Not so Good Holidays

We went to the cabin for Christmas, as we do every year.  I enjoy the time with my husband's family.  But I had such diarrhea there that it was annoying.  I felt like I was always in the bathroom.  It hasn't really stopped since we've been home, either.  I did my pill camera endoscopy on Wednesday, and it went completely through my system in less than 7 hours.  I had such butt pee that day.  The only reason I knew it had passed was the blinking light in the toilet.  This disease leads to such charming things.

Now both my husband and I are dealing with colds.  When I have a cold, I snore.  And it drives my husband crazy, even though he snores whenever he doesn't use his CPAP machine (which he forgot to bring to the cabin).  So last night I slept on the couch, which meant I didn't get good sleep at all.  So today, I'm home with my son while my husband is at work, and I am exhausted and suffering from a cold on top of the issues I'm having with my Crohn's.

Holidays

I haven't updated in a bit.  I went to my doctor's appointment a week ago, and he basically didn't have any advice for me.  Frustrating to say the least!  He put me on amitriptyline which can help with the pain.  It also exhausts me, which is something I didn't need more of.  I sleep so much more in the past week than before.  I did the "Agile test capsule" for the camera capsule test.  It passed without incident.  I swallow the pill camera on December 28.

My blood tests came back negative for celiac.  I am very relieved at that.  The doctor didn't think it was celiac because he said he saw no death of the villi which is usually evident, but he wanted to verify that was the case.  I guess that means the Crohn's is in the start of the small intestine (at the very least).  So since I've had sores in my mouth and throat in the past, and ulcers from the terminal illium (when I had it) throughout the large intestine and in the rectum and anus, it seems as if the Crohn's pretty much covers my entire digestive system.  The doctor at the Mayo clinic told me it doesn't spread, but if you have it in one area, you always do, but sometimes it flares there and other times it is quiet.  That scares the crap out of me (no pun intended).

So it is the holidays, which are often quite stressful for me anyway, but this year being sick and trying to decide about work are making it worse.  My son's school had the Hanukkah dinner on Tuesday night, which was the first night of Hanukkah.  I wish it had been a different night, as it meant we couldn't do our normal family tradition.  My son loves the Kindle Fire we got him.  But he was up very late that night and the next day was a field trip at school.  I volunteered at both and felt miserable, but my son really loves when I volunteer at school, so I do what I can.

Now we're getting ready to go to my husband's family for Christmas.  I enjoy going, but I feel so awful that I worry about it.  I hope it is fun, but I also hope I feel ok.

Letter from Work

I got a letter from my employer on Friday.  It basically says that I'll be exhausting my short term disability soon, and that if I don't know with a reasonable certainty when I can return to work, my employment will be terminated.  I kind of figured this would happen, but it still unnerves me.  I've worked there for over 12 years.  It is the longest place of employment I've ever had, and it is a good employer for me, because of the short term disability coverage, and being a large corporation that has pretty good leave policies.  I can't return to work, however, knowing that if I did, I'd be missing at least 2-3 days per week being sick.  And I don't know when I'll feel better.  So I guess it is all over for me at that job.  I didn't particularly love the job, but I liked the security (and getting paid).  At least I have the long term disability coverage.

I've been in so much pain off and (more) on, that I am starting to think this is normal.  And the pain is exhausting!  It really tires me out.  It makes living my life so difficult.

Results not what I expected

I had my colonoscopy and upper endoscopy on Tuesday.  The prep was hell, but my doctor gave me enough pain medications that I didn't really feel anything when he did the tests.  Of course, that also meant that I didn't realize what he told me afterwards.  When I got home, I slept until around 6:00.  When I woke up, I couldn't remember at first if I had had the tests yet or not, or if it was 6:00 in the morning or evening.  I checked the clock, and it was in the evening.  So I called my sister, who was with me after the exam, and asked her what the doctor said.  She related that he told us that the large intestine showed no ulcers.  That was good news!  But it didn't explain why I still have symptoms.  He also said he took some biopsies during the upper endoscopy, and that I should get the results in the next few days, and they'd be sent electronically.  Then I spent the entire night vomiting.  I hate what pain meds do to me!

Instead of getting results electronically in a few days, I got a call from Tiffany, his patient coordinator the next day, saying that the doctor got my biopsy results.  It is never good news when they call you right away.  That is a given.  The first thing she said is that I have a condition called duodenitis, which according to the doctor, is caused by excessive use of aspirin   However, I haven't taken aspirin in years.  Maybe 10 years or more.  I might have taken 3 or 4 ibuprofen in the past 10 years, but no more.  So I have no idea what that is about.

She also said there was inflammation in the beginning of my small intestine.  It could be from Crohn's or from Celiac Sprue.  I really REALLY hope it is the Crohn's.  I don't want to give up pizza!  And honestly, it is more than enough to deal with Crohn's, I don't want to have to eliminate gluten from my diet.  But I'm getting ahead of myself.  I will have a blood test after my appointment on Wednesday to see if it is Celiac.

I also get to have a pill cam test.  This pill cam test is a huge pain in the ass!  It involves first taking a "fake" pill cam to make sure my system can pass it.  This fake pill will eventually dissolve.  Then I have to do an 8 day bowel journal before I can do the actual test.  The test involves going to the doctor's office first thing in the morning, taking the pill, and then getting a special belt that will receive the pictures transmitted by the pill camera.  Then I have to follow some clear liquid diet restrictions, then at the end of the day, I get the belt removed.  It is all very annoying.

I also got a call on Wednesday that my long term disability claim has been approved.  That is such a weight off my shoulders.  I got the call from disability before I got the call from my doctor's office.  I was sure that once they got my colonoscopy results, they'd cancel it, even though I'm still having symptoms.

I'm still unsure what to think of the results.  I don't get the duodenitis, and I hope it is not celiac.

Do. Not. Want.

Well, I have another colonoscopy on Tuesday.  This is the second one this year, having had one in early July.  I wish there was some way to make the prep less miserable.  I'd settle for unpleasant.  Drinking all that crap, then crapping all that crap.  Ick.  And I always vomit from it.  Today I am making a conscious effort to drink twice as much fluid so that the IV might not be such a miserable thing and it might not take more than 2 or 3 attempts.  This is a special event, too, since I'm also getting an upper endoscopy.  I think I'm going to ask them to make sure I am 100% out for these.

Since tapering on the Entocort I've had increasing pain and increasing D.  Lovely.  I hope the tests next week show something that can be easily fixed, but I think that is a fool's hope.

Feeling Good leads to Feeling Bad

I've been having a string of relatively good days recently.  Most days, I've had little pain and little D for about 4 days now.  Until today.  I've been having some severe pain off and on all day.  I didn't really want to eat, but when I finally got too hungry, I had a bagel.  That was a mistake.  But I can't just not eat ever again.  I wish that could happen, though.  I also wish I knew what was going on.  I guess that will wait for next week, when I have a colonoscopy and upper endoscopy.  But in the meantime, today has sucked major suckage.  I don't want to eat, so I don't want to make dinner for my family.  I have almost no energy, so last night's dinner dishes are still dirty in the sink.  I should have gone to the grocery store today, but I didn't, which means I have to go over the weekend, something I don't enjoy.

I have to start my low fiber diet today for my colon prep.  It isn't much different than my usual diet, except what I prepare for my family.  It is hard to find meals everyone will eat, with my son a vegetarian, my husband a "meat and potatoes" kind of guy and me not able to eat a lot of fiber.  I usually make pizza about 2 or 3 times a week, as I can make one with pepperoni for my husband and one with just cheese for me and my son.  But I didn't get to the store, and I don't have any pepperoni.  I don't think I have enough mozzarella for pizzas.  I guess I'll have to wing it.