Sunday, December 19, 2004

Feeling a bit "off"

Not to get gross or anything, but as someone with 2 bowel diseases, I don't often have "diarrhea"....(yes, gross, but still)'s one of those questions the dr asks me (how often do I have it, or do I ever) and he's usually surprised when I say I don't have it too often. And its true, I don't. (thanks to the Imodium I'm sure. still wonder if that's hurting me and we just don't know it yet). But this stuff they give you to prep (for the colonoscopy) causes diarrhea so in a way, its reaffirmed that "I've been lucky" notion. Or, thank goodness for Imodium, for now.

And for ginger ale. Couldn't seem to get enough of that once I could finally drink (without feeling ill) again. This also helps get the phosphosoda down. I figured I would associate one with the other but the interesting thing about ginger ale is that when I need it, it always tastes really good to me. And when I don't, it just tastes kind of, blah.

It's been 2 days since the procedure, and I still feel "off." I have some back pain that I didn't expect. Less "gas" than expected. Oh I was so happy when I could take Imodium again.

It's like an assembly line, these out patient procedures. And there is all older people who see you in the beginning. The ones who walk you to the waiting area, the ones who check you in, the ones who take your info, make you sign stuff, tell you go back and wait some more.

I was "needing to go" (badly!!) every 5 minutes within 2 hours of starting the grueling prep until the time I had to leave for the hospital. Then suddenly, I was able to hold it for a bit. (I was too scared to move once in the waiting area). But I don't quite understand how the dr expects his bowel disease patients to take this crap that keeps us awake all night (and I do mean, all night) long, endure the agony that constantly having to "go" causes, endure the sickly, nasty, disgusting evacuations, and any other prep needed (and caused by the prep material) and somehow manage to make it to the hospital for their procedure at all when they can't stop going or needing to go long enough to even get dressed?

Yet somehow, I made it. And knowing the dr was running late (of course, as usual, his regular appointments run late too; schedule? what's that?) and after waiting and waiting and trying to breathe deeply and slowly (to try and calm myself) and not cough (no control anymore, had it, but then you start the prep, and any control there was is very soon a thing of the past) and finally finally I worked up the nerve to go in to that bathroom in the waiting area. The one where several old men were in and out of, where you can hear the nasty sounds they made, and just know the last place you want to be is in there (knowing everyone will hear me too).

But I had to go again. And I had managed to hold it for an amazingly long time (given the fact that for the entire previous night and all morning to this point, I couldn't) and if the procedure was soon, I better make sure 'm "ready." (they didn't ask me if I had to go again, the last time, they did, this time, there wasnt "time" to, or so it seemed)

Another problem I was having (God, why now?), I was seeing lightening flashes in my vision. Clear sign of an impending migraine. No sleep, no food, massive posterior pain, and now, a migraine coming, and I couldn't take any Excedrin.


No sooner did I get in the bathroom, I hear my name called. Of course! Over and over too. And it's not like I'm going to yell from inside the bathroom (here I am!). No. Ugh. It was too loud out there anyway. (I think this guy yelling for me was mad at me too, but too bad, it's not like I could help needing to use the bathroom!) Another older person (volunteer) brings me and the 2 other people to some area. Lucky them, they had other people with them. Friends or family. Support. Not me. Scary feeling.

Other people behind curtains talking to nurses or prep staff (who are they? I don't know) and I'm just there waiting. Standing. The bed is too high and I feel like I have to go again and hope they give me a chance to. (they don't.)

Then someone is telling me to put the gown on (the dreaded gown) and put my clothes underneath. Ok. Did that, still standing, waiting, listening, needing to go. She comes back, all business, "Get on the bed."(....yea don't help me or anything) Guess that's not part of the job to provide a stool or anything. But she's nice enough. I'm so dazed from not sleeping, not eating, feeling so much pain (down below) I'm not really paying much attention. And I'm not really myself. Answering questions in a daze. Smirking at some. Lots of questions.

"Is anyone abusing you?"

Does anyone really answer that honestly? And if they say yes, do they not perform the procedure the patient went through the painful prep for? I didn't ask, but I do wonder. All kinds of questions. Meanwhile, some pregnant woman is trying to insert something in to my hand (her and the nurse are talking, I feel like I'm in the way of their conversation). That doesn't work. It hurts, but doesn't work. She tries my arm. That works, and hurts some more. An anesthesiologist (I guess) asks me about my asthma, about allergies, (again, the nurse already asked me this stuff) about some other things I can't remember.

These are all younger people. Starts with all older people, then becomes all younger (younger, except for the dr). Just found that interesting.

Some of this is a blur. Some mean looking woman comes to take me in to the room where they're going to be performing the procedure. Bed and all. Mean looking. I'm told she will be there for the procedure. Oh great. The pregnant woman is there too. And other people I don't see, but can hear (talking).

It's loud in this room. Lots of beeping machines. Huge monitor. Long black ominous snake looking thing. I'm guess it was part of, or the actual colonoscope. I don't know. I didn't have a chance to talk much and didn't really want to.

Some tube thing is put in my nose for oxygen, don't like this at all. Felt like it was inhibiting my breathing. But it doesn't hurt and I don't complain. The pregnant woman said it would be a little uncomfortable, and that "most of what we do here is uncomfortable." Not really comforting to hear that either. Finally see my dr who says hi and asks how I am (barely waiting for an answer, I just say "ok" anyway). I have to sign something else, he quickly explains it's in case they have to give me a blood transfusion and that the blood is from the Red Cross and tested. Kind of hard to read it with him standing over me impatiently.

They put some things on my chest, and there's more beeping; something on my finger, and there are a lot of people in the room. It seems so anyway. It's a really small room. I remember looking at the printer in the corner and wondering what it was for. I tried not to look at anything else. Scary instruments everywhere. I can't seem to stop watching the monitors though. The one showing my heart rate (and whatever else) and the one showing where the colonoscope was aiming (which at the time, seemed to be the floor).

Now the last time, this went a little easier. Both the prep (which I can't even remember, did I block it? Or was it just easier? I don't know), and the face time with the dr. It was just, different. Better. This time, was much less personal. More automated.

I wish they'd told me sooner that I didn't have to be going "clear" to be "ready." It also didn't inspire much confidence that the pamphlet I did receive (from the dr's office weeks before) was riddled with misspellings and even missing words. Nothing mentioned about being "clear" and a few contradictions regarding what was allowed on the 'clear liquid diet.' I should've called the office or at least prepared a list of questions to ask when the dr's office called me the week before the procedure, but I didn't. I was trying not to think about it until I had to. I did check online and a lot of that information was slightly different from the info in the pamphlet. Confusing. I probably added more worries than needed by comparing my prep info with others.

The last thing I remember before the procedure was watching something being entered in to my "IV" via needle, and saying that it looked like milk. It did. Then, some dreaming, I don't remember what about, and then the bright lights and loudness of the recovery area. Mass production there as well. Several other people in there, making noises or moaning and talking in post-procedure slurryness.

There was one nicer nurse (and I'm just assuming they were nurses, maybe they were something else, more technical, I don't know) who told me to let that air out (snicker!) but that's not something I was in a hurry to do. I woke up weeping and feeling this crampiness in my back. I really just wanted to sleep. But you can't sleep there, they want you out of there as soon as you can be out there.

There was a meaner nurse yanking electrodes (or whatever) and tape off of me (causing more pain, thanks a lot) and saying things. I don't remember what. I just wanted to make sure she wasn't going to yank the "IV" thing (she made sure to correct me, it wasn't an IV, it was something else. What? I forget. Who cares.) out the same way she was yanking tape off me. Bitch. I do understand that quicker is better, but she could've said as much. Dopey patients could easily lash out at those causing pain. Maybe they know this and are prepared to jump out of reach. I just think she could've been a bit humane.

I was lucky that the person picking me up was there early, so I could leave a little sooner than I could've otherwise. I think that was both good and bad though. Good, because I could get out of there sooner. Bad, because physically, I wasn't quite up to drinking anything or walking yet. Never mind getting dressed. They say you have to drink something or you can't leave. Blech! I didn't want anything. And, the meaner nurse seemed to think the bed was nice and low and I should've been able to get off easily, like getting out of a regular bed. She looked at me like I was weird or something. But it's high, and I was loopy. And what the hell. (God forbid she help me or anything! Noooo, can't do that!)

Leaving early meant no after-chat with the dr. But it didn't seem like there would've been one anyway. I asked, but the nicer nurse didn't think he would be coming by, but I could wait and she would find out. No thanks. I thought it was expected that he might let me know that everything was all right, that I wouldn't have to take the nurse's word for it. The one performing the procedure should've made a point to come by for a moment. I don't think that's asking too much. I guess I should've waited. Really though, I just wanted to go home.

Another older person escorts you (and other patients at the same time) out. The person picking me up once volunteered at the hospital so they knew the way anyway. I wonder why they walk so fast. All of them. I mean, hello! I just woke up from an invasive procedure, and you expect me to walk straight? It wasn't easy. No wheelchairs. (Last time, against my wishes, I was wheeled to the parking garage where my ride was waiting. Not this time. Those are only for the older patients, or those unable to walk) I didn't want one, but I would've appreciated a slower walk.

My first meal was simply chicken broth and "no yolks!" noodles. That, some ginger ale, some saltines, Imodium, and Excedrin, I was ready for a nap. The migraine had bloomed (and lasted a day and a half; currently, just a "regular headache"). I didn't tell anyone at the hospital about it. I was afraid that if anything was wrong (impending migraine, asthma problems, anything), they would postpone the procedure, and there was no way I wanted to go through this again anytime soon.

So now it's two days later, and I'm able to eat regular meals again. I was able to later that day too, which was very weird and very scary because the very LAST thing I wanted that day (and even now) was a bowel movement. Even today, they're still painful, and not quite back to the way they were.

There was more conflicting information. Before the procedure (weeks before), the dr's office pamphlet and person explaining it, said they would call me in five days with the results. At the hospital, the (nicer) nurse (different ones from the pre-procedure people, if that matters) explained to me (and mainly to the person picking me up) that I was to call the dr's office in ten days. Ten?! What happened to five (and the fact that they were supposed to call me?)? No, I didn't ask, but I'll wonder about that too.

All in all, this experience wasn't so good. I wonder if the back pain is going to continue. It's not excruciating or anything. But it's not something I can pretend isn't there. Did the dr do something to cause it? Did I wrench it trying to change positions in the hospital bed? (they tell you change from your pre-procedure left side, to the right) Is there still "air" in me unable to get out? (air they put in there to see) Or some other reason?

If I was in agony, I would have to call sooner. Something to that effect is in the pamphlet, and on the post-procedure paperwork (which is one single page, saying very little really).

I'm glad this is over. All that's left, is the "official results." And I bet they won't even be coming from the dr himself, but instead, one of his staff. I also hope I don't have to go in. If it were bad news, I'd have to go in, right? Please, I don't want to go in.

I want to forget this. But I wrote it out so I won't forget it. It's not completely detailed, but it's enough so that I won't block it the next time. Say, years from now. (many many years from now)

I hope.

Tuesday, December 14, 2004


I have to go in for a colonoscopy this week. Second time ever. The first was shortly after being diagnosed years ago. I still remember it well. The worst part was knowing months in advance. That isn't the case this time. It's only been about 3 weeks forewarning. It was supposed to happen in February but since my employer is changing insurance companies, I figured it would be better not to piss off the new one so soon into my coverage. There's always the worry about pre-existing conditions.

We were told that wouldn't be a problem with this change. But they're not handling the paperwork very well (my employer, their help, whoever is processing) so I still worry about problems. Always.

The prep this time is brutal. The only thing I remember about the preparations last time was the suppositories. Thought that was pretty gross. Dr. Sadist has other plans for this prep. Nasty stuff. Have to drink a ton of liquid as well as take stuff that will intentionally cause a problem (cause me to go and go and go). That's terrifying! Is he crazy?

The whole point is to clean out my insides. Sure, I get that but what I don't understand is why is has to be so traumatic. Laxatives?? Enema?? Torture! For someone with 2 bowel diseases??

Absolute torture. (especially the worry beforehand!)

I was considering just fasting for 2-3 days. Maybe that will be good enough. I've gone a week without eating, living mainly on coffee (cigarettes) and water. I can do it. Sure. But will he know? That's the worry. I'm afraid that I won't be able to stop. And how am I supposed to work without the Imodium? All liquids, no Imodium. That's worrisome too.


Phosphosoda, Dulcolax, enema.
Yuck Yuck! Yuck!

I bought apple juice, white grape with peach (no pulp), vegetable broth, Mountain Dew, Canada Dry ginger ale, and diet Coke with lemon. These will be my "liquids."

I can't wait until this procedure is over. He (dr sadist) said I was due. It's been ____ (7-8?) years and it's time to "check what's going on in there" he said. Oh Joy.

The odd part is, at least 5 of my coworkers have had a colonoscopy within the last 5 months. Is there a run on them lately? A special at every hospital? Maybe there's an incentive for all doctors to try and schedule as many as possible, some bonus we never hear about. They're not all performed by gastroenterologists. I wonder how an internal medicine doctor's procedure differs from a gastroenterologists. Maybe it's the same. The prep isn't! Of all the people I know who have had to do this recently, only one had to go through a grueling prep (like I do). No fair!

I wish this was over already.

Monday, December 13, 2004

Doesn't make sense

No seeds, skins, processed, or raw foods. There are some exceptions to this (good) advice. I can have some fruits like apples, pears, oranges, melon. Nothing with seeds though. No berries. Rasberries and strawberries cause me to bleed. Yet I can have blueberries in moderation (or the kind that are cooked in other things but also raw).

The only raw veggie I can tolerate is mushrooms. (Why? I don't know.) The rest have to be cooked or even over-cooked. And the only vegetable I can't have at all is corn, although sometimes, say, in a soup where the kernals can be missed, it's not too big a deal. A whole cob would probably hurt.

Anything can cause a problem at anytime. That's really it. Anything, anytime. Scary.

I often just feel a bit off. Well, I guess it's more truthful to say I usually feel sickly, overtired, and drained. That's normal. And any day I actually feel decent is novel. (and wanted, hoped for).

I wonder if depression is a factor. Probably. How you feel emotionally is bound to effect your physically.

Tuesday, December 07, 2004

Sleeping, foods

I'm having sleeping problems again. I don't know what causes them. Since there's a lot of "I don't knows" when I ask my dr. anything, I probably won't ask him. He's a good dr. but he really lacks bedside manner. Some appointments he's very low key, quiet, and kind of mean (seems to be). Others, he surprises me by having a decent personality. I'm not the best patient but I'm not obnoxious or anything either. If anything, I'm too quiet (or so I think) and am always anxiously waiting for the end of the appointment so I can get out of there before he thinks of something scary to put me through. Yep, seriously paranoid.

"I don't know."

Hate that answer.

I've asked if Purinethol caused leg swelling. He didn't know. I searched (google mainly), and didn't find any info about that. Just my left leg/foot is a bit, swollen. Not all the time. Maybe it's high blood pressure. Who knows. The primary dr. (pa-c actually) is on me about that. Too many dr's.

So, sleeping problems. Never did find any info linking 6mp with insomnia. Maybe it's a combination of things. Lack of sleep isn't a new problem. I have trouble unwinding and silencing the incessant thoughts and worries that plague me at bedtime.

Guess I can't blame cd/uc for everything. But some nights it is to blame. And for surprising reasons. Like the time I changed garlic supplements. I was taking the soft-gels but ran out and found a less expensive brand that happened to be a powdered capsule. I took one around dinner time. And around 2am I was up (not willingly) and in pain. For a while.

The real problem is, I can't say for absolute certainty that this new form of garlic caused the problem. It's like this with most of the "problems." How can I ever really know for sure? When I'm experiencing a flare, anything can cause or add to an ongoing problem. Even water. But that night, other than the new kind of garlic supplement, I don't recall doing anything differently. And since then, haven't been brave enough to try it again, just in case it was the cause of that night's pain.

Sometimes the cause is more obvious.

Spicy foods - Sometimes.

KFC - Always! Don't know why, but anything from KFC causes major pains and problems, which is unfortunate; they have yummy chicken. Even the so-called "healthier" entree's cause problems.

Milk, milk products - Sometimes. And not all milk products all the time. I can handle hard cheese (like cheddar) usually. But something soft like feta can sometimes cause a problem. Cream cheese is ok and ice cream too - Sometimes!

Corn (on the cob, canned) - Always!
However Popcorn - Sometimes!

All the guess work. When this all first happened (way back in 96') it was like chemistry hell. I can have ___ but if I have ____ I'm going to suffer. Peanut butter and bananas are binding, but orange juice will get me running. And back then, the dr. wasn't much help he said, "just try it, if it causes a problem, don't have any more."

Easy for him to say, he wasn't the one in agony.

What helped was an online support group. Talking to other people who had already gone through this, well, was just very comforting. It was also terrifying hearing about those worse off than I was.

    This bitchy girl I used to work with (when I first learned I had cd/uc) made a point of telling me all the scariest stories she could make up to freak me out about what could happen to me.
Like I needed that. I'm paranoid enough. Long since moved on from that job but I remember that about her (and little else about her). Guess some people use whatever they can (in this case, my newly diagnosed ailment) to make themselves feel better.

So... "try anything!" Nope. That's risky (though necessary if you want to have any variety at all). I pretty much tried to follow what the support group's suggestions, although I can't remember the exact wording. Basically, no seeds, no skins, nothing processed, nothing raw. Not sure if the "nothing raw" is my own addition, included after an excruciating experience involving a salad, and remembering the drs. advise to "just try it."

I try to keep the "no seeds, no skins, nothing raw" in mind. There are some exceptions.

But that's enough for now.

Wednesday, December 01, 2004

This problem...

I'm not sure why I'm doing this, blogging about this. Perhaps it would help to talk about it a bit. This is my hope. I have other blogs, and websites, but this isn't appropriate anywhere else. And it's embarrassing. The disease(s), the(ir) effects are really embarrassing.


I've had Crohn's Disease and Ulcerative Colitis for about 8 years now. I think overall, once diagnosed and treated that is, I've been very lucky. No scary surgeries, no body alterations (colostomies, none here), no extreme side effects (prednisone is a bitch).

Being "lucky" compared to others afflicted with this doesn't mean having an easy time of it though. There are problems. Daily medications, the need to avoid certain foods, always paying attention to what's in what (what does that food/drink contain), always aware that there could be a "flare" (this is what I call it when things go badly) at any time for any reason. And at anytime, everything to get very painful.

Scary stuff.

I think stress has a lot to do with it. Flares and problems are endless trips to the bathroom with no end (of the need to go) in sight until I down another Imodium tablet and hope for the best. And god help me if that doesn't help. There are much worse remedies. Enemas was mentioned at one dr.'s appointment recently....I said, " thanks!" Changing medications is an option. But I'm wary about doing that.

Right now I'm taking two 50mg tablets of mercaptopurine daily. Plus a multi-vitamin, vitamin e, acetaminophen (4 every AM, though I probably shouldn't be taking so much every day) and an Imodium tablet. That's just in the morning. At night, I take one fish oil capsule (supposed to take two, but I only take one), a vitamin a & d capsule, calcium (when I remember it and when I'm not having a problem), and a half an Imodium tablet. (also Singulair, and albuterol as needed, but thats not for cd/uc)

Not too much. But at the same time, that's a lot.

There's quarterly bloodwork needed to check white cell count and kidney function (because of the mercaptopurine). It used to be every three months but I guess I'm doing well enough that my dr. decided every 4 is good enough. Fine with me. One less trip to worry about.

6mp is another name for mercaptopurine. There's also the brand name Purinethol. I was on Purinethol for 7 years and then the insurance company decided to change my prescription to the generic since the dr. stopped specifying "brand name only" on the prescriptions....that was scary at first because when I first started taking Purinethol, the dr. stressed that he wanted me to take the brand name version. (kickback, or more faith in the more expensive brand? hmmmm)

So far, the generic seems to work just as well. All versions of this drug lower your immunity so if you were susceptible to illnesses before, you're going to be much worse off now. As I am. Echinacea helps. Or I tell myself it does. Just can't take it for longer than a week (or less) at a time or you can build an immunity to it.

I wondered about the Imodium though. Wouldn't taking that daily cause me to build up an immunity to it? The dr. says "why would you?" Um.....(thinking about the echinacea's effect)...."because I'd be taking it every day?" He didn't really have a decent response either so I don't feel so bad. It still works and that's what matters.

Guess that's enough for now.