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Lynn
Regular Member


Date Joined Jan 2003
Total Posts : 492
   Posted 8/29/2008 3:53 AM (GMT -7)   
How were told you have Crohn's Disease?
I was diagnosed after emergency surgery to release an obstruction at the age of 24 while 5 months pregnant. My Hospital appointed GI came to my bedside after the surgery and said. "You have Crohn's Disease." Of course I had no idea what that was and said as much. He said "It is a terminal illness meaning you will always have it but you won't die from it". Immediately the only word I heard was terminal and thought my God, my baby isn't going to have a momma..... My baby is now going on 25 and yes, I still have crohn's but here I am throwing out a silly question and thinking back to that terrible day and grateful that that GI guy was right.... It hasn't killed me.
Were any of you completely in the dark before getting the Big CD diagnosis?
[color=purple>Dx'd 1983 Crohn's Disease, COPD 2000, Psoriasis 2002, Fibromyalgia 2005 along with Cronic Inflammatory Disease 2005. Currently takeing Humira, Pentasa, Lomotil, Elavil, Sinemet, Skelaxin, Advair, Abuterol, Avinza, Percocet and Xanax as needed[/color]


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/29/2008 4:50 AM (GMT -7)   
Yes I had had symptoms for some years, but assumed what the doctor who checked me at 19 said was correct -- "you just have an irritable gut." Then a 32 I had a sudden and fairly copious GI bleed, pot full of blood,. etc. I assumed colon cancer and was ready to die -- and the scope showed Crohns, which was actually a relief. Been fairly well managed now for almost 30 more years.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/29/2008 4:50 AM (GMT -7)   
I had some idea about what it might be since I had done a lot of reading in different books and looked up the symptoms online, but I was thinking more along the lines of UC or Celiac Disease. Crohn's sounded like the worst case scenario, an 'it-could-not-happen-to-me' kind of thing almost I suppose. Anyway, I found out after having an endoscopy/colonoscopy in tandem, and a couple of weeks later the nurse called me and told me what it was and that was that. And here I am now :)
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/29/2008 6:20 AM (GMT -7)   
I self diagnosed at 13, because my Mom had CD and I pretty much knew what I was looking at. BUT, when I went to her doctor, he treated me like a foolish kid and told me I was lactose intolerant. So fast forward 10 years, all h*&l has broken loose, but I don't have CD, cause I've been told I don't. Plus my symptoms had presented differently at this point. BUT no one else can tell me what is wrong with me. Finally after months of being miserable, losing tons of weight and just being soooo sick, my Mom went with me to an appointment and mentions that she has CD. You could practically see the light bulb go off above the doctor's head. "that's what you have". End of story, no further testing needed, he put me on meds right away. But I had already suffered a lot of damage to my gut and was in the hospital with in a few days and ended up with 3 resections in the next 10 years. If only the first doctor had listened to the foolish little kid!
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


ddr030505
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 8/29/2008 6:44 AM (GMT -7)   
I was nineteen, had d for 4 months, my doctor took me in for a colonoscopy cause no meds worked.. She came out and was talking to me and my mom and said I thought you were faking it but, you have crohns disease, we sent out a biospy to be 100% certain but thats what it looks like.. I was young and hungry so my response was.."Can I go eat my BBQ baked potato now?".. I got a big fat NO.. Who would have known...
23 year old female Diagnosed Sept '03 still fighting for remission
longest break 9mths; meds: Asacol 6-400mg tabs aday, Iron 40mg; B-12 vit.-stopped Humira due to a CMV virus which cause liver elevation
Live Laugh Love *There are moments in your life that makes you and sets the course of who you're going to be. Sometimes there little, subtle moments. Sometimes, they're big moments you never saw coming. No one ask for their life to change, but it does. It's what you do afterwards that counts. That's when you find out who you are.*


Veronica Ballerina
Regular Member


Date Joined Nov 2007
Total Posts : 69
   Posted 8/29/2008 8:00 AM (GMT -7)   
I was 26, Dec 2007, in ER the Dr said I had HIV without any test, because I have lost 30 lbl in 2 weeks and big chronic diarrhea, he decided to do a blood work just to assure his theory I did the blood work and then he decided that it was not HIV, than he said I had TB, HEP-C, HEP-B, Leukemia yes because I had high white cells count and Erythema Nodosum, I kept saying all the time that my father had Crohn's, he did not listen to me and got really mad at me because I was meddling in his businnes. Yeah I scaped thru the back door of this ER and went to another one that has an IBD lab. That was tough!!
Veronica Nunes - 27 years - Brazil


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/29/2008 8:54 AM (GMT -7)   
I was one of the lucky (or not?) ones who was diagnosed in only 3 weeks in 1975.  As for the diagnosis being a surprise, yes it was a surprise to me as I had never heard of Crohns before.  I was grateful to know what had made me so sick for those 3 weeks though.  I was put on Pred and Azulfadine (sp?) and what I believe was a low res diet at the time and was feeling normal again in about 3 mos.  I never realized how serious of a illness this was until after my emergency resection in 2002.  (I had a 20 year remission before the surgery) That is when I really started educating myself about the disease and started taking better care of myself and paying attention to my diet. 
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


SouthPaw33
Regular Member


Date Joined Aug 2008
Total Posts : 21
   Posted 8/29/2008 11:42 AM (GMT -7)   

 

   I went through hell before i was dx'd. I was overseas in Bosnia when severe symptoms started and then brought back stateside. I went through 3 military hospitals before i was correctly dx'd with c/d.. My 1st Sergeant thought that I had a massive addiction to drugs because I couldn't eat and was nothing but skin and bones by the forth month of my untreated flare. When the GI told me what I had... I thought that i had some kind of food poison from overseas.. I had never heard of crohn's before that day.


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 8/29/2008 12:21 PM (GMT -7)   
in hindsight i had symptoms for probably a year or so. didnt go to the doc though cos they come and go and my parents are the last people to see a doctor, so it is hard to convince them to take you. i was diagnosed via anemia. did an endoscopy which turned up gastritis, but didnt account for my anemia (they were thinking an ulcer initially). went to a GI and he did a colonoscopy and with the family history of crohns (maternal grandfather) there you go. they wanted to give me a transfusion but i adamantly refused. this was back in 1993 where you heard of people getting HIV/AIDS and hep from blood transfusions. the doc reluctantly agreed, but said if i was any older he would make me. funny thing too was that it was summer and i was surfing a lot. i never got tired from surfing either. in fact the day before i did a full day - 2 long sessions. was totally fine so the anemia diagnosis came out of left field. so i took it easy for a couple of months and then tried to surf again and nearly passed out in less a half an hour. that was really weird. perhaps it all caught up with me or it was mental, now knowing i was anemic and had to over come that.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


not creative
Regular Member


Date Joined Mar 2007
Total Posts : 466
   Posted 8/29/2008 1:44 PM (GMT -7)   
I was sick for a long time- had had the Crohn’s pain since I was 10 but nothing too bad. Finally, when I was 18, I had what I thought was the plague (flu) for something like 4 months! Finally I got so dehydrated I couldn’t even keep water down, that I was sent to the ER. After a long night- most of which I cannot remember, except how funny I thought it was when the nurse asked me if I was pregnant and I said not unless it’s an immaculate conception- and a lot of tests, they told my parents I have Crohn’s. My mother then told me later after I was coherent enough to understand. We were all familiar with the disease because my great uncle (maternal) has Crohn’s.
It still didn’t stop me from being devastated.
Laurenne, 24 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002
On Humira, Strattera, Zoloft, Lialda and Imodium

Post Edited (not creative) : 8/29/2008 2:53:10 PM (GMT-6)


yellowroseoftexas
Regular Member


Date Joined Jun 2007
Total Posts : 45
   Posted 8/30/2008 2:47 AM (GMT -7)   

I love how I was dxd with cd! 

I had been going to the dr for about 18 months complaining about my pain and d.  I had about 7 scans, 2 laperoscopies and several xrays before they washed their hands of me thinking it was all in my head!

A few months later I started a new job, with a fellow barber.  After 5 mins chatting, she told me I had CD!

Sure enough!

gotta love it.

yrot


The Main Thing is to keep the Main Thing the Main Thing

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