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Crohn's Disease Forum » Your Story » Undiagnosed for 30 years???!!!!


02-26-2014, 07:43 PM   #1
chuckmya
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Undiagnosed for 30 years???!!!!

Hi all!! I'm an undiagnosed case of I believe CD. This has been going on for approx 30 years!! Went to to ER when I was aprox 10yo with severe abdominal pain.... Checked me out for appendicitis and let me go! I remember not being able to eat drink or having a bowel movement for about 2 weeks!! Suffered for years w/mostly constipation as a child and bouts of abdominal pain! About 10years after that I found myself in the ER again with severe abdominal pain!! ER doc diagnosed me with severe constipation/gastroenteritis. Saw my GP who placed me on pericolace and stool softeners. Went with that for a few years then bam! Had the worse abdominal pain/vomiting....work up all done etc.... Ended up in the OR with peritonitis......removed about 12 in of small bowel and 6 in of colon to untangle both from a huge ball of scar tissue!! Pathology came back with ileitis and a yersinia infection! Crohns suspected but no definate diagnosis. Three months later after that major I developed a small bowel obstruction with perforation! Again emergency surgery was performed and a temporary ileostomy was done. @ that time the surgeon who performed the surgery was quite sure that I had CD so I was referred to a gastroenterologist who said he wasn't convinced I had CD and basically told me that I didn't need to see him again! Six months later I had the ileostomy reversed. Also suffered severe joint pain.
A few years pass and if course I have chronic constipation/and a few bouts of diarrhea. And thn it happens again!!! A small bowel obstruction.... And pathology doesn't really confirm anything!!! It's inconclusive so I go about my life again hoping it doesn't happen again!! So year b4 last again I have a small bowel obstruction buy was able to get by with bowel rest and rehydration. Another year goes by...... 2013 spring again I have a bowel obstruction and this time I need surgery again!!! Ugh! This time they find 2 large square stones obstructing the small intestine and conclude that it's from debris not passing thru and calcifying. So I go on with my life once more and now I have a GI bleed passing with my stool! So, I have a consult with a surgeon and gastro and they decide to do an abdominal CT which showed nothing and a colonoscopy! Low and behold the source of bleeding is from ulcers on the terminal ileum!! So they decide to inject epi to stop the bleeding which worked but no biopsy was taken!!! I ask if this could be CD and the answer was I doubt it....they think it's caused by NSAIDs! Really????? I'm so frustrated and confused!! I'd appreciate any input anyone may have!!!
02-27-2014, 02:59 PM   #2
dreyes7373
 
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My story is somewhat different, but I have gone un/misdiagnosed for at least 10years from what we can see in my blood work.

First I would suggest (not sure where you live) but University of Chicago has a specialist regarding your issues as does Mayo Clinic and Cleveland Clinic. I would suggest a 2nd opinion since it doesn't sound like they have diagnosed you with anything or on any preventative medicine.

Good luck, I totally understand you frustration.
02-27-2014, 05:32 PM   #3
chuckmya
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Thanks dreyes7373!! Unfortunately I live in Maine so any of those centers are very far to establish any kind of relationship with!! I'm fairly close to Boston so that would work out better for me.....any good institutions that you are aware of in that are???? Thanks again very much!!
02-27-2014, 06:24 PM   #4
dreyes7373
 
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Beth Israel deaconess medical center was rated top in ur area for digestive diseases the chief of gastroenterology is Simon Robson
02-28-2014, 08:47 PM   #5
David
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Hi there and welcome to the community. I'm sorry to hear that you've been undiagnosed for so long. I can't imagine just how hard that must be.

I wish I had some good advice for you. All I can say is that we're here for you.
03-01-2014, 07:13 AM   #6
chuckmya
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Thanks David!!! I'm pushing for a referral and diagnoses!!! My GP is awesome and will send me in any direction I choose to go!! I'm so looking forward to getting a diagnoses!!! Hopefully 2014 will be the year!!!!!
03-03-2014, 07:02 PM   #7
mdd
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hi I understand! I went undiagnosed for over 12 years. I went to surgeon , he said get a life! He was primary care doctor. When to a gastro Dr. He did all test and found nothing. Then wanted to the test over again . it wasn't until my body hurt all over . And my dr. Was out of town went to another dr. Did blood work. Went to work and got a call to get to the ER fast! Here I was bleeding out . Stool was dark blood . it was 4th of July about 20 yrs. In the hospital a new gastro dr. Made the diagnose Crohn's disease . I suffered each day and my family, not knowing I understand keep cool
03-03-2014, 07:21 PM   #8
chuckmya
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Thanks for sharing mdd!! I also went to the ER for a GI bleed recently! Did a colonoscopy found the bleed which was from ulcers on the terminal ileum!! Injected the ulcers with epi to stop the bleeding BUT no biopsy was done of the ulcers!!! Ugh! When I asked if it could be crohns the response was, It's not likely! Really?? They thought it was caused by NSAIDs which I only take on occasion! I also was anemic!
03-04-2014, 06:13 AM   #9
mdd
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Glade to help in any way. When I get a colonoscopy I tell the drs. While your in their do what you need to do ! so they do.also I have a general gi dr. And a crohns dr. At UPMC in Pittsburgh. They all on the same page. If I get any test ALL my dr. Get a copy's saves time . I look up the best doctors in crohns sites .you may need to ask your dr is their a test to see? I find you have to get tough and ask ! or ask for a copy of your test records ( they are yours) and send to another dr. To look over! Just a thought. Not sure what's going on hurts. And waste of time for treatment , keep me I formed Maria!
03-04-2014, 06:57 AM   #10
chuckmya
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Thanks Maria! From now on I'm gonna b pushy! I think that is what it takes to get the results you want! I do realize that Crohns is very difficult to diagnose BUT this is ridiculous! Thanks for the advise and support.
03-04-2014, 09:23 AM   #11
mdd
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No problem! Glade to help. Oh try this I have a notebook records my sick days and when I went to the doctors and what happens. What new pills ect. Also I have my questions written down. And take to all my doctors. And they see it and I say I have a list . They say ok what's next on your list so they do not RUN out. Unless it and emergency ? I have a print out of meds,illness, doctors. Already so if I go to ER, I or if I cannot speak family hands it to them. Never leave home with out it it saves time
03-14-2014, 03:28 PM   #12
tzvia
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Chuck,
Have you had a colonoscopy?
__________________
Diagnosed with Crohn's in 2007, symptoms since 2000.
Hospitalized with bowel obstruction 8/2012
Ileocecectomy with 9" removed 10/2014


Current meds: Entocort, Questran
Past meds: Prednisone, Humira

03-15-2014, 05:58 AM   #13
chuckmya
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Yes I just had one in February of this year! It showed bleeding ulcers on the TI! BUT no biopsy was done!!! The surgeon and GI doc thought they were erosions from NSAIDs! I don't buy it! I've had bowel issues for decades! 2 perforations, that required bowel resection surgeries, multiple bowel obstructions, tons of symptoms, and recently a GI bleed which is why I had the colonoscopy! Headed for a consult in boston soon!!!!
03-15-2014, 06:23 AM   #14
tzvia
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Yes, now I realize you had written that earlier. You have certainly been through a lot. Please keep us updated about what the doctors in Boston say. Best of luck to you.
03-15-2014, 06:48 AM   #15
chuckmya
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Thanks! I will certainly keep you updated!!!:
03-18-2014, 11:15 AM   #16
Too Many Bum Steers
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Yeah I think you definitely need that consult if you want the diagnosis. I ended up on a huge list of meds because I was undiagnosed for a long time. The meds were for other things that were a consequence of the bowel disorder.


I eventually just decided what it was on my own (yes I SELF DIAGNOSED, NYAH, you can't make me stop, heheh), and looked for solutions myself. It's not like there's a cure or anything. If they had a magic bullet or a real solution besides more drugs and more surgery, I might be on board with diagnosis, etc. But atm I'm fine with the SCD diet, the Zone diet and fish oil. Just keeping inflammation down to the most minimum possible. My med list is down to 4 from more than 10 and I take no controlleds anymore.

As long as that works, I'm staying out of medical reach. I used to be mad that they didn't diagnose me, now I'm not sure... I do wish they'd said... "psst... I think you might have Crohn's, but I don't want them to operate on you, you're too young... so go on the internet and look up inflammation and help yourself..." But I guess that would've been unprofessional. It would've been very very kind and helpful though.
03-19-2014, 10:30 AM   #17
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Hi Chuckmya,
An experienced gastroenterolist should be able to diagnose your condition. My regular doctor referred me to a GI doctor in my health insurance network when a routine colonoscopy showed ulcers in my terminal ileum. The GI said it could be from NSAIDs or Crohns, and had me get a blood test to check for inflammation. The blood test along with what the GI saw in the colonoscopy indicated Crohn's. A later capsule endoscopy test confirmed it, and I am now on medication that is keeping the Crohn's at bay for now. My point is that a GI doctor will take you seriously and order whatever tests are necessary to diagnose whatever it is that you have. GPs and ER doctors often don't have the experience to diagnose and treat complicated, chronic conditions which it appears you have. And if your current GI is not helping, I'd recommend you find another. I would recommend mine, but I live out west.
Good luck to you.
05-10-2014, 02:03 PM   #18
chuckmya
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Thanks for the advise everyone! After having a consult with a GI doc @ MGH I was diagnosed with CD! Based off of operative report, pathology report and discharge summary from 1999! All state that I have CD! But because I had not requested copies of those reports I had no idea that there had been a definate diagnosis! I was lead to believe that crohns was questionable! So I'm now undergoing a few more tests to determine if I have active disease and where it is so we can determine what I may need for meds! I've already started a low FODMAP diet which has really helped with nausea and cramping and hope to continue on my journey to feeling better!!!!
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