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

Nick and Crohn's

Hmm interesting, I am not sure the bacterial thing.

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.

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.

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.

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.

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."

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.

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.

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.