IBD Music Video

And no, not the Pearl Jam Crohn's guy. Instead it is Jordan Sweeney. His project Sometimes Sky is dedicated to "all those who suffer from Crohn's Disease and Ulcerative Colitis as he does" The video made me giggle. (and the songs on the MySpace are pretty darn good too.

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.

Crohn's is Expensive

Never mind that prescriptions run over $100 a month or I hit my out-of-pocket maximum every year on co-pays. We won't count the stuff that is just part and parcel of Crohn's. It all rots and I am very grateful for the insurance that covers the largest part of my Crohn's expenses. The insurance I had when I was diagnosed and for the first year of Crohn's meant 20K out of pocket in less than a year, just for direct medical expenses, not including the scripts and non-prescription stuff.

Crohn's has now required a new computer. Yes, that is right. A new computer.

You see, a couple months back, I had one of those get to the bathroom RIGHT now moments. In my hurry to not have messy cleanup, the laptop didn't get to its spot and instead crashed to the ground. As I ran to the bathroom and ran back, I worried. My computer wasn't that old...just a couple years. It had some "I wish it..." issues but it was my computer. We had bonded.

Thankfully, the computer seemed ok...sort of. It made some strange new whirs and clacks but it worked. Then the usb ports started acting up and the click pad thingy wasn't happy. Ok, thats fine. I found a work around for when it wouldn't click. The click would come back. But then, today, it died. sort of. I was working along and fade to black. Hmm. Jiggle. Ok, it's back. No, it isn't. Fade to black again. Ok, reboot time! Turned the computer off, gave it a rest. Turned it back on. All better...for 10 minutes. Then...back to black. Then auto shutdown. Then nothing on a reboot. At all. Well, the nice noises. But nothing. sigh. Near weeping. We don't have money for a new laptop. Yes, I could take over a kid's computer, share a computer, but sigh, I spend a lot of time with my computer. In bed. sigh.

Lovely partner looked at some reconditioned ones online. Nothing was appealing. I didn't want to spend money and get a new computer. I wanted MY computer. sigh. We hooked a monitor up to the laptop. Eureka! Computer...but extremely awkward and the computer was still making impending death noises.

So, I read my feeds, when all else fails, read your feeds. Lifehacker had the heads up on the new Dealighted.

It is a new deal aggregator much like dealdump.com. I clicked. I always click to see new stuff. I often click, peer at it, and shrug...one beta is just about like another after a while. It takes a lot for me to get excited. This one was different...why? Guess what was at the top? A new laptop, pick up in store, less than $400 with a free printer. Yep, it is basic but it works. Of course, it feels weird, looks weird and has VISTA. (which looks incredibly weird by the way) +it has nothing on it, so my week will be installing software and fidgeting settings.

I know. I should be excited about a new computer. I am not. It is just more money I didn't have and didn't want to spend. It is unfamiliar and weird when I am already crabby on prednisone. Plus the fade to black of my old computer is also costing me nearly 16 hours of work on my extra job this weekend too. Sigh. I guess I will get to know my new computer with some late nights this week, hope my body cooperates.

Anyone want to send me stickers to make my new laptop mine?

Travel and IBD

I recently ran across this article on IBD on the Road and thought about travel with my tummy troubles.

It is very easy to want to stay at home when you have Crohn's or Ulcerative Colitis. You know where the bathroom is, you have laundry facilities, your doctor is close by...but sometimes it is good to get away. Letting tummy troubles keep you at home lets your disease own you and isn't healthy at all. That said...it isn't all sweetness and light traveling.
Here are some tips that I have:

1. Over pack. Even if you have never had an accident in all the years of tummy troubles, you could and nothing is worse than having nothing else appropriate to wear.

2. Take a heating pad with you if you use one at home. I do, and after one too many nights in a hotel without one, I went and got just a small one to keep in the suitcase.

3. Take all your meds...not just your daily meds. You may not need them. Hopefully you won't but take them anyway. Nothing is worse than a vacation ruined by nonstop throwing up just because you left the nausea meds you never use at home.

4. Don't get overtired. Just because you only have one chance to see where ever you are doesn't mean the best approach is to go at it nonstop. Your body will stop you cold if you do.

5. Throw a box of crackers or whatever safe snack food you eat in your suitcase. Off mealtimes, touring, and just not being able to hit the kitchen when you need a snack can cause more problems than fitting a box of crackers in your suitcase. Room service menus rarely have anything for the tummy troubled and vending machines are worse. (If they are even available! I have noticed that fewer and fewer hotels have them.)

6. BYOB-You might also want to make sure you have bottled water, sodas, whatever with you. Another city's water may not react well with your gut even if you aren't traveling to a foreign country. Dehydration-bad.

7. Read up on where you are visiting before you go. If you are going to museums or theme parks, see if the map is available online, so you know ahead of time where restrooms are located.

8. If you are going to go see family/friends, let them know ahead of time that any lack of eating, going to bed early, etc isn't a reflection of their company or their cooking.

9. Bring and use hand sanitizer. Lots of it. No, the grime on the atm is not any worse in Peoria than it is in Philly but the bacteria and viruses hanging out in that grime may well be and will grab onto you like there is no tomorrow. Add to that the closed-in spaces of theaters, planes, etc full of people and more public restroom usage than usual.

10. All that said...here is something-prepare for the worst, but expect the best. Some of my best days since getting sick have been while on a trip. That traveler's constipation that troubles so many "normal" folk sometimes hits me and gives me a couple days of quiet guts. Even without that perk, there are good days and sometimes those are out on the road, making for some really magical times.

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.

Scarey!

This...Extracorporeal Photophoresis just sounds scarey. Yes, I know that they use all sorts of chemo and transplant rejection drugs on us now...but that...zipping the blood out, zapping it and sending it back...gives me the creeps. On the other hand...no infectious complications or side effects makes it really appealing. I will be watching to see where they go with this.

Diet and Crohns

I don't talk much about Crohn's and diet around here.

Mostly because it is just so boring. I reliably can't eat: spinach, cole slaw (really more about the cabbage), pizza (see tomato sauce), lettuce, pretty much any leafy green, nuts, sesame seeds, popcorn, cream cheese, deep-fried foods, (yeah, so pretty much all those fatty foods folks are supposed to avoid definitely are out for me) tomato sauce, more than a slice of tomato.

Depending on how brave I am and how I am doing some high fiber/whole grain stuff is ok. Lots of anything at all is bad. Sometimes a combo is bad. Sometimes a combo with a light amount of off listed food can be ok. I don't flip out if they throw a few crushed peanuts on my pad thai but sesame seeds on bread can set me off big time, but limited tahini and sesame oil are fine. Add to all this the fact that I am primarily vegetarian.

But then, there are the times when all raw veggies are painful, whole grains hurt, protein makes me puke, fruit is frightening, beans bite. White bread, pasta and cheese, with maybe a side of banana, cooked pumpkin/squash (skinless), green beans, maybe melon. Yum. Low residue. Low fiber.

Then again I can make lists all day and eat things all on the ok list and still find myself in the bathroom all day. So, I avoid breakfast. I rarely eat lunch at work. Right now, since I am on Prednisone, I have to have a breakfast and lunch, so the fabulous Boost is my "meal" for those two, unless I am home. Otherwise, the flare and food means I can't work.

And, everyone with Crohn's and Colitis has a different list. Depending on your Crohn's high fiber might be the way to go every day...or it can kill you. Depending on where your Crohn's or Colitis is...you can eat different foods.

Then there are the "miracle cure" and just give it a shot diets. Biblical. Raw Foods. SCD. Ayurvedic. Aloe. Green. Lactose-free, yeast-free, sugar-free, gluten-free. They help some people. They hurt other folk. None has been so hot for me...but I will probably give each another shot. When in the middle of a mess you grab whatever rope you can.

In any case, I got to talking about diet because I read Gluten-Free(k)'s post the other day about needing some ideas for summer. She has gotten her Crohn's under control, her celiac's is getting better...and she is looking for food to eat and enjoy this summer. Go take a look at what she can and can't have...and give her some ideas. I am looking forward to some lettuce free summer dishes myself.

Happy World Crohn's and Colitis Day!

Today is World Crohn's and Colitis Day...the very first one ever~ You may remember Josh Golder who has stopped by here a few times...he is the True Guts guy. By the way, go there and see the new movie clips. Nice. Really Nice.

World Crohn's and Colitis day was his idea and he wants everyone to take a moment and talk about it. (because people really don't talk about IBD. Crohn's and Colitis involve gorey bathroom issues that most folks have a hard time talking about.

Here he is talking about Crohn's and Colitis Day on YouTube, giving ideas on how to celebrate:

Anyhow, there is nothing happy about having Crohn's or Colitis. You might go into remission. You might stock up on some great bathroom humor. You might develop a great relationship with a gastroenterologist. But, really those are the minimal high points.

Crohn's is incurable. It is chronic. It isn't something that ever goes away completely with any medicine. It is painful, embarrassing, and a downright pain in the ass, for the patient, and for their family.

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.

DDW Round up for Tuesday

New Data On the Probiotic Strain Bifantis Woo hoo mice, salmonella and probiotics. Yet another reason why probiotics may be worth a shot for you.

Lialda and Ulcerative Colitis Remission Mesalamine didn't work out so hot for me because of a reaction to it, but even if it had, the schedule was a killer for it. The remission rates are probably related to making it far easier to not miss doses/forget doses/have to hassle with finding food/bev/time to take it at all hours of day and night, which I am all for, so this is good news.

Phase III reports from Humira and Crohn's "CHARM" studies are in and good so far...showing fewer hospitalizations. At least on my skim of it and of course, I am a patient not a study expert, this is press release from Humira as well, so who knows what isn't in the article.

Cimzia for Crohn's Press Release Cimzia appears to be another anti-tnf investigational drug that is supposed to avoid cellular cytotoxicity.

Happy Digestive Disease Week

It is Digestive Disease Week in Washington. You know what that means...besides lines for the bathroom...lots of news and wanna be news on Crohn's, Ulcerative Colitis, and other fun digestive diseases. One of my news feeds pulled the story that popcorn is ok now for folks with Diverticulosis!
There is also the ChemoCentryx spiel on Traficet-EN. which is a treatment in clinical trial for ibd.
Then there is something about Ligand Rosiglitazone for Active Ulcerative Colitis (Hey that page also talks about the nuts/popcorn thing)

Anyhow, with that many GI docs in one place you will be seeing all sorts of media stories to talk to your doc about next time you see her/him. Just remember, a lot of this stuff is smoke/mirrors/flash and clinical trials. A small study can seem like a dream, a new drug can seem like a cure, in reality...more research needs to be done and you may not have these options in your area...and they might not be the ones for you.

All that said, I still watch the press releases from DDW like a fiend and am interested in the ideas. It never hurts to find out what theories are out there or ask your doc about the newest research.

Funding for Research

You should go read this and do what she says...see if we can't get some more funding for these unglamorous, non-pink diseases-Ulcerative Colitis, Crohn's and IBD research. Besides it is good way to practice your citizenship skills. Go for it!

Novel TP and Toilets

You have to go check out this gallery of Novel Toilet Paper and Toilets. I am way amused.

This Bite Me one is my favorite right now. Though I know the hand is the one most likely to end up in my home.

Toilet Paper and Wedding Dresses

Remember last year's toilet paper wedding dresses? Well now is your chance to enter for THIS year. I know all you tummy troubled folk have plenty of time to observe the natural wonders of this material. Win money! Wedding Favors! Save money on your dress.

Gold Standard

Decision Resources, Inc., one of the world's leading research and advisory firms focusing on pharmaceutical and healthcare issues, finds that Abbott Laboratories' Humira will replace Centocor's Remicade as the clinical gold standard for the treatment of Crohn's disease by 2010. According to the new report entitled Humira Emerges as the Leading Therapy: A Crohn's Disease Study, Humira outperforms Remicade in efficacy, safety, and convenience.

"Data from Phase III clinical trails suggest that Humira more effectively maintains remission and clinical response than Remicade," said Cynthia Mundy, Ph.D., therapeutic area director at Decision Resources. "Humira's less frequent and less severe hypersensitivity reactions, lower rate of minor side effects, and subcutaneous administration also are improvements over Remicade."

Are you buying it? Convenience maybe, but the rest? I am not so sure. But, then again, I am not so sure about the Remicade either. Maybe I am just naturally suspicious when the words Gold Standard are used with this cruddy disease.

Two Really Excellent Posts

From Tummy Troubled bloggers I just discovered through the magic of a new search feed thing.

Tired of My Body I definitely can relate to the tired of my body and Crohn's and the parts where you think I have to live with this for the rest of my life.

And... a nice long ramble on the ulcerative colitis survey I mentioned yesterday on A Bag Full of Health and Politics

I had no idea

Seriously sponsored survey with lots of lovely Lialda propaganda but you gotta say duh when you read a headline like "Ulcerative colitis sufferers find UC quite disruptive to many aspects of daily life"

Wish I knew where to get a copy...

Adapt: Simple & Inspiring Crohn's Friendly Cuisine
Because cookbooks are fun and one that might have ideas...even more fun.

Somewhat Cheery Tummy Trouble News

A bill in the Texas Leg. to give employee only bathroom access to people with medical needs for such things. But, only somewhat cheery because that would make 3 states with such laws. And only somewhat cheery because I can't imagine how hard it must be to be a child with Crohn's or mother of a child with Crohn's. (or other IBD/Ulcerative Colitis) Accidents are bad enough as a grown up. And imagine your child's really yucky tummy flu not lasting 24 hours or 3 days but for years.

Not so Cheery New Research

Mortality in Crohn's Disease

Assessing evidence from original studies and conducting a meta-analysis shows age-adjusted mortality risk from Crohn's disease is over 50% greater than the general population.

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)

Rectal Itch?

Write away for the guide!

Just What I Have Dreamed of Finding! not.

The chocolate Anus! Perfect for your wedding or civil ceremony?

Now, can you imagine the dinner party where you whip these out?

Rimming safe style?

A Handy Toilet...

You want this one don't you? Come one, ever needed a hand in the bathroom?

Oprah talks Poop

Oprah talks poop! I love Oprah. I wish I could watch Oprah! Darn it.

Toilet Sink Combo Anyone

Is this perfect for a small bathroom? For a tummy troubled person? Or just an expensive way to bring that prison cell look home?