Wallpaper

Rainbow Poop wallpaper with perfectly formed poops of the tummy troubled dreams.

Crohn's and Kids...and expensive drugs

Happy Thanksgiving and World Toilet Expo

They even have a toilet that weighs you and tells you your blood sugar every time you go. Wonder if they will ever have one that points out "hey, you have flared long enough with this bout of Crohn's/IBD/tummy troubles and this really is bad enough for you to call the doctor!" ?

Doc Update

She is giving the current meds 1 month (well, less now) and she is way not pleased. Trying another Pred taper, and this one better work because I think she is more anxious than I am to get done with it and believe me I am WAY over the prednisone. Blood tests this week. Another Prometheus test at the end of the month. Bone scan.

Crohn's rots.

Fabulous 24 hour Comic

See this one on Living with Crohn's

Sharp Toilet Seat

I have seen some unusual toilets and toilet seats. Really. I mean...who can forget the giant hand toilet for instance? We even have an interesting toilet seat upstairs. In the "master" bedroom however we just have the insanely practical antibacterial toilet seat.

This one though...I think it takes the cake for interesting as far as toilet seats. For a mere 69 pounds...that is around 140 bucks, you too can own a razor blade toilet seat from The Perfect Pad. They also have a barbed wire option. I suppose both are apt for those days when it feels like there are razor blades on the loose in my gut.

Nick and Crohn's

Hmm interesting, I am not sure the bacterial thing.

Cloth instead of TP

Now, I had a child who didn't tolerate commercial wipes at all, so I have done a fair bit of cloth wiping...but not on me...never considered it. Now, uh, with Crohn's, definitely out of the question...since uh I don't do the laundry and even I would be totally skeeved out dealing with the laundry in this instance. But, on the other hand...it might be preferable to the cheap toilet paper we are using currently at our house. Of course, I can just hear the reaction now if I suggest this to the children.

So, are you going to try the Wipe with Cloth challenge?

Appendix and Crohns

So researchers in Sweden and Denmark have found some more evidence that there is a link between Crohn's and appendectomies. They can't decide of course, if it is the appendectomy that makes it more likely that you get Crohn's or whether the appendicitis is diagnosed when it is really Crohn's. The whole misdiagnosed appendicitis seems eerily apt in my case.

Right before my oldest child turned one, I became seriously ill within a few hours-incredible throwing up, diarrhea, fever, pain. We went to the emergency room, they diagnosed appendicitis and did an appendectomy. When they pulled the appendix though, the biopsies showed some inflammation and a "plug" and some other oddities...but the docs weren't really concerned. I recovered and went on to have some off and on stomach flu type things that no one else would get but unremarkable. Fast forward to the mystery bump and crohn's and all my colonoscopies...the parts of my intestine with the most marked crohn's: right there in appendix land. hmmmm. Yep, it could have been appendicitis. It could be a chicken or the egg...but an interesting connection.

Studies Sometimes Make Me Giggle

Ok, I know that science is all about proving what we think is true. Still...sometimes studies make me shake my head. Like this one from the September issue of the Inflammatory Bowel Disease journal that says some very important things about folks with Ulcerative Colitis.

1. The quality of life for UC patients is better when they are in remission.
2. UC patients miss less work and are more productive when they are in remission.


Couldn't have guessed that at all.

Belly Blingee

Myspace Glitter Graphics
Idea courtesy Miss E.

Neuropathy and Crohn's

There is a new report out about Asymptomatic Neuropathy and Crohn's disease.
Basically, neuropathy means that you have some nerve damage and/or your nerves aren't talking to your brain correctly. It can mean tingling in toes and fingers and sensitivity to touch ...which can occur because of the B-12 and other vitamin deficiencies common to people with IBD.

However, it can also mean that the nerves in your guts just don't work right...causing tummy troubles even when say a colonoscopy shows no inflammation. Finding out this is the cause of pain, diarrhea, constipation and what have you instead of a run-of-the-mill flare can mean a difference in treatment. Instead of the anti-inflammatory treatment...you may need a different sort of treatment sorted out. The other thing to be aware of is that while many issues with Crohn's can take years to start...this happens early in the course of the disease.
In any case, it is nice to know, I suppose that we aren't losing our mind when we go to the bathroom 5 million times a day but our scope "looks good". It was also good to find out that this can cause a lot of the bladder issues that I run into. Adding it to my list of things to chat with the GI doc about.

Save Water!

An interesting little project to save water while flushing a gazillion times a day and washing your hands after each time: Hack a toilet

Check Up

Check up today. Back on Prednisone ("Just a low dose"-with at least an 8 week taper) , another fun stool sample collection...DESPITE me telling her that it really wasn't that bad, and I would rather just stick with the status quo. Darn it.

I saw the PA and she was all "We will just up your Imuran." I said "Wait until you talk to the doctor, (I knew the PA had to talk to the doc in order to write scripts anyway) I think the doc will not think that is a hot idea. I am all for it because I don't really want to move up to our next choice, but I am thinking doc will say no" The PA didn't believe me. The doctor said no to upping Imuran. LOL.

Doctor wants me back in a month. Scheduler gave me the first available-in NOVEMBER. So...I am sure the doctor's nurse will be calling at some point.

Potty Mouth

Just a round up of Tummy Trouble and Potty news across the web

A Crohn's Stamp I want to see the design. Think it will be a gut? a toilet?
Flushie the Talking Toilet
Flushing Fish Toilet
Toilet-o-rama
Toilet Paper Origami
Poop Culture

Oh wait, you came to hear about real life tummy troubles? Umm well, uh, doing ok. Check up on Wed.

Prednisone Withdrawal

Look what came across my health feeds this morning. Symptoms of Prednisone Withdrawal

Prednisone Surprise

Prednisone Quiz

Correct!

You answered 10 items out of 10 correctly.

Your score is 100%. Excellent job! You know quite a bit about prednisone.

Crohn's and Farms

See...if my parents would have just gotten a cow...like my mother wanted...I wouldn't have a tummy troubles blog today. We had cats and dogs...but no cow. I did visit my grandfather's farm though. He only had horses by the time I was born. (and barn cats)

Some other Tummy Trouble Posts

Just a round up of some other Crohn's posts around the internet that everyone should read
A year What a nice celebration.
Yikes-so sad People are dumb and mean.
You look so good I just was talking about this at the Blogher Unconference. It annoys me no end when folks are all "you look so good, you have lost so much weight" after a particularly bad bout with tummy troubles. Or the even better "I wish I could have Crohn's so I could lose weight so easily" Umm no, losing weight fast is not a perk. And the general, I never knew you had that, you are always so perky/look so healthy. hmm

Then there was a really sad one about a woman my age with Crohn's for about the same amount of time as I have had it and she went into the hospital at Christmas time and just passed away after getting better/worse/better/worse/better but then suddenly worse, without ever coming home again. I can't seem to find the link but it was a scary, sad thing.

See Libraries and Tummy Troubles Go Together

You should go look: Library-Gut of the Community

Can't Miss Toilet News

1000 toilets in one public bathroom in China. Some of them are really cool! I like the spreading toilet culture part!

Count Down

A poem by Robin Morgan...Go buy her poetry and her literature and stuff...

Survival is the final offer

that arrives at the eleventh hour

just when pain to the tenth power

would kill you with another ninth degree.

By then, relief strikes you brief as an eighth note;

you wear doom proudly; it's your seventh seal.

But life whispers through your sixth sense

of what might await you in some fifth dimension

where miracle is saved for the fourth quarter.

Tricked, you sigh and rise on the third day.

You know better, but with no second thought,

risk that first step-absurd as first love at first sight

as if you were back at ground zero, as if it cost

nothing, as if this were not the last laugh.

Port-a-John Stonehenge

Perhaps a statement on constipation? Maybe why the festival was sunk in mud that looks tummy troubled? Don't know...but take a look at the Banksy Stonehenge. Of course, we could also get into the worship of toilets...

By the way, CNN reported that 160,000 rolls of recycled toilet paper were handed out at the festival.

Crohn's and Colitis Awareness Week

Happy Crohn's and Colitis Awareness Week. Most of you know way too much about Crohn's and Colitis. You know it sometimes can be a literal pain in the ass.

In case you don't know about Crohn's or you are new to it...the CCFA is the place to learn more. They have information, news, and resources.

Crohn's & Me is a great place to go if you are focussing on the pain in the ass part and need a bit of inspiration.It has all sorts of stories on people living and thriving with Crohn's disease. People with Crohn's and UC have guts for sure. They get up, they work, they raise families, they do amazing things every day.

Cures are in the works. Treatments get better all the time. But of course, all of that takes time, patience, and money. Awareness helps get that money. Because Crohn's and Colitis are digestive diseases...no one wants to talk about them. Your co-worker, friend, idol, or family member might have it and never talk about it. You might never talk about it. So, take a moment to talk about it. Talk to your lawmakers, grant foundations, friends and family.

More Folks with Crohn's

More Fall Ill to Crohn's and IBDs.
I read a post on a blog the other day (I would link but of course didn't save it because um I have no short-task ability (surely that is what it is called) these days) where someone called Crohn's the disease du jour. It made me laugh and growl. Usually things I consider the disease du jour have no quantifiable lab results or sketchy made up labs. But in any case, it does seem like everyone and their cousin (mostly their cousins actually) has Crohn's or Ulcerative Colitis these days. Is that really because it is on the rise or is it because once you say you have this...other people will confess they do too? Is it because in these food safe times, the symptoms are more unusual and alarming, so you go to the doctor? shrug. Don't know. I know I would be really glad to get rid of this "disease du jour."

Meaning

Remicade Reprieve

The test results are in. Nothing really scary on the ct scan. Yay! Even better, we seem to have some room to play with upping the Imuran dosage instead of starting right away on Remicade. So, we will very, very, very cautiously up it with lots of blood tests.

Flush Game

Flush duckies, dog food and more with dishy Jo the Plumber. It is an interactive ad for Kohler toilets (and a pretty darn effective one. We could use that kind of flush power here!) So, go join Jo for some fun in the bathroom...you can click on an object and one of you can flush it.

Boost Plus and Sex

When I am on prednisone, I get the mindset of say a 15 yo boy. Not that I feel well enough to do anything about it, but I can be a bit annoying. I always have blamed that on the prednisone. Little did I know...it is the BOOST that I drink with the prednisone. Yes, click the link. Read the story.

Tummy Troubles + food in the morning = NOT OK.
Prednisone + nothing in one's stomach= Definitely NOT OK
Prednisone + Boost=Get on with the day

Ok, so I don't have a penis to get all erect and end up in the hospital. I think the refrain will now become "Sorry my love, it is the Boost"

Poopy Weight Converter

Ok, the weird converter lets you convert the weight of all nature of things (also the length and height). But the truly interesting option is to figure out the weight of things measured against the weight of an average bowel movement. Like...1 gallon of water = 18.8931730551 average poop trips to the bathroom.

Blogging For LGBT Families Day

It is blog for LGBT families day and depending on how often you read and whether you pay attention, you may know we have one of those families. I normally blog this sort of thing elsewhere but this one of those days being in that sort of family had more bearing here. You see, I went for a test. I went to a place where I had to fill out registration paperwork. It went fine...today. The registration person didn't feel the need to question the information on the HIPAA form. But, every time I fill one out...there is that clinch. Will she (invariably a she in those positions...the paperwork taking positions) question it? Will she write "Mother" next to the name? (this has happened.) No, I don't mind explaining it. Well, yeah I do. But I mind more when I am sick, or getting ready for a no doubt uncomfortable test.

Do I think that Hipaa (does anyone else want to call it HIPPA?) is a good idea? Yeah, it is always nice to know my boss, my ex, anyone with enough curiosity can't enjoy reading the annals of my anus. More fun to read my blog anyway. On the other hand, the fact of the matter is that my partner is on my paperwork for what can seem like trivial reasons, so the nurse can call her and say "lab results mean more tests are needed," "Doctor is calling in a script". Yes, they could try and call me but Murphy's law means that I will most likely BE IN THE BATHROOM when they call the office. And of course, if I am sick...I may be in the office, I may be home. In any case, the best way to reach me is to call her. The best way to schedule something-call her-especially since she has the calendar and I can get numbers transposed in seconds. She drives. She has the car. She has the immutable meetings and responsibilities more than I do. In any case, when the dreadful happens and I am in the hospital, she is my grown-up in town who will be able to follow what is going on.

Back to LGBT family day though, she is my family. Her kids + my kids are our kids. If I say in response to some comment "Oh my daughter is going to a concert tonight", do you really need to know "is she really your daughter"? Because she is. Do you need to take the paperwork at the doctor's office and put the info into the computer or do you need to delve into who that person is and why they are listed? Yes, certainly, discussing your family with your doctor is important. No problem. The financial office at the doctor? Not so much. Other than are you the primary card holder? Not at all.

Then there is all the other paperwork...but mostly I want to get past the point of the awkward moment when I hand it in or answer the intake interview questions. I know my answering them makes them realize that we exist and look and feel and do just like everyone else and that helps. It is just the waiting for everyone to not give it a second glance and the startled questions that makes it hard. She is my family, our kids are our family.

Crohn's Comedy

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?

A Change of Pace

Toilet Paper Opera

NakedJen

NakedJen is on prednisone too. I will point out that my doctor didn't give me carte blanche to run around naked. I think I must have not gotten full prescription info.

Just as well though. Nudity is not tolerated around here. I do hope her poison oak gets better FAST and she has just a short run of prednisone.

Chemo Fog

Nice article today in the NYT about Chemo Fog. Posting it here just because Chemo fog is probably familiar to many of you as just that and then, there is the fact that a lot of Crohn's/Ulcerative Colitis drugs...those nice immuno-suppressants and prednisone for instance are the same sort of drug used in chemo, though in milder doses.

My prednisone fog is better this week. One drop of dosage did help a lot I think, though I know that I am still not where I want to be! Fortunately, it is usually at its worse when only one person is around to laugh at/with me about it. I totally related to the woman in the article saying "that thing with numbers" for calculator though.

Better? Maybe?

But prednisone antsy (yet tired!) and not sleeping well. Crohn's guts seem to be healing some though. Well, at least I am trading living in the bathroom for bloating, reflux and such...which is probably a good thing. I will get that part licked just because it is pred. fidget munching that causes that, so I will just work on being all zen like and ignore it. Anyone know why prednisone can sap the taste out of everything yet still give you munchies? (or how it can make you tired and bouncy at the same time?)

You know...

You don't want to hear my ode to prednisone (which is running around half formed in my prednisone slaked brain and makes prednisone sound rather like a bad boy in West Side Story or something)

So...I bring you ....something new and exciting from the International Home Show! Toilet Tattoos

There are some "elegant and sophisticated designs." but I am just about ready to order the one shown here. Ostensibly for potty training...I am thinking the irony for tummy troubles and me, ...makes it perfect!

Make Your GI Doctor Laugh

Tell her as she apologizes for prednisone side effects before she even writes the script "Hey, at least my house will get clean". GI doctor laughed and laughed and apologized for laughing. I am not sure what part of that was funny...ok not that funny. Especially since Denise HATES that part of my steroidal evilness.

If you really want Prednisone humor though...go get this Carla Ulbrich CD...there is no sample of her Prednisone song...but there is the tummy trouble favorite--On The Commode Again. Carla is super sweet and funny. I love her. I love her boots. I love her songs. I love the silliness. She is a family favorite. My beautiful daughter is especially fond of What if your girlfriend was gone? Well, in fact both of the daughters are fond of that, though the younger one is more fond of The man who changes the lightbulbs. My son...loves the wedgie song. (all of those on different Carla cds...buy them all...they will cheer your heart)

Ass-ume the position!

Best results are achieved if the bowel is emptied immediately before the enema is given.

1

Preparing the Medication for Administration

a

Shake the bottle well to make sure that the suspension is homogeneous.<--white lovely suspension of a consistency many folks associate with penile fluids

b

Remove the protective sheath from the applicator tip. Hold the bottle at the neck so as not to cause any of the medication to be discharged. <--Actually easier said then done. Very flimsy bottles here. Man I hate the wet spot.

2

Assuming the Correct Body Position

a

Best results are obtained by lying on the left side with the left leg extended and the right leg flexed forward for balance. <--while carefully holding the bottle so as not to "discharge" medication, and without getting some body part crushed under you in an impossible to maintain position...In my case,most likely my breast.

b

An alternative to lying on the left side is the "knee-chest" position as shown here.

<--if best results are on side...why this less appealing option? Maybe for those who prefer blood rushing to their head for 30 min as opposed to squashed breasts?

3

Administering the Retention Enema

a

Gently insert the lubricated applicator tip into the rectum, pointed slightly toward the navel (umbilicus). <--toward the belly button? My rectum is nowhere near where I can point to my belly button, sorry.

b

Grasp the bottle firmly, then tilt slightly so that the nozzle is aimed toward the back, and squeeze slowly to instill the medication. Steady hand pressure will discharge most of the solution. After administering, withdraw and discard the used unit. <---without jumping out of bed and un-assuming the position.

<---interesting rendering of where it should go

c

Remain in position for at least 30 minutes to allow thorough distribution of the medication internally. Retain the enema all night, if possible. <--no babe, can't turn over, waiting for the magic white fluid to reach its target!

Store at controlled room temperature, 15°-30°C (59°-86°F).

Poop for Peace

Happy Poop For Peace Day!

Portable Heated Toilet

With many other features! Just what we need for the toilet closet I heard suggested a couple weeks ago on a tummy trouble board
http://www.tokyomango.com/tokyo_mango/2007/04/portable_heated.html

Google TisP

Woo hoo! Google has announced a new service that allows broadband right where those of us with tummy troubles need it-the toilet. Check it out!

Arg

Still tummy troubled. Not getting better. Also can't get rid of this stupid cold. If the immunosuppressants don't work on my tummy then they sure shouldn't work to keep a cold lingering for more than a month!

Double

Double the blood
Double the fun
Menstruation and flare
All in one!

Custom Toilet Paper

You know you want to give it a go. Will it be the next hot wedding accessory? Housewarming TP job? Print the newlyweds faces on it prior to decorating the car...or do you have more of a statement to make with it? In any case, you can order it at printedtp.com

In other news, flaring bad. At least 15 trips to the bathroom during work. At least when flaring this bad-the trips are quick. Often the hand washing takes longer than the other part. I got a cold last week and it has been downhill since. Crohn's rots.

Tummy Trump Cards

These come from the list of top 20 comic weapons. Who knew?
The Dung Cannon-ok this one seems more like a Neopet weapon with more violence:

Dung’s Dual Poop Cannons - Savage Dragon

One of the many throwaway villains that graced the pages of Savage Dragon, Dung is about as static as a character can be. He is a walking poop joke, armed (literally) with two sewage cannons. Where all that crap comes from remains a mystery, but the fact remains that Dung has one of the greatest weapons in comic history.

This next one-true evil-yet appealling in a wanna know what tummy troubles are like? Let me just show you...sort of way. The Bowel Disrupter:

The Bowel Disruptor – Transmetropolitan

Spider Jerusalem’s weapon of choice, even beating out a good old-fashioned boot to the groin. The Bowel Disruptor does pretty much exactly what it sounds like it would with settings that include:

Watery
Loose
Prolapse
Shat Into Unconsciousness
Unspeakable Gut Horror
Rectal Volcano
And last but certainly not least, Burning Anal Geyser.

Tempting isn't it?

Too bad I don't have it in me to be a comic book evil villain. darn it. I think I got zapped by one though.

Happy Colorectal Month

Happy Colorectal Month everyone. How is yours doing? Do you know? No? Then go get screened!

London with Tummy Troubles

Well, I did it. I went on a lonnnnnnnnnnnng plane trip and stayed in a foreign country-took the lonnnnnnnnnnnnnnnnnnnnnnnggggggggggggerrrrrrrrrr trip home and survived...with crohn's. I even drank the water a couple of times.

Here is the update on London toilets: not bad. Hard to find in places, sometimes key places. But, I survived with no mishaps. (better than my trip last year to PA where there was one)

Places and foods to eat that are relatively safe also easy to find. (one unfortunate meal in Oxford set off an afternoon of bathroom trips-of the run and wish for really good toilet paper sort and also the sort where you wonder whether it is worth it to actually leave the bathroom.) shrug...so not really bad.

The rest of the trip was my normal good and bad mix. I did ok for the most part by being really careful about food choices but overtiredness and such caused problems (ok such=my period which is never tummy friendly)

Plane wasn't bad even though I had tummy troubles on the way home. I swear they let you use the toilets sooner and later on the long distance flight.

Now that I am home though...ugh. I think my body decided that it can fall apart. We had to stop several times on the way from the airport to the house and I am becoming intimately reacquainted with the bathrooms at work and home. sigh.

Only other tummy trouble comment is FOOD SMELLS and PEOPLE SMELLS. If your tummy troubles are aggravated by such things-prepare ahead. One museum smelled like a crockpot starting at about 10:30. Perfumes, colognes, cigarette smoke and people sweat/wet smells are omnipresent at the museums and on transportation as well as at any shop or restaurant. (speaking of the more lung aggravating of the smells-note that you can't get a primatene or similar inhaler from a drugstore there, so don't leave yours at home.)

More Down to Earth

A new bathroom just about anyone can afford...from Playmobil

Tummy Trouble Throne

I hate the word John and the word throne for these items. I will learn to love them when I win this-the ultimate tummy troubled contest!

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.

Bleck

Ok, I guess I should say something but of course saying something makes it real and that is what I have been avoiding since November. I need to go to the doctor. The strange possibly kidney related back pain isn't going away and has led to an interesting host of other issues now...a new variety of poop coloration, and exhaustion. Serious, mind numbing sleep a lot exhaustion...which I would blame on other things but really don't think that is the case.

Of course, the problem is this...as with any unclear issue...do I see the regular doc or the g.i. doc? (are there any votes for just waiting some more to see if it goes away?)

Maybe I need to add one

In Spain...they add a pooping peasant to Nativity Scenes. For a picture go here

Happy New Year!

Happy New Year to the Tummy Troubled! I bet there are a bunch of temporarily tummy troubled today, but my greeting is more for all of you long-term tummy troubled. Mine isn't too bad today. Yesterday was really bad most of the day.

Hope it is a healthy new year for everyone.