Saturday, October 29, 2011

Fun with doctors and poop

This has been another fun week.  This time, however, it was my fun instead of my whole family.

Beware... this is another post about poop.  If you don't like talk about poop or things related to poop... do not continue reading. (and if that's the case, you probably shouldn't be reading this anyway because that means that you must be in 3rd grade still.)

As I have discussed before, my GI problems have been getting a lot worse over the last month or more.  I posted a few details of this on Oct. 12th.  As a reminder, I have had 2 tests that my Gastroenterologist ordered. The first was a motility test to check the rate of motility of my stomach.  The second was basically the same thing but for my entire GI system: stomach, small intestines, and colon, a sitz marker test.  Both tests showed that I have extremely slow motility.  So, the last test she wanted to do prior to sending me to a colorectal surgeon for more tests that they would have to do is a colonoscopy.  She wanted to make sure I don't have any blockages that are keeping me from having a bowel movement.

Last Thursday was my lucky day; the day of the colonoscopy.  Now, in case you don't remember or you didn't read the post about it, I'll remind you that the sitz marker test showed that I had still not digested the entire pill after 19 days.  19 days!!!  Even without any medical knowledge you should know that that's WAY too long.  Most of it should be completely out of my system within 5 days.

However, my doctor did not put two and two together and come up with 4.  She had me doing the exact same prep for the colonoscopy that everyone else does.  Everyone else who is able to digest food in the normal amount of time.  So, she expected me to completely empty out my system in 16 hours.  There's a couple of problems with that.  First of all, that's not going to happen because my motility is extremely slow... which SHE found out with the tests that SHE ordered.  Secondly, for the last month or more, I have not been able to eat or drink much of anything because I get nauseous so quickly.  I have been dehydrated because if I drink more than a few sips of water at a time, I become nauseous.  However, she expected me to be able to drink 8oz of gatorade (mixed with miralax) every 15-30 minutes.  Hello!!!!  I can barely drink 8 oz in 2 hours right now.

Therefore, on Wednesday, when I was doing my bowel prep, I was nauseous the whole time and barely able to get it down.  I ended up getting half of it down.  I called the on-call doc to see what else I could do and let him know I was having so much trouble.  He recommended that I do an enema so I did.

So, the next morning I was getting ready to leave and realized I better call the doc to let her know my stool was not "clear" as instructed.  She said we could try again some other time.  I laughed.  Yeah right!  There was no way in hell I was going through that again!  I told her that as well.  She said the only other option was to go in and have the nurses give me enemas to try to "clean me out".  Joy!  But you know what, I wasn't going to go through everything I had already gone through for no reason.  So that's what I decided to do.

Well, I won't explain in detail what happened once I got to the hospital.  The basics... I had to have 4 tap water enemas.  THAT was fun!  There was one good thing that came out of all of that though.  I learned something about my problems.  I had to use the bedpan after the 3rd enema.  Well, I had no problems going then.  So, in other words, my body will not let me pass stool when I'm sitting up but I am more than able when I'm laying down.  So something is jacked up.  Of course, we already knew that.

I had gotten to the hospital at 9am and was not wheeled into the procedure room until 1230pm.  Keep in mind that the only solids I had to eat was a piece of toast on Wed. morning.  Aside from that, I hadn't eaten since dinner Tuesday night and it was 1230pm on Thursday.  Other than my one piece of toast, I was only able to have clear liquids all day on Wed. and nothing at all after midnight on Thursday morning (wed. night).

Prior to the procedure I had told 2 separate nurses to make sure to ask the doctor to give me at least 2 liters of fluids because of how dehydrated I was.  I have been dehydrated (at least for a person with mito and dysautonomia) for a month and then had to do the bowel prep which made me more dehydrated.  The doc knew I was having problems with dehydration because I had talked to her nurse a couple of weeks ago about getting me IV fluids since I couldn't get enough by drinking because of my dysmotility and, therefore, nausea.  However, I didn't get 2 liters of fluids.  In fact, I only got a little over 1/2 a liter.  WTH!?!?  I was already there.  I had to have an IV anyway.  What would it hurt???  It would have helped me SO much but they couldn't even do that one little thing for me!

Following the procedure, the doc talked to my mom who was there to take me home.  She did not even attempt to wake me up first to try to include me in on the conversation.  She had told my mom that I required a lot of meds to sedate me.  She named them all off and told her the dosages.  My mom, of course, had no idea what she was talking about so she told the doctor to write them down for me.  She said she would... but she didn't.  Not only that, but I don't think I needed that much.  I remember the nurse saying "I'm going to give you some versed now" and the next thing I know I'm waking up in recovery.  I was out cold with the very first dose she gave me.  So, unless I was talking in my sleep, telling them I was still awake and could feel everything, they were giving me meds that I didn't need.

In addition to that, the doctor wrote on the discharge paper that she had to stop because there was too much stool still and "the patient's discomfort."  Two problems with that.  First of all, if she would have given me a different prep based on the fact that it takes me a month to digest my food, there wouldn't still be stool in my system after 6 dulcolax, 1/2 can of miralax, and 6 freaking enemas!  Secondly, she's a bad judge of "patient discomfort" because I was out cold!

Lastly... If you've ever had a colonoscopy, you know that the doctor always gives the patient pictures from the procedure afterwards.  My doctor gave those pictures, along with the other discharge instructions to my mom.  One of those pictures was a of 3 pills in my rectum with a caption saying exactly that.  However, she did not say anything to my mom about that picture.  I think that's something that needs a little explaining.  How do I have undigested pills in my colon???  Why are they not digesting?

So, if you can't tell, I am NOT happy about the way things went.  I am completely and totally exhausted.  I have now felt like shit since Wednesday afternoon.  I will probably still need a couple more days to recover.  AND I still don't know anything more than what I knew prior to all of this.  In addition to that, I'm even more dehydrated than I have been because of the stupid bowel prep.

Soooooo.... I'm on the hunt for a new GI doc.  I have a friend who has mito who has recommended a GI doc down at KU.  I may be trying her out.  However, as with every other doc at KU Medical Center, her first available appt. is on Jan 15th.  Have I mentioned recently how much I absolutely love dealing with this disease?

I will post again soon (hopefully).  A lot of things are going to change.  I have not been doing well over the last month or more.  I know there is more going on with me right now than there ever has been but nothing is being done about it.  Part of the reason is me.  I know how extremely difficult, stressful, and tiring it is to get things accomplished in the medical community.  That's why I keep putting it off.  However, I need to take care of myself and my body.  So things are going to change.  I have a long list of things that I need to do to start making some changes in regards to doctors and the care I'm receiving.  It's not going to be easy.  So if you are someone close to me, and you would like to help, I am going to need it.

I will post again very soon.  In fact, I have a post that's already half written that I'll try to finish in the next couple of days.  In the meantime...

Much love to you all... if anyone is reading.  If not, I'm cool with that too.


xShelbyx said...

My doc wants to do a sitz and a colonoscopy on me. Which test is best to do first? I don't want one test to skew the results of the other if done in the wrong order.... I can't find the answer to this anywhere and the doc isn't answering

How r u doing now?

Robin said...

Hey, Shelby. I'm not a doctor so I don't know for sure but from the knowledge I do have I would recommend doing the sitz marker study first. All of the laxatives that are taken for the colonoscopy may alter the results of the sitz marker study if they're still affecting your bowels. The fact that your bowels were completely cleaned out may make them move faster than normal also.

My GI system is stable now. I was worried about it continuing to get worse. I thought I was heading for needing a G/J tube. However, with a change in meds I've stabilized quite a bit.

Thanks for your comment. Good luck with your tests and let me know if you have any other questions.