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Crohns Disease and strange symptoms of...what?

11K views 157 replies 25 participants last post by  EmilyJoy 
#1 ·
I wasn't sure where to put this... its not really rider wellness since it doesn't necessarily affect my riding, so I put it here.

I'm 17 and I have some pretty significant health problems. None are life threatening, but they are very 'quality of life' threatening. I was healthy until I started highschool, but my freshman year I literally just fell apart. I have chronic migraines that I have been MRI'ed for and they best thing they can tell me is that its stress related or genetic, I'm allergic to most migraine medications, and I have serious GI problems. Last year (February 2012) after 17 months of severe pain I was diagnosed with a very angry and very swollen gallbladder, so it was removed. I also have severe (to the point of it destroying parts of my esophagus and stomach lining) acid reflux and frequent unexplained burning in my upper abdomen, lower abdomen, and back. I am allergic to dairy, tree nuts, cinnamon, pears, and of course, I have limitations due to my lack of a gallbladder. All of my allergies occurred AFTER having my gallbladder removed, within the last year. I frequently have mouth ulcers, unexplained fevers (usually low grade) and I have a very weak immune system so I often have bronchitis and I've had pneumonia twice. I bruise and bleed easily and in the past week or two...I have been loosing ALL of my eyelashes and some of my hair. Its horrifying. Ofcourse due to all of this, I have to force myself to eat. I am extremely nauseated when I eat however, and I often throw up and always have diahhrea after eating, so I get very little nutrition. I am underweight and currently weigh 86 pounds (I am 4'11).

That being said, there is no known 'reason' for most of my problems. I am working with multiple specialists to figure out why I have so much excess bile in my stomach (they scoped me last year and my entire GI tract is yellow with bile) or why I have such bad reflux. They can't figure it out. I've been tested for diabetes, gluten allergy, liver disease, deficiencies, etc. I've had just about every test possible.

Lately however, the doctors (specifically my GI doctor) have been considering that I might have a 'sneaky' form of Crohns disease. That's why I started this thread, to see if anyone else on the forum has Crohns, and how they were diagnosed, what their symptoms were, how they manage it, what tests were runs, etc. I'm also curious to see if anyone else has had a colonoscopy done. I am having one in August as part of the diagnostic tests to see if I have crohns, and I'm worried about it. How was it for you? Painful? I've heard that the prep is the worst part...it sounds aweful.

Any ideas, thoughts, or suggestions are appreciated. I, my family, and the doctors are at loss. What bothers me most is that I'm very limited on what I can eat so I rarely get to go out with friends or anything to eat, and now I'm losing hair and eyelashes which is embarrassing...its likely due to my lack of nutrition I know, but I just CAN'T eat. My parents constantly yell at me for not eating, but it hurts and I literally have to force myself to do it. I don't know what to do.
 
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#93 ·
:-( Hopefully the doctor has a suggestion. You could also take a Benadryl or Dramamine. They both work on nausea. They'll make you tired to begin with, but that side effect goes away after a while as your body gets used to it.
 
#94 · (Edited)
Say, you don't happen to have raw honey available to you? By "raw" I mean local unfiltered course strained honey not heated above 110 degrees (I think perhaps some members on here raise bees, and would know what I am talking about?). Here is an short article that would be worth your time to read. The benefits of raw honey It also tells how it helps with allergies, ulcers, bronchitis, and asthma among others.

The raw honey would help your liver cleanse at night having a 4-1/2 hour sugar instead of the regular 2 hour sugar that your body normally uses, therefore helping your liver cleanse 2x as long as it normally would helping to flush the medicines/toxins from your body and give a boost to help you sleep at night. Something like 1 tsp before you go to bed if you are fairly healthy and around 1Tablespoon if you are sick on meds etc.

Also it has to be raw, if you get anything that isn't it will act the same as regular sugar, and it just might be a healthy way to satisfy your sweet tooth cravings without sacrificing your health. :)

My Grandpa has been raising bees since he was four, so we tend to get a lot of honey from him, but I do realize not everyone has it around for them... Anyhow just a thought that I had... You might also want to look into Teramin Clay (for people), Barbs Wellness Home Portal to Information and Products, she has been helpful with her Nutrimin clay to help several of my bovine regain their health, obviously I was dealing on the animal side of things but I do know she deals with helping people too.
 
#95 ·
Hmmm, a friend of mine brought this up one day. She's doing research on the Blood Type diet. And she mentioned that according to her blood type, she is supposed to have a sensitive digestive system and low stomach acidity which means that if her stomach gets upset a base, such as milk, will settle it down. Which she had been using milk for years to settle her stomach down.

I don't know if that helps you any but I guess it couldn't hurt to check to see if there is a certain diet that your body is supposed to be following, it also may explain other bodily reactions. It's a far stretch, I know, but I guess at this point it's worth a look.
 
#96 ·
Although, there is no scientific proof that it really works to benefit the body but, I don't know, it's an idea.
 
#97 ·
Those are all great suggestions, guys! I hadn't even thought of taking Benadryl. It does make me sort of 'blehhhh' when I take it, but if the side effects go away I can totally power through a week or two of that.

I'll have to research the raw honey. I've seen stands for it occasionally but only during certain parts of the year, so I'd have to figure out how to get a constant supply.

That's very interesting about the blood type! I think I'm an A but I guess I'll have to double check and try to find out more about that diet.

Also, my mom okayed me to try gluten free for a week, beginning next week. Yay!!!
 
#100 ·
That's when I'm used to seeing it, in the early fall. So do I just buy a bunch of jars and take a few tablespoons a day or something?
 
#101 · (Edited)
I would say min. of 1 Tbsp before bed, possibly a tsp in the morning. Just don't go too overboard as too much can make you sick (cups at a crack?).

The storing part is easy, since the raw stuff will never spoil it doesn't need much attention, but it will sugar. To prevent that take what you will use for the week/month out and put the rest in your freezer. It will get thick like taffy but no worries about the jar breaking as honey doesn't expand that much.

I can't emphasize enough you must get RAW honey, a lot of beekeepers around here will say honey processed at 140 is raw, not so, the health values of honey start fading away at 110 and are gone at 140. Question them as to how they extract it, a lot of them use a pump which requires heat. You will want course strained honey.
 
#102 ·
Endiku, I forgot whether or not you had said you were tested for GERD.

Because I'm reading about what can happen if a persons digestive functions don't work the way they are supposed to and it mentions that the symptoms of GERD don't just include heart burn. They can include hoarseness, trouble swallowing, coughing, gagging, and nausea. Which can lead to more serious symptoms and complications such as weight loss, ulceration, bleeding in your esophagus, anemia, and a higher risk of adenocarcinoma of the esophagus.

It also says that large meals and foods such as chocolate, citrus fruits, caffeinated beverages, fatty and fried foods, onions, spicy foods, garlic, and tomato based foods can increase the reflux in GERD.

And also, how is the gluten free food working for you?
 
#103 ·
Of course this book also talks about ulcers and their lesser known symptoms of nausea, vomiting, loss of appetite, and weight loss.
 
#104 ·
Yes, I've been tested for and do have GERD.

I was also checked for ulcers, and I don't have any. Thank goodness.

The gluten free diet is ok, I think I've noticed a small difference in my energy level and possibly some of the nausea, but it doesn't seem to be significant unfortunately. I'm going to continue it for just a bit longer to see if it is just taking a while for my system to clear itself, then decide from there.

Other than that we're pretty much back with the "well, if you do have something it doesn't seem like something we can fix" type thing, and my dad isn't willing for me to have any more testing and such done which means I need to wait until I have my own insurance before I can resume my investigation. I'm having a pretty bad week this week though. My hair is falling out a lot more and I've got some really painful mouth ulcers right now that are making eating VERY painful, so I'm sure that has to do with the hair loss. I had just started growing back eyelashes, but those are falling out again too. Poo. The new suspension I'm taking is helping some with the burning though so my weight is fairly stable at the moment, so that's good. I'd be able to eat more if it wasn't for the mouth pain.
 
#105 ·
I haven't posted much, if at all on here, but I've been lurking. I can't imagine your frustration Endiku.

Sometimes when I read your posts here, I think that it sounds like a poison in your system. Your last post made me think of radiation poisoning. Crazy, I know, but that what it reminds me of. Have you ever been around any heavy metals, industrial manufacturing, industrial or hospital cleaning, industrial or commercial burning and/or demolition? Demolition of old buildings at all?
 
#106 ·
I don't believe so, at least not in the past decade or so. When I was little (ages 1-6) we lived in a really cruddy area of town that had all kinds of contaminations and smog, but I don't think there was a lot of demolition. It was an old area town but it had pretty much just been left to itself; no renovations or anything.

I've had a billion different xrays and such, but as far as I know those don't really cause too much adverse side effects, and most of the xrays I've had have been BECAUSE I'm sick, not before I was.
 
#108 ·
Its always possible I guess! Pretty much anything is possible at this point. Obviously the doctors can't figure it out xD

How would I know if it was something like an outside toxin? I think I've already had just about every blood test you can imagine.
 
#110 ·
How would I know if it was something like an outside toxin? I think I've already had just about every blood test you can imagine.
A specific toxin needs to be tested for and in order to do that, there would have to be some idea of what to look for as possibilities. I suppose you could offer up the idea to the doctors so they could think about any toxins that could cause the symptoms you have.
 
#109 ·
So have you had your scopes yet? I find it hard to believe that they wouldn't see anything at all - they should at least find some inflammation or scarring.

I still think that you could have some kind of autoimmune disease - it sounds like your body is attacking itself like mad, but NorthernMama has a good point and it'd be interesting to follow it up...
 
#111 ·
Lemme say right off.....I didn't read through all the posts. So if someone else also mentioned what I'm going to say then I hope you will consider it's importance.

Endiku - where to start.....instead of writing out a novel, I'm just going to point you in the direction. Google, youtube, facebook, vimeo....Dr. Robert Morse. There is a facebook fanpage that was created by people who follow his advice. And there are many people on there who were in worse condition than you are in who are now able to live a healthy life.

I could go off on a tangent here, but it seems that your doctors have no clue as to what's going on. It's because, they are only taught to diagnose and medicate....for the most part, they don't heal people, they cover up symptoms. Been there, done that...and I got fed up with allopathic doctors so I gave up on them, and I'm in a much healthier place now because of the choices I made.
 
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#113 ·
Yes, I had the scopes last month. They saw a small amount of inflammation in my small intestines but apparently not enough to warrant a diagnosis, and then the extreme amounts of bile that have quite literally turned my entire GI tract yellow. I actually have pictures of what the scopes found if it helps, but I'm not sure whether or not I'm allowed to post them...maybe PM.

I'll also look into that doctor. I'm curious as to how he can help me through just videos though. Does he have a certain lifestyle that he promotes or something?


Weird thing though. I figured out one thing that helps with SOME of my headaches...and that's salt. It doesn't always work but I guess sometimes my electrolytes/salt are low and that is a factor in my headaches or something, because if I eat a bit of table salt (not a whole lot, maybe 1/2 a tsp) it has gotten rid of my headache within 10 minutes. Its kind of crazy o_O It doesn't help with all of the headaches and not with migraines, but its something!
 
#114 ·
I've worked a lot of years in clean rooms (12+ hours) where I have to wear clean room garb and the temperature is set at 70 degrees F. I've always got headaches and only just realized last year that the headaches were caused by dehydration (water is available but not convenient). Drinking Gatorade during my lunch break and maybe a second after work keeps the regular old normal headaches away. Sounds like you might be running into a dehydration issue yourself.
 
#115 ·
Its possible! So strange though, because I actually drink a LOT of water...way more than the rest of my family does. They drink a cup or two of water a day and sodas, milk, juices, etc., but since I can't drink any of those things I drink at least 8 full cups of water per day- and at least 7 or 8 bottles worth them I'm working outside all day. I drink Gatorade as well (4 cups of it a day right now, because that's what I mix my suspension in) so you would THINK that I wouldn't be dehydrated.

I'm always craving salt though. That's what gave me the idea of eating the salt by itself in the first place. It doesn't matter how much I drink, what I've been doing, etc., I want salt. Is there such thing as a sodium deficiency? LOL
 
#116 ·
When a person is really dehydrated it's actually a good idea for them to eat salt and drink water. Not a huge amount of salt but a little is okay. What salt does is absorb water and allows you to consume more, it also helps to allow your body to retain water better. Ultimately, you are dehydrating your body in order to hydrate it better. Don't consume too much salt otherwise you will end up dehydrating yourself to the point that you can't keep up in hydrating it and then you'll start to have serious negative side effects.

Over the summer I was doing some high altitude training in the Sierra Nevadas and we went on a hike that ended up being 6 miles more than it was meant to be. We had a lot of heat casualties (some pretty severe) and the Corpsemen would go around and give those heat casualties salt. When they were asked why they were doing that they told us what I said in the paragraph above. And isn't it interesting how a person can actually crave salt? I found out that it kind of tastes like a pixie stick when you're really dehydrated.

A lot of the time, if a person drinks a bunch of water at once it will just go through their body because their body will use what's necessary and then get rid of what was not needed (which is why people will have to use the bathroom a lot not too long afterwards). By consuming some salt, it helps your body retain more of that water. Like I said though, numerous times, don't over consume the salt, as beneficial as it can be, it can be just as detrimental to your health.
 
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#117 ·
Yeah, I have to watch how much salt I do take in because if I crave it, I'm likely to take in more than I should. That makes a LOT of sense with the water though; and explains why when I come back from working outside the first thing I want is something salty to eat.
 
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