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Crohn's Disease Forum » Your Story » My story. Undiagnosed currently


04-25-2014, 01:52 PM   #1
Stevi (:
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Hey all! My name is Stevi I am 20 years old, happily married, and living in California with my husband and my two kitties I have a job at the local laundromat here but its currently waiting for me to get better..on temporary disability. I have been posting on the site for about a month now so some of you may know whats going on, I never got around to telling the full story so here goes! Since I was five I dealt with heartburn and figured out around age 12 that I have lactose intolerance so Ive always had stomach difficulties, and I think I let a lot of things go over my head.
For like 5 years now I've remembered no appetite, weight battles(losing it), back pain, eating taking huge tolls(feels like thanksgiving after every meal) on me and often upsetting my stomach, I also threw up stomach acid(clear,yellow,and foam)every morning for a year, that stopped a little over a year ago(no baby). I self treated it and didn't go to the doctors(silly me). So I really started piecing things together when I realized I had constant diarrhea for like 3 weeks( january 2014), at times I would use over a roll of toilet paper a day..So I changed my diet to lactose, gluten, caffiene, and grease free. Stuck to minimally processed and organic products mostly... Did a lot of shakes because I could barely eat and I had really undigested chunks of food in my stool. I when I had no progress for like three weeks I went to the doctors.
I started missing work a lot in February..in January my boss went on vacation and I had to work or close due to a small amount staff but kept on trying anyways... I slept almost all my days off and started even falling asleep at work, my stomach almost was always hurting and I was dropping pounds. I started this journey at 110-115 pounds and I went down to 95 pounds. In March I gave into my body and got on temp disability but it took til the end of march to get it. So...not working and I used to work like 5/7 days. So when I went to the doctors he referred me to a g.i specialist..but my husband works at a hospital and my health insurance is his...so anything that can be done at the hospital he works at gets fully covered and I switched my referral to a surgeon who specializes in the alimentary tract. I got an endoscopy and flex sigmoidoscopy. the flex sigmoid came back normal and no biopsies were taken. he took biopsies of my Distal Esophagus it showed Chronic Gastroesophagitis. Took one of my Gastric antrum it showed Chronic Active Gastritis, diffuse, mild. Ad took one of my Duodenal and it showed duodenal mucosa with mild edema or hyperemia. My stomach and esophagus also showed that I had H. pylori bacteria.. On his report it said I have GERD and an completely effaced Lower esophageal sphincter. Since I was positive for this bacteria he blamed everything on it and treated me with antibiotics, ppi inhibitors and bismuth. I came back still having all my symptoms. When I came back he took me off all meds said that it was probably the harsh antibiotics and told me to come back in a week and tell him how I feel...didnt feel any better...Went to the appointment and told him so he ordered me a pill cam...That I have yet to get completely scheduled(not willingly if i had it my way Id have the results by now.) In the meantime I am still dealing with a bunch of abdominal pain I told him he gave me tramodol and it didnt work and he told me it was probably my nerves causing pain so he prescibed me ativan and that also didnt work it also made me depressed lol...at the moment the only thing i take on a regular basis is Rolaids... he has yet to try and help me with my pain again.
Currently... I am financially in the hole because I cant work and temp disability is barely cutting it for me... I had to give my months notice to my landlord and in about a month ill be in either washington or another place here in california....If I go to washington I lose my health insurance and have to restart all my doctor things over again but if I stay here I might end up living in my car...I dont know whats gonna happen I hope we find a way to make it here at least til i have a diagnosis. Im also really annoyed with my doctor. hes brief, and doesnt fully listen to me and thinks its my nerves...and am trying to get a new one. So far not working well.. they lost my referral and I didnt know for three weeks even though i called them twice a week so I had to resend that out and im still waiting...
I never got around to really explaining how I feel so here goes. On a regular basis I deal with... Abdominal pain, tail bone pain, perianal pain, Diarrhea(3-10x a day sometimes worse it wakes me up early every morning), mucous and blood in my stool, painful bowel movements and digestion, bloating, undigested food, just passing straight mucous, and if i drink carbonation a lot of gas. I get heartburn, nausea, chest pain and involuntary food upchucks...sometimes in burps...I also deal with lack of appetite, weight loss, but I manage to get back up to 102 from that 95... My other various symtoms are fatigue, dizzyness, headaches, and joint/bone/muscle pain... my wrists,hands, feet, hip, knees, neck, and lower back love to hurt. Ive been this sick for like 4 months now..with no diagnosis... I get depressed and anxious quite a bit now and I sleep a lot. So this Is where I am at.... Im really glad I found this forum because I would feel so alone in this...Thanks for all your guys contributions to this site, it's amazing. Feel free to ask me anything

Last edited by afidz; 04-25-2014 at 07:36 PM.
04-25-2014, 02:01 PM   #2
afidz
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Welcome!
I see you found the undiagnosed club, I hope you get answers soon. I can only imagine how frustrating it is to not have answers. I have not seen any of your past posts, would you mind sharing a little bit more information? Such as symptoms and tests that have been done.

There is a "LOL Cat" thread that I can't seem to find at the moment, but I will find it and share it with you, if your up for a few good laughs!
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
04-25-2014, 03:37 PM   #3
Stevi (:
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All my blood tests and stool tests come back normal... My sed rates normal, no metabolic deficiencies, no parasites, its not an std(never thought it was),my thyroid is fine, its not celiacs, my cbc with auto diff came back fine...If you have any blood tests you recommend for me please do but so far my bloods not speaking. I also had an abdominal ultrasound witch came back fine but the radiologist said it looks like i have a fatty liver and my doctor said thats bologna because skinny people dont get fatty livers.
04-25-2014, 03:57 PM   #4
Brenden
 
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I feel your pain... Literally. I'm in the same boat as you symptoms wise and with no diagnosis. I know it seems hard but try not to stress out about it because that only makes things worse. Diagnosis for some people like ourselves is a very slow process and we just have to wait it out. Hope you feel better soon.
04-25-2014, 04:03 PM   #5
Ali29
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Welcome Stevi - the pill cam gave my GI my diagnosis as the upper/lower GI tests couldn't detect the Crohn's had blunted the villi in my small intestine which couldn't be seen without the Pill Cam. You may finally get a good diagnosis as it can see many things. It wasn't painful, swallowed the pill at 9am at the GI office, carry around a pack all day (not heavy), go back to doc at 5:30. It helped my GI so much in finding my issues.

I hope you feel better!!
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Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.

Last edited by Ali29; 04-25-2014 at 04:04 PM. Reason: correction
04-25-2014, 09:05 PM   #6
Stevi (:
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Brenden I am sorry you feel so icky I an so tired of feeling like this undiagnosed. I hope you find your issue what have they done for you?
Ali29 Thanks for giving me more hope on the pill cam Im kinda excited to swallow a little camera...I hope it provides them with answers.
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