Changed GI Docs

I changed GI docs 2 weeks ago. I also had a very expensive CT scan and a lovely run of Entocort. Ok, I just finished the first 14 days of it-not quite as evil as prednisone but don't believe anyone who says no side effects. Just saying.

Growl

My tummy troubles have been problematic in the past week. Not the trips to the bathroom, those have been few. Instead it is a growling, burning pain. Sigh. I don't have time.

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.
    
    
    

New Doctor Advice

Do I choose a doctor on the potential to have great shoes or one who has a great podcast voice? That is the question.

I recently moved and now I need new doctors. This really competes with my middle school daughter's angst over not finding any friends in her new school. No, I haven't told her about my anxiety over this problem. However, just about anyone who knows me knows this ranks up at the top of my list of stressors.

I found a family practice doc today without too much stress. She is in a practice with a recommended doctor. She allows you to email her, schedule appointments online, and her office location is around the corner.

But, I have IBD. That means I spend more time with a GI doctor than I do with my family practice doctor. There begins my angst. I got some recommendations. I looked on health grades. Then I Googled. This is where my problems start...compare and pick a doctor.

Doctor A-Great picture online. Friend commented that she looked like she wore great shoes. (My last doctor did) Specializes in IBD. 20 min drive away. Office hours: 2 afternoons a week.

Doctor B-man, recommended by a nurse in another hospital in town who just knows of him via reputation for his IBD specialization. Approx same age as Doctor A, newer in town though and has an office with Doctor C, 11 min away, that he has office hours in 1 time a week, and is in the same building as doctor A twice a week.

Doctor C-woman, General GI specialty, normal 8-5 office hours, office 11 min drive, finished med school in 1990. (A & B finished the med school portion in 2001) Looks friendly.

Doctor D-Man, recommended by friend, finished med school in 1975. General GI, pancreatic cancer specialty. Really don't feel good about him from his picture, office again, 20 min drive, again limited office hour, twice a week in the afternoon

Doctor E-Recommended by partner of last GI doctor, accidentally heard a podcast by him while reading my feeds today. Ok, accidentally doesn't seem right. I saw that there was a new podcast series about IBD and clicked in to see whether it was at all interesting. It was AND it happened to be this recommended doctor. He had a great podcast voice. Really. His research interests also include virtual colonoscopy (pretty cool stuff) and ways to better communicate with patients and families/better health outreach. That is really cool stuff. About an hour away by car/train/etc...could be extremely stressful for me if I am sick to be in the car that long. Would need to scope out public restrooms along the way.

All five are affiliated with teaching hospitals and are active faculty. This means that I may get great innovative treatment. It will mean my chances of actually seeing the chosen doctor seem low without me being a problem patient. It also means I will either need to deal with my Resident and Medical Student distrust/dislike OR be the problem patient from day one and say no, not willing to deal with them.

So, do I go with great shoes? Office hours? Great podcast voice? Recommendations? (If so, whose?)

So an Update

I have a horrid cold. I have had it for a week. I thought it was going away but it didn't. I would grumble about insurance companies that require mail order scripts and the problem with dealing with the morons who work there (who sent the WRONG script unless of course the GI doctor would like to kill me off with the dosage) but I have this cold. Blah.

Happy Valentine's Day

I guess

I would have to learn to text if I lived in Finland.

In other news-tummy troubles have spread to my stomach according to the most recent biopsies but on the flip side-the lower intestine looks better than ever.

Pee Color Chart

I know a lot of you come here for the pee color chart post and I am not sure what happened to it. So, I will repost the special urine color chart so you can tell how close to dehydration you are today.

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.