-contrast referral located in a different city gives me all kinds of information. Benadryl is used for side effects and works well. They seem very knowledgeable and prepared, but they haven't bothered to get a pre-approval through my insurance. Am I approved or not? They cost $200 more than the other office and they are three hours away. Can I even get another referral through my new GI specialist for this office? I doubt it. And how long would I have to wait?

The other radiology office acts just like my doctor waving off my concerns as if I'm stupid and as if zero information alleviates my stress. They've never heard of anyone having a reaction. No side effects. It's right online you morons! Ignorance is an epidemic in a small town. I guess you get what you pay for. I also looked for another radiologist in every town within two hours of my location: nothing. I don't have much of a choice so I'm at the point where I guess I should just feel thankful I have any option. This radiology office is the only one within 150 miles of me.

Online I find a thread posted by a MCSer also concerned about her CT scan appointment. About ten people responded to her, all have had CT scans, sometimes multiple CT scans, and only one had minor side effects of hives. This was reassuring.

The "natural flavor" ingredient in the smoothies also gives me pause as well, but I was told by the flunky at the second radiology office this concoction IS gluten-free. Is she lying or stupid? According to a www.celiac.com thread based on information from the Readi-Cat company the vanilla flavor is NOT GLUTEN-FREE, but all other flavors are. It never ceases to amaze me how stupid medical people are and it's advised never to trust anything that comes out of their mouths.

SURRENDER. I made an appointment only because I've been dealing with abdominal pain for two years without anyone being able to tell me what it is and all my symptoms have escalated. Pain, desperation and fear makes one throw caution to the wind. (As I write this the pain in my side is flaring up...it will no longer let me ignore it.) I changed the appointment three times in three days because I can't decide if I should get it over with or wait giving myself time to reconsider as I get more and more stressed out with each passing day.

During third call I confess I'm scared shitless and the scheduler says, "Due to a number of people also worried about side-effects and living out in the middle of no where, we just recently changed our procedures. If you can come in 1 1/2 hour before your appointment, we will have you drink both bottles right here. That way we will monitor you and the hospital is right across the street if there is a problem." Maybe they killed a few people before getting a clue?? I'm not excited about the possibility of another expensive emergency visit to the hospital (what am I thinking?), but just slightly relieved it'll be just around the corner if it all goes wrong.

So...tomorrow morning bright and early against ALL common sense with every fiber in my body screaming at me not to do it, I will voluntarily poison myself and get radiated. The technicians are going to regret it once that xanthan gum kicks into action. LOL. If I don't live through it, this will be my last post. If I live through it, I will add an update here:

I SURVIVED! Good lord, I don't know if I've ever been so stressed in my life! I was awake most of the night practicing my confrontation so I would be assertive, not bitchy, for results rather than release. LOL.

I started driving at five am on an empty stomach arrived just before they opened or two hours before my scheduled procedure. I stopped along the way three times to go to the restroom. Nervousness is definitely a cure for constipation!

The receptionist was lovely, friendly, and accommodating. I asked right away, "I would really love to talk to someone to address my concerns. I came in and spoke to a woman last week, but received little information and the information I did receive was incorrect. This would help alleviate my stress." Nice, uh?

THE INQUISITION. She had one of the technicians talk with me. He proceeded to tell me like the others there were no side effects, oh, but if there are any, maybe some diarrhea, but rarely. Hmmm...the woman from last week told me there is no diarrhea as the contrast doesn't have a laxative effect. They still don't understand people with celiac disease will get diarrhea from drinking gluten-laced contrast.

He continued to babble about no side effects until I just got tired of it, interrupted him and listed all the side effects I read about online, told him about those side effects being the same symptoms I have now and how I have no desire to compound my misery. I told him about my friend and her anaphylactic experience. I wanted to scream DON'T TELL ME THERE ARE NO SIDE EFFECTS! but I was cool. I explained I just need to know someone here understands there are side effects and there are protocols in place. I've received little quality, consistent information which does not give me confidence. He seemed a little miffed that I knew this information, but he was doing his darnedest to remain professional. 

I also asked about alternatives and after pushing back with no, no, no, only then he started coughing up the alternatives: water-based iodine (no way) and finally just water! Yeah, you can do this test with just water, but you have to drink enough water to expand your colon enough to make it photogenic. Funny they always wait until they know you won't give up to give you reasonable alternatives. But...the results aren't as good. I actually had read about salt-water used for this very purpose, but he was unaware of this option.

I also asked him about the gluten-free flavors. He had no clue and became a little sarcastic thinking I was saying they all had gluten not understanding why I was willing to drink the berry flavor. Then I asked if I should have drank one container last night so it would be deposited in the far reaches of my colon, can I only drink one container right now since there isn't enough time for it to get through my colon anyway? He said no. This doesn't make sense to me, but I assume he's like a trained monkey just following protocol. He instructed me to drink what I could and the more the better.

My issue has always been I NEED this test and I don't want the doctor to say the imagery isn't clear enough and demand I have it redone. SO I traded the gluten-laced vanilla smoothie in for another berry smoothie and proceeded to guzzle both down...on an empty stomach. I didn't vomit as so many have. It wasn't as bad as I thought, but YES the colder it is the easier it goes down as I was able to compare the container I brought with me on ice and the replacement he gave me which wasn't as cold. After guzzling, I didn't feel good and walking made the gunk slosh around in my empty stomach making me feel worse, but it stayed down and I didn't erupt vomit in the waiting room. (Note: I don't vomit. Even if I stuck my whole arm down my throat, I wouldn't vomit. Rarely in my life have I up-chucked anything so if you vomit easily, it might not stay down. Be prepared.)

The receptionist gave me encouragement and asked about the contrast. I told her they aren't all gluten-free. She exclaimed, "Good to know!" It's an atrocity they don't know about the products they use when the information can be found through the company. They should know, but instead they give their patients false information which puts people at risk.

My personal technician was kind, friendly, and lovely. All that stress and worry for a whole week and the procedure didn't take more than ten minutes. Good lord.

Immediately after I drank apple juice, then water, then ate fruit, then more water, then a dose of Miralax just for good measure. I felt a little intestinal cramping all day long. Some nausea. The exploding flatulence started five hours later (in the privacy of my own home). Then came the headache from hell that lasted all night.

I read you'll know when the poison is out of your system when your poop stops coming out white. What? Eewwwy! I wasn't seeing white. Hmmm.... I kept thinking maybe the radioactive toxins got sucked into my body and adhered themselves to my fat cells? And then it happened...skip this next paragraph if you don't want to be grossed out as I'm sharing way too much!

THE DUMP, NOT TO BE CONFUSED WITH TRUMP BUT VERY SIMILAR... The next day I expelled the biggest, fattest, dump of my life...only it was ALL WHITE. Pasty. Eeeww. It looked like some alien creature just extracted itself from my body. I stared in horror for a moment trying to see if it had an orange-tinted comb-over. Fearful it might jump out of the toilet and suck my face, I flushed fast and down the toilet it went taking the headache with it. I wish getting rid of Trump were that easy. All is good! Life is wonderful!

BOTTOM LINE. First, ask questions. Then, question the answers. The internet is wonderful for information on products, other people's experiences, and all manner of details so difficult to get from real people anymore. Knowledge is power. Knowledge is survival. I also think it's typical behavior for doctors not to tell you everything that can go wrong. I don't know how many times I've been the 1 in 12, 1 in 25, 1 in 100...and only informed of this after I've had a bad reaction. It's very difficult to trust a health care provider who doesn't recognize chemical sensitivity. These naysayers have no protocols in place for people who are chemically sensitive and no compassion either. I think I am lucky I survived the experience with so little side effects.