Tummy Troubles and BlogHer

I have blogged about attending BlogHer before and my tummy trouble anxieties related to attendance. I wasn't going to do it again. My daily life is packed more than usual lately. (House guests, my mother lives with me now, uh LIFE)

But then the Queen of Spain, one of my daughter's heroes posted this: Spilling My Guts. Now, I follow Queen of Spain to some degree on Twitter, BlogHer and such. I had noticed her posting that she had puked or felt icky...but I also tend to blank out such things since, well, they can be a daily occurrence around here.

So, here it is my annual discussion of BlogHer and Crohn's

1. I scope out bathrooms first thing. I will note the hidden tucked away ones. I will know which men's rooms turned into women's rooms. I will in an emergency USE a men's room...even if it hasn't been turned into one.
   
   
2. I will likely pick at a lot of meals or excuse myself from food smells.
   
   
3. I am a food blogger who avoids food blogging things...because of my tummy troubles and knowing that I will be in a situation where I will feel awkward for not eating this or that or smelling this or that, or gushing over food pictures.
   
   
4. I will limit handshakes and hugs...but avoiding all of them is impossible (and damn it, I will want to shake your hand or hug some of you) because the drugs for the Crohn's give me the immune system of well...I can't think of a comparison. Likewise, even off the drugs, I will catch and my body will overreact to whatever. However BlogHer Bola is a real threat...take and use plenty of antibacterial gel. (This would be my dream swag each year)
   
   
5. I may look like "death warmed over" even when having fun. Ignore it. I am not grouchy. I feel fine. I don't want the pity look. Do talk to me. Do know that I am something outside of tummy troubled. I am gorgeous and raccoon eyes are in.
   
   
6. I may need a nap. That doesn't mean I didn't want to attend your session.
   
   
7. I will pack my heating pad and meds...even ones I rarely use at home.
   
   
8. I will pack extra pants and an extra nightgown just in case.
   
   
9. I will need to not party all night. Even if I don't sleep...I need to have the quiet time and plenty of baths.
   
   
10. I will have a good time.
    
    
    

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.

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.

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.

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

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.

Bad Tummy Trouble Blogger

I haven't had much to say lately. The tummy troubles seem to have hit a nothing new point. Most days they are not too bad. More and more weeks go by where I don't go for a couple of days then make up for it all in one night. I really won't complain about that, since as we all know, it is easier to deal with tummy troubles at home than at work.

I am scheduled to have another colonoscopy on May 17. This time at the hospital so I imagine they are going to lasso the mystery bump at that time. I am not thrilled about it but maybe once that is done, doc will chill a bit.

tummy troubles, crohns, colitis, IBD, colonoscopy

Tummy Turn Offs

The people at Pennington Biomedical Research (Part of LSU) are doing studies on why the GI system shuts down and reject nutrition...for instance creating nausea and the like. This is all very interesting since of course, I as the tummy troubled one have my issues with nausea. I think also if they can solve all these mysteries, the research could lead to treatments for IBD as well as other GI problems. (YAY!)

It seems that the immune system uses a protein called TNR to fight disease, in part by causing normal GI function to stop, all well and good until it goes a bit overboard.

Thalidomide blocks TNR, however, that isn't really a great drug for a number of reasons, primarily really bad birth defects related to its use in the 1950s.

thalidomide, lsu, research, tummy troubles, Crohns, IBD, Ulcerative Colitis, autoimmune

Hand Washing

Washing hands is not fun, not usually. Getting sick is less fun. Getting sick because someone else didn't wash their hands happens ALL. OF. THE. TIME. It happens to you. It happens to me. It happens to folks with even less immune protection than me. I won't even tell you the horrid things I have learned from working in food safety land. Let us just say...the mayo in potato salad isn't the biggest food safety thing you should worry about at the party.

So, of course, at least I, would like for better handwashing habits to catch on like wildfire. So would the folks at Iowa State University Extension. They currently have a survey about which handwashing billboard you most would like to see, so go wash your hands and VOTE for your favorite.

food safety, food poisoning, billboards, handwashing

Spa Of Embarrassing Illnesses

UKTV Style : TV Guide : Programmes : Spa of Embarassing Illnesses : Spa Of Embarrassing Illnesses: Episode Guide: "It's estimated that 75% of people in the UK suffer from an embarrassing illness such as IBS, excessive sweating, bloating, obesity, psoriasis and piles."

Interesting idea for a reality tv show, though one has to growl about the fact that presumably these folks are going to be fixed with these alternative treatments...thus leading the "caring", "concerned" folks to have just one more thing to point to when they say "I saw on tv where all that someone with _______ had to do was stop _________ (or take up yoga, go to a ___________) and they were cured!" It might be true in some cases, but in more cases I think it tends to make the person feel like they are sick because it is their own fault.

The Stool is black

The toilet paper is white. The flu has been such a fright. (and has led to aforementioned tummy troubles.) Cross your fingers that I keep them mostly at bay for my kid weekend.

Fatigue

I haven't been around much lately. Busy for a while, nothing much to say but more than that lately...mind-numbing fatigue. Now, this would make sense if I was getting no sleep, but I am sleeping just fine.

I am not sure if it is a cold, busy days or something tummy related. The only notable tummy stuff of late has been horrid cramping at 3:30-4 every afternoon for the past few days. I tough it out and it goes away.

Fried Mushrooms

Fried mushrooms are BAD...especially a number of them dipped in yummy horseradish sauce. So are falafal with sesame seeds ALSO fried...even on my baby's birthday. Sigh.

Technorati Tags: friedmushrooms, falafal, sesameseeds, crohns, crohn's, colitis, badfoods

Tuckered Tummy

I am sitting here wondering whether to post about my craving unfulfilled for over a WEEK for a McDonalds hamburger. (yeah, yeah, I am a vegetarian but umm lapsed).

Or maybe I should blog about how colds are evil things and make my already yucky tummy magnify yuckiness.

Or maybe about my craving for peanut sesame ramen noodles which I don't want enough to get over my sniggling suspicion that pantry pests are afoot...not roaches but those little grain bugs and such that you only really see in the Gardens Alive catalog. In any case, I know that I have low tolerance for these showing up when I toss noodles into boiling water and have particularly bad reactions to them when I am sick. My mother suggested ramen to me when I was sick one time as a teen. As I cooked them, I saw the dead and half dead wriggly larva or whatever and didn't eat ramen for almost 15 years. (including during the poverty stricken college years, but not including the an infant and a toddler and no money but the then husband was forever away on a business trip complaining about the quality of food at conferences, the scheduling of meals, and feeling bloated after too much lobster days...where I ate many bowls of ramen.)

Technorati Tags: mcdonalds, hamburger, sesame, peanut, ramen, bugs, pantrypests, cold,

Bleah!

I swear, I am never, ever going to think I am doing good with my Crohn's ever again, much less say so. The past few days have sucked with yesterday and last night ROYALLY bad. Crampy. Painful. Lots of nasty, pudding is thicker diarrhea. Aren't you glad I shared that?

Is it because I started taking my Forvia vitamins again? Is it just chance? I would like to blame it just on bad food choices butttttttt it really started before that. ARG! Oncoming menstruation? Maybe, but last month I did ok pre-menstruation. (granted that was an anomaly) Stress? Well, maybe, but that can be argued too. Endoscopy? Well, they didn't exactly go "down there." Lingering cold for a month? Maybe. Infected teeth. Maybe.

BLEAH! BLEAH! BLEAH! In any case, I want some clear cut causation and cure. If x happens, then y results. Chronic disease SUCKS.

Technorati Tags: Crohns, crohn's, colitis, tummy_troubles, IBD, menstruation, forvia, endoscopy, diarrhea, chronic

Upper Endoscopy

The upper endoscopy was on Tuesday. I know. I have sucked at keeping everyone up-to-date but I have been broody and the like. It is January, you know.

Anyhow, the endoscopy went well! No problem prep, no food after midnight, clear liquids until 4 hours before but really I didn't have anything but clear liquids for like 15 hours before. Sore throat afterwards complicated by my cold. (see below)

The stomach showed extensive edema but nothing alarming so no changes see her in two months! YAY! They even sent home souvenier pictures. I will scan for your enlightenment at some point. The kids have certainly enjoyed them!

Christmas and New Years went well. I even managed to snag some greens without paying the Crohn's price. I have had a horrible cold that started 12/23 and has not gone away. I was just sitting here wondering if my ear might explode. I suppose I should call my regular doc but geez.

Technorati Tags: crohns, crohn's, IBD, endoscopy

Crohn's Ups Risk of Intestinal Cancer

Health News Article | Reuters.com: "Crohn's Ups Risk of Intestinal Cancer" maybe... at least according to a new report but even it concedes that this is based on people with Crohn's who have been treated with all natures of different treatments (back to the 1940s)

Of course, my question without looking here is that seeing as how the small bowel is not that readily visualized, could it not be that people with Crohn's are more likely to get it noticed just because of a higher freq. of imaging of that area?

Camera Update

I have been meaning to get here with the newest update on the camera endoscopy. My doctor called Wednesday. She first spoke with my partner since I was at work and she called me at home. She gets high marks in my book for actually speaking to my partner, especially at length. Then she called me at work.

We spoke for quite a bit. Camera endoscopy looked good as far as all that small bowel stuff. She was also reassured about the mystery spot. She has decided that at this point surgery isn't necessary to remove the mystery spot. YAY!

However, my stomach looked to quote her "bumpy and inflamed" She says the camera isn't such a hot way to look at stomachs so she wants to do a regular upper endoscopy.

Since I have been doing relatively well over the past few weeks she also has decided to hold off on the remicade for as long as we can. Another yay for that. I think she also perhaps concerned about the hives and how remicade and hives won't mix well.

All and all, pretty good news. Upper endoscopy is not my favorite idea of how to spend a day but it could well be worse.