I guess

I would have to learn to text if I lived in Finland.

In other news-tummy troubles have spread to my stomach according to the most recent biopsies but on the flip side-the lower intestine looks better than ever.

Well...

First, do you wonder if these docs made use of some samples after the indigestion?

Second, doctor today was fast! (everyone was in a hurry for lunch...except me...I just wanted to get back to work) Unfortunately, not good. Some new fancy ct scan on Friday. She also said the F word...yeah fistula. So, no work on Friday. Sigh. Also...Remicade started ASAP. sigh. Lots of sighing. Not good. But wait...my fasting blood sugar was fine! Yay! Blood pressure unremarkable. Pulse not horrid. I didn't jump off the table when she prodded my belly, but yeah it still hurt. Anyone know why she does this leg thing every time too? She leans over, presses her hands on both of my thighs and seems to meditate. Sometimes this takes her a lonnnnnng time. Especially lately. Not just the ankle squeeze thing they do. (she does that too.) Crohn's rots.

Not so Sweet Blood Draw

***Warning: the following story may upset your stomach, it pretty much took down two pretty tough grown women today***

So, fasting blood sugar was today, after it was high last week (most likely a prednisone reaction...my non-prednisone blood sugar is always fine). We got there in well enough time to be in and out. First thing in the morning shouldn't be rough, right? Wrong. 34 people ahead of me on the list. Sign in person handed me a NEW piece of paper to fill out. I do? I haven't had to do this before. Yes. It is new. Fill it out, have a seat. Crowded waiting room, between coughing people was the seat available. Great.

Fill it out. Return the pen. (not the papers...have to wait for her to call me) CBS this morning on with a string of the most boring stories ever. I didn't bring a book in or knitting because I thought it would be fast. You couldn't pay me to touch their waiting room magazines. Shudder. So, I sat. Bemused. People-watched. Desk clerk finally calls me up, butchering my name into something pejorative. Hear the gaggle of pregnant women there discuss how awful a name as I go to see desk woman. Sigh. Takes my papers, photocopies my insurance card (they do this every time), sends me to sit back down. I go to the other side where a seat has freed up and they have been calling people back. Watch my paperwork in the tray. Peer at the very young pregnant Hispanic girl and her mother, wishing I could eavesdrop on Spanish.

Finally, got called back, well, actually the woman misspells aloud my last name. oooooook it is typed there.

Door on the left. Sit down. Looks at my right arm. Puzzled look from her. Never looked at the other (not that it would have helped but whatever) A few half-hearted prods. Open and close. Prods. Decides to go for their favorite antecubital. (Still bruised from last week) Pokes. Misses. Wiggles the needle a bit, not much (they often will dig and poke for a good long time and hard before they get a vein). Pulls it. Tapes it. Mutters about my tiny veins. Mutters how SHE only sticks once, and she can't do butterflies, so she was calling someone else to come. She goes and looks at the other arm. Tiny veins. Have you ever had trouble with a blood draw before? Yes, veins old and scarred and tired, especially after years of ivs and blood draws. Hmm. She leaves. Keeps trying to round someone up. Makes me move to another empty room.

Other phlebotomist comes in, she has drawn me before. Doesn't seem to remember me. S'ok. She looks. "Have you had anything to drink this morning?" Uh no. Fasting. You are dehydrated. Sort of a permanent state these days with Crohn's. Oh. You poor dear. Mutters. Rips the bandage off the right arm after failing to find anything after the prod, squeeze, open close routine on the left. Repeats on the right. I ponder her dirty fingernails. Growls about the lack of butterfly needles, goes and grabs 2 and comes back. Goes for the right hand, irritated about the really lame looking, really swollen, bruised (and BTW-still hurting) place there where the hospital drew blood the other day.

Goes back to the left, gives a passing glance that the left hand and then looks at the wrist. cringe. I know that isn't going to be easy, but I can see myself there isn't much choice. She goes for it. It rolls. She can't get the vein. She pulls it and as she does, the other fat vein on the wrist pops up. She takes the same needle, jabs it, leaving the first place bleeding all over the place while she drew the first tube of blood up. Then she yells for someone to come help her. Woman comes, swaps the tubes. Fills it. Pulls the second tube. Phlebotomist pulls the works, chucks the needle, hands the whole blood covered works (remember the other needle spot on that side didn't get covered and sprayed everything with blood) to the assisting person who chucks it. May I mention here that the assisting person had no gloves on? sigh.

Phlebotomist tapes me up and sends me on the way. Way tapes me up with one of those ace bandage-y things they sometimes use. Around and around my wrist...excessive maybe. But maybe not. It bled for hours.

I got in the car, swigged my Boost and took my Prednisone and Imuran and went to work. I got there and had to wash the blood off my fingers and such where it had sprayed when she yanked the needle and went for the other spot without putting something on it. It really wasn't my worst blood draw ever. Not even close.

My Morning

I spent my morning turning this Prometheus test to check my Imuran levels (different from the regular Imuran/azathioprine related blood work that just checks to see if it is killing all your white cells or liver):

Into this:

This required a trip to the hospital lab (the regular lab won't do a Prometheus draw-so it had to get special insurance approval and a special trip to the hospital lab), which required registering in the Emergency Room registration desk, because that is where you go if you don't go between 9 and 12 or 1 and 4). The ER registration girl was grouchy because the NP signed the form not the doc. She also was insanely spacey and kept apologizing for it. Good thing I knew where to sign and what the deal was as far as the paperwork. (HIPPA, Advance Directive (always nice when going for a blood draw) insurance, no I don't have this list of things-well, I do but they aren't why I am here...I didn't confuse her with that.) Then off to find the lab. Hallways-that I swear they move when I am not there. Found the lonely little lab. (tucked in a corner and not where I go for pre-op/pre-procedure lab work) Finally get a lab tech.

Which arm? Well, either but your best bet will be the hand. Hmmm. Let me take a look. I am good at this. Yeah? I let her look. (Why do they ask if they always look all over?)

No left arm. (which would have been a miracle-I am not sure anyone has found a good vein there since 2003) No right arm...except the very bruised looking, still swollen antecubital (a very small but hearty little one that hangs out on the far right side of my inner elbow) that the other lab drew from last week. Huh.

Let's look at those hands. Hmm...let me go get a butterfly. Goes and gets a cart. Prods my vein again. Pokes it. Digs it around. Grimaces. (her not me) Almost gives up. Finally! Blood!

Syringe draws the blood. Drip. Drip. Drip. Thick. Red. But done. Tapes me up. Bye! I will ship this right off to California! Darn, aren't Prometheus tests fun? An extra lab trip. An hour in the early morning at the hospital. Best way to start the day.

100 Questions and Answers About Crohn's Disease and Ulcerative Colitis

Today a present came for me in the mail. It came from the folks at Abbott who make Humira, which is a drug I am considering for the treatment of my Crohn's Disease. The drug has all sorts of positives and negatives and of course, that is something best left to a doctor, the patient and the family. If I get angsty about our next step, I will probably blog all about those.

In the meantime, I have been researching that next step the modern patient way. I have read about the options on MedicineNet, WebMd, CCFA, etc. I have read blogs and boards. I have also visited the sites related to the medications. Now, big pharma gets a bad rap. I can certainly gripe myself. However, in some cases, they do provide some really valuable patient information. I tend to take what I can get and ignore the marketing materials and push for this drug or that drug.

I signed up for the newsletter at CrohnsOnline.com. It came with the offer of a free book that I had seen on Amazon but not in real life...100 Questions and Answers about Crohn's Disease and Ulcerative Colitis. Wow! A free book. Yep, I know, mailing lists and such. I can't say that I am ever really annoyed by Crohn's mail. (not like I am when my insurance company sends me a "We noticed your blood pressure was high at the last visit, did you know we had these resources to help you and why don't you do this and this as well?" umm yeah it was high, I was seriously dehydrated and really quite sick, thanks) In any case, nearly all of the mail I have ever gotten, whether it be from a pharmaceutical company or CCFA has been helpful in some way.

By the way, if you haven't ever signed up for the CCFA mail, do so. Asacol will put you on the CCFA for a trial run if you go to their website (or at least they did) and you will still get the CCFA mailings for quite some time. Their magazine is really good in a glossy sort of way. I find the CCFA membership fees a bit to expensive for me but I do love the magazine. CCFA also has the best resources online (all free) for folks with IBD. They do great work.

Anyhow back to my free book. Crohn's Online is an Abbott site. However, you have to really dig to see even mention of Humira and there is a bit of basic info about Crohn's. The book is the big prize though. In exchange for your info, and presumably the occasional mailing about Humira (They have a very detailed yet fairly clear privacy policy-do read it)...they send what really is a nice informative book. The book does talk about TNF medications in a very thorough answer to one question. However, it is NOT a book that you need to fear is pushing this or that. It gives a lot of basic information on diagnosis, medications, complications plus answers a lot of those questions that you might not want to ask your doctor. (like how come I feel so "crappy"?, the answers to sex and pregnancy questions, why your skin is falling apart, how to lose weight while being unable to eat fruits, vegetables and whole grains, how to keep weight on while being unable to eat at all, etc. ) The book is simple, nicely set out. I like the question and short answer format. I think it probably is a good reference for everyone with this sort of Tummy Trouble, whether newly diagnosed or whether you are a crohn's blogger who had to toss the computer on the bed to run to the bathroom during the writing of a post, like this one. In fact this one. Who did. Right in the middle of the sentence. You wanted to know that. I know you did. In any case, get this book...get it free by visiting the CrohnsOnline.com website linked above, or buying it from Amazon or grabbing it from the library, though I think it is one of those books someone with tummy trouble might should just have on hand. (because as you know, in the middle of a flare, when you need to know is it time to call the doc, go to the ER or take some Tylenol, you are in no shape to visit your library)

Well I went to the doctor

To the general practice doctor. It wasn't a UTI, which is what I was figuring. At least the quick test didn't say so. I saw a different doctor in the practice, new guy, wet behind the ears.

He kept asking stupid questions like: have you been running a fever? Umm no, I am on nice meds that would mean that if I had run any sort of significant fever I would BE IN THE HOSPITAL. Any blood in the stool? I have crohn's that is a daily if not hourly occurrence. Any nausea, vomiting? Again, I have CROHN's. Any stomach pain? ARGGGGGGGGGGGGGGh At one point after I said I have crohns so it is hard to say, he said he did go to medical school. At which point I was DONE. His answer was he thinks I have pulled a muscle. (Was I in a car accident? Was I sure I hadn't been in a car accident?)

He wants me to get an x-ray. Why??????? That never was clear why. and come back in a week. Sigh. It felt better-like vanished-for about 24 hours, but now it is back to hurting like hell. sigh. I wanted it to be a simple infection-antibiotics. all better. But no, instead, tests.

I don't know whether I want to waste the time going back. I 99% sure the xray will show nothing, which will mean more tests. More money. More time off work. Fairly certain though it isn't a pulled muscle. Pulled muscles don't make you exhausted. They don't make you pee all the time. They don't last for 3 months.

Follow Up Appointment and Path is Back

The nurse in charge of my GI doc called today with the pathology report. Benign tumor (with an evil sounding name) that could have grown to cause issues, just because it was in the way and stuff but is now gone so should be all peachy now. Yeah, they still would have wanted to take it out even if they had miraculously known without surgery that is what it was, but it still feels like a lot of fuss over a little mystery bump. Of course, it always felt that way to me. The thing is...75% of tumors in the digestive tract are not of the benign sort and even fewer are of the kind I had, so they like to check these things out.

Other news: follow up with the surgeon...well, he got called back into emergency surgery so he didn't see me. Nurse looked briefly at the incisions, said what I told her walking back: they look good, really good considering. She was horrified by my arm and the bruises there. Good thing she didn't see them right after the last hospitalization. I have to go back in 1-2 weeks so he can sign off on me. ARG. Call if my fever goes over 101. (of course, if my fever goes that high, they will probably get a call from the ER, since I am on those nice immune suppressing drugs that keep fevers from happening)

After Surgery

I am home after surgery. I actually got home yesterday afternoon. The surgery went well. Gi doc was able to grab the mystery bump with the colonoscopy. Surgeon cleaned up scar tissue (from appendectomy 12 years ago? from Crohns? From some sort of girl part source? no idea) through the lap. They thought I would be able to go home the same day but it quickly became apparent this was not happening.

Pain control was a big issue as shaking everything up down there made the crohn's unhappy as well as all the jiggled parts screaming at everyone that they didn't deserve that sort of invasion, not to mention the parts that got sliced and diced. Oddly enough, you can't go home if you pass out from pain.

Then my blood pressure dropped way low. So, then I had to stay until it stabilized into something more normal but still lower than normal.

The mystery bump is still a mystery. G.I. Doc wouldn't say without pathology report coming back, which will be mid-week some time. So, for right now, it is a "cecal mass" still.

I haven't eaten yet really. Jello, broth, a graham cracker that made me most unhappy and a roll that mostly came up almost immediately. My hands and feet are swollen. My left hand is very swollen but looking better. The i.v. infiltrated. I told them to do something about it when it started to hurt, but they flushed it and claimed it was fine. Two hours later when it was all swollen and gross they acted like I had not ever mentioned this to them. Arg. It really just looks awful, not hurt, though typing is making it a bit owie in a stiff sort of way. Lovely bruises on my arms from failed iv attempts.

Biggest annoyance (other than never imagining this would hurt like the dickens) has been having trouble peeing. It is better now but at first, getting the muscles to work right to pee was not happening at all.

Biggest hospital annoyance: LOUD people. My roommates had loud visitors. The hallways were full of loud visitors. I was massively annoyed by the 12 or so yo boy hanging out in the hall when they wanted to transfer me from the gurney to the room. Uh...I know my butt is hanging out and I don't really want to flash that kid. He needs to go into a room or proceed quickly to a non patient part of the hospital.

Another annoyance: nurse arguing with us about my daily meds because they weren't on the order. I definitely need the imuran or I will be back here with more serious issues than this really soon. That nurse also had a hard time understanding what I was saying, a propensity for not answering questions about meds (sorry but I am going to ask what you are giving me and why) and 3 days into this fun still thought my partner was my mother.

What was interesting about the one roommate with the loud visitors was that she complained that she wasn't in a private room because I had to go to her side of the room to use the bathroom and the toilet flushing was loud.

The hospital kitchen is being remodeled so the meals seem to have taken a turn for the worse for visitors as well as patients. It was just as well that I couldn't eat because the boiled cauliflower and fried, mayonaise and gravy doused items that appeared on people's trays made my powdered broth look inviting. I don't know how they expect people to make healthy dietary choices when they can't offer them on a hospital tray.

Good things: nurse in surgery recovery was very good even though she had this thing for kissing my forehead. TLC in the hospital room. (even though I never stayed awake for a whole show and frequently had no idea at all about it) Finding out that the OR prep nurse had a colostomy and used to like ginger ale but gags when she sees it in the grocery store now too.

Below is the picture of the lap incisions. There are three. You can't actually see the one in my belly button. The small red line toward the middle at the top is the first. The third is the red line in the middle of the brownish (betadine) area at the bottom. They each were covered by a band-aid, with very little blood. (They traced the outline of the blood on the bandaid so they could tell if they were bleeding, and they definitely didn't bleed much.) The bottom bruise is pretty nasty but the incisions seem to be healing well.

Look! The Future is Here

Look what I am doing tomorrow! Well, actually, the surgeon involved likes to start things off with a bang, so tonight (despite going to the bathroom 7 or 8 times today) I get to take two of the laxative tablets. Then tomorrow...more laxative tablets (generic Dulcolax) and the bottle of wal-phosphate (generic phospho-soda).

Then on Thursday, I get to bathe with special soap. (ok Dial, but they gave me my very own hotel sized bar this morning at pre-admission.) Then, go to the hospital by 8 am, where I will commence waiting for at least 2 hours. (Surgery isn't scheduled until 10). Then, colonoscopy, guided by laparascopy...culminating most likely in a bowel resection followed by a couple days in the hospital followed by two/two and a half weeks at home before returning to work if all goes well...which it may not because of course this is Crohn's and well, Crohn's and resections don't go smoothly a significant part of the time. (as he hastily reassures us that he hopes it will this time)

Sigh. I will be out of sick leave by Monday afternoon. Hopefully, the rest can be worked out with vacation time (not much more of that than sick leave) and a dispensation to work from home. (cross your fingers).

Meeting today with the surgeon was in his office...not in an exam room. That was made up for by a four room extravaganza in admitting at the hospital, complete with bright red hospital bracelet I was worried I would have to wear until surgery. (I don't, they made a second one) The blood draw was the easiest in YEARS. I asked her if she could do the i.v. on Thu. LOL.

Worst part will be missing open house. I never miss school stuff, ever.

Guts in an Uproar

LOL, great phrase isn't it?

Update: mystery bump surgery scheduled (don't even get me started about how we learned this! ARG!) for 9/7. Pre-op 9/5.

Current tummy status: bleah! Mucus! Blood! Bathroom trips! Woo-hoo. Not too unmanageable but gross.

Advil! Yay! Boo!

Health News Article | Reuters.com: "Regular colonoscopy with follow-up treatment if needed can help prevent colon cancer in patients with ulcerative colitis, new research suggests. Likewise, the use of anti-inflammatory drugs, such as aspirin and ibuprofen, seems to reduce the risk as well."

Ha! Well, what they don't mention is that aspirin and ibuprofen rank as no-nos of high order for the tummy troubled. Hmmm maybe I should say "Bring on the Advil! Less pain! More Blood! No colon cancer!"

Happy 100 Years of Food Safety!

The USDA is celebrating 100 Years of Food Safety. How important is food safety to you? Do you think about it only after you have a raging tummy ache? Do you think about it only at picnics with mayo? Do you think about it only when you go to scummy seeming restaurants or do you consistently think about it whether preparing food at home and eating away from home?

Can your kitchen pass the food safety test?

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.

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.

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)

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.
colitis, ulcerative colitis, Crohn's,
tummy troubles

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.

Third Follow Up

I went to the doc yesterday. I am very growly about the whole thing. The one that has been assigned as my regular gi doc is out of town, so I saw a different doc in the practice. Which is fine, I don't particularly like my regular doc and this is one that was decent to me when I was in the hospital.

So, he goes through, wants to put me back on prednisone, I explained that I didn't do much better on that than I am now off of it and the side effects of the pred sucked. Wants me to try colazol again, which I had serious almost going to the hospital again reaction to 2 1/2 months ago when they tried it last. Then he decides to up my 6-mp again which is what the regular doc discussed last time I was there and then doing a test in 2 weeks to see if I have therapeutic levels. No problem.

Then during the examination he says that I am running out of options for treatment and that the next step would be remicade or surgery. He didn't seem all that fond of remicade. I have my own questions there...whether insurance will cover, what it involves, etc. He says "If this is affecting your quality of life, then surgery seems like the way to go" Uh well, DUH its affecting my quality of life, I am in the bathroom all the time and in a lot of pain, exhausted much of the time and can't do nearly the things I should be able to do.

After that...we sit back down and he is prepping to write the scripts and I ask about pain meds. I explain that the Tylenol 3 isn't working anymore (which I had said at the beginning of the appt...that it worked for a couple weeks and then stopped so I stopped using it.) I got this LONGGGGGGGGGG lecture about narcotic usage and how I should avoid it. He made me feel like a junkie even though I really am loathe to take any medication esp the pain meds unless I am really miserable. I hated the whole thing. It is hard for me to go in and ask for meds, particularly pain meds in the first place and to be treated like that made it even worse.

He also wants to do another colonoscopy but wants my reg gi doc to order it and such. So I was supposed to have an appt in 4 weeks, they couldn't schedule me until September. Grrr. I don't have time in September for such things. The blood test can't be done by the lab that the insurance covers so I have to go to another lab. (lets hope insurance will cover it...)

I came home ranting about how I wasn't going back. I really don't want to. I am tired of all of this. Anyone got a good snake oil treatment that can't possibly work any worse than all that I have taken so far? Yeah, yeah I know...I just wish something would work without having to deal with the doctors.

The Medications

We stopped at the pharmacy to pick up the prescriptions on the way home. I was woozy and out of it. I was very weak from not walking and being sick. This combined into being very out of it. We had prescriptions for 6-MP (Purinethol), Prednisone, Hyoscyamine, and Lortab.

6-MP/MERCAPTOPURINE/Purinethol is an antimetabolite drug used to treat some forms of cancer. It is sometimes referred to as a chemotherapy drug. It is also used to treat Ulcerative Colitis. The dosage is based on weight. My starting dose for this was 50mg a day. You require regular blood tests to keep tabs on the medication's effect on your body.

Prednisone is a corticosteroid used to treat all sorts of things from allergies and asthma to yes, ulcerative colitis. Dosage for this was stepped down each week after leaving the hospital. You can't just take it and then stop. This is unfortunate, since despite all the good it can do, it also has numerous side effects that often can seem worse than what it is treating!

Hyoscyamine is an anti spasmodic drug that dissolves under your tongue. It was prescribed to help with the cramping.

Lortab-Lortab is a combination of Hydrocodone and acetaminophin to treat pain.
Home

For the first few days home, I was still seriously out of it. I couldn't do much. I was unsteady walking, talking, moving. Driving was seriously out even when I wasn't taking painkillers. I wanted to be back into the swing of things. I tried to catch up with work. Mostly though I was completely knocked out or hyped up on the medication, sometimes both at the same time. I tried hard to eat a healthy diet, drink plenty of water and get rest. I compulsively took my medicine on time.

Soon I started to feel back to normal. At least, some semblance of normal. My strength returned to a reasonable degree. The drops in the prednisone dosage were keeping me from being so scattered. Sleeping at night was a lost cause though. So were a lot of short term memory sorts of things. I was grouchy, "weird", and not myself. This mostly frustrated me.

I was also frustrated by the fact that I was no better than I was before I even went to the doctor. In some ways, I felt worse because of the side effects. I kept giving it time. I knew the Prednisone side effects would fade as the dosage continued to decrease. I knew it took a while for the 6-mp to kick in and work. So, despite the fact that patience isn't one of my virtues, I tried to be patient.