IBS? Crohns? Colitis? no doctor can figure it out
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charlespasquale posted:
In 2007 I ended up going into the ER after eating at a fast food restaurant. I was running 103 fevers, vomiting and having bloody stools and loose bowels. I was admitted to the hospital because they thought I had a parasitic infection, 3 days in, they advised me I had infectious colitis and it would clear up on its on. I was released.

My bowels remained loose, no fevers, but the stomach pains got worse and worse on the left side of my stomach. For the last 3 and a half years I have been going from specialist to specialist, everyone has a different opinion and no conclusive evidence. Now I am facing severe constipation, swelling, bloating, pain while eating and digesting. Known facts below:

Diagnosed with so far:
Acid Reflux, Gastritis, Hemorrhoids (one gi dr disagrees, 2 sep colonoscopies done), Vitamin B12 deficiency with unknown cause, Vitamin D defeciency with unknown cause, Liver enzymes sky rocket and return to normal no known cause - believed to be to non alcoholic fatty liver disease per my reg MD but the infectious disease Dr disagrees on that theory based on the fluctuations.

Negative for all known STDs, including uncommon diseases from 3rd world countries. Pill capsule swallowing study showed nothing more than minor inflammation.

Prometheus Blood work shows I match consistency for Crohns disease but it was ruled out by the swallowing study, although in the GI drs notes it clearly states he wasnt able to see the small intestines. I am in a lot of pain, and I struggle daily at work with using the restroom. I double over in pain while driving, at work, at home, at night, I wake up with stomach pains all the time. Sometimes I wont even eat for 24 hours because the bloating gets so bad, my stomach can swell up to 4-5 inches. I have had weight gain and lose in one week up to 5 lbs and can alternate every other week.

Any suggestions? Ideas? my GI dr thinks I should go to Mayoclinic and advised that sometimes rare genetic disease may exist and causes/symptoms/ treatments may remain unknown, in the meanwhile his only theory is IBS.
Reply
 
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JavaMamma27 responded:
Have they checked for Celiac's? I too have had similar symptoms for 20 years and when we started to look for Celiac's (My Aunt has type II refractitory), we actually found Crohn's AND a gluten intolerance. When I am gluten-free the gas clears up, I am not as bloated, and my headaches are less severe. When I eat gluten, I am horribly gassy, bloating to the point my stomach is distended and VERY painful. Are you lactose intolerant?? To me, this sounds like it could be an intolerance to something in your diet. Red meat? Dairy? Gluten? Have you tried an elimination diet and slowly add foods back in?

Just an idea.

HTHT

Stephanie
 
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OyWithThePoodlesAlready replied to JavaMamma27's response:
good call javamamma

I'd get tested first, but if nothing shows up, try eliminating things. Before my crohn's was bad enough to know what was going on (still crazy pain and swelling) I eliminated gluten and I felt significantly better for several years, and when it did come back, tests were able to show what it was. Even when you do know what is going on, knowing your safe foods is invaluable.
 
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charlespasquale responded:
Thanks for the quick replies. At the office I was reading a digestive health magazine and decided to give some changes a try.

Because of the pain and bloating I stopped eating for over 24 hours, waited for the pain and bloating to subside. When I began eating again I went as lean as possible.

I have been eating lean meats like chicken and turkey ok. I have been having pains however when it comes to Sweet tea, can iced tea (bloating and severe pains within 30 mins and still feeling the effects now), Vegetables which I have been ok with.

Trouble foods so far:
Banana's, apple juice, apples, peaches, sweet tea, canned beverages, pop-tarts, cereals, wheat bread, white breads (causing discomfort but not as bad as wheat breads)
 
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JavaMamma27 replied to charlespasquale's response:
I bet you have a problem with gluten. Try gluten-free products and see how you feel

Cooked apples and bananas are the only fruit I can tolorate. But it is different for everyone.
 
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OyWithThePoodlesAlready replied to charlespasquale's response:
wow, I'm glad you've been able to identify stuff.

sounds like sugars and starches are maybe causing trouble?

If you're thinking about cutting out gluten, I'd suggest getting the blood test done first (if you haven't already) just to know either way with celiac's.

I'm a bit unclear, are vegetables ok? there is a diet out there called the specific carbohydrate diet that has you cut out starches and most sugars. My cousin did it to keep her ulcerative colitis symptoms down for several years. I think she mostly ate veggies, almond meal muffins and proteins. Its pretty restrictive and not for everyone but some people say it changed their life and if you find that sugars and starches are bothering you it might help. I don't follow it bc milk is one of my safe foods and veggies give me pain - but I have a swollen section in my small intestine that seems to be angered by fiber. My other friend (w UC) said he found reducing gluten worked but the specific carb didn't make it any better (than reducing gluten). I wish there was 1 diet that would work for everyone - but sadly that's not the case...

Some thing else to try if you haven't is a probiotic. There is one many people swear by on the crohn's/colitis board - here is one of the discussions - although I think it must come up once a week http://forums.webmd.com/3/crohns-and-colitis-exchange/forum/99/2?@guest@#2

I haven't tried them yet (I've been taking another brand)- mostly bc I'm in remission and trying to try new things very slowly and I'm still trying to add in foods.

I don't know if any of this helps - I'm certainly not a medical professional - but I can really relate to the frustration of not knowing what's going on.

hang in there, and good job with the food detective work
~Ali
 
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OyWithThePoodlesAlready replied to charlespasquale's response:
oh, and thanks to sheba_q - she gave us the heads up

http://forums.webmd.com/3/crohns-and-colitis-exchange/forum/427?@@
 
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charlespasquale replied to OyWithThePoodlesAlready's response:
I am so disappointed, I saw a 3rd GI dr, who found nothing wrong with the small bowel series. He has decided to diagnosis it as IBS and did not even want to fill out any paperwork for my employer and said if you have to use the bathroom, its between my employer and I.

Meanwhile, I even kept a food diary and handed it to him and he completely disregarded it, said uh huh. do you have anxiety, i replied no, he said what is your worst fear, i said nothing, he said what do you hope to happen after diagnosis, i said i want to know why my stomach swells 4-5 inches after i eat, i want to know why I have pain when I eat, I want to know why I have to stop eating for 24-32 hours sometimes just so the pain and swelling go down. he said oh, its IBS, and I said with IBS do you have high c reactive protein levels (inflation markers I have had for 2 years) he said no, then I said do you have vitamin B12 or Vitamin D deficiencies with IBS and he said no, and I said do you have high liver enzymes with IBS, or vertical eye imbalance disease with IBS? and he replied once again , no.

yet he cant tell me why any of those other symptoms are occurring and each blood test I get shows those results, no known cause, and each doctor says its a GI issue, to a infectious disease issue, to a muscle dr issue, no one doctor wants to work with the other and just keeps passing me along.

However, my eye doctor surprisingly said something is definitely going on because the vertical eye imbalance is related to 1 of 3 things : an unknown virus that attacks the nerves, a misdiagnosed stroke, or a neurological disorder such as MS or Parkinson's disease that is misdiagnosed or in early stages.. the eye doctor even went as far to say that he feels that whatever is going on in my stomach could be related to the eye disease i have developed because a dr somewhere missed something, however i tell my GI this, and he keeps asking me about anxiety...

I may very well have to go to the mayo clinic which i have been holding out on. if anyone else has had anyone of those symptoms i have and been through this, please i need any advise or ideas you can suggest. I really need to find out why my body is showing all these different things and I am only in my early 30s.
 
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tnmtny replied to charlespasquale's response:
go to a different GI doc...the one you are seeing is a quack....
 
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OyWithThePoodlesAlready replied to charlespasquale's response:
Sadly, that was my experience too - so much so that coming out of anesthesia I was shocked to hear an actual dx after my last colonoscopy.

If you can handle it, keep trying new drs. I got so emotionally exhausted I was crying after every apt (and I'm not a cryer at all) so I stopped going and waited way too long to go back, so as long you can, I'd keep looking. You might need to get sicker - crappy as that is - but the sooner you can get it figured out the better.

What is your CRP? is your sed up too? It is really just a flag, so it can't tell you too much but I'm just curious how high it is.

You might not also get too much food support from the Dr even w a dx, it seems like most people have to do that on their own. Best I can tell, bc everyone is different, it hasn't been shown across the board in studies so the scientific drs don't do much with it. I actually follow the IBD remission diet. (just a heads up, she's fairly anti medicine, which I am not - but its worked) When I asked my dr about it, he said "I don't understand, you seem like a logical person, you know there's no proof that this kind of thing works, right?" but he was ok with me trying it and was quite shocked when it took my CRP down and my bloating went away (I'd been in maternity pants for months).

Keep trying drs, and keep listening to your body. I know its frustrating but you're headed in the right direction
 
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charlespasquale replied to OyWithThePoodlesAlready's response:
Thanks for all the replies and support, I went back to my original GI doctor and instead of just constantly listening to what he has to say, I let him know this is my life, this is what I have to live with everyday and I did most of the talking this time even though he seemed annoyed he said something that shocked me. He told me that although he did not find any physical signs of crohn's disease, he said he believes that is what I am suffering from because my blood work is an exact match for those suffering with crohns and inflammation. He said there is no further testing he can do here, and he forwarded all my records to the mayo clinic.

The mayo clinic went over my symptoms with me and have already scheduled me for all day testing and said may last a week straight of testing.

My GI doctor was more open with me this time and it wouldnt have happened without reading and seeing the stories on here. All too common place doctors are on the side of hesitation with no physical signs showing, and are skeptical of blood results etc. This time everytime my doctor was skeptical I replied with a symptom or result in my blood work that they have found over the last four years.

At the end, he said he feels I have crohns disease and is sure enough that he is willing to start me on some of the medication, if I have been feeling this bad for this long, I will wait for the mayo clinic to do all their testing because the GI doctor said it also appears I could be suffering from a secondary auto immune disease that could be the culprit in causing my liver enzymes to stay high with the CRP.

Thanks again to everyone, and the stories on webmd. I will post back after the results of my testing coming up incase anyone else may have suffered from my symptoms.
 
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girl82 replied to charlespasquale's response:
I feel for you! I have had similar problems: major bloating, pain, blood, high crp levels, fatigue, and eye problems . . . but several doctors have implied that it is all in my head. I have been diagnosed with Crohn's, but they all suggest I have mild symptoms and shouldn't be bothered by them. A PA suggested that I be tested for MS the other day. Whoa. I hope that's not my problem. I just want to know concretely why I feel like crap. It's nice to know I'm not alone! Good luck to you on getting a firm diagnosis.
 
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dallen2968 replied to girl82's response:
I had these problems. Ended up I had a parasitic infection. Roundworms, which live in small intestestine and over time can impact small intestine and perforate walls and move to various organs causing pain and all kinds of health problems. Very hard to get a diagnosis, most doctors refuse to believe this is a problem in this country and labs here are terrible for diagnosing through stool samples. Roundworm and hookworm are common in dogs and cats and can be passed to humans.