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 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


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


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 |
"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. 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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