Friday, December 7, 2012

Another Day, Another Doctor

I had an appointment earlier this week with a Gastrointestinal Motility Specialist.  She is a normal GI doc who specializes in motility issues (the movement of materials through the GI tract).

I have been looking forward to this appt. for months, especially since it took over 4 months to get in.  She was very thorough.  It was a good test of my memory, that's for sure.  The funny thing is that I have kept a 3 ring binder full of all of my medical records for awhile now.  I almost always take it with me to appointments with new doctors.  That way, if they ask a bunch of questions, and I don't remember the answer, I can just look in the notebook.  However, the last couple of times I took the binder with me to an appointment, I never even opened it.  Soooo I quit taking it.  You know how many times I wished I had that binder with me at this appointment???  (Of course, it's not updated so it still wouldn't have done me any good, but you get the drift.)

After asking a bazillion questions, she had me get up on the table and she examined me.  Then we talked.  She wants me to change the prescription laxative I'm on to over the counter bisacodyl (name brand - Dulcolax).  She also wants me to take a bowel prep once a week to "clean myself out".  If you're not familiar, bowel prep is what's used prior to having a colonoscopy.  Not fun!  However, I'm not real sure it's going to be that bad because the bowel prep barely worked for me when I had to use it for my colonoscopy.  I did the bowel prep and then I still had to have 5 enemas.  Even then, the GI doc at the time said that I still wasn't fully "cleaned out." (As always, I'm sharing a whole hell of a lot about myself... all in the name of blogging.)  

I was worried about two things going into this appointment.  The first being that she would not believe I have mitochondrial disease.  Yes, doctors still doubt the diagnosis despite having a muscle biopsy and genetic testing to prove it.  And two, that she would blame all of my GI motility issues on the narcotic pain medications I've been on since after my POTS diagnosis.

However, I ended up being worried for no reason.  She did not doubt my mito diagnosis at all.  She asked a lot of questions about the pain meds but never brought up any concern that they were the cause of my GI problems.  FYI... I was on a medication (Relistor) a few months ago which counteracts the effects of narcotic pain medication on the GI tract.  The GI doc I've had for a little less than a year who put me on the Relistor also thought, at first, that the narcotics were causing all of my GI problems.  However, since the Relistor didn't work, it proves that my problems are not from the pain meds.

When I left the appointment I actually felt a little down.  At first I couldn't figure out why I felt that way, but after a bit of thought, I figured it out.  If you have ever read my blog before you probably think that I have resigned myself to a lifetime of being sick.  Sometimes, okay, most of the time, I probably display to the world that I don't hold out much hope of getting better.  A lot of people call that being negative.  I call that being a realist.  Well, contrary to popular belief, I still hope and dream that I will be better again.  I am also in denial every now and then.  Usually I keep both of those things hidden from the world and buried deep inside.  That way, I can't get hurt when those hopes and dreams don't come true.

Well, it obviously doesn't work.  Come to find out, I was looking forward to my appointment with the GI motility specialist because I was holding out hope that she would have a better solution to my GI dysmotility. Instead, she said something that my previous GI doctor hasn't said.  She said that I will be on laxatives to keep my system moving for the rest of my life and that there's not a whole lot more she can do. The only change she made was what I discussed above and the only reason she did that is because the medicine I'm currently on causes a lot of bloating.  However, she didn't have any solutions to the lack of motility of my entire GI tract.

Those statements ended up being harder on me than I imagined they would.  I guess I just held out too much hope that she, being a motility specialist, would have a better solution to my problems and would, therefore, be able to keep me from needing a G/J tube (feeding tube) in the future.  However, if the motility specialist at a huge academic hospital doesn't have any better solutions, I'm probably out of luck.  So that explains why I was little down/sad after my appointment.

On another note, while I'm talking about my current health status...  I have ANOTHER UTI.  That makes 4 in 13-14 months.  That means that I need to see a Urologist.  There's a good chance I have something called neurogenic bladder.  One more thing to add to my list of health problems that are caused by my mito.  You know, since I don't have anything else to worry about.  I'll update on the bladder situation when I know something.


Diane said...

I just started following your blog.

When I read your posts it is like listening to my 17 year old with Mito-

My heart goes out to you, your children and your husband.

Thank you for sharing your life, as I post about our lives with Mito- sometimes I wonder if I should- and then I read a Mito Patient's blog like yours and it helps me understand so much better, we feel less crazy knowing we are not alone.

Wishing you a great holiday with a good bounce and no mito flares-

Robin said...

Thank you for your comment. It is always nice to hear from people who are dealing with the same thing I am and appreciate my blog. I, like you, feel less crazy knowing I'm not alone. It is for that reason that I continue to post about my life for the entire world to see.

I was able to enjoy my Christmas gatherings with family with little mito symptoms. I hope you and your son/daughter were able to do the same.

Much love,

Gastrointestinal Specialist said...

just linked this article on my facebook account. it’s a very interesting article for all...

Robin said...

Thank you. Can you please give me a link to your facebook account?