Tuesday, September 29, 2009

Worst Case Scenario...Maybe Not...

Yesterday I had an appointment with a new doctor. I believe we are on Dr. H at this point, although I honestly don’t remember anymore… So Dr. H it is…

Dr. H is an uber-specialist. What do I mean by that? She comes highly recommended. I’ve only ever heard good things, and she is nearly impossible to see. It was Dr. C, my rheumatologist, who got me an appointment with her.

Dr. H is a gastroenterologist. I started seeing Dr. D (when I first got sick), also a gastroenterologist, but he was a liver specialist (and it turned out my liver was fine), and Dr. H is known for all things related to the stomach/intestines.

I’ve been having various gastrointestinal issues for a while now. Some that I’ve tried to ignore, some that have gotten progressively worse. It appears that the main concern, as it often seems to be, is that one autoimmune disease tends to bring others with it. So given my history, there is the potential of something autoimmune going on beyond lupus and rheumatoid arthritis, related to the gastrointestinal area.

In the back of my mind, for me, the worst case scenario regarding this appointment would be being sent for a colonoscopy. And, well, that’s exactly what I got.

Now I know, in the grand scheme of things, this is a simple outpatient procedure. Drinking some gross stuff, mild sedation, and two to three hours of my life. That’s it. Easy-peasy.

But I don’t know…

As the woman at the check-out desk attempts to schedule me for the endoscopy and colonoscopy, the power goes out (seriously – I swear, I couldn’t make this stuff up if I tried).

Is that a sign that I should run away with my innards still intact and unexplored?

In the end, I don’t run. I sit there, on pins and needles, thinking how ironic it all is. The nurse is being super nice to me because she knows the procedure she’s about to schedule me for is usually reserved for people at least twice my age.

And it’s ironic that it’s the age factor that bothers me the most, and not the fact that someone’s going to stick a camera up my ass…

The good thing is that Dr. H seems super nice, and she will be the one to do the procedures. In many ways, it seems like this is the most prudent thing to do. But I’d be lying if I said I wasn’t nervous and apprehensive about this, because I am.

The whole lack of control thing definitely comes into play here. As the education nurse reviewed all of the paper work and information about the procedures with me, I laughed to myself at the fact that it says you shouldn’t try to walk home from the hospital after a colonoscopy (go figure!).

But that would be me. I’d probably try to walk home from the hospital just to prove that it can be done. But alas, they won’t start the procedure if your designated driver/responsible adult isn’t present and they won’t let you leave without them, either.

So there it is. This is going to be good. It’s going to be great. Well, maybe it’s just going to be fine…


  1. it sounds like dr. h is a good proactive doctor. i wasn't aware that you were having g.i. problems. i hope that whatever they do find as a cause (because no cause is scary and makes you feel crazy) is simple and does not require tons of medications, drawn out procedures or a new diet.

  2. Stephen Colbert got a colonoscopy on air. It certainly gave me a new perspective on the procedure. http://www.colbertnation.com/the-colbert-report-videos/218576/february-11-2009/truth-from-the-gut

  3. Jennifer, thanks! Yes, I have been having problems for a while, but thought they were most likely lupus related. We shall see...

    And Jeremy, What I don't know won't hurt me...

  4. Leslie,

    Honestly the prep is the worst part of the whole thing, and it isn't awful, just not a lot of fun. But the test is really nothing because you are asleep and won't feel anything.

    I had my first colonoscopy at 30, but I had barium enemas and the test that was the pre-cursor to the colonoscopy (which you were WIDE awake and in pain for) starting in the sixth grade, so I understand all about feeling like you are the youngest person having this.

    I won't tell you not to be nervous, one because it isn't my place to tell you how to feel and two because it is normal to have some fear when you are having a new procedure.

    My thoughts and prayers are with you and I truly hope they find nothing bad.

    Please let me know how it all turns out, I care!

  5. My sister had a colonoscopy in college, and it was awful - then she had to have another, and they put her under - when she asked about it, they said it was so their patients would actually come back. Anyway hopefully it was okay. I had an endoscopy recently and had the whole "you can't leave unless someone's with you" thing. There was a woman there saying she'd changed her mind and didn't want to have the colonoscopy, and I could hear her and felt really bad. They actually offered to put me under for the endo, and while the twilight sedation did nothing for me, that seemed a little bit like overkill. I'd do it for a colonoscopy though.
    Have you ever considered cutting out gluten? I should read more of your blog before asking stuff like that. Anyway, even if you don't have celiac, it can help in a lot of cases. I just got diagnosed with Hashimoto's, and my sister figured out that she was gluten intolerant after years of looking for explanations (they thought it was her pancreas for a while, which was a little scary), so I figure I'll eventually try an elimination diet... but I never cook and I'll have to, so I'm putting it off. Actually right now I'd just be happy if I could find a new doctor. Or even just a doctor to treat my thyroid. Whatever.

  6. Maureen, how have you been? Thanks so much for your thoughts. I appreciate your caring, and will definitely keep you updated.

    Stephanie, feel free to ask questions! I'm not sure I ever wrote much about gluten, but that was the first thing that was tried two years ago, when I first got sick. Going gluten-free helped for about a week. I think it was a placebo effect - any kind of elimination diet, I think, would be cleansing at first. I have my suspicions that it could be a possibility now, but other diet changes I have made recently haven't helped.

  7. Leslie-
    It sounds like you are being proactive which is super!! I am an RN, not currently working due to my lupus and NMO. I was diag.in 2003 at age 49. I too have had GI problems and initially it started out with nausea and vomiting. I was only 105lbs when I was dismissed from the hosp. Needless to say they didn't realize that I had Lupus and I was taken care of by a great GI guy. I did have all the "scopy" proceedures and none of them were horrid at all...but the prep is kinda icky..You just can't sleep the night before. It was decided after I had high dose IV steroids after developing other neuro symptoms, that I probably had CNS involvement and that I was attacking my CNS causing problems with my gastric nerve, ie the vomiting etc. My gastric motility was about 20% and after the steroids I could eat and of course got a ravenous appetite and gained a bunch of weight.. UGh.
    Anyway, I wish you the best and the scope with be fine. Here's hoping that they are able to find what ails you. GI stuff is so annoying! I was prescribed the drug Zelnorm which was considered a GI wonder drug at the time and has since been taken off the market. Ya hoo...
    Best Wishes, Dear!!

  8. DeeGeeRN, thanks for all of the advice and encouragement. I can certainly use it right now, especially from those who have been through it! Good to hear that the scope is not something to dread. I'm sure I'll write something about the adventure, so stayed tuned, and thanks for reading!

  9. I find a colonoscopy/endoscopy such easy procedures with the hypnotic medication one is given. You don't feel a thing physically, but feel really happy emotionally. The reason you can't walk home on your own is due to the hypnotic medication. You can't remember anything from the previous few minutes until it wears off!

    This is just my experience! Of course, we are all different. I take a colonoscopy any day over an MRI or breast biopsy.

    Good luck! Gluten is really a suspect in autoimmune diseases. You can read about it at www.enterolab.com

    That's non-celiac gluten sensitivity, not just celiac.

    All the best.

  10. My DF had a colonoscopy (at the age of 25, so he can sympathize with you) and he tells me the prep was the worst part. He was put under for the procedure himself, and I drove him home. He was fine afterward, though I should note he doesn't have any sort of chronic illness to deal with.

    Regarding the gluten-free diet, if Dr H at all suspects you may have Celiac, make sure you get the blood tests first, before starting a GF diet. The standard blood test is much more accurate if you're still consuming gluten. There's a newer set of tests they can do now if you're on a GF diet, and if you get to that point I'm sure Dr H will be able to help you. I went a long time without any answers about Celiac because I started a GF diet before being tested. (Turns out I don't have it, so I'm just gluten-intolerant.)

    Best of luck to you, and I'm sending lots of hugs your way.