Zebrapatient.org

I love this blog:

http://www.zebrapatient.org/

Especially this part:

I know three zebras, all of whom are the opposite of what the public probably expects. Rather than complaining about blown veins or the chest pains that are actually signs of a heart attack, zebras are likely to handle bodily complaints casually, joke about them with people who understand their disorders—or to say nothing at all. I suspect we develop this strategy, based on years of hearing family members and doctors refer to us as complainers, attention-seeking, or just plain nuts.

Wow! This is exactly how I feel! I'll be following this blog for more insights :-)

Released

Well my surgeon officially released me today. My surgical scars looked good (I tend to heal well) and he said I can eat "anything I want." Uh-huh. Something about me feels unsettled in that place but I'm not sure why. I guess it's the fact they don't understand how much I know. They think I'm your average run-of-the-mill patient who doesn't research and takes their word on everything.

The reason I say that is I asked if I had metal clips and he said, "WHY?!" in a very odd tone like, "Why would you need to know that?" I said "Oh in case I ever get an MRI. Sometimes they ask."

He said I have a few titanium clips in there, but MRIs should not hurt it.

I also asked how large my gallstones were, and he said the biggest was 1.2 cm. That is pretty darn big, and I'm glad that didn't get stuck in the duct! He said the labs revealed my gallbladder was fine except for inflammation and stones.

My final question was about irritable bowel. My bowels are still not working quite right (probably from my EDS). He said if I did have IBS, the gallbladder being removed would not do anything for that. So, I'll still need to see the gastroenterologist! I think I'll give it a few weeks, and then call my family doc again and say things are better but not 100%. I don't expect that this will take care of all my issues. I am realistic. But, I'm glad to be able to eat again!

Bile Salts or Ox Bile

I read a couple places that if you don't have a gallbladder, it helps to take something called "Bile Salts" or "Ox Bile."

http://www.amazon.com/Nutricology-Ox-Bile-Vegicaps-100-Count/dp/B0002JIUDS/ref=sr_1_1?ie=UTF8&qid=1303845628&sr=8-1

Most surgeons are blithely ignorant about the lost function of the gall bladder in patients who cholecystetomy. All patients lacking a gall bladder suffer from deficiency of bile acids. Patients lacking a gall bladder are unable to control bile secretion into the intestines to regulate proper absorption of fats, fatty acids, and fat soluble vitamins. Proper removal of toxins depends on bile acids that are not available in appropriate quantities after cholecystectomy. All persons who have had cholcystectomy need to take bile acids permanently. Without a gall bladder the patient has lost the ability to stock up on fat that can be used as a source of calories in illness and famine, essential fatty acids and fat soluble vitamins(A, D, E, K).

- From http://www.newswithviews.com/Howenstine/james63.htm

I was able to find these capsules at my local health food store, and plan to take them indefinitely. The doctor said there was a BIG gallstone in front of my duct. I'm not sure of the exact size, I'll be asking him Friday! Not completely lodged in the duct, but blocking it pretty badly. My theory is that this was making it impossible for the bile to flow and all the bad stuff just kept building up (toxins, extra hormones, etc.) I really hope that this will be a key part in healing my body!

I made it!

My gallbladder was removed just over a week ago. It was not nearly as bad as I'd feared. . .Except when I first woke up and thought "This must be what it feels like when you're dying." I felt very weak, queasy and dizzy and not even sure if I would be able to get home. They gave me some apple juice which made me even more queasy, and gave me some more fentanyl and anti-nausea med. Between that, and the anesthetic I was buzzing pretty badly. For home, they gave me some Tylenol 3's. Apparently I was white as a sheet and my blood pressure was low but I willed myself to perk up just so I could make it into the car and get home.

Once home I had terrible back pain, pain in my stomach of course, shoulder pain, etc. I was tired but I could not sleep because there was no comfortable position to get into. I didn't want to eat because of the queasiness and not being sure if it would go through too fast. When I did finally force myself to eat some chicken broccoli rice casserole I'd made the day before, I did perk up even more. That night was a fitful sleep from all the meds but the second day it was all better.

I was able to walk around and cook a couple of things to eat. My mom came over but I didn't really need her assistance for anything. We just talked and watched TV together. As the week progressed I was able to do more and more and the pain was pretty much gone.

I was able to hobble into church on Good Friday and actually SING! People at church couldn't believe it. Of course before the surgery they said "Oh yeah you'll be better by Friday." But when I actually was, they were surprised. I felt totally fine just tired! Saturday we went to my in-laws and Sunday we had church again and lunch with my family. Yes I was exhausted by that, but doing well regardless.

I kept waiting for those horrible episodes of diarrhea but they didn't happen until I ate some tomatoes. Just a little tiny bit of tomato juice in a salad - oh man my stomach was NOT happy! So I had to buy some Immodium to help that. Otherwise no major problems.

Simple?

I just need to vent a bit - with the current stress I'm under. I can't eat anything and my migraines have been back to pre-acupuncture levels! Although the surgeon said my migraines are not related to the gallbladder, I've been experiencing other increased symptoms such as:

Cold hands/feet or Raynaud's symptoms
Sweating
Anxiety
Flushing of face
Paleness of face
Dizziness
Weakness
Nausea
Clumsiness/trouble walking
Trouble speaking correctly
Skin itching
Extremely low blood pressure
Lack of appetite

So what is all this?? I am starting to suspect that I'm having dysautonomia flare-ups from the stress of my surgery, lack of exercise, gallbladder etc. The thing I need to vent about is that everyone I try to talk to has some brilliant idea of what is wrong with me and it is usually something VERY SIMPLE and EASY!

Not to brag, but I'm a very smart person. I was the top student in my high school class and got A's in college easily, too. So I am rather insulted when someone who doesn't know anything about Chiari or EDS says things like "Well you should just exercise your knee more," or "You should eat more meat," or "You should just go live by yourself somewhere." Hinting that if I only exercise, eat a certain thing or get rid of 100% of my stress I will magically get better. Sorry, but I don't think this is the case. If there was something simple I think I would've discovered it by now!

In the case of those with simple ideas, they ARE trying to help but I feel that they are not listening! I eat the healthiest diet of anyone I know, I do have some stress but I think my attitude toward it is healthy and I do a lot of research about both western medicine and alternative treatments. I get the best of both worlds; some western treatments help and some don't. Some alternative/eastern treatments work and some don't. I've tried almost everything there is and I'm a walking medical experient. So please, please, please don't give me simple solutions until you have listened to my 10-yr. saga of EDS, Chiari and who knows what. Thank you!!!

OK so my gallbladder is going bye-bye

I went to the surgeon Friday to discuss my gallbladder results. Although the Hida-Scan showed the gallbladder was contracting normally, it made me incredibly sick. Also it's full of gallstones and the stones will just keep growing back. He wasn't sure at first if the gallbladder was causing the problem but when I descibed exactly how the test made me feel, he said it should probably come out :-(

I was rather upset about this, since I've already had one surgery this year! This would only be the fifth real surgery I've ever had done (excluding pain shot procedures). I've had my widsom teeth out, a heart cath for my tachycardia, the right shoulder surgery and the left knee surgery. So it's a pretty big deal for me to have two so close together.

I felt like bursting into tears at the surgeon's office. After leaving and having a good cry, I pondered the situation all weekend long. My mind just needed some time to mull it over. After the weekend was over I was feeling much more at peace! This surgeon is EXCELLENT - very kind, caring, smart and experienced. The lady who scheduled my surgery said "If it's the gall bladder, Dr. G usually KNOWS," and gave me a knowing nod. He didn't pressure me to have it out, he gave me options and he explained everything well. He asked me if I had questions. He even gave me a booklet and a website complete with animations and explanations about what they would be doing.

Also, I heard from a lot of my family and friends who've had their gallbladder out. They all said it helped them and they didn't have problems. The only issues were eating too much greasy or spicy food, or certain types of raw veggies. They also said to take bile salts or ox bile to help digestion. I've been researching the gallbladder a lot, and I feel it probably has something to do with my EDS and dysautonomia. More on that later. . .