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Endiku 07-02-2013 09:17 PM

Crohns Disease and strange symptoms of...what?
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 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.

CLaPorte432 07-02-2013 09:21 PM

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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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Endiku 07-02-2013 09:26 PM

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.

Lockwood 07-02-2013 10:42 PM

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!

Wallaby 07-02-2013 10:47 PM

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 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:

tinyliny 07-02-2013 11:49 PM

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.

Delfina 07-03-2013 12:31 AM

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.

Darrin 07-03-2013 01:31 AM

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.

Missy May 07-03-2013 01:57 AM

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.

Tracer 07-03-2013 05:21 AM

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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