Wednesday, December 21, 2005

Australian IT - Sounds of logon from the john (, DECEMBER 13, 2005)

Australian IT - Sounds of logon from the john (, DECEMBER 13, 2005)

Ok, all of you tummy troubled...fess up...are you one of the folks they flushed out as being part of the OVER HALF of people with wifi at home who use the computer in the bathroom??????????

Monday, December 12, 2005

Lucy

Lost your email and thus your blog too...drop me a line.

Sunday, November 27, 2005

Camera Update

I have been meaning to get here with the newest update on the camera endoscopy. My doctor called Wednesday. She first spoke with my partner since I was at work and she called me at home. She gets high marks in my book for actually speaking to my partner, especially at length. Then she called me at work.

We spoke for quite a bit. Camera endoscopy looked good as far as all that small bowel stuff. She was also reassured about the mystery spot. She has decided that at this point surgery isn't necessary to remove the mystery spot. YAY!

However, my stomach looked to quote her "bumpy and inflamed" She says the camera isn't such a hot way to look at stomachs so she wants to do a regular upper endoscopy.

Since I have been doing relatively well over the past few weeks she also has decided to hold off on the remicade for as long as we can. Another yay for that. I think she also perhaps concerned about the hives and how remicade and hives won't mix well.

All and all, pretty good news. Upper endoscopy is not my favorite idea of how to spend a day but it could well be worse.

Tuesday, November 22, 2005

It's a Waiting Room That Keeps Patients Busy - New York Times

I wish this was like my GI's Office: Jay Monahan Center for Gastrointestinal Health

Beepers for when the doctor is running late would be great, as would internet access!

Saturday, November 19, 2005

Hives

I hate HIVES. Really hate them. I didn't like them when it was a clear cut thing. I didn't like them when my munchkin brought home chicken pox to my immunotherapied body and I had them. I really don't like them when I get a virus. I REALLY REALLY don't like them as part of the fun of being on an antibiotic I am apparently now going to be adding to my list of no no antibiotics. (For those keeping track Cipro is now added to: penicillin, sulfa, and flagyl as no no antibiotics) Ok, so I took my last dose of Cipro this morning, so surely after 10 days of scratching like a monkey, I shouldn't itch anymore? noooooooooooooo still itchy. Still hive-y. Hives BITE.

Tuesday, November 15, 2005

Flashing lights...

Test went ok. Prep was sucky but I survived. Swallowed the camera easy peasy. The leads kept pulling and the belt was less than comfortable but all and all not bad. No results until the pics are uploaded and the doc reviews them.

Monday, November 14, 2005

Testing, Testing 1-2-3

Tommorrow is the big day for the capsule endoscopy. All well and good except for one thing: when the doctor chatted this up she failed to mention prep. I thought 8 hour fast was it. Nope. The fun and games start this afternoon with a delicious bottle of magnesium citrate after 5 hours on clear liquids. (probably longer because as soon as my coffee is gone, clear liquids it is) I am not looking forward to this at all since Mondays are the day when I have something to look forward to after work. (EVEN if the whole cleaning out my insides was at all appealling which it definitely is not)

Last night while my brain was spinning on tests, family and life in general I had an idea though. I think I will start taking old magazines over to the ER and put them in the magazine racks for folks to read while they wait. There were no magazines at all when I was there last week. It was really sad. Maybe I will also take my bookcrossing books there.

Wednesday, November 09, 2005

Hospital

The lesson to be learned here is that there are other options for what is causing wild puking beside the flu or Crohns.

I finally went to the doctor yesterday,(Puking, no bowel movements for a WEEK!) I went to the family doc, not the gi doc. Dehydrated. She thought Crohns and wanted blood tests, an iv to rehydrate and someone else to poke around my stomach.

Went to the hospital er. They were busy so that part took a while. They draw blood, and put in an iv line. Nurse tries first on my left wrist. If I say oww, especially repeatedly and tears come to my eyes, it aint a good spot woman. I am not a needle/iv wimp unless they draw blood gases which kill me. Still she persists. Runs to get the saline to flush it because it won't complete the draw. Uh no, and it collapses. She gets one in the right arm in a place that often fails on me but it worked and lasted all night.

Then Mr Smart Ass doctor who had decided on a ct scan before he even talked to me finally saw me. Smart Ass because he tried to tell me contrast is contrast and no big deal. Clearly he hasn't drunk a variety of types because 8 oz of chalky barium is a lot better and easier to handle than a quart of bitter yucky stuff mixed with juice and "sipped" over 2 hours. At least for me.

Then the radiology woman comes. Decides that since nutra-sweet/aspartame is a no no I should drink a huge amount of contrast mixed with CRANBERRY JUICE. Umm I have been puking everything since Friday but whatever. Give me nausea meds and I will give it a shot. Nausea and pain meds given. Start working on the deluxe cocktail. Alternate drinking it, puking it, drinking it, puking it even with more nausea and pain meds.Continue to get nagged to pee in a cup for them. Ummm I am dehydrated and haven't peed for 18 hours or so at this point. Finally managed a few drops to make them happy.

Get the ct scan. No blockage. Well, that is good, but leaves me wondering why I have been puking for days. I mean a bit of nausea is pretty much the norm. Eating something too rich, fried, or containing the smallest bit of taste and nutrients (umm make that green)or just too much of anything means puking. I am accustomed to that. This was different. ER doc says "well, it could be just inflammation".

Ok, so what can we do here? Two options, go home and do what you have been doing, and it might go away.(fluids, anti nausea meds, no food) Basically on the premise that the iv fluids might have gotten me stable enough to get better. Stay here, basically do what I had been doing with an iv on the side. Well, the hospital option had no particular charm but being at home meant not being in the hospital which is a definite plus. It means possibly being able to work which really is a plus, even if I have to be a zombie on nausea meds. It also meant that I can gather myself together and see my baby girl in her Greek Wax museum thing which is tomorrow (and was my clearest reasoning for skipping what could be an interminable hospital stay, kids). So, check out time it is.

Uh oh, here comes the doc again. Seems he has changed his mind. The urine came back showing a Urinary Tract Infection. He wavered on this whole going home thing but went for the iv of levaquin and a hmmm, which soon started to BURN LIKE HELL all up my arm. Umm nurse, nurse, we can't do this, baaaaaaaaaad. She comes back. Doc comes back. iv Benadryl and a slow, slow drip. Ok ok, we are back in business, still burning, and starting to spread burning to weird places (side of my nose, ears, some toes)Nurse says doc is set on this particular antibiotic so can I deal? sure. Will deal.

Finally got sprung at 6 am. Fist full of prescriptions (sublingual nausea meds (four pills for 40 bucks) pain meds and Cipro for the UTI, with a do what you have been doing, call your doctor/come back if you get worse or are not better in a couple of days.

Either the fluids or the levaquin is a magic laxative because I have gone to the bathroom a zillion times since I have been home, starting right after I got home. Still pukey especially if I move around. Slept all day. Hope I don't have trouble sleeping tonight.

But, a UTI. Never crossed my mind. Related to the Crohns only in that they are more likely because of the immunosuppressants. (at least I think that is the only way they are related)

Monday, November 07, 2005

Puking Sucks

And I hate it. Especially when the only solid food I have had since Friday is a mini bag of pretzels.

Miserable

Miserable tummy weekend. Throwing up. Fever. Exhaustion. Owie Stomach. I think I spent the weekend a nice color green, not unlike Elphaba. Weekend of fun crashed into weekend of kid cuddling and puking (not at the same time) and trying not to puke. Still not better. Anti puke meds do not work. Still ignoring the call your doctor now advice. Mostly frustrated and sad.

We did see chicken little though. Kids loved it.

Wednesday, November 02, 2005

Chewing Gum Speeds Surgery Recovery

Chewing Gum Speeds Surgery Recovery: "In the study, 102 patients undergoing elective colon resection surgery were divided into two groups. Those in the control group received the standard fare after abdominal surgery -- sips of clear liquid. The patients in the study group were also given gum to chew at mealtimes."

Interesting stuff. I wonder if it can be replicated or anything. (While imagining chewing gum all gunky in my teeth.

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Friday, October 28, 2005

Could be worse

My gut hasn't been happy. Not particularly miserable, but not happy. Its been a stressful week and while that has no bearing on developing Ulcerative Colitis or Crohn's, it doesn't help either. This always reminds me of great sayings like go with your gut, gut feelings, etc. Yep, my feelings get wrapped up with my gut. In my case the saying should go "Life's a bitch, then you go to the bathroom"

On the plus side, a wee break this weekend. Interestingly enough or proving my point that stress is related, a break usually helps matters a lot. Let's hope that is the case this weekend.

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Tuesday, October 25, 2005

Vanity

I am horridly vain. Not in a clothes buying, have to be dressed "right" sort of way. I just have generally really liked how I looked. But here is the problem...
Several years of pukeyness + a lifetime of drinking coke......have left my teeth scarey looking (not to mention dentist from hell) AND

Several years of crohns? IBD? Ulcerative colitis? pukeyness? drugs to treat the above? has left my skin yucky. Patchy, spotty, puffed, dry, wrinkled, yucky. Icky.

And...I have to admit those things are far more annoying to me than the bathroom trips. If it isn't going to feel like my body, couldn't it just look like it?

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Monday, October 24, 2005

Craving

Tummy isn't too bad today. But I have a problem, I ate well..nothing of value yesterday. My nutritional high point was my morning coffee. Really.

What do I crave to solve this issue? Jimmy Johns. #6 or #13. Hold the sprouts and lettuce. Maybe add onion. The rice cake I just munched has not helped. I have been wanting Jimmy Johns for a week now. But, they are at the top of no ones list but mine even if we were a vote for dinner sort of family.

Why Jimmy Johns? I don't know. I think because it is flavorful and has a varying enough texture as to taste like something (as opposed to boring bland) and as long as I get it without lettuce (without sprouts is a given) I don't tend to have tummy issues with it most of the time. It also is soft enough not to make my dead teeth hurt. This makes it an entirely rare food in my life right now.

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Sunday, October 23, 2005

Tummy Days and Sundays...

Friday was a yucky tummy day which developed into a yucky tummy and migraine night. Migraine continued until Saturday morning whereupon it vanished. Mentruation arrived just as I was pondering if this could be the key to the yucky tummy and head. Afterwards yesterday was pretty good.

Today though, migraine is back, yucky tummy in full force with nausea, the famous Crohn's mucus and everything else. BLEAH.

Of course, I have planned pork chops for the family for dinner. Cross your fingers that I can get through the prep.

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Thursday, October 20, 2005

Oh no.

I am going to be gloomy like George Orwell Ok, Crohn's isn't TB but hey, the rest fits right? Am I gloomy? Tell me now before I write 2084 or something.

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Wednesday, October 19, 2005

Ok, so I know you are really fascinated now

so...
play toilet sudoku

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Corn

I know you all want to hear gory corn details...but there are none yet. Yes, I bravely ate corn. Ok a half ear of boiled to death corn on the cob. But...so far so good. YAY! I think I will say the Digestive Advantage is working. Surely the snake oil is the reason I have managed such a thing. Right? I mean its been an HOUR. LOL. Ok ok...but my tummy hasn't been half bad this week. We will see what it does closer to menstruation and such...but could this mean...COLE SLAW could be in my future? Crohn's, Crohn's go away I want to eat my favorite foods some day.

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Tuesday, October 18, 2005

Tuesday Toilets

Ok, I was going to take pictures and measure the gaps in the stalls at work but that didn't happen. So I will chat a bit about our toilet.

It has a nice new plastic toilet seat after the white wooden one with plastic whatever those are (risers?) all died toilet deaths. This was long overdue as scouring the darn thing no longer worked.

But the toilet itself has a problem. Perhaps only troubling to me because I see it so darn much. When we started renting the house, it was stained. Hmm no problem, dealt with that before.

HA. No matter what chemical (everything from normal toilet bowl cleaner, soaking it in straight bleach no water, lime away the stuff you use to prep walls to paint, anything that looked promising at the grocery, hardware, department store.) to mechanical...a wide array of brushes, pumice stones, etc...most recently a metal brush you use to strip furniture) it still stays stubbornly BROWN AND GROSS LOOKING.

The metal stripping brush did manage to uncover bits of white but nothing more. I don't really want to replace the toilet. It works fine. I even managed to install a cool flush replacement gig in it last year, when the running drove me mad. But I want it WHITE. EVERYWHERE. Yeah, I know. Weird. Obsessive. Particularly since I am not inclined to housekeeping. (mostly because it must be done exactly or not done at all)

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Monday, October 17, 2005

Muse about Monday

Figured I would muse about something Crohn's related this Monday: Toilet Paper. I know, I know, the mere words bring about a gut reaction in all of you with IBD, Crohn's, Ulcerative colitis, IBS or other tummy trouble disease.

The toilet paper here at work sucks. Big time. What makes it so?

  • THIN: you probably have plastic wrap thicker than this stuff

  • Tears into tiny little scraplets that continuously circulate in the restroom

  • Scratchy: REALLY scratchy


At home: Not so bad. We seem to have settled on something just above really cheap Cottonelle? that works. Now if we just didn't have to buy so much of it.

So how about you? Toilet paper musings anyone?


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Sunday, October 16, 2005

Snake Oil

Friday during a trip to the most inane drugstore in the country, I ran across (while pondering all the other over the counter things that might conceivably make the crohns feel better) a box with Crohn's and Colitis on the front in big letters. What was this? I surely was no stranger to this aisle. Digestive Advantage for Crohns and Colitis (Go ahead click the link and peek, looks like they have free samples) The box claims it relieves diarrhea, constipation, pain, and bloating. Woo hoo. It quickly landed in my cart.

Yeah I know. Probably no good or overpriced packaging for something I could get unlabeled for less. Still...it might work right? I still can hang on to the idea that the all wise GI docs just missed this in order to use the Imuran/azathioprine and I should give it a try before the Remicade. Anyone else tried this?


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Tuesday, October 11, 2005

ARG!

I was feeling bad because I think I only whine here despite really not being that bad off comparatively on the tummy trouble scale. So I say something nice. What happens? TUMMY TROUBLES. Painful nasty yucky disgusting tummy troubles.

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Not doing too Bad

The nausea issues seem to have passed for a few days. YAYYYYYYYY. Still haven't picked up the new script for the nausea meds.

Unfortunately I seem to have gone from a pattern of predictable(for me) bathroom trips to somewhat less foreseeable ones. Annoying.

I am thinking I should go back and read up on Crohns and diet and so on. I have to confess I skipped a lot of that info because it didn't apply to both Crohns and Ulcerative Colitis. I used to be annoyed that there was soooooooo much on Crohns and not much on UC.

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Friday, October 07, 2005

Appointment Update

Yesterday was the CT scan update appt. No real news from the ct scan. Dr was confused as to why I hadn't already done the capsule endoscopy. Uh hello, you said to wait until you got the ct stuff back. I got to see the color pictures of the mystery bump.

Capsule endoscopy has to get approved by insurance which make take a month and the office folk said they are scheduling them a month out right now. So probably two months before that.

She in her intense gi doctor way said she was concerned the mystery bump was an encapsulated carcinoid tumor but that was rare. Sort of her way of saying she is alarmed but I shouldn't be I think. Surgery chat was interesting in a vague analytical way. As stated earlier, the world famous G.I. doc says it can be done with colonoscopy without perforation. She isn't so sure. In any case it would take both. If I do perforate or we go surgically with this in the first place, it may be able to be done laparascopically butttttt appendectomy scarring may prove to make that impossible as well. So rather than answer all the work questions like how long do you need off for this surgery, I have no answers for them. "Could be just a day for the colonoscopy. Could be a week for the laparascopy. Could be much longer for full abdominal surgery.

I forgot to ask for pain med refills. I also didn't cancel the appt scheduled for the 11th. I need to do both today.

I really regretted the pain med ommission yesterday as I had serious, serious gut wrenching (giggle, nice pun) pain all day that progressively got worse. Still owie today.

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Friday, September 30, 2005

I Want My UC Back.

Ok, I am going to whine just because I can. Let me say up front I know that people are trying to be comforting/encouraging. I appreciate it. I do.
But people who say "Oh my 3rd cousin twice removed", "the son of the guy my husband works with", "my great aunt" had crohns/had surgery/never had another problem are driving me crazy. Yeah, well that is swell. I hope I will too. This didn't happen much with Ulcerative Colitis.

Added to all of this...I have become the topic of department gossip. Let me just say these people are going out of their way to be nice and accomodating to me. They have been sorting out how to deal with the fact I have no sick leave left and obviously need my insurance and a job. I really, really appreciate it.

On the other hand, I have spent the entire time I have worked here trying not to be the topic of conversation. I don't want to be chatted about because I am the poor, sick girl. I don't want to be chatted about because I have the weird kids. I don't want to be chatted about because I am the famous ex-wife. I don't want to be chatted about because I am the lesbian. I don't care if anyone knows any or all of the above. (ok, the poor sick girl thing I would be happy to hide) I am proud of my partner and our children. Want to meet them? Want to chat with me about them? Want me to ramble about them? They get dropped into daily conversation. Hell, I am even generally proud of my ex husband. (I should be, I worked my ass off to get him where he is today.) Don't gossip about my tummy troubles geez..

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Thursday, September 29, 2005

Tummy Test Take Out

Test sucked. Left me with a headache from hell and well...bathroom issues...Test itself was quick and easy though. Let me repeat QUICK. I can't even pick up a script from CVS that quick. (of course, lately CVS hasn't even had the script when I go to pick it up.)

She even managed to get the iv handily, even if she carped a bit. Odd thing was at the end some other woman came in and was being snarky aggressive in a nasty sort of way at the tech about some gown I think, I couldn't see, getting wrinkled. Hello, I am lying there, could we stop with office games?

More Yummy Stuff to Drink

This morning a quart of Hypaque mixed with Hawaiian Punch. I think any lingering Hawaiian Punch nostalgia is gone. This concoction tastes rather like the famous gag inducing phospho soda, except not as thick and there is A LOT OF IT.

How am I supposed to space this evenly for an hour and a half when my body is screaming chug it or give it up? In any case, spacing drinks evenly is not really something I know how to do.

My stomach isn't happy this morning ANYWAY. (including a bathroom trip that I hope doesn't preclude this test because I am NOT DRINKING THIS STUFF AGAIN.
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Wednesday, September 28, 2005

Drank the Yummy Stuff

Barium. Here is your Barium Fun Fact:Barium, the name for the element of atomic number 56 on the Periodic Table of the Elements, comes from the Greek word "barys," meaning "heavy." Barium is a relatively heavy element because it has 56 protons in its nucleus (compared to chlorine, for example, which has only 17). The same number of electrons balance the electrical charge.

Tasted sort of like a vanilla like milk shake. Actually more like the pre-fiber and artificial sweetner days of Slim-fast. But they aren't kidding when they say heavy.





Tuesday, September 27, 2005

Doctor's Appointment

Mystery thing in my colon has grown since my last colonoscopy. They want to do surgery to remove.

Biopsies of disease area are consistent with trohnd, crohts, ckohbs, glotns (my personal favorite) ok, those are reconstructed words that mean, yes, I have not Ulcerative Colitis but Crohn's colitis.

CT scan Thursday with what sounds like close to the prep from hell. Anything they start by telling you "Buy hawaiian punch or kool aid and make it as sweet as you can" can not possibly be good. And that is STEP 2 after the appetizing looking brown white stuff I have to drink 7:30 the night before.(Which brought me to wonder if that is what they use to make the "money shots" in those movies...you know the sort). They were kind enough to give me a special souvenier sippy cup for the prep though. Insulated and everything. Woo hoo. My first Crohn's souvenier.

Then another doctor appointment next Thursday. Followed by the capsule endoscopy. Followed by the surgery. Followed by remicade infusions. At least that is the preliminary plan.

Sunday, September 25, 2005

Well, hmm

Pukey troubles are better. Tummy is not. But as of the wee hours this morning, I am having my period which means flare and migraines are in order. I wonder if the pill would help. Anyone try the whole birth control pill for IBD thing?






Friday, September 23, 2005

PUKE!

Tummy is yucky today in a pukey kind of way. I have been queasy off and on all week and this morning was no exception. The phenergan usually keeps me from actually puking but not today. UGH. Had to come home. I HATE puking at work. I hate puking in general but at work in our intensely unprivate bathroom, it is insanely bad.

Tuesday, September 20, 2005

Wearable Meds? FDA Remicade?

This seems like the perfect answer for tummy troubled folk and their meds...wear them. Hmmm...but why not just go with a patch? (and just why aren't tummy troubled things available via patch or are they?

"Re Midi clothes will be made from specially developed fabrics that release a controlled dose of a complementary or homeopathic medicine into your bloodstream through your skin while you wear it."

BTW-Rumor is that the FDA approved remicade for use with ulcerative colitis. I wonder if this means my doc will suddenly get happy about it.

National Commission on Digestive Diseases

was established today according to the NIH I wonder if an overview committee will actually do anything to further research on digestive diseases and wehether the focus will be on the more "glamorous" digestive diseases rather than the yucky ones no one would want to discuss in a public place.

Monday, September 19, 2005

Tummy Trouble Update

Tummy troubles haven't been too bad. This is a good thing. However, I have been running a fever off and on for almost a week. Mostly I feel ok. A bit like a cold or flu but nothing notable enough to make me think it is ulcerative colitis related. I do wonder if it is azathioprine/imuran related. But I feel like I need something notable other than fever to bug the doctor. I have an appointment for the colonoscopy follow up tomorrow. Maybe I will mention it then.

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Friday, September 09, 2005

Colonoscopy

I survived. I hurt now but hopefully not for too long. Nothing exciting found yet. A biopsy of something that might be a polyp, might be scar tissue, might be some sort of appendectomy leftover. They think they want me to do a camera study? Anyone do this where you swallow a tiny camera for 8 hours? But for now, wait for the biopsy and take my imuran.





Asthma More Common in People with IBD

Health News Article | Reuters.com
"The team found patients with ulcerative colitis were 1.5 to 1.7 times more likely to have asthma than the general population, while Crohn's disease patients had a 1.3 to 1.4 times greater risk.

Among Crohn's disease patients, airway disease was the most common chronic inflammatory condition identified, and it was the second most common seen in ulcerative colitis patients."

Interesting since I have had asthma since a child and it definitely has been worse since my UC.






Thursday, September 08, 2005

3.5 hours into Prep

And now I remember what I hate about it other than the drinking the phosphosoda.

Step One: Colonoscopy Prep

After a lovely day of clear liquids. (which really isn't that bad except missing my caramel macchiatto and really wishing I could have a piece of bread or cheese to settle my stomach this morning) Butttttttttt I just drank the 1.5 oz of phospho soda mixed with canada dry ginger ale. I stuck them both in the freezer for a half hour to help the taste. (ha ha) Measured my dose of phospho soda carefully with a leftover med cup from some kids cold medicine. Stuck a straw in. (surely a straw helps right?)

BUTTTTTTTTT my stomach didn't feel great before...been queasy for two days. And now it is nice and bloated and GROSS feeling and it has been 10 minutes. Follow quickly with 3 glasses of cold water????????????????????? ARGH!

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Wednesday, September 07, 2005

Countdown to Prep

I got all pre registered tonight for the Colonoscopy Friday. Visited our not so friendly neighborhood CVS and bought the yummy phospho soda. Then to publix for the ginger ale to mix with it.

Then...off to a weird hoity toity burger and fries place for a last meal. Grilled veggie sandwich and fries both with excessive amounts of mayo. Oh wait...aioli. Why don't they just call it mayo? Then a few bites of a very melty ice cream cone. Would have been better had I not had to rush home to the bathroom. sigh. Couldn't just wait for the prep could it?

So tomorrow...clear liquids all day. Thank goodness my doctor considers coke a clear liquid. By 6 I have to consume the first 1/2 of the phospho soda. Then finish up in the early morning. Makes my work day better tomorrow since I can work right? (except I already turned in leave, hope I can un-turn it in?) But it means I definitely miss open house tomorrow at school and I never miss those things. :*-( But as I told my boy child, he really doesn't want to be the kid with the mom who needed to spend open house in the bathroom.

Anyone got a favorite colonoscopy clear liquid "food" or tips?






Saturday, September 03, 2005

Bad Day

Bad, bad day. Lots of pain. No bathroom trips but geez, at least I would feel like the pain might go away if I did. Instead, pain that made me think hmmm wonder if more pain meds would help. Instead, I tried to nap and hung out with the heating pad. sigh. It is dinner time and I am hungry but HURT so food seems like a problem.

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Friday, September 02, 2005

Better Today...until

I had a much better day today. Some cramping/pain this morning not long after I got to work but it passed before I pulled out the pain killers.

Unfortunately the good day led to dinner and then ice cream. I told the ice cream lady no peanuts on top (because they are a known tummy issue food) but she put them on anyway. Tried to eat around them but there were a lot and I am stupid. By the time I got home I was heading for the bathroom. Stomach is progressively youchier. Just took meds. Hopefully, my guts will be better soon.

Colonoscopy scheduled for next Friday. Thursday night is open house at school. Oh Goody! Prep and a school event. I hope I can make it. I don't miss these things. sigh.

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Thursday, September 01, 2005

Back to Work

I went back to work today. Figured I would take the take 1 option as opposed to the the take 2 option on the pain meds so spent a good part of the day hurting. But, then was glad I had the second one toward the end of the day when I started to get mind bendingly pained.

Spent too long this morning explaining to the person who was supposed to be the new staff supervisor person as of today (but apparently isn't which I didn't know until after all of this but I still am not sure on the details. I hate work intrigue) just why it is I am overdrawn on sick leave, why I will be overdrawing it more in coming weeks. And NO, it is not something cured by eating "right", avoiding stress, and drinking some herbal tea.

Then uncomfortable discussion with coworker who wanted to be helpful or some such. I don't know, but it really isn't the sort of thing you want to share graphic details around the office about.

The rest of the day was ok...if more than a bit dreadful with the combination of not feeling great and a long list of things to-do.

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Wednesday, August 31, 2005

Doctor Report

Saw the nurse practitioner and it wasn't pretty. She suggested putting me in the hospital for pain control. I didn't go for it. She suggested more strongly. Then went and got me a script for a different pain med with the warning that I ought to just go to the hospital anyway and if this didn't work there wasn't going to be a choice.

Sigh. Don't they understand that I have a job, a family, a life? A job that is not amused that I am not there and have no sick leave...a job that thinks I am skivving work for a birthday vacation? No.

Have to call back and make a colonoscopy appointment for as soon as possible. The power went out as I was getting my script. Soooooo...that is the update.

Bizarre thing: I was sure I had GAINED 10-15 lbs since the last appointment because I can't hardly button my pants. Nope, lost 12 since the June appointment. So the buttoning thing is all distended owie stomach.

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Tuesday, August 30, 2005

Tummy Troubles

I have an appointment tomorrow morning at 8 with the nurse practitioner. Earlier if they get a cancellation. Sigh.


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Monday, August 29, 2005

Uh-oh

Last night was my worst tummy night and it has turned into my worst day since the last time I was in the hospital I think. REALLY crampy and yucky and my stomach is distended to the point of clothes that fit last week strained at the buttons today.

I was going to call the doctor but managed to grit my teeth and work longer than I planned to when I swept into the office this morning. Swept is overstating it more than a bit because it was really more of a dragged myself into because I knew there was stuff that I HAD TO GET DONE. Then I got home with a migraine, killer guts and headache meds and such seemed like a better idea. Then homework madness and with the lights on and so on it doesn't seem quite as bad right? Besides that, I am enough of a WebMD and general on and offline health reader that I already know what will happen when I call.

I know. I know. Its bad. But tomorrow is my birthday. sigh.

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Friday, August 26, 2005

Hurt

I hurt today. Bad. Ended up coming home early from work. (Do I have enough sick leave? Probably not. I don't know. October is coming which means I once again won't have the minimum to join the sick leave pool.) Took meds. Still hurt. Couldn't sleep. My kids are home but I haven't spent but a few minutes with them because I don't want them to see me doubled over or hurt or sad or mad that I am sick. Again. On a weekend when I just want to be with my babies.

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Wednesday, August 24, 2005

I wish I could think of something

other than yucky to describe this post. I missed 3 doses of my Imuran due to a dumb CVS store screw up. Yet another one. I never thought I would say I miss Eckerds BUT I DO. Unfortunately the mix up wasn't discovered until I was out of town for my lovely mommy weekend. The handful of scripts was grabbed. You would think they would have filled them right. Instead I had TWO bottles of promethezine (phenergan, the nausea stuff) and a bottle of medicine I am NO LONGER taking. No tramadol (for the owie tummy stuff) or IMURAN; which of course is the key component of the mix. Well, vacation usually does ok with me for a while, unless we are talking serious travel. So I was good for the weekend. Even ok Monday when I picked up the redone order...where we were walking out and discovered yes, the Imuran but YET ANOTHER BOTTLE OF the promethazine. So lets review here...3 bottles of nausea meds that I generally can get a few months out of ONE. No pain meds. Well, Monday was one of those days you just don't want to ever have outside of the pharmacy mix up and I didn't have energy to deal with them. (when we got there we had to wait in a long line, then wait LONGER while she couldn't find the second script bag.)

Anyhow, last night we left to go pick up the big girl. No problem. Car ride. I do good with that. No, by the time the 6 hours was up I was done. Lots of pain. No drugs. Today was worse because not being at work I actually ate breakfast and lunch. I don't eat at work because the bathroom trips and possible having to go home wreaks havoc on my work life. Lots of bathroom trips in the sketchiest of bathrooms. Always my favorite. I do have to say that the Target bathroom in Charleston was possibly the cleanest one I have ever been in inside a Target. (though I ditched the first stall because of "sprinkle when you tinkle" that hadn't been wiped up)

We are home now and I have a to do list twelve miles long; instead I am here griping and wishing instead of digging around for one of the last lortabs I have without dealing with the doc I could just have some sort of outpatient IV morphine or whatever it is they put in those things when I get stuck in the hospital.

How can missing 3 doses of a drug that took almost a year to kick in leave me in this kind of shape? Grrr. Yeah, I know, I have had some sketchy problems the past few months anyway but darn it, I HURT and that really sucks, really, really hard; especially since this is my kid weekend. Not to mention the fact that there seems to be a command performance at a work-related party on Friday. Anyone want to go in my place to a crab and shrimp boil, ham feast and grouper thing. (remembering that smelly food kills me and seafood is the worst AND I don't eat meat. I am also coming down with an ear infection/throat thing which will probably land me on antibiotics which always causes flaring.

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Thursday, August 18, 2005

Blecky Birthday

My baby turned seven yesterday but we had her party tonight. It was rough. I am having a wee bit of tummy trouble (yeah, wee bit as in the kind that a non-IBD person would take as a reason to stay home in bed with crackers and 7-up) Instead, I was baking a cookie cake and making my child's favorite meal...a pasta dish that I enjoyed in my pre food is evil days. Now it is one I can barely stand to see/smell much less the evil if I eat it. I thought I was doing ok with it all...until I saw birthday candle blowing out pictures with me looking like the ghost of birthdays wayyyyyyyyyyyy future and bad. ugh. Oh well, the kid liked it but phenergan and lortab better be my friends or else it will be a long night.

Tuesday, August 16, 2005

Today's Tummy Troubles

For the past few days I have had queasy tummy troubles and yesterday the visit the bathroom sort. So today, after I was awake for about an hour I was pleased when I didn't have any gut issues. I even managed a whole day at work without them.

Unfortunately, we stopped at Falafal King for dinner. We have eaten there before and while it isn't always the best cuisine for tummy trouble it is normally ok. The falafal came. Really oddly dark and dense. Hmm...haven't changed the grease in a while? New boy making it? Well, no, halfway through my first falafal ball, just as I was deciding it was growing on me, it occurred to me that the the new darkness and odd texture was PISTACHIOS. Oh geez, definitely not a good idea for tummy trouble. I made up for the trips I know I will be making by thoroughly enjoying the heavily green tabbouleh that came with (which would be chancy at best even without pistachios.) So far, seriously yucky queasy level and 2 bathroom trips. Fun fun fun...until daddy takes the t-paper away...errr I just made that up and there is no daddy in this house to do so...but in any case...I hate tummy troubles

I did listen to the Crohn's Talk podcast tonight though. They are new at this whole podcasting thing but truly adorable. Wish I could talk my love into following all the nice instructions the boyfriend gave.

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Saturday, August 13, 2005

Previously...

The posts before this one were posted as webpages, not blog pages. This is no doubt why my updating quit...writing the code, hashing over tummy problems, and frustration was not tops on my list. I had started a new job, was trying desperately to keep it, and so on. I landed back in the hospital in September 2003 for another 10 days. The 6-mp dosage caused leukopenia and some other not so fun symptoms. I got out of the hospital, a bunch of tests that told us nothing new, a possible surgery in the offing, and again lots of drugs. They switched the 6-MP for Imuran (azathioprine), but pretty much the same batch as after the previous hospitalization.

I went back to work, sick and struggling to be ok enough to keep the job. I did keep it. But at home things were a bit frayed. I just dropped when I got home. I couldn't play with the kids, couldn't fix dinner, (often couldn't even look at food). It was bad. Really, really bad.

The azathioprine eventually kicked in well enough that finally I wasn't living in the bathroom last summer after a bunch of dosage changes. The cortenemas make reappearring visits. I have been on prednisone several times. I catch everything under the sun. I flare on a fairly regular but livable basis. Surgery hasn't sounded appealling enough yet. I keep hanging in for something that really will work. In the meantime, avoiding the killer foods, being careful about all food, trying not to get too exhausted, too hot, around sick people, has to do. Sometimes this works better than other times. The rest is realizing that pain meds, nausea meds and a day in bed might be the best thing some days. Still here I am, hating it.