Prednisolone

At this point I have reduced my B12 injections to every other week rather than every week. My blood tests are now showing my B12 levels as being in the "normal" range... finally. It is only a matter of time before I decide to stop the injections all together. I am thankful that Dr. M (my rheumatologist) is leaving this up to me. 

At today's appointment I saw the APRN at Dr. M's office. This was my first time meeting her and she was pretty clueless about my case so we briefly went over it together. By the end of the visit she prescribed me a Medrol does pack (Prednisolone), which is a steroid that is used to treat many medical conditions (google it). She prescribed this to see if it would help with my fatigue. Now that my B12 levels are reading as "normal" it is clear that the injections have done all that they are capable of doing for me and the cause of the fatigue that is still present must now be determined. The possibility of Lupus is now roaring, and tests for this have been done multiple times. With a family history of Lupus and a diagnosis of Hashimoto's it is unclear whether my positive ANA is solely related to these reasons or whether there is something else going on. Since I had just received a B12 injection I was instructed to wait one week before starting the steroid. 

I started the Medrol dose pack on March 21, 2012 and finished it on Monday the 26th. I do not have much to say about the results. I do not feel as though it helped with my fatigue, though I do feel I was better able to concentrate and felt more focused for about 2 days out of the 5 I was taking it. Bottom line, nothing to really brag about. 

Colonoscopy Aftermath

A week after the upper endoscopy/colonoscopy procedure I felt absolutely terrible! I was having terrible pains in my stomach, I had barely pooped in a week, and it hurt to breath. I called the doctor that did the procedure to inquire about my stomach pain and her response was "You should feel better by now, I think you just have irritable bowel. Your results all came back normal. I think you just need to let your body rest and if you are still having troubles in a few months then call me back." I thought to myself, "Well that's great... I don't know anything about irritable bowel and you have not helped me in any way, shape, or form". A few days later, I still had the pain and I decided to call my primary care doctor and schedule an appointment. I could not get in to the APRN so had to make an appointment to see a Dr. that I have never met before. Given my experience with health care providers I was not thrilled with this idea, but needed some advice on what to do.

Upon meeting this doctor, I explained my current situation and the recent procedure. Upon pressing on my stomach the Dr. told me that I was clearly backed up and he could tell by looking at my stomach never mind feeling it. He instructed me to follow a very strict BRAT diet (bananas, rice pudding, applesauce, and toast) for one week, drink 1 liter of water a day, stressed the importance of not taking any laxatives or stool softeners, and suggested that I come back for a follow up. Though it did not sound appetizing at all, I agreed to follow the diet because I was desperate to feel better.

I stopped at the grocery store on the way home and picked up some bananas, applesauce, water, and bread (there was no way I was going to eat rice pudding). I went home and began to google and research BRAT diets. Much to my surprise all of the information I found stated that the BRAT diet was binding and was most commonly used for diarrhea. Confused I called my aunt who is a nurse to ask her about it. She was quite conflicted as to why I would be put on that diet as well considering I am in pain and can not poop. I felt really frustrated and completely confused, but I tried it anyway.

A week of watching the people around me eat pizza and real meals while I spend most of my time peeing out the ridiculous amount of water I was drinking, was absolute torture. In addition to the diet, I tried everything to help myself go to the bathroom, including strange positions on the toilet and hot baths... nothing worked. Again I felt frustrated... and completely SICK of eating applesauce and bananas.

I went back to the doctor in a week for a follow up. This time the appointment was with my normal APRN. I pretty much told her that the diet didn't really change anything for me. The pain in my stomach had started to go away, and a I had pooped (though very minimally). I told her I was tired of being tortured with food so I was officially giving up on the diet.

It took my a good three to four weeks to feel like myself again after those procedures. And it took me almost two months to have "normal" bowel movements again. And in the end I did not have any more answers than I did before the procedure... but at least we were able to rule some things out (Crohn's Disease).

Double Procedure

I woke up in the morning nervous but excited for the procedure, hoping it would give me more answers as to why I feel so terrible. I took a shower and dressed in loose fitting clothes as instructed. My mom drove me to the endoscopy center for 10am and waited with me until I was called in.

When I first arrived I was asked to fill out some paperwork and provide my ID, insurance card, and a list of current medications. As I was filling out the paperwork there was a section that said "referring doctor/primary care". I asked the receptionist if the person that I listed in this section would receive a copy of my results, as she said yes I started to write down Dr. M's information. She then tells me that it has to be my primary care doctor. Me: "O.K. Why? This is my rheumatologist and he is the one that referred me here and he wants a copy of the results." Receptionist: "They have a list that they use and it only has primary care doctors on it so that is what you have to put down, otherwise the only people that can have a copy are you and Dr. V." Extremely confused and frustrated I start to write down the name of my primary care doctor and in the back of my head I am wondering what list she is talking about and why she can't just have my records sent to Dr. M., after all they are MY records and I decide who gets them not you... Receptionist: "It has to be an M.D. it can not be an APRN." Right... of course, because the woman that I see regularly, and am in the process of writing down is an APRN... At this point I am ready to jump over the counter and strangle the lady sitting in front of me. I have not had anything to eat in over 24 hours, I've been shitting for almost 24 hours, I'm exhausted, and I'm nervous as hell... now is not the time to piss me off. I scribble both doctors names off of the piece of paper and continue to harass the woman about how it makes no sense that I can not have my records sent to my referring doctor who happens to be a rheumatologist and not my primary care, at this point I had tears in my eyes out of anger and frustration and she must have been able to see this because she finally decided to tell me that I could ask the nurse when I get in to the back. Aggravated I walk away and sit with my mom until my name is called.

I walked from a waiting room that looked like a regular doctors office through double doors into a room that looked just like the hospital and immediately felt my anxiety kick in. A very friendly nurse showed me wear to change, explained how to wear the gown, and where to put my clothes. She took me to my stretcher and covered me in a few layers of blankets because I told her I was cold. Even though I felt a lot of anxiety this woman was really helping to keep me calm. She was so nice and explained everything to me... Then came the time to put the IV in... She tied the bad around my arm and inspected my veins... She then decided that  it would be best to wrap my arm in warm towels to bring my veins out more. I knew at this point that it was going to be bad. I informed her that the past few times I have had blood work done, they had quite a bit of trouble with my right side and have had better luck with the left. She heard me but wrapped my right arm up and said another nurse would be in soon. A new nurse walked in and introduced herself. She unwrapped my arm and attempted to insert the IV 3 times with no success and gasps of pain from me. It was clear that she felt terrible and she kept apologizing to me. I told her it was O.K. I was used to it because it happens a lot with blood work and told her that my left side usually works better. She seemed surprised that I didn't tell her this before she tried and asked why I didn't tell her that... "Well, I told the nurse that was in here before you". Again she apologized and told me that she was going to let the anesthesiologist do it. A few minutes later I could hear her talking to the anesthesiologist and he came in to introduce himself and look at my arms. He asked her to get him a few things (I don't remember what he said and didn't know what they were anyway) and shortly I was being wheeled into the room that I would be in during my procedure.

I was so nervous at this point. I saw my doctor sitting at a computer and two other women preparing things. There was suctioning noises, things were beeping, and it felt like I was getting moved in every direction as people took turns prepping me. Before I knew it I had oxygen in my nose, a plastic tube strapped around my head and into my mouth, and the anesthesiologist  attempting the IV. With my other hand I grabbed the bar to the stretcher in pain, and a nurse saw my anxiety. As tears started rolling down my face she rubbed my head and held my hand and reassured me over and over that it was going to be O.K. I was so thankful to have her there. At 26 years old I felt like a scared child and she was my only source of comfort at that time. The anesthesiologist warned that I would feel a pinch as he was giving me a shot to numb my arm in attempts to get the IV in again. I never once looked, I never do... I think if I do I will either pass out or throw up. Finally the nurse told me I was going to feel a burning feeling on my arm and the medication would be coming through the IV. She was not kidding, it hurt like hell and I remember attempting to say "my arm hurts" through the plastic tube that was strapped into my mouth, with tears rolling down my face and oxygen blowing into my nose I was instructed to role onto my side and I did. The room got blurry and that was it.

I woke up back in the quiet prep room. I opened my eyes and saw spots of blood on the blanket that was on me and immediately started to cry. A nurse came in and asked me over and over why I was crying. I didn't have an answer so I said "I don't know". I still don't know why I was crying, I just was. After being awake for a few minutes my mom came in and I realized I had pain in my hand... the IV had some how ended up in my hand.

Prep - Double Procedure

As the day of my procedure was approaching I started to feel nervous. Scheduled for a Friday, I had to take that Thursday off from my internship for prep and also Friday off from work. I went out Wednesday night to buy everything I needed for prep and didn't realize how embarrassed I would feel until I was handing the cashier a box of Dulcolax and two bottles of magnesium citrate. I was imagining the cashier thinking "what the hell does she have stuck inside her?!". After all, it was enough laxative for an entire family.

When I woke up Thursday morning I took four Dulcolax tablets as instructed and prepared myself for a day of fasting.  Since I took the day off from my internship, I decided to head to the office and get some work done since it is only 5 minutes down the road. By 10am I was already feeling frustrated that I couldn't eat and began drinking water in attempts to curb my hunger. By 11am I had eaten all of the lifesaver candy (with the exception of the red) in the candy bowl at work. I realized after the third yellow lifesaver that I prefer the red when it comes down to choosing a color of candy... for example, the red starburst, skittles, and sour patch kids are always the best... O.K. maybe the pink starburst is the best, but you get what I'm saying. When fasting for my double procedure I could not have anything with red dye in it... which meant no red lifesavers. By the time 2 o'clock came I was suddenly having terrible pains in my stomach and knew it was time for me to go home.

I got home and decided to boil water with a chicken bouillon cube in attempts to trick my brain into thinking I was actually eating something that would fill me, and of course because I was starving and at least wanted to taste food.

Hungry and grumpy I spent the day on the couch. Thankfully I had my sister to go out and get me some jolly ranchers and ice pops since the bouillon cubes, iced tea, and water got to be really boring by dinner time.

I do not need to go into detail about the rest of the day/night as we all know what laxatives do. I will say that I was absolutely miserable not being able to eat and I think that was the worst part of this whole experience. Well... drinking the magnesium citrate was also quite awful. I really didn't expect the bottles to be 10 ounces each, for some reason I imagined a smaller bottle. I drank the first one at 6pm, with my sister there to encourage me I managed to drink the entire bottle rather quickly. I decided to put it in a glass so it would be easier to chug, and then decided that using a straw was my best bet. I had to drink the other bottle at midnight so I decided to just stay up. When the time came I dreaded the taste of the sour, tart, acidy, lemon laxative and reluctantly stuck my straw in the bottle and reminded myself that it was mind over matter. Half way through I wondered if I would be fine with what I had already drank and considered pouring the rest down the drain... I glanced at my instructions from the doctor which clearly state "drink the entire bottle", since entire was underlined I figured it must be pretty important and went back to my straw. I ended up with a terrible headache that night and could not wait to go to bed knowing that tomorrow it would be all over before I knew it. I sucked down the rest of the bottle and to be honest by the end, I was really starting to feel as if I was going to throw up from the taste. This will all be over tomorrow.

Dr. M

I returned to Dr. M today for a checkup to see how things are going and plan the next steps. I informed him of my upcoming endoscopy and colonoscopy, and though he was quite frustrated that Dr. V (the G.I.) did not send him any record of my appointment with her, he was happy to hear that it was scheduled. He questioned my fatigue and the effects of my B12 injections. Starting with today, the plan was to cut the injections down to every other week... hoping that the B12 had now stored in my system. I expressed my concern with this, as I feel as though the injection once a week is still not enough, and the subliminal B12 I was given does not seem to make a difference once I start to feel fatigued. Dr. M sympathized with me and agreed to continue the B12 once a week at least until we can get some results back from the G.I. doctor. I also told him that I have started to see a pattern occurring, after I eat a meal (usually large meals) I become so exhausted I feel as if I could fall asleep on the table. I sometimes become so fatigued after eating that I have a very difficult time functioning. Dr. M raised an eyebrow and said that it sounded like a blood glucose issue and decided to look into it.

Before the appointment ended I decided to ask Dr. M how he felt about a gluten free diet and explained that I had been playing with the idea in my head for a while since I have read about a lot of success stories from people with Hashimoto's going gluten free. He told me that it would be very interesting to see if it made a difference however, I would need to be very strict and should not expect to see true results for at least a month as it clears out of my system. He did not shut the idea down yet did not seem to find it necessary so I remain torn. In my head I have made the decision to wait and see what happens with the G.I. doctor before making the gluten free decision.

Dr. M gave me a lab form to get my blood glucose levels checked and also to get my B12 levels checked again. He decided to see my back in 6 weeks after the results of the endoscopy and colonoscopy are in.

Dr. V (G.I.)

I was extremely irritated while I impatiently sat in the waiting room for 45 minutes past my appointment time waiting for my name to be called. I remember thinking, "Well this is a great first impression" as I recalled the forms that were mailed to me from this office stating that if I was 10 minutes late I would be charged a fee and be required to reschedule. I thought about getting up and making this point to the receptionist... but I didn't.

When I was finally called I met with the doctor who asked me questions about what brought me in to see her and my past medical history. She asked questions about my symptoms and implied that she wanted to diagnose me with irritable bowel, but because of the B12 deficiency and the existing autoimmune condition of my thyroid, she decided to schedule me for an upper endoscopy and a colonoscopy to hopefully rule out any other conditions including Crohn's.

She also gave me a lab from to have a genetic blood panel done to test for my predisposition to digestive diseases. (ugghhh :( more blood work?)

Though the thought of having a camera put down my throat and another in to my butt, made my stomach turn, I knew this was one more step towards having some more answers. The double procedure would be done by her in about a month.

Dr. M

I walked into the doctors office today and upon checking in the receptionist handed me a lab form. Blood work again... as if I wasn't completely over being a pin cushion... Anyway I met with the doctor first. When he asked me how the B12 injections were working I explained my situation to him. They most definitely made a difference, but I felt like I needed more... like one injection a week was simply not lasting long enough. I also explained that after missing the one injection due to a recent snow storm causing mass power outages, I was back to feeling absolutely exhausted, to the point I was at when I had first met him. Convienently enough the lab sheet I was greeted with was to test my B12 levels. Dr M. exlpained that by now the B12 should have stored up in my body, however from the sounds of it, it seems that the B12 is not being absorbed and that is why the injections are only making short term energy differences.

The solution = see a G.I. doctor and continue to recieve weekly B12 injections. When B12 isn't being absorbed it is a sign that there is something wrong digestively (because that is where the absorption occurs). I was referred to a G.I. doctor and was also given B12 tablets. When I start to feel the weekly injections wear off, I am to take a B12 tablet everyday until I go for the next injection.

The earliest i could get into the G.I. doctor was for the first week of December, and I do not go back to see Dr. M until January. Until then I will continue to force feed my body with B12.