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Crohn's Disease Forum » Your Story » Idiot doctors won't listen


04-24-2014, 09:29 AM   #1
stevennlv
 
Join Date: Apr 2014
Location: Salt Lake City, Utah
Idiot doctors won't listen

I'm very angry and frustrated. I've read a lot of the stories on here. I'm luckier than a lot folks here and for that I'm thankful. I have the love of a good wife and the support of a great company.

My symptoms now are not as bad as a lot of folks here. But only because I literally felt like I was dying two months ago, stopped doing what the idiot doctors told me to do and started treating myself. (They had me on PPIs and narcotics. PPIs made no difference and narcotics kill me. They constipate me, after 7 days w/o a BM I'm in the ER.)

I've been sick for a year now and still don't have a diagnosis. It started with vision changes this time last year, then right side chest pains 3 months later accompanied with bowel habit changes and GERD, then “food poisoning” three months after that, then gallbladder removed three months after that. Now I've been out of work for the last 3 months and the idiots at the short term disability insurance company have denied my claim b/c there's “nothing wrong” with me; even though I have a ton of medical evidence showing otherwise. I'm working with my company on ADA accommodations that basically boil down to I'll have to run to the toilet whenever necessary. I'll be returning to work soon, even though my symptoms are not yet well managed.

I've done a lot with diet (after reading here I see there is more to do), supplements, digestive enzymes, pre/probiotics and herbal antiinflammatories. I need “western” medical help as well and can't get it b/c all of the stupid doctor's can't figure out what's wrong with me and don't want to “make it worse”.

I've seen so many doctors and been in and out of the ER so many times that I've lost count.

I've been telling the doctors for the last three months that it's Crohn's. They look at me like I pooped in their lap, tell me to quit reading WebMD and go take another $2500 test.

I feel like I'm being milked like a cash cow. I wonder if I would have already had a Dx if my insurance wasn't so good?

Doctor's don't write down 1/2 of what I tell them is wrong with me and then laugh at me or look at me like I'm crazy or stupid. It's gotten so bad that my wife has started voice recording all appointments with her phone. I actually just had a GI falsify a visit report. He stated that I refused an ab exam. I have him on tape pushing on my gut for 5 minutes, repeatedly asking me if that hurts and me saying yes every time.

With my “home remedies” (that the docs laugh about or scold me for) I have improved from feeling like my whole body is shutting down and I'm literally dying to just feeling sick as a dog all the time.

But, even with that improvement the inflammation has spread to my right eye and I have episcleritis now. (I was born blind in my left eye.) I have bouts where every muscle in my body becomes inflamed and I can barely move. I'm still going to the toilet 6-8x a day, but that's better than the 19x a day that was happening before. I've lost 18% of my body weight in the last two months. It's accelerating. I'm now losing between .75 to 3 pounds a day now. On a good day I can eat ~16-24oz of food spread throughout the day in multiple snacks. A “meal” now is 4oz. Being a glutton on a good day (few and far between) a “feast” is ~8oz of food. When it gets really bad I just lose the will to eat and have to force myself to choke down a few bites here and there. I'm always nauseas. I could go on, but figure I don't need to; y'all know what I'm talking about.

But here is what is driving me completely and totally up the wall: I've been diagnosed recently (by the same GI, who I will never see again) with chronic peptic type duodenitis with erosions, *IDIOPATHIC* (arghhhhhaaaaaaaaahhhhhhh) IBS and a vitamin D deficiency. (How can he call it idiopathic when I have inflammation in my intestines and IBS doesn't cause inflammation!!!???)

So I tell this moron about my eyes. He laughs at me, tells me it's no big deal and leaves it out of his report!!! (*So three days later I go to the ophthalmologist and it's episcleritis!*)

This idiot GI prescribed medical probiotics that cost 4x what I'm spending for OTC and the “real” stuff does not contain one single that I'm not already getting. If that doesn't work he wants to let me suffer for two more months then put me on antidepressants. I'm not depressed. I'm mad as all git out!!!!

This genius also prescribed vitamin D supplements. Just one problem: I also have kidney stones and he knows it. The literature is all over the place on D and stones: Good, bad, no difference. But what everyone agrees on is that you should be monitored closely. So he says take high doses of D and come back in two months!

Occam’s Razor: The simplest explanation is usually right.

So let's see: I've been sick for a year, I've had my GB removed solely due to inflammation (no stones) (38% of people with gastroduodenal Crohn’s have their GB removed in the first 10 years and GDC is almost always initially missed Dx as peptic) , have episcleritis, have a vitamin D deficiency (68% of C patients), have kidney stones (probably due to D being out of whack for so long), have ulcers in my mouth, have arthritis like flare ups, can't eat red meat / greasy food / vegetables any more, can't hardly eat at all any more, have dropped 18% of my body weight in two months (good thing I was fat!), have chronic peptic type duodenitis with erosions, go to the toilet constantly, have no energy, always feel nauseous, have severe ab pain and have idiopathic IBS. I'm prone to autoimmune and auto-inflammatory disease. I have lichen planus, rosacea and myofascial pain syndorme. (And I'm starting to worry that there's something more deeply wrong with my immune system like Behcet's or CVID as I am also prone to recurrent sinus infections on top of everything else.) But, I don't have Crohn's and I need to pay the GI 4x as much for some Rx crap that is the same as what I'm already doing OTC for a quarter the price!

I wish I could scream loud enough to make people heads explode like in that old movie “Scanners”!

I'm going to see my primary today. This is my third primary in the last year. I had one tell me it wasn't her problem and get up and walk out of the room. I've been calm and restrained for a year. No more Mr. Nice Guy. I'm gonna break one off in my primary about knee deep today.

In three weeks I have an appointments with a specialist 800 miles away.

I know this guy is sharp. 20 years ago I jacked my back up really bad. I argued with the docs for a year. They all said I was crazy and nothing was wrong with me. He fixed me. In the interceding 20 years he has expanded his repertoire, picked up three more medical degrees (including a PhD in medicine) and now has a small specialty clinic focusing on the “difficult” cases. My primary will march to his tune or I will find yet another one.

And I'm so stressed over all of this that I'm set to go have my head shrunk for the first time tomorrow because I don't know what else to do.
04-24-2014, 08:56 PM   #2
stevennlv
 
Join Date: Apr 2014
Location: Salt Lake City, Utah
Whew, deep breath.

I'm not trying to be the new crazy / angry guy.

I just had to blow off some steam and organize my though this morning.

I laid in to my doctor this morning like I was a DI and he was a Private. (Been around the service all my life, comes out a little strong at times. But *sometimes* the bulldozer approach just works!)

I still don't have a diag, but I'm on the prednisone that I've been asking for the last three months.

I've only taken 1 and I already feel so much better.

I combined it with a little hemp cooking oil, a bile salt and an almond crunch bar.

At this point I don't even care if somebody says it's placebo b/c they don't hit that fast. So what, I still feel better.

I have so much more energy. But not like run around crazy; more like my old self a little bit.

And a big fat razzberry to the doc who got up and walked out of the room and said it wasn't her problem.

I have to give doc credit, he took it like a man. I think the end of the appointment went very well. I think we may actually be on the same page now!!!!!!!!!!

And shocks of shock: A brief look of sympathy flashed across his face. Maybe the light finally went on!

Holy cow Batman!

aaaaaaaaaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhhh hhhhh

It's so nice to be proven right.

Expecially when your just and idajit securtie gord wid a GED!

Who talked his way in to working at one of the most premier tech support compaines on the planet. I know a lllllllllllllllllllllloooooooooootttttttttt about computers. I built my own operating system and SMB class network from bare metal up. I built, from scratch an intelligent adaptive / self defending and to some extent self-healing FW/NAT/Routrer/Snort / IPTables HIDS/NIDS. It's small, cheap, powerful and built from an old netbook with a few cheap modifications. You just have to know what to buy and how to program it.

If none of that means anything to you I fix computers too.

When I do a software rebuild on PCs I do it from bare metal up and set a very highly customized OS, even when it's windows.

But be warned: When I set up a system it will be unlike any you've ever used. You'll have to learn a lot of new stuff for how to use it. But, if you handle anything secure my network / OS / Banking VM were not effected by heartbleed. I have tools built in to counter act that and can show you how to use them.

I'm willing to trade computer skills for knowledge. The more you can teach me the more computer time you can get.

I've been reading here and there's a lot to learn.

Is there a support group in my area?

I need to try different kind of juicers and their output. Is there like a store or a show that comes to town where I can see a lot of that stuff? Where's the best place in town to get whole foods at the best prices. Are there any mom and pop / off the beaten path places in town that have high quality, trustworthy essential oils at good prices.

Doc gave me everything I wanted on the ADA stuff. You could have knocked me over with a feather!

So I'll probably be going back part time. This will give me lots of time to see doctors. I'm so thrilled.

Anybody know of any top notch docs in SLC? I'm sure I'll need to see several. I know I have to get my kidneys and my ribs checked out. (Pain, but my new TENS unit finally got here!)

But I will hopefully still have some time to do some work on the side and learn lots of new stuff. I'm sure there's stuff I need to know that I don't even know I need to know

When I go to see the specialist what should I ask?

Is a nutritionist a good idea? Know any good ones in SLC?

Are there tests that should be done that I need him to check and see if they've already been done? I have 100 pages of just test results from the last year!

Any points in the right directions would be greatly appreciated.

Didn't mean to freak everybody out but that head of steam had been building up for a year.

Felt good to get it off my chest!

And if anybody likes muesli I can show you how to make a killer one. It's *really* good and makes me bind better.
04-25-2014, 03:14 PM   #3
afidz
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Welcome to the forum!
I might have missed it, have you had any IBD tests?
I am not sure about the chest pain, but the vision changes and body inflammation can definitely indicate Crohn's. Is there any blood in your bowel movements?
I think it is advisable to see a nutritionist, at least once. However keep in mind that what may be a safe food for one person can be a huge trigger food for another, so take the nutritionists advice as baseline suggestions. Also, I saw that you are eating almonds. In a flare, our intestines don't digest nuts and seeds very well and have been known to get caught in ulcers in the lining of the intestines and cause a lot of problems. You can easily enjoy something with almond butter or almond milk (or any other broken down nut products) but if you have to chew it, its probably not a good idea. Take a look at this thread http://www.crohnsforum.com/showthread.php?t=17707 its a compiled list of common trigger foods, it can give you an idea of what to be cautious about and help you form some questions for the nutritionist when you find one.
I don't doubt that the prednisone is helping already. Thats why doctors resort to it so much, its a fast way to reduce damaging inflammation. You may not be experiencing side effects yet, if you haven't already, I would do your own research on it just so you are aware of possible side effects and when to notify your doctor. The drug does amazing things, but at a cost. And keep in mind that it is dangerous to stop taking it suddenly because it interferes with your body's production of natural hormones.
YOu don't have to "trade" knowledge. I, and everyone else in this community will gladly share our experiences and knowledge. Its why we are here. We are either in the same boat or have been where you are now.
Have you had any blood work done to signify that you are deficient in Vitamin D? Maybe I missed that somewhere. I will wait to respond to that part of it until you respond back. If you have had blood work done, what were your recent levels?
OK, think I am going to leave it at that for the moment, I look forward to hearing from you!
;hug:
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
04-25-2014, 04:18 PM   #4
Brenden
 
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Welcome to forum, looks like you got some steam out. Glad to see a fellow computer nerd here as I too fix and build computers in my spare time. Mostly hardware work. However as far as operating systems go recently in the past years I've been working on Android OS for phones and its interesting to play with the new ROMS. Glad to see you have made a bit of progress with prednisone. Hope you start getting some answers soon.
04-25-2014, 04:42 PM   #5
Cat-a-Tonic
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Hi Stevennlv, welcome to the forum. I just wanted to chime in and say yes, prednisone can indeed work that fast. I went through something really similar to what you described - I was undiagnosed (still am although I have a tentative unofficial diagnosis of IBD) and I felt like nobody was taking me seriously, and at one point a doctor who was really rude and condescending to me just sorta caused me to snap, and I put my foot down and demanded to try pred. He said okay but he wanted me to try some IBS meds first. I tried the IBS meds, they didn't work, they did nothing for me. Then I tried the pred. I took the first pill and forgot about it - for about an hour. Then suddenly I noticed I had more energy, and that the music on my car stereo sounded way more awesome than usual. As the day went on, my symptoms disappeared and I felt incredible. So yes, in my experience, pred can kick in that fast - noticeable difference within an hour and symptoms gone in 24 hours. It doesn't work that fast for most people, but it is possible to work that fast. So no, I would say it's not a placebo effect, it sounds like it's doing for you what it did for me. Enjoy it!

Oh, and as for your questions about juicers - I just read a lot of threads on here and also read a lot of reviews on Amazon before deciding on what type of juicer would be the best one in my price range. If you can afford it, I've read that masticating juicers are supposedly the best type but they're also quite pricey.
04-26-2014, 12:28 AM   #6
stevennlv
 
Join Date: Apr 2014
Location: Salt Lake City, Utah
Well the trading knowledge thing is more directed at any folks in SLC. I've been here a few years but all I really do is work. I don't really know where any of the good stuff in town is; especially when it comes to eating out. I've found whole foods over across from fashion place has a lot of whole foods. But it's kind of small. And the organization of the oils and supplements drives me crazy. They have the same thing in 3 or 4 places. I'm looking for folks that like know where a really good juice making clas is around town and goes to it every tuesday or who knows what.

If there's a support group in my area it would help to get a ride some place once in a while. It's hard on my wife's work schedule to do all of the driving. I'd be willing trade computer work for rides or as services to a local support group. Or maybe help found one?

I've got enough old junk to build a really nice cluster computer with like 16 cores and 20GB RAM. They wouldn't need all that horsepower. But I could cut them off a chunk and it would give me a reason to get up off my but and build it.

I just don't think I should be takin a free ride. That's just me.

I've stopped driving for the mean time. I think I would be OK to drive. But I figure that if I get in a car wreck with a Dx'd eye disease that can cause blurred vision, even if it's not my fault I figure that my insurance company will drop me a like a hot rock, I'll get sued and lose.

I appreciate the suggestions and reading material. I'll have to look in to it this weekend.

I've been on the steroids about 32 hours or so. I'm not sympotm frees yet. But my skin is already less spltochy and "hivish" looking and my vision is not neary as blurry.

I ATE A BACON SANDWICH!!!!!!!!! With a 1/2 piece of bacon on the side!!!!!!!!!

Two days ago that would have killed me. I took a bile salt 1 hr before and then 1 with. And then I went back and snacked several times after that. And I had eaten before that too. I'm taking it slow. I don't want to make myself sick after eating so little for so long. But I've probabaly eaten more than 1.5x of my best day so far in months and I feel great and I'm hungery again.

I'm craving pancakes, bacon, steaks, going outside and tickle time with my wife. I haven't felt this good in a year!
04-26-2014, 12:44 AM   #7
afidz
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There should be a support group for your state, you can try to reply to that and see if you get an responses. If not, you can always post a thread to try and start your own.
Also, I know that CCFA has started a lot of different support groups in different communities, check their website for more information at CCFA.org. You can also check with local hospitals and see if they offer any type of support group
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