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06-27-2011, 05:59 AM   #1
phlips
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No diagnosis yet!

hello,im 36 years old.new to fourums.i joind to ingest information.i have had a bad problem since a wreck in 2001.things have been getting sugnifigantly worse since then.i am confused and desperate for an answer.i have most of the symptoms of crohn's.some ive had since i can remember.it seems like the local doctors are going to finnish me off.i have a pill cam test this week.hope its the final answer.since 2001 ive been told i have bad hemeroids.which i do now.every so often i bleed realy bad till the point of nrrding transfusions.my guts swell up i have no energy no apitite.sometimes lasts for weeks.then either goes away for a while,or almost goes away.when it happens now i cant push myself to work.untill this year ive been shuffled to different doctors.which give me rectal rockets and tell me every thing will be better.but its not.all they give me for pain is antidepressants.almost overdosed me on those.they gave me three different kinds for insomnia,depression,andm pain.just this year i was diagnosed with h-pylori.was treated.it went away.felt like superman for two months.and then like a familiar kick to the soul sdymptoms came back.still no h-pylori.now ive had two ct scans.looked good.had upper and lower gi.good except for slight irritation,belived to be from hj-pylori.then had barium smaal bowl follow.looked ok.blood test came back extreamly aneemic.when i have problems i bleed like crazy,guts swell.feels lioke being stabbed with an ice pic.dont realy have diarrhea.just gets real soft at bad time.my hemmeroids only bother me when my guts swell.cant afford to keep this up.my family suffers,i use all my energy up trying to work.my job is great.they understand.cnc machineing is not hard work.but i cant handle it when i have problems.any suggestions for figuring this out would be appreciated.
06-27-2011, 06:23 AM   #2
dannysmom
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My son is in the same 'undiagnosed' boat as you ... and fatigue is his worst symptom. Have you had any blood tests for the IBD antibodies? It would just be another piece of the puzzle ... my son's Prometheus IBD panel came back positive for Crohn's and they still do not dx him.
Good luck!
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Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
06-27-2011, 06:47 AM   #3
phlips
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i not sure what blood tests other than cbc.when they tested cbc i ended up getting two units of blood friday.they did mention something about my system not taking in iron.i think they will call me today for another cbc today,and schedual a pill cam.im worried this new np is smart except they have put me on two ssri antidepressants and tramodol.my pharmasist was trippin on that.any thing i should ask for.i fear asking it seems like they wont consider the last doctors findings and if i mention any thing its like a joke.i live in a small area and st.lukes has taken over.mostly they make me feel like a druggie.they tell me to let them know when i have a problem,then i get scrutinized.i broke my left hip in a car wreck in 2001.have six screws.when things get swelled up i bleed and it hurts from my guts to the bottom of my left foot.am told thats impossible.i wished they could sample my day for at leat 2 mins.once i was told to quite being a sissy by a surgeon that was trying to kill the bleeding with rubber bands 10-15 at atime every week.for 6 months untillo he made me want to shuve some tools in his body.didnt go to dr for 3 years untill it was alot worse.then my new gp(pa) sent me to a surgeon that did a stapleling.didnt work,and found out people died from this procedure weeks after he fixed them.now the np in the gi office had a doctor on call talk to me.lokked at my blood tests.siad "doode youve got a problem".
come and get some blood.then the next day im wanted to talk to him because he seemed like he new me for ever.but that next day he was saying who are you? then after a few minutes he says oh yea.sorry to go on .
06-27-2011, 06:59 AM   #4
phlips
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i not sure what blood tests other than cbc.when they tested cbc i ended up getting two units of blood friday.they did mention something about my system not taking in iron.i think they will call me today for another cbc today,and schedual a pill cam.im worried this new np is smart except they have put me on two ssri antidepressants and tramodol.my pharmasist was trippin on that.any thing i should ask for.i fear asking it seems like they wont consider the last doctors findings and if i mention any thing its like a joke.i live in a small area and st.lukes has taken over.mostly they make me feel like a druggie.they tell me to let them know when i have a problem,then i get scrutinized.i broke my left hip in a car wreck in 2001.have six screws.when things get swelled up i bleed and it hurts from my guts to the bottom of my left foot.am told thats impossible.i wished they could sample my day for at leat 2 mins.once i was told to quite being a sissy by a surgeon that was trying to kill the bleeding with rubber bands 10-15 at atime every week.for 6 months untillo he made me want to shuve some tools in his body.didnt go to dr for 3 years untill it was alot worse.then my new gp(pa) sent me to a surgeon that did a stapleling.didnt work,and found out people died from this procedure weeks after he fixed them.now the np in the gi office had a doctor on call talk to me.lokked at my blood tests.siad "doode youve got a problem".
come and get some blood.then the next day im wanted to talk to him because he seemed like he new me for ever.but that next day he was saying who are you? then after a few minutes he says oh yea.sorry to go on .
i know, quit wineing

Last edited by phlips; 06-27-2011 at 08:03 AM.
06-27-2011, 12:44 PM   #5
dannysmom
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Here is a link to the Prometheus website that has the IBD 7 diagnostic test:
http://www.prometheuspatients.com/Pr...iagnostics.asp
06-27-2011, 01:10 PM   #6
phlips
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sorry to vent.i usally get a call around 9:30 am.usally when this happens.i get a new doctor that has to start over.i know they have other paitants.but it seems like they only contact me with things to spend majior money on,but i think ive allready bought all the door knobs on the new hospital.
06-27-2011, 03:11 PM   #7
allieinwonder
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Hello, and welcome to the forum! I'm undiagnosed as well (there are several of us actually, with an undiagnosed thread that you are welcome to join in on). As you can see in my siggy I have gotten almost every test, all normal or so close to normal that they ignored it (b vitamin levels and inflammation was only slightly high). I was scheduled for a pill cam but they decided against it when my SBFT came back normal. I know how frustrating it can be! The only reason I keep on the crohns/IBD track is because my doc keeps saying IBS, yet my symptoms worry him that its crohns (last week I had a ulcer through my toungue..very worried GI). You just have to keep at it! You know your body!

I hope you find some answers soon!
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www.behcets.com

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06-29-2011, 09:13 PM   #8
phlips
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thanks for the tip on the blood test dannysmom,im waiting on results from the Prometheus ibd seroton 7 test.my doctor does think something unusual is going on.
07-14-2011, 11:34 AM   #9
phlips
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blood test came back inconclusive.so another apointment on the 18th.
07-14-2011, 01:10 PM   #10
xJillx
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Crohn's is so difficult to diagnose. I am sorry you have to go through this endless testing.

I hope you get firm answers soon.
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Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
07-14-2011, 03:28 PM   #11
allieinwonder
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I'm sorry your blood test didn't help! I have gone through that several times, and you have to remember that the blood tests aren't always accurate. One Crohnie I talk to on twitter told me he has had his blood tested for ten years, and the inflammation has never showed up on the blood test!
07-14-2011, 04:19 PM   #12
Cat-a-Tonic
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I read a statistic that something like 10% of crohnies have completely normal bloodwork. So don't give up hope Phlips, like the others have said, bloodwork isn't always accurate and doesn't necessarily reflect what's going on inside your body. And as far as I have heard, the Prometheus Serotonin 7 test is regarded by some doctors as being completely useless as it's fairly unreliable - it can frequently give false negatives or false positives. So please try not to be too disappointed in this setback, and I wish you lots of luck for your appointment on the 18th!
07-23-2011, 12:04 PM   #13
David
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I've moved your thread to our new Undiagnosed Club. If you'd prefer I leave it where it was, let me know and I'll put it back
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