January 31, 2013

For the record. . .

When all of this started happening, I was totally mortified at the idea there might be even a miniscule chance we'd end up ever having to talk about the possibility of removing part of my colon.  But you know what?  That idea doesn't sound so bad anymore.  

I'm drinking my hot green tea with raw honey as I type.  I'm kind-of excited because I just finished up this jar of raw honey, so tomorrow I get to try my new "really raw" honey - with honeycomb, pollen, and propolis.  It's supposed to be very healing.  We'll see. . .


For my sake and for the sake of anyone who happens to stumble upon this site and who may be going through something similar, I'm going to write about how we got to this point.  I figure, too, that if something ends up happening to me and I'm unable to tell the story, maybe my husband can just pull up this blog and the doctors will have the background information they need. 

The Tuesday before Thanksgiving (I guess that would be November 20), I started saying "I'm not feeling great.  I think I'm getting sick.  I hope I can make it okay through Thanksgiving."  My daughter had recently been very ill with the flu, so my getting sick wasn't a big surprise.  I fumbled my way through hosting Thanksgiving dinner without too much trouble and then immediately proceeded to get very sick.  I ran a fever for 11 days straight - 6 days with a high temp (up to 103F each day) and then 5 days with a lower temp (up to 101F each day).  Super sore throat that prevented me from speaking louder than a whisper, congestion, severe coughing, and chest pain.  It was awful, but this year is a tough flu year, so I trusted I'd just slowly get better the way my daughter had.  Two and half weeks out, though, I was still not better and was starting to have a lot of problems with my ears and sinuses.  

My husband brought me to the doctor's so I could be checked for a secondary (ear and/or sinus) infection.  We saw the only doctor available, who said there was no other infection and that I just had to wait for the flu to run its course.  (As an aside, the doctor we saw was arrogant and unpleasant and pretty much had a rotten personality.  Even my husband, who doesn't pay much attention to things like that, thought she was an absolutely miserable doctor.)

Throughout the next week, I continued to get worse.  I had lost about half of my hearing, I was frequently nauseous and dry heaving, and the pressure in my ears had become nearly unbearable.  I felt like my head was going to explode and like my eardrums were going to burst.  It was the afternoon of Friday, December 14.  I had a holiday party to go to for work, but I couldn't stay.  I simply wondered around aimlessly in a daze, then went out to my vehicle and called my husband crying.  I thought I needed medical attention but was in no way willing to go back to see the doctor we had seen the previous week, so the options seemed to be going to the emergency room right then or waiting until the evening to go to urgent care.  We opted for the latter and went to urgent care as soon as it opened.  I was lucky that the doctor there was compassionate and personable.  He said the pressure I was feeling in my ears was not from fluid or an infection in them but rather from a sinus infection, and he prescribed me amoxicillin. 

After a couple of days, the pressure started to lift, my hearing was coming back, and I had noticeably more energy.  Mind you, I typically do not take any medications, but I know about the importance of finishing antibiotics when they've been prescribed.  I started to talk about how bad the side effects of the amoxicillin were getting (even though I was eating yogurt, drinking kefir, and taking probiotics), and I came to dread when it was time to take another pill.  Happily, I finished up the treatment on Chrismas Eve.  Instead of starting to feel better, though, the "side effects" didn't go away and instead got worse.  I started losing energy again, and I went back to sleeping 12 hours at nighttime and needing naps during the daytime. 

I began having severe abdominal pains whenever I tried to eat, and in addition to (mild) diarrhea, I started passing bloody mucous and then what appeared to be tissue.  It was mortifying, and at first I didn't tell anyone.  Nobody should see those things come out of their body, and I was in a slight state of shock.  The chunks of tissue started getting larger, some of them with obvious capillaries, and coming out more frequently.  After a couple days of passing tissue 10-12 times a day, I shared what was happening with my husband and then a couple friends at work and then my mother-in-law.  By then, I had realized I had a serious problem that likely wasn't going to magically disappear.  

I called the doctor's office for an appointment with *my* doctor and was told the ONLY person available to see me that day or the next was that awful, terrible, rotten one I had seen when I had the flu / sinus infection.  I had recently switched to that particular practice because I thought I would prefer having a female physician, but it became obvious that the gender doesn't mean nearly as much as being able to see your own doctor when something is wrong, not just when you need a regular ol' annual exam.  So. . . I decided to call Dr. Hughes, who our family has been with for years and who sees my husband and the three boys.  They were able to get me right in when I told them what had been happening.  Me being who I am, I brought in with me a few samples of what I thought to be intestinal tissue in ziploc baggies.  I figured that would help with the diagnosis.  He confirmed it was tissue and said my bowels were disintegrating.  (NOT what you ever want to hear, by the way.)  Given the series of events, he believed I had a C Diff infection and put me on Flagyl.  Within two days, I couldn't believe how much better I felt.  I had energy!  I wasn't in pain!  I enjoyed eating again!  I stopped passing tissue!  And then I finished the meds.  Within just a couple of days, I was right back where I started - doubled over in pain, struggling to eat solid foods, and passing tissue again.  

I called and got another doctor's appointment on Friday, January 18.  My lab results had come back negative for C Diff, so Dr. Hughes said I must be having an autoimmune reaction to the amoxicillin and that my body must be attacking itself.  He put me back on the Flagyl but at a lower dose and for a longer period of time (two weeks instead of a week and a half).  His hope was that, along with a low residue diet, it would calm my body down and things would go back to normal.  They didn't.  I called to report in, and he made an appointment for me to see a digestive disease specialist.  He also called in a prescription for an anti-spasmodic / anti-ulcer medication (hyoscyamine sulfate).

That was Thursday, January 24, and I saw the specialist on the morning of Monday, January 28.  Everyone at the office was kind, and I felt comfortable there.  They came up with a plan for lab work, a CAT scan, a colonoscopy, and a biopsy.  

I spoke with a nurse this afternoon, and she said my blood work came back normal.  I don't know if that's good or bad.  I'm scheduled for the CAT scan next Monday and for the colonoscopy and biopsy on February 14 (yes, on Valentine's Day, but it was the earliest date I could get).

In the meantime, I continue to suffer with pain, difficulty eating, and lack of energy.  And in addition to diarrhea, bloody mucous, and tissue, now I'm passing something else that I can't even begin to speculate as to what it could possibly be.  Tonight, I took my last Flagyl, and I'm somewhat terrified about what's going to happen when it's out of my system.  When I was on the phone today with the specialist's office, I was advised to go to the ER if things get too bad.  I have an emergency hospital bag packed and out in the vehicle.  I really hope I don't end up needing it.


  1. Oh Teresa, I am just so sorry this is happening. I am wondering if you have Crohn's disease? Has anyone mentioned this? Hope you will find out more on Monday!

  2. Hi Kristi!! I don't think I have Crohn's because my issue *seems* to be limited to my colon. My pain is very low, and even though I'm not eating much, I seem to be getting nutrients. A good friend's husband has Crohn's so I have a fair amount of familiarity with it through them. She said that when he first got it, he literally turned gray because his body wasn't able to absorb any nutrients at all. He's had it for almost ten years and it hasn't once gone into remission. :( My GP mentioned colitis as a possibility, but the specialist's office doesn't want to make any speculations until they get the results of the various tests.

  3. T - I have thought about you everyday since we reconnected on FB especially now. I am not a religious person but I definitely consider myself a spiritual person and I pray everyday for your physical and mental health. Have faith that you will figure this out! Jill (by the way, this is the first time I have ever read or responded to a blog, you're special) :)

  4. Thanks Jill! I've been super happy that we reconnected too! :)

  5. Yes, good idea to wait for the tests! My father has Crohn's disease but it took years to diagnosis him. I'm trying to describe symptoms without being too graphic but always has the runs and they found blood for years. He can't keep weight on he's 5'11" and weights about 160. But again I agree to wait for all tests to come back! I am loving reading your blog! :)

    1. I'm so sorry it took years for your father to be diagnosed. That's awful, and I feel so badly he had to suffer for that long - and that it sounds like he's still suffering. :(((