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Discussion Starter · #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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No help from me, but, wow! You POOR thing! *big hug*

what is your WBC count? High? Low? Average?

I'm assuming you have been tested for cancer/leukemia?
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Discussion Starter · #3 ·
Yes, they've checked for cancer although they will be checking again when they do my endoscopy and colonoscopy. They took a biopsy last year and found nothing strange.

My WBC is average to low. I have blood tests frequently to check them but thus far even when the count is low, it isn't alarmingly low.
 

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You mention you were tested for a gluten allergy... was it an allergy or were you tested for celiac disease? The reason I ask is that celiac disease is not an allergy and can show symptoms that want to mimic other things. Also, if a person is a celiac, they often have many accompanying problems until the celiac issue is fully dealt with.
My son is a celiac, with a lot of allergies, has other GI issues and had such severe GERD (reflux and vomiting) that we were offered the GERD surgery. He was the size of a bean pole and would blow over on a breezy day.

Once we figured out the celiac disease, he slowly got better and is almost out of only being able to wear the slim clothes and into regular sizes. (almost)
At one point he had to wear belt to keep the slim pants from falling down.

At any rate, I really hope they can figure out what is going on. It took about 7 or 8 specialists, quite a few years, lots of referrals, and a bunch of research by me before the light bulb went on for anyone.
For us, getting into a highly accredited children's hospital was helpful too... you are still young enough maybe to get in there if you haven't already.
Good luck and keep looking for those answers!
 

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How specifically did they test for a gluten allergy?
Many of the "usual" tests can be faulty. For instance, I am SERIOUSLY gluten intolerant/allergic to wheat/Celiac, as in a mere crumb of anything wheat based sends my body into days of issues....but when the doctor tested me for gluten/wheat issues, my tests came back totally normal. The fact that I'm now doing so well on a wheat/gluten free diet [and that's the only change I made] kindaaaa points to those tests being inaccurate. :lol:
And I've heard that I'm not the only one that that's happened to.

Anyway, if you haven't already, try eliminating wheat from your diet for about a week. But first make sure you eat everything wheat-y that you might want to try! I went wheat-free not expecting to have anything come of it so I didn't eat anything "special" prior to going off wheat...and now I really wish I had binged. haha


Also, :hug:
I know how hard it is to have really weird, unexplainable issues! I had been having sporadic "bathroom issues" to seemingly unrelated foods, severe daily hives, really terrible mood swings, depression, bad stomach cramps after meals, the works basically, for at least 5 years before discovering that gluten was the issue.
It can really take it out of you!! Stay strong. I know you will. :hug:

FWIW, "stunting" IS a side effect of Celiacs/gluten intolerance in growing kids. And many many medications have wheat flour in them as a binding agent.
Just a thought, do you react to Excedrin for your migraines? It doesn't have wheat and I find that it works great for me when I get a migraine [which, was apparently another side effect of my wheat-weird since I don't get them nearly as often anymore...it used to be that I was popping Excedrin of a multiple times daily basis for mirgraines].


ETA: LEAH!!! Anti-Gluten Team posting it uuuuup. :rofl:
 

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I could wish some of that "stunting" for myself, but no such luck. When I have GERD episodes, I tend to eat more frequently because, at first, it makes my stomache feel better, before it feels worse. I have had similar but much less serious experiences as you describe. most were brought on by taking too many aspirin or NSAIDS. once the over production of bile is stimulated, it seems to take weeks to get it to shut off. Weeks of taking Nexium. I really hate to take those types of drugs, but I have had to. and double dose, too.
two months ago I felt terrible, all day, every day , in the gut. Today, almost no symptoms at all.

I am sure I'd feel better gluten free, too, but am too in love with wheat based foods.

anyhow, have you tried Nexium?

the colonoscopy prep IS the hard part. the rest is easy, so don't worry too much. Have you by chance been to a naturopathic doctor? just wondering.
 

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I have both Ulcerative Colitis and Celiac disease (yeah, lucky me...).

Ulcerative Colitis is the same thing as Crohns Disease but instead of being system wide, it limits itself to the intestines usually.

I was diagnosed 17+ years ago. In the grand scheme of things, the initial diagnosis really starts things on a cycle to get better. There are many medications that really make things better. I am after all these years, allergic to all of them but a few.. currently Prednisone is all I am able to tolerate and will start Remicade infusions soon. Removal of the colon is basically the only *cure* but it's a very, very last resort option and there are many, many treatments to explore prior to that.

A colonscopy is absolutely nothing. You will be asleep for the entire thing and won't even know you had one once you wake up (well unless you wake up mid-procedure.. done that a few times! Still wasn't an ordeal, they just knocked me back out).

The prep is absolutely dreadful, I won't lie about that. HOWEVER!! Since your digestive system is wacked and everything runs right through you... it won't be so bad. The whole point of the prep is to clean you out.. since everything is already running through you, you don't need to worry about finishing the prep really. I've never, ever finished the jug o' yuck or the bazillion ounces of Miralax + Apple Juice and it's not been a problem. Only thing to keep an eye on is that you do not severely dehydrate, I always do so I get the first appt. of the day and an IV the second I arrive at the surgery center.
 

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My sister spent 30+ years going from one diagnosis to another, turns out all they were doing was chasing symptoms. All her multiple symptoms boiled down to having Scleroderma. Why do I bring this up? She also has migraines, gluten allergies and organs removed due to her problems.

I doubt you have the same thing going just wanted to point out that often symptoms mislead doctor diagnosis. My sister is the one that actually finally nailed down her root cause, a specialist just confirmed what she discovered.
 

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Anyway, if it were me or my child I would at least review and want doctors to review the genetic history. You do not so happen to be of Mediterranean descent, do you? Either way, if it were suspected to be a genetic disorder, in most cases it can be tested for...which doesn't make you feel any better physically, but at least you know what it is or is not.
Sorry you have to go through this - I hope the cause is identified and addressed soon.
 

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To the best of my memory, my sister was diagnosed with Crohns disease 9 years ago when she was 16. I don't recall how they diagnosed it, exactly, but I remember how frightened we were. She lost 15kg+ in a matter of weeks, and she was wasting away before our eyes. She caught every bug that went around, and caught them bad. She started suffering painful and unsightly abscesses on her legs, cysts and fistulas in her groin, and developed a bald patch on the side of her head due to alopecia. More recently, she has been suffering regular mouth ulcers, throat/lung infections, and even had to be hospitalized two Christmas' ago for a severe kidney infection. She went through a myriad of medications, had to self-inject every week, and now is going well with monthly infusions.

She still has fairly bad pains and suffers the typical bowel problems, which has resulted in her being put on a disability pension. She cannot eat any acidic foods, nor can she eat her favourite foods - pasta dishes with tomato sauces. Tomato sauces are a particular weak spot for her Crohns, though she can eat actual tomatoes without worry. She's been relatively healthy lately which is wonderful, though it is likely that within the next few years she will have to have 30cm of her bowel removed as it is so badly affected.

As for myself, I have many of her symptoms, minus the weight loss. On the 17th, I am undergoing a 'top and tail', so I can let you know exactly how a colonoscopy is :p I saw a new gastroenterologist last week, and he has a strong suspicion that I may have minor Crohns disease. I have been unofficially diagnosed with IBS by another gastroenterologist (my sisters' regular doctor), but this doctor disagrees. I get unbearable stomach cramps, sometimes low, sometimes high. Recently I have been getting pains similar to that of a gallbladder attack though recent ultrasounds show my gallbladder is fine. I have a sensitivity to dairy products, though I am not lactose intolerant. I have iron levels that rival those of my sister. I have cysts and fistulas much like she did.

To me, it sounds likely that you have not only Crohns, but alopecia as well, which would account for the hair loss. I feel for you, I really do - my family and I have always been 'curse' with ill health, but you take the cake. Not something you're proud of, I'm sure. It's amazing, though, how many people have Crohns disease once you start looking. It's an illness that you will have for the rest of your life, but it's definitely something that you can live with. I hope you find an answer soon.
 

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Discussion Starter · #11 ·
Thanks for all of the different ideas guys. I really appreciate it. I'll research each of the things that you mentioned, as I'm really, really ready for some relief.

Tracer, does your sister have anemia? I ask because even on iron supplements, I am always boarderline anemic which affects my energy significantly. I also have high cholesterol (genetic, I'm partially Vietnamese). I can not eat acidic fruits, drink fruit juice, or drink soda as it tears me up and HURTS. I also cannot handle much red meat without feeding sick (I eat a lot of fish and chicken) and I've gotten to the point of not being able to eat fast food or resteraunt food at all because of the cramping afterwards.

Its so strange because I sound a LOT like your sister. I didn't mention it but I am CONSTANTLY getting strep throat and throat infections (negative strep but still pain) and as I already said, I have very weak lungs and bronchioles. However, I do not have asthma unlike both my sister and my mom.

I'm actually worried that my gallbladder was not the issue, Crohns was, and now I don't have the organ which is just stressing my body even more. :/ And now I have all of these allergies. How they're related, I don't know...but they all started when I started having what I thought were gallbladder problems.

The constant sickness makes me feel aweful, and my regular doctor (who I deeply dislike, but I'm a minor and my mom likes her for whatever reason so I'm stuck with her) likes to blame me for everything. She says I always have strep because I don't wash enough, but I SWEAR I do. I wash my hands thoroughly at least 10 times a day, brush my teeth 3-4 times a day, use Listerine, shower daily, keep my room tidy, use lysole... but she makes me feel like this is also my fault. ALL of my doctors also like to blame my illnesses on stress, and while I DO handle stress poorly I've made drastic changes to help me learn to cope with it better and I see no changes. And how can ALL of this be from stress? All they tell me is 'deal with your stress. Don't be stressed. Don't do anything and it will get better' but life just doesn't work like that. I have a job, horses, a family to take care of, school (I have learning disabilities too), and other typical teenaged problems. I can't just not do anything or not be stressed. Its impossible!

MissyMay, no I am not Mediterranean. I'm unsure of what my mom is, though we think she may have some irish in her (very pale, freckles, reddish hair. Her mom and grandmother are the same way) and my dad is Vietnamese.

We do have a LOT of history of genetic problems though unfortunately, on BOTH sides so I really got a double whammy when it came to the gene pool. Both of my siblings are healthy as can be, with the exception of one having asthma. In our family history we have GERD in literally all of my dad's side of the family, lactose intolerance (I however, am not lactose intolerant. I can not drink lactose free milk either) because of the Asian side, cardiac disease, fibro myalgia, chronic migraines, osteo proses (sp?), liquid around the heart and lungs, and GI issues. So I could have anything, honestly xD its pretty awful. If we were a horse breeding operation we would be the lowest of the low backyard breeding programs. LOL. No immediate family member of mine has Crohns though, as far as I know.

Darrin- I sure hope that's not what I have :/ it looks horrific. I don't think I match most of the symptom's, but I guess its always possible.

As for Celiacs disease, I was tested twice for both Celiacs and for just an allergy and they came back negative. But like you all say, its possible that I could still be intolerant to it! The weird thing though, is wheat (and other carby things...specifically saltine crackers) is one thing that makes me feel a bit better. It coats my stomach for a short time and relieves the burning caused by so much bile, and I don't have reflux from them. I go through a box of saltines every two weeks or so because they're sort of my 'turn to' food. I could always try going off of wheat for a week though, just in case. I'm willing to try anything.

As for reflux medications, yes I've tried Nexium as well as all of the over the counter reflux/heartburn pills. None work, so I was prescribed a high dose of protonics that help if I take them religiously. I am currently taking a dose of '80' daily. 40 in the morning 40 at night. This causes me to be very dizzy though, which I hate.

For a short time I was on Carafate (sp?) which was supposed to counteract some of the damage to my stomach lining by coating it before I ate, but it was insane to try balancing that with my Protonics (the neutralize each other. I can't eat without taking protonics, but I was nauseated and burning without the Carafate) and I began throwing it up for some unknown reason every time I took it, no matter if it was liquid or pill form. So I quit.

Currently my medications are limited to the protonics, water kefir (I've found it helps in the slightest amount), and a nonsteroidal antibiotic that has the affect of changing the motility of my bile SUPPOSIVELY, but I don't think it works and it makes me dizzy too.

Wallaby, Excedrine is one migraine medication that I can handle, and I take it a LOT. I take 1-2 daily for my daily headaches because I have them no matter what, all day every day, but most severely in the morning. They think I'm addicted to it now and have rebound headaches from it, but I can't function without it (crippling headaches). It, however, is also damaging my stomach lining, so its really a vicious cycle that I've gotten into. I took myself off of NSAIDS for a month last year to see if my stomach pain went away and the burning lessened, but nothing else changed.
 

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I'm not sure about my sister being anemic persay, but it's very likely as I do remember that she was getting regular iron transfusions for a while. I myself have just come back from having very low iron levels. I also can't believe I forgot to mention her biggest problem - She can't eat anything that has fibre over 4. That limits her options with bread, and she can't even eat more than a handful of popcorn.

You doctor sounds horrible, even worse than my sisters. I would seriously sit down with your mother and say something along the lines of wanting to try another doctor to see if they have more insight into what is going wrong. Don't outright say that you want to change because the doctor she likes is terrible. With any luck you'll be able to find another doctor that she likes better. I'm very lucky that the specialist I was referred to is absolutely amazing - if I'd been sent back to my sisters' doctor, I have no doubt that he would have just waved it off and done nothing about the possibility of me having Crohns, whereas the one I did go to sat up and took a lot of interest in the fact that my sister has it.

It also doesn't have to run in your family - my second cousin is the only other person in either side of the family that has been diagnosed with Crohns. The only reason why we're so suspicious about me is that oftentimes if one sibling has it, the other does too.

It really sounds like you've been dealt a horrible hand. Quick questions on the medication front though - have you ever been put on Somac? I was put on it a few years back after waking up in the night with absolutely horrible pains, and since I've been on it I only rarely have my sleep disrupted and my pains haven't been as bad. It has the added benefit of stopping the nauseous side affects of the only pain killer that works on my period pain.

I really thing you should have a colonoscopy, no matter how awkward and unpleasant they may be. You clearly have something serious going on, and I can't believe it's taken your doctors so long to consider Crohns.
 

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Discussion Starter · #13 ·
Yeah, I don't like my doctors at all. They're just so 'ladidah' about everything that goes on with me, as if it isn't ruining my life.

No, I've never tried Somac. Is it a painkiller?
 

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What you have sounds autoimmune, to be sure. They are no fun at all. I've got celiac and endometriosis, which are both autoimmune. Crohn's is as well. The name of the disease just depends on what part of your body your immune system has decided to eat today. :( :( :( I have a friend with Crohn's, and from what I understand it's a lot like celiac, but not triggered by wheat proteins. She has trouble eating high fiber stuff at all, though. We both have chronic migraines. If you can take Benadryl, it actually can help stop a migraine. Magnesium is also helpful. Other than that, eating as clean as you can and exercising some helps to a degree. Stress also seems to play a pretty big role. I think those of us with autoimmune conditions are just much more sensitive. Doctors like to blow off our conditions, too, since they are not well understood. I'm very sorry.
 

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Discussion Starter · #15 ·
That's ones thing I don't have. If I go way overboard (like eat a bunch of triscuits or something) I feel painful and uncomfortable, but normal fiberous foods don't bother me any more than other foods do.

I took magnesium and riboflavin in high doses for my migraines for a while to see if it would help, but unfortunately it didn't and I had the side affect of yellowing skin and constipation for some reason from taking so much of them. I've also taken Imitrex as a migraine stopper, but our insurance only pays for 2 per month so I have to pick while migraine every two weeks I want to stop. It stinks. Also, in the last few times I've taken it, the migraine goes away but in its place comes severe neck pain. Its not even worth the pain.

I exercise almost excessively though, and it does help some. Lower stress levels means less migraines too BUT I still have that persistent every day, all day headache that is so reliable that its ridiculous.
 

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I get those too. I wish I knew what to tell you. For the Imitrex, I told Walmart that I have no prescription insurance (which is true) and they only charged me $40 for 16. Not too bad. However, the migraine will often come back the very next day, or return as a plain headache that I can't treat at all. If I find something magical, I'll let you know. :(
 

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Have you seen a chiropractor for your migraines? My migraines have one main trigger and a secondary lesser trigger. The main trigger is my allergies, secondary is when my neck is out. What's worse is my allergies are more likely to trigger a migraine when my neck is out because (I think) my lymph node is putting pressure right where my neck goes out.
 

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Discussion Starter · #18 ·
No, I haven't seen a chiropractor. Someone mentioned doing that a few months ago so I told my mom about it, but our insurance doesn't cover it which means it would cost us a lot. I don't think she's willing to pay for one :/
 

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Wow. Just wow. I mean, how much can one person do and deal? I have no information for your general health issues, but can input on stress and colonoscopy.

Someone posted that (s)he was under general anaesthesia for a colonoscopy. I don't know why that would be the case. It is really considered non-invasive as the examine involves an already existing orifice / pathway. No need for any anaesthetic at all, local or general. While the prep is indeed the worst, it's almost worth it just for the way your digestive system feels after it's all over. Getting all cleaned out like that made me feel great!

IMO, the stress should be a huge factor being considered and dealt with. You do have a lot on your plate. If you think about it, do you ever really, truly, just do NOTHING? Not sleep, not read, not watch TV, but NOTHING? Sit in the yard and count the blades of grass kind of thing. Those times when you are physically incapable of doing anything don't count. You expend huge amounts of energy in your life, my girl: academics, horses, health, exercise, who knows what else, plus the pain and other symptoms. It's not just physical energy, it's emotional and psychological as well. It's quite possibly just too much.

So, while you continue your quest, consider that any treatment's effectiveness is/will be in direct ratio to the energy available to work with the treatment.

Dealing with a doctor(s) that blame you (or that you interpret as blame) is definitely a huge problem as well. I find it odd that with all the support your mother has given you, and all the maturity that you have, that the choice of doctor is not more readily up for discussion.

Sending you more hugs.
 
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