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.

The number on the scale

Usually I get a reprieve at nighttime, and I try to pretend like nothing is wrong.  Not so last night.  It was a rough night, and today started out with a very rough morning.  

Before I started having children, my weight was very steady, but over the course of bearing four babies, it seemed to always be in a state of fluctuation.  After the fourth, we decided we weren't going to have any more, and I realized it was time to get my body back as closely as I could to its pre-baby shape.  I settled very nicely back in at 111 pounds.  I weigh myself every day after showering, and probably 98% of the time, the scale says 111.  Not this morning.  This morning, the scale said 105.  I weighed myself several times with the scale in different places, I checked the scale's calibration with a known weight, I had my husband weigh himself to see if his weight was right.  Still, when I stood on it, it said 105.  

Now perhaps at a different time, I might think that was pretty neat.  Not at this time though.  I've been working very hard to maintain my weight through this, and I've done a good job with it.  Even so, I've realized that if we weren't able to get some resolution, eventually I would start losing weight, and I had hoped that was something we could avoid.  Apparently, I'm going to go there anyway.

January 30, 2013

A bad day and a worse evening

I am hungry.  I am very, very hungry.  Today was not a good day, and this evening has been much worse.  I was starving at lunchtime and ended up buying some macaroni salad with tuna.  I figured the pasta would be easy on my system and the tuna would give me some protein.  I was in pain - moderate, not severe - for a couple of hours afterward.  Since I've been home from work, I've been extremely slow moving and feeling like my strength is literally being sapped from both my body and my spirit.  I've juice fasted plenty of times and enjoyed it, so one might think this wouldn't be all that bad.  But I really need food.  Fasting by choice when you're feeling well is entirely different than fasting by necessity when you're ill.  That lesson I have most definitely learned.

A slight feeling of desperation is starting to come over me.  Tonight I lost as much intestinal tissue as I have throughout this entire ordeal.  A few times have been particularly memorable due simply to the quantity, and tonight was one of those times.  And the feeling beforehand is difficult to describe, like something is eating away at you from the inside.  It's not a good feeling.  

Yes, the shock I initially had to all of this is being replaced by desperation.  I am quite desperate for someone to do something to help me.  I'm on two medications, and each one alone should be providing relief.  Yet for whatever reason, my body is getting hardly any relief at all even when taking both of them.  My stomach is growling, I have no energy, and my hands are shaking, but there's no way in hell I'm putting anything besides water into my body.  Not tonight anyway.

Maybe tomorrow will be better.  One can hope, yes?

January 29, 2013


Ha!  My first entry!  For years, I maintained a "sort of blog" on my own website but then abandoned it when I joined Facebook.  Now I'm in the process of abandoning Facebook and returning to blog mode.  It feels good, and I sure do like having an outlet on my own terms.