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laurenhope91 posted:
Hi, my name is Lauren and I am 19 years old. For the past six years I have been having abdominal pain that would come and go. I went to see an Internist thinking i had a hernia, but that came back negative. Then i went to the Gynecologist thinking it could be a cyst, and of course they found one. The Dr. told me that it didn't have to be removed that it would go away on it's own. The pain really started to affect me in my first semester of college in the fall 2009. I would wake up every morning vomiting and always having to go to the bathroom. Now mind you, i have anxiety and depression and school was an hour away so i did get homesick. As for my second semester at school, I came back home and went to a school that i can commute to in the spring of 2010. I started my classes and about one week in i had to withdraw because the stomach pain was getting worse and i got a very bad flare up with constipation/diarrhea, vomiting and a low grade fever. The flare ups that i get are very debilitating i was in and out of the emergency room getting tons of CT Scans (I have had about seven in the last year) but they never found anything to be wrong except slight inflammation. however my blood work showed an increased white count and a high SED rate. The pain meds i got in the er seemed to help a lot but as soon as i was off of them the pain got intense. I was told then to see a GI DR. The Dr. ordered whats called a Meckels scan to rule out a Meckels Diverticulum. that test surprisingly came back positive. So now it was time to see a surgeon. I saw four different surgeons to help me get this problem resolved and they all said the same thing, that i needed a small bowel resection. i finally found the right surgeon and on February 9 2011 i had my surgery. they did a thorough search of my small bowel and unfortunately for me they didn't find a Meckels, but the scan showed it and all the Drs. saw it. I was in the hospital for recovery from them opening me up. I was able to eat a low fat diet on the second day and was doing fine. I was sore for a very long time and while re-cooperating would get the flare ups that caused me to have the surgery in the first place. A week after the surgery i got a flare up and it was the most excruciating pain i have ever experienced and to top it of had a fever and was vomiting. The next day i was told by my dr. to go to the ER to make sure it had nothing to do with the surgery i had. so of course another CT scan was done but found nothing to be wrong except, again, unexplained inflammation. they told me to see my GI Dr, and he put me on antispasmodics and said that it could be IBS. i found no relief, was still having the flare ups with everything that came along with them, and was more emotional than usual. i was told to stop them cold turkey thinking evrything would be fine but it wasn't. I had an extreme headache, blurred vision, dizziness, involuntary twitching that i had no control over and tingling throughout my whole body. My primary care dr thought it had something to do with one of the medications i was on for my anxiety/depression, and told me to see my psychiatrist and also ordered blood work. the blood work showed that my sodium was high and had very small red blood cells. The next day we went to see my psychiatrist and as soon as I sat down in his chair he took one look at me and said this sounds like a classical case of Crohn's Disease. Ironically he has a background in GI. By the next day all of the side effects stopped. but i was still having the pain. we decided to turn to the GI surgeon who saved my grandmas life when she was having GI problems and he ordered a Barium Swallow test. It was so disgusting. i got the report back from the hospital and they found nothing except the unexplained inflammation. we also got blood work back and again I had a high SED rate. I still haven't heard from the Specialist who ordered the the test but im hoping he can find what the real problem is. I feel helpless.
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sheba_q responded:
Oh man, I can't beileve the doctors you've met - why are they allowed to 'practice' medicine? Slight inflammation is not normal and should have been taken more seriously, esp with your blood work showing an increased white count and a high SED rate. IBS is a diagnosis of exclusion, meaning they can't find anything, and your tests are showing that something is going on.

At least your psychiatrist has some sense. Even before you mentioned him I was thinking Crohn's based on what you've written. Sadly it can take a long time for someone to be diagnosed but can take that long for it to get bad enough for the tests to catch it.
 
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laurenhope91 replied to sheba_q's response:
It has been so frustrating for me and my family and it is really starting to take over my life! my depression and anxiety doesn't help yet with not knowing it gets worse
 
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laurenhope91 replied to laurenhope91's response:
Even though my Dr. says IBS I still feel it is something more, because how severe everything has become. after i had my surgery the flareups came more often and were more painful. I did have a colonoscopy and endoscopy but it revealed nothing. however my dr could not get into the terminal ilium because of inflammation, stool, and the anatomy of it. how is it that there would still be stool in there if i did a major cleanse?!!?! Oh and the way he described it he felt that the anatomy was "normal" I am really mad at my GI dr because i feel he is just using IBS as an excuse because he doesnt know the real problem. I'm not eating if i do it is baby food, or drinking because i am afraid i will get another flare or pain. even though there is nothing wrong with my stomach it is too much for me to put food in it. idk what to do next. somedays i feel like giving up and just want to cry that im not getting the right help i need!
Lauren Hope
 
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Price50 replied to laurenhope91's response:
Lauren My name is Lisa I have had IBS sence I was 17 now 50. I know what you mean about Dr. they won't give you pain pills that you can stay on even though it helps alot. I have been to 3 pain management Dr's 1st one told me all they can give me is a Morphine pump I can't take Morphine 2nd told me it all in my head & I need to talk to a Dr 3rd wants to put a device in my back to deadin the nervers I have to see another in Dec 2011 mean while I'm in the ER all tine timr & the DR'S won't give me pain shots all the time they have tryed every thing ealse on me that they could. I now have a new GI Dr & he's doing the samething all the other DR's have done to me I'm getting no where with any of them. I have been on the internet to the male clinic & their is clinics around that dell with IBS. We have talked about sending me to one of them You might want to check it out to see if it will help you. If you fine out anything ealse please let me know because I'm looking for help to
 
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laurenhope91 replied to Price50's response:
Hi Lisa,
it seems like its been really rough for you with having IBS. I have been in and out of the hospital so many times and when they do give me the pain medicine and anti nausea medicine, because im usually nauseous when i get an "attack" but it's only temporary. what is a male clinic, sounds like a stupid question i know because it sounds like the obvious but just wondering. I will definitely let you know how the test came out and what the next step is for my treatment. because i have anxiety/depression my psychiatrist who also has a history of GI, put me on Lexapro which helps with GI problems. so far it has been working good for me. but everytime i eat i get nauseous and always have to go to the bathroom so i am barely eating. i hope you find the help that you need and if you do and can, please keep me posted. hope you feel better!
Lauren Hope
 
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clhensley7 replied to laurenhope91's response:
Hi Lauren!!! I am going through the exact same thing you are. I have the inflammation in my terminal ileum and have been sick since December this time. My DR is every bit as frustrating as your's! Every bit of research I have done points to crohns disease. My problem is that the Physician Assistant stopped all further testing after my colonoscopy and determined I had IBS based on a conversation we had about the fact that I had occasional dirreahea after eating something funky following my gall bladder removal. If they had bothered to listen-they would have also heard that this is totally different from anything I have ever felt or experienced!! She explained away the inflammation as an infection-but I was never tested for or treated for an infection! They also have never bothered to do bloodwork!? I'm not in any way a medical professional-but I myself have also had anxiety for years but I have managed mine without meds for the last 5years. But it's still in my records, and I think the Dr's are overlooking our illnesses based on the fact that we have "mental disorders" so we must be exagerating our symptoms!! I recently joined the Crohns and colitis community here on webmd and I invite you to do the same, based on your history. It really helps to see that others have gone through the same thing and understand how frustrating it is. It takes finding the right DR who is willing to listen and investigate the source of the inflammation-so far I haven't found that, but I do have hope!! I hope that I can get to a digestive health center at a University because I believe they will be willing to go the extra mile to find out what it is! I wish you the same!
 
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laurenhope91 replied to clhensley7's response:
I feel your frustration. you should definitely go to a university..they have the best DR. known to man! I'm really surprised they never did blood work. Now i'm no DR but i think it would've been the right thing to do to see how all of your other organs are functioning, your SED rate, your white and red count as well. I have been feeling the same way about thinking it is Crohn's Disease because i have all of the symptoms. Thank you for the suggestion of joining the other community because it may help me to hear if other people have had the same experience. and your absolutely right about having "mental disorders" i feel like my dr is saying IBS because of my anxiety and stress. I hope the both of us can find the right DR. and get the help we need. I wish you all the best. keep me posted!
Lauren Hope
 
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jzelazny replied to laurenhope91's response:
I can certainly understand what you are going through and iam glad i read your profile.I am having a really bad day and feeling confused,depressed .2 yrs ago i was told by my Gi that i had Corhns colitis showed me a pic of my ulcer and inflamed intestines ,he gave me a pamphlet 0n Corhns and sent me home with pantasa .sorry spelling.you can read more of my story on corhns community .it is alot similar to yours.so my last hospital visit which was last week.iam now told i don't have it,my ulcer went away and everything looks good and chalked it up to muscular.looked at me like i was crazy and sent me home with Tylenol 3 said i was constipation from ex ray.what i don't get is no biopsy was ever done and my gi does not feel the need to find out what is wrong,he seems more bothered by me ,when 2 yrs ago he told me,i was taking 18 pills a day that he gave me and that is it.i did not not dream this up ,now i have no diagnose .i am on a waiting list for another Gi.in the meantime iam still in pain and going through all this.I am on no meds what so ever but my tecta. I am so tired all i want to do is sleep,never feel empty after a bm.i am also considering gluten free,i am already can't have milk or dairy,veggies or fruit except for the occasional banana or strawberries when i am having a good day than the next day or a bit after i pay for it.i just had two cashews and i cried like a baby and was in pain for hours.I am at a lost and i feel what you are going through.
 
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laurenhope91 replied to jzelazny's response:
so i just wanted to inform everyone about the status of my illness. i got back some of my blood work results from my primary care dr, that my GI dr didnt feel the need to order. my SED was a 43!!!!! normal is 0-15. i also have the trait for thalsemin minor which states that i am most likely anemic. oh and also.....i have a high fat content in my stool because of malapsorbtion in my intestines which is abnormal. got a lot of information and did some research and all of this does lead to Crohn's disease.


thanks for listening everyone!
Lauren Hope
 
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Price50 replied to laurenhope91's response:
Hi Lauren,
The male clinic is a web site you can go to. Its all most like this one & Dr's will answer your quistions & you can get alot of info on things. Just go to www.maleclinic.com
 
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laurenhope91 replied to Price50's response:
thanks!

So my therapist has been wanting me to see a nutritionist that she works with for month now and i have just been tossing around. well because im not eating my therapist was worried about me and said i need to see her. i have been planning on finding one that fit in with our insurance but i figured just use her because they work together. it just so happened that she was working today and she had an opening for an hour consuktation. it went really well. but again because i am only eating about 150 calories a day and barely drinking she was very very concerned and is making me drink ensure and gatorade. she gave me meal ideas that sound really good but im not sure if i will be able to eat them but she wants me to and i will try!
Lauren Hope


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