Coincidence? I think not.

I wasn't sure what I was going to write.........I've been reading everyone else's posts lately, and I felt like I saw a common theme. Or thread or 'feeling'. Hard to put into words.
It started with 'Number Twos' post about his hypno-relaxation technique. I read that, and tried it. I did feel better. I loved it.
Then there was the one about the jars of rice - the 'love' jar and the 'negatve' jar - I'm sorry I can't remember who posted it - all the blogrolls are to the right of my blog - with links. They're for Crohn's and UC - all IBD's and IBS's.
Then someone else said something about striving to be 'perfect' in this world and putting pressure on oneself - and giving yourself a break, and maybe this stress was too much.
I was wondering about these things for a while - why did the relaxation technique make me feel so good? Why those jars of rice - when I talked to myself with the jar of love? Not constantly criticizing myself for the things I wasn't doing or doing right?

Drs say there is a genetic component to IBD, yet no one in my family has it - and there is a trigger to set it off. Stress? A personality trait? Like OCD? Or perfectionism?

I know this may not ring for everyone, and I don't mean it to. And I don't want anyone to think I'm saying it's our fault - we are a product of our genetic make-up, our up-bringing and our experiences. How many of us have been abused, forced to achieve, been forced to be someone we are not, told to hold in our feelings or emotions, told to react a certain way to a crisis?? I know I have...all of them.
Is it a coincidence my Crohn's appeared after my house burned down, and I had to hold it together for my kids...I couldn't react emotionally. And it was the second time in my life I had lost everything to a fire.
So what's the coincidence? Many of us are asking these types of questions. Wondering if we can beat this. I think we can.
I just had a Dr. appt, with my urologist (he takes care of my kidney - other story) and he told me to work on stress and diet first. Stop with all the tests the other Drs kept sending me for - these were only adding to my stress. Take liquid vitamins, B-12 shots and liquid probiotics. Look at holistic approaches. He's a small, older man, who I consider wise. He's conservative and has the best bedside manner. He should be everybody's primary care Dr. Caring and listens. Doesn't like excess x-rays and unecessary tests. he believes medicine has a limited claim to a persons health...a person is first, knows their body and should follow their instincts.

I know many of us have to be on meds - it saves our lives. I'm not against medicine, it's there for a reason. But some of you are questioning, your instincts are telling you something different. There has to be a reason for that too.
I'm thinking there has to be a stress connection - maybe the conversation some of us have with ourselves, in our head. What do we say to ourselves? Is it the 'love jar' or the 'negativity jar'?

I've decided that I'm fed up with Crohn's - it can live with me, but it's not my life. I'm going to be happy, regardless. Every time I 'talk' to myself in a positive way, I feel better. When I feel pain, I relax, I take it easy and I don't feel guilty. Guilt, huh, that's the other one.

Well I rambled enough. Just trying to make sense of things.

Houston we are landing....

So my insurance company finally (after 3 months) authorized my endoscopy with a capsule placement. Why it took so long, I don't know - they suck. And believe it or not I actually have good insurance.

But, I still can't understand why my Dr needs more pictures. Wtf? A friend of mine has a daughter and husband with Crohn's, so she has been thru the ringer, with the illness and insurance companies and Dr's. I asked her about this, and she said they run every test they can to make money. Of course. And I thought they cared. My tests are done at my Drs office, they have their own surgical center, so they do it all. And every test they schedule makes them money.

I've decided I hate Drs. I don't know what else to do. I don't trust them anymore. I know they need to make money, but they are supposed to have taken an oath to help patients. What happened to that? It's called insurance companies.

I'm only going to put up with so much, then I am going to let my family dr treat me. He will do anything for me - he's the only Dr I ever met who actually cares about his patients. He takes good care of my husband and kids too.

I just want to feel well enough to enjoy life and work. If I can't work I lose my insurance, and who's going to give me insurance now? I have a pre-existing condition. I'm fucked.

Insurance is supposed to be for people with chronic illnesses, and to be there when something happens - like car insurance - you have it in case of an accident, right? You pay all year, for the just in case occurance. It's supposed to be the same with health insurance - you pay every month so when you get sick it's there. But what do they do? Find a reason to cancel you so they don't have to cover your illness. So why do we even have it? If you have it thru your employer, they can't cancel you when you get sick, but if you are sick enough and can't work, you lose it anyway.

Catch-22 right?

It seems like the health insurance business is just a big fraud. I'm tempted to take the money I pay for my premiums and put them in a health savings account, and use it for medical expenses. My medical expenses have never equalled the premiums I pay in a year. Sounds like fraud doesn't it?

capsule failure- houston we have a problem....

OK, so my capsule test failed because the damn thing never left my stomach, even after 8 hours! wtf. That's why I have to have it placed now, with an endoscopy. Oh craptacular.

And of course my insurance company doesn't want this - oh big surprise. Do they ever want to pay for anything?

So, now I wait, with no meds for anything since they will interfere with the results. I wait for some pencil-pusher to decide if this is necessary.......while I suffer.

What do I say to insurance pencil-pushers? Karma will bite u in the ass some day. And they know it.

Brave Crohners

Well, I have kept searching and have found many more blogs by crohn-sufferrers and UC sufferrers. I've listed them here on the right of my blog. Most are women, and young too, and brave in my opinion. I'm still searching, and as I find more I will list them, so others searching can read these amazing stories.

I'm not sure I could face the world the way some of these gals do, with an ileostomy or colostomy bag. That scares me, actually. I'm trying everything I can to not have that happen.

Kudos to them.

More tests???

So, recently I had a capsule test...that fun one where u swallow a big capsule and wear a very heavy belt and monitor. The capsule takes pictures as it goes thru your digestive tract and transmits them to the monitor. Takes 8 hours.

I got a call a few days later and the girl told me it was fine. But the Dr she mentioned I didn't recognize. So, OK. I get a call today and the test failed. The capsule didn't go where they wanted it to. How does that happen? My crohn's is at theend of my small intestine - did it not go thru? is it still in there? Or did it take longer than 8 hours to get there?

And was the first call to the wrong patient? wtf?

Now I have to have it again - but this time my doc is going to go in and place it where she wants. Endoscopically. wonderful. another one.

So, someone has to drive me, cause I will have to be knocked out. Shit.

I mean , I'm not doing too bad. My biggest problemis I don't absorb food or vitamins, so I have to take liquid vitamins and B-12 shots. If I keep my levels up I feel so-so. Fatigue is a problem and so is joint pain. I eat very little since it hurts to eat too much. I'm trying to find liquid food or nutrition. That would help. And I am trying the SCD diet. Works well. Alot less pain. And I found that over-chewing my food helps immensely. Although it takes getting used to.

I still have diarrhea - every morning for the last 20 months. But not all day long. I'm lucky. But I know my body works well on a routine - get up at the same time, and it will react the same every day.

Every now and then I take prednisone for a week or so for the joint pain and the rashes, and it stops for anywhere from 2 to 6 months. whew.

And I am one of those with seasonal trigger - always starts early spring, like in March. so, now that I know, I can get ahead of it - I hope.

Fart humor

Some cat-fart humor to follow the previous post.........

Poop and farts

You know that's what crohn's and UC is about - that's why no one talks about it, and why no one knows much about it. No one wants to talk about it - so there's not much awareness. Why? It's involves pooping and alot of farting. And running to the bathroom.

Especially for women - we are viewed as delicate - we don't fart. Right? So how do we talk about this, how do we excuse ourselves so we can fart in private? Beats me, I gave up - I just fart when I have to. Too bad. And I look delicate, slim, tiny. But boy can I fart. ask my husband.

Maybe when our uptight society can finally talk about bodily functions, diseases like this won't be so 'embarrassing'. Beause that's what it comes down to - it's embarrassing. It's killing us, but we're embarrassed.

I don't see commercials for Crohn's, but I see plenty for viagra and other 'erectile dysfunction' drugs. We can talk about penis dysfunction, but not bowel dysfunction.

Why can't we talk about poop? It's normal, we all do it. Everyone.

Not so mild?

I haven't posted since I started, because I got hit with a 'flare'. I'm still new to all the terminology of this stuff - but not the symptoms. I had a bad bout of mid-abdominal pain. It's been a long time since the pain was that crippling.

Ah well, maybe my thinking I have a 'mild' case isn't so correct.

Even though I have had the common symptoms - diarrhea, weight loss, occasional abdominal pain since I was a kid, and then the others - joint pain, rashes, vitamin deficiencies, malnutrition as I got older - I was still surprised when the Dr. told me it was Crohn's. I don't know why. I have had 100's of tests for the last 15 years, and nothing shows up. Not till recently when my vitamin levels were in the toilet. I had a zero level of vitamin C, among other deficiencies.

I got so used to hearing, "We can't find anything", yet I was obviously sick, that it was a shock when a test showed something.

I have 2 friends with Crohn's, so I am familiar with the symptoms, and even though I seemed a mirror to them, I guess I just wasn't ready to hear I had it too.

Now my problem is eating - it hurts when I eat. Especially if I eat anything bigger than a portion the size of a hot dog. I can't even eat a sandwich or an average sized salad. Everything has to be in tiny amounts, or I am done for with pain and belly swelling.

I haven't figured out yet what aggravates me worse - except for oranges, crunchy chips and nuts. Anything too hard or crunchy is no good, since most of my food passes out undigested, that will hurt more. Even tablet vitamins pass out whole - so I take liquid vitamins and use B-12 shots.

I'm trying to figure out how to eat healthy when I am usually too fatigued to cook let alone go to the grocery store. If I could find liquid nutrition without dairy or cornsyrup in it, I'd drink that for a few months and let my guts rest.

Oh, and I love to add pics of lolcats to my blogs etc...

Crohn's sucks

Yes it certainly does. But worse sometimes, is being sick for years, knowing something is very wrong, but not knowing what it is.
That was me. I knew, my Drs knew, we all knew. But what was it?

In my twenties it was vague, came & went. Abdominal pain, fatigue, and joint pain.

Then in the 90's when I was in my 30's, the nite sweats started, and more gut pain. And now it's bad.
When i finally got my diagnoses, I looked for crohns blogs, and many were no longer updated, years old. Others were more on UC, which is similar. But mine is not in the colon, which is why it was hard to find - it is above the ileum. Real hard to see - until I had a CT Enterography. there it was.

So I'm writing, so if others are looking, we can connect - share our crap. ;-)