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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Please help, 22 with no answers and its ruining my life :(


07-03-2016, 11:04 AM   #1
CalR94
 
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Please help, 22 with no answers and its ruining my life :(

Hi!
My name is Callie and I am a 22 y/o student in Atlanta. I've only been seeing a gastroenterologist since December 2015. I was first seen then for nausea, vomiting, diarrhea, regular fever, and stomach pain. I had previously been prescribed Zofran and Phenergan for persistant nausea, beginning in October 2015. I was controlling the diarrhea at home with Imodium. I've had GERD since my early teens and have treated that sporadically with Prilosec. When I saw the gastroenterologist for the first time in December, she put me on Aciphex because my mother has Barrett's Esophagus and my reflux involves frequent regurgitation. So I began the Aciphex, which was briefly switched to Ranitidine to help preserve bone health, but that was ineffective. Went right back to Aciphex, but it has never really controlled my symptoms. Starting about two months ago in April I started having really bad post-nasal drip and it's creating a weird feeling of not being able to swallow completely and not being able to clear my throat. So that's my history with esophageal symptoms..but my reflux issues are a joke compared to the stomach pain and diarrhea that I have been having since October. I have on average 4 or 5 loose BMs per day (almost exclusively in the mornings) with a scary looking amount of mucus.

When I saw the doctor in December, she suspected IBD right off the bat given my age and symptoms and went ahead and ordered a colonoscopy & upper endoscopy. She ordered some blood work as well. Blood work came back showing low ferritin, low RDW, low iron saturation, low-normal B12, vitamin D deficiency. Everything else came back normal. Doc prescribed 2 months of Drisdol and 3 months of SlowFe Iron supplement. Had the colonoscopy with biopsies January 7th. Results were "non-specific inflammation" and no Celiacs disease. She said we would reassess after finishing the Drisdol and iron supplements. I finished them and went back for retesting last month and I was still anemic and my vitamin D only rose from 14 to 19 ng/ml - still deficient. I didn't miss a single dose of either supplement. I also had a CT Enterography in January with contrast which showed evidence of inflammation and "minimal thickening of the small bowel wall- jejunal loops" but on the report it said that it could possibly be just physiological. I'm sorry if any of this info is a little general- my doctor is supposedly a genius but she has absolutely no bedside manner and a horrible office staff, so getting a clear interpretation of my lab and imaging results has been almost impossible.

So when I went to see her three weeks ago after my blood work came back, she told me to do another round of Drisdol and SlowFe. She ordered the Prometheus IBD test, stool test, and amylase/lipase. They have the results of my Prometheus test but all her assistant told me was that it was "negative", and she didn't know enough to tell me anything else. The amylase and lipase were normal, so no pancreatic issues I'm guessing. The stool test showed an abnormal fecal calprotectin value of 145. The fat absorption results were normal. The doctor's assistant called me and said that my stool test showed that I have "inflammation in my small bowel" and that the doctor had ordered a capsule endoscopy and also called me in a prescription for Uceris. They pre-approved me for the Pill Cam and I'm having the procedure July 5th. FYI I don't know of anyone in my family ever having had Crohns, but my grandmother died at 62 from scleroderma, which is an autoimmune disease. Ironically, my mother actually has hemochromatosis (too much iron), so I definitely don't get the persistent anemia from her. I tried cutting out dairy and similar basic diet changes but nothing has changed my symptoms.

If anyone has any advice they can give me as far as their own experiences with the diagnostic process, or how to get a better understanding, I would really appreciate it. The doc told me I'm going to have to have IV iron infusions if we can't get the anemia under control, and she just gave me the Uceris and her lack of communication has me worried that she'll just start treating me for IBD without ever giving me a diagnosis. I tired of being confused and sick

Thank you in advance!
Callie

Last edited by CalR94; 07-03-2016 at 01:51 PM.
07-03-2016, 11:23 AM   #2
lenny
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I'm sorry you're going through all of this at such a young age. My daughter was diagnosed with Crohn's at 24, took steroids to get into remission and then began the specific carbohydrate diet to stay in remission and it worked! She is very lucky and has stayed in remission for going on 11 years now, without meds. You might want to give the diet a try, while you are waiting for a diagnosis? I hope you feel better soon!
07-03-2016, 12:05 PM   #3
Trysha
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Have you considered getting a second opinion?
You might do better going to the Mayo clinic....
Sorry you are having such problems but a clear line of communication is an essential component of treating the whole person,and it seems that you are not experiencing this
There seems to be no shortage of testing for you though.
You should feel comfortable with your medical team and if not..I am afraid I would be looking for other GI specialists.
Feel better soon
Trysha
07-03-2016, 12:13 PM   #4
ronroush7
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Welcome. I am sorry for all you are going through. One of the the things I question is how they can look at those loops and the thickening of the wall and say it is psychological? I am no doctor but are you taking b12? I am sorry your doctor doesn't have better bedside manners. Please keep us updated on how you are doing.
07-03-2016, 01:47 PM   #5
CalR94
 
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Welcome. I am sorry for all you are going through. One of the the things I question is how they can look at those loops and the thickening of the wall and say it is psychological? I am no doctor but are you taking b12? I am sorry your doctor doesn't have better bedside manners. Please keep us updated on how you are doing.
I'm sorry I think you maybe misunderstood me, it is possibly "physio-logical" , not psycho-logical. Possibly physiological meaning that it could possibly be thickening that is normal for my body because it isn't far from the normal range and doesn't necessarily indicate the presence of disease, but it could also be abnormal because the scan was inconclusive because they couldn't positively say one way or the other.

Thanks for all the help so far!
07-03-2016, 01:56 PM   #6
ronroush7
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Sorry. I hope you get some answers from the doctor soon.

07-04-2016, 05:48 PM   #7
JamesMorris01
 
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I'm sorry to hear about that. I think I was 13 when I got diagnosed and that was after 2 years of figuring out what was actually going on so I missed out on 2 years of my teen life. For me the diagnostic process was a pain in the ass. You'll get there eventually even though it may seem you won't. Just hang in there! You can also get second opinions from doctors and see what they say?
Hope you find out the answers you need.
08-11-2016, 04:32 PM   #8
Eternal_Howl
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Sorry you're dealing with this, and at an age where you should be able to enjoy life, not worry about health issues. I can't speak for everything you mentioned, but my Vitamin B12 levels were really low because of absorption issues, I did obtain some Methylcobalamin (B12 -the good stuff, not the stuff they put in energy drinks) in oral spray form. Anyway, after a week or so of doing about 3-4 squirts a day, my B12 levels were back up in the normal range. It saved me a lot of money instead of getting shots at the doctor's office. My brother has Hep C and liver issues and our mother got him some of the same stuff I had and his energy levels have improved too. I know you were talking about iron levels, but you also had mentioned B12. Healthy people typically get enough, but those of us who are having gastric and liver issues don't absorb it well and it affects everything. If you're already taking a sublingual or spray version, or injections, please disregard.

I too was told I had inflammation but they didn't really give me the full story. Can you get a copy of the pathology report from your regular doctor, as opposed to the specialist? Or do you already have it? The reason I ask this is because of my recent experience at my new pcp/gp and he noticed something in the pathology report from a scope that was done 2 years ago (I didn't get a copy of it) and that shed some light on some things that I was previously uninformed about. It's sad when the general practitioner is more insightful and helpful than the specialist. But that's what's I have recently found in my ongoing quest to know why I keep getting sick (different symptoms).

Has anyone checked on your liver yet? I would think they have, but...just got to ask anyway.
08-11-2016, 05:12 PM   #9
ronroush7
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Sorry you're dealing with this, and at an age where you should be able to enjoy life, not worry about health issues. I can't speak for everything you mentioned, but my Vitamin B12 levels were really low because of absorption issues, I did obtain some Methylcobalamin (B12 -the good stuff, not the stuff they put in energy drinks) in oral spray form. Anyway, after a week or so of doing about 3-4 squirts a day, my B12 levels were back up in the normal range. It saved me a lot of money instead of getting shots at the doctor's office. My brother has Hep C and liver issues and our mother got him some of the same stuff I had and his energy levels have improved too. I know you were talking about iron levels, but you also had mentioned B12. Healthy people typically get enough, but those of us who are having gastric and liver issues don't absorb it well and it affects everything. If you're already taking a sublingual or spray version, or injections, please disregard.

I too was told I had inflammation but they didn't really give me the full story. Can you get a copy of the pathology report from your regular doctor, as opposed to the specialist? Or do you already have it? The reason I ask this is because of my recent experience at my new pcp/gp and he noticed something in the pathology report from a scope that was done 2 years ago (I didn't get a copy of it) and that shed some light on some things that I was previously uninformed about. It's sad when the general practitioner is more insightful and helpful than the specialist. But that's what's I have recently found in my ongoing quest to know why I keep getting sick (different symptoms).

Has anyone checked on your liver yet? I would think they have, but...just got to ask anyway.
Where did you obtain this stuff you said helped with your b12,?

08-11-2016, 05:21 PM   #10
Eternal_Howl
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Akins health food store. Natural Grocers also stocks it and Amazon sell it - I'm sure others do too. I'm not brand finicky, but it's just one that I know of. If it's not against the rules, I'll post the product name. Please confirm and then I'll edit this post and add that info. I have a bottle of it, I can take a photo if you want. I don't need it like I did before my bowel obstructed, but occasionally I'll have a booster spray since I work a strenuous job and sweat a lot during the awful summers here in the midwest.
08-16-2016, 06:06 AM   #11
StarlyteLass
 
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Sometimes I wonder with Dr's and bowels whether they actually know what they are doing 🤔 I say this as someone whose spent the last 10 years trying to figure out what the heck is wrong with me with a multitude of diagnosis from different specialists, so fingers crossed your not in for the long haul as it really sucks missing out on your young years (I say that as 23 year old lol- already sounding like I'm 90!)
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