How long did it take you to get a diagnosis?

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Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 5/8/2008 8:52 PM (GMT -6)   
This is sort of an informal poll.  Mainly for our newly diagnosed to our yet to be diagnosed.  How long did it take for you to be properly diagnosed?  I'm talking from beginning of your symptoms to the actual diagnosis.  I am also interested to hear your stories. 
 
I consider myself rather lucky because I was diagnosed rather quickly.  However, I ignored the symptoms for about 6 months or so before I got the courage up to see a doctor.  I originally saw a proctologist thinking it was hemmies but he took one peek in there and told me to see a GI pronto.  And within 2 months of that appt, I was diagnosed.
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BumTum
Regular Member


Date Joined May 2006
Total Posts : 304
   Posted 5/8/2008 9:15 PM (GMT -6)   
I had been having diarrhea off and on for about 6 months. I just thought I was having a frequent flu bug. One Saturday, I was feeling fine until about 3:00 in the afternoon. I began to run a high fever with severe aches. Then the diarrhea started. I had a dull ache in my lower right gut. I called my Dr. on Sunday afternoon and he sent me to the emergency room because he feared I was having apendicitis.

They did a cat scan and discovered that my appendix was OK but there was a definite infection in the cecum. The next day - after prepping - I had a colonoscopy which revealed severe pancolitis. So my diagnosis came very quick. I'm grateful.

BumTum
  • Pancolitis since 5/06 at age 50, IBS since childhood
  • Degenerative Disc Disease/Spinal Stenosis - L4 and L5
  • Prescribed: Asacol, Atenolol, Zoloft, Synthroid, Menest, Crestor 
  • Prescribed: Xanax & Hydrocodone as needed
  • OTC:  Probiotic 15-35, Multi Vitamin, B Complex, Turmeric, Fish Oil, Biotin
 
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/8/2008 9:23 PM (GMT -6)   
My first symptoms were in early July. By late August I was bleeding, and saw my PCP. She gave me a ten-day course of Cipro and when that didn't help, she referred me to a GI. This would have been late September, I think. He started with all the stool cultures, checking for parasites, etc. I had my first C-scope in early November and was diagnosed then. So about five months from first symptoms, about two from first seeing a doctor.

I was absolutely stunned, because I knew this DD as something that started in adolescence. I did some quick reading and found it's statistically more common in those with family members who have IBD (I don't) and Askenaz Jews (I'm not.) I was also way past adolescence or early adulthood.

Lucky me. :-(
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 5/8/2008 9:59 PM (GMT -6)   
2 months
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 5/9/2008 8:44 AM (GMT -6)   
I started having major bowel changes in March, but was able to attribute it to flying and eating different foods - lots of fresh fruit for a week. Didn't think much of it as weeks passed and I was still having issues. Then the blood came. From the time I saw a doc and mentioned it to the time I had my scopes, it was about three weeks. I was dx'd fairly quickly compared to many stories I've heard - for that I'm thankful!

Thinking back - there were occasional times from college to my dx that I'd have weird bm symptoms - but never more than once before things would go back to "normal".

I'll never take a solid poop for granted again!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
30mg pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
 
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TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 5/9/2008 8:56 AM (GMT -6)   
2 years. I had symptoms and a colonoscopy, was diagnosed with hemmies and told to eat a high fiber diet. Then, went back, because the bleeding was ridiculous (I thought I needed the hemmies caulderized), had another colonoscopy while flaring. Dx'd with UC (ulceration is only in large intestine). It could be chron's, due to skip lesions.

love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 5/9/2008 9:13 AM (GMT -6)   
My first symptoms came on suddenly in Feb 06, didn't have a family doctor because none taking new patients so on a waiting list for a couple of years. (good ol' Ontario health system). Finally got one out of luck in June 06, sent me to a GI immediately, colonoscopy Aug 06, so I guess 6 months.
 
 
Dx:  UC Proctitis 2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 
Added: tumeric and probiotics.
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 5/9/2008 9:53 AM (GMT -6)   
3 months.
The symptoms started last May but the two times I went to the doctor (PCP) that month, they said it was just a virus. The third time I went (second weekend of June I believe), they checked for diabetes and did an x-ray of my stomach. Everything came out normal. I went to the doctor again a month later; they did a blood test and found I was severely anemic. So I went to the hospital to get a blood transfusion and they asked me my other symptoms. I was assigned to a GI and he ordered a barium x-ray. Once that came out normal, they scheduled a scope (this was the end of July). I wasn't diagnosed until mid-August b/c the GI I was assigned to was on vacation for a weeks. (apparently, the other GI could do my scope but could not officially diagnose me and start me on meds)  
Female, Age 19, Dx w/ UC August 2007
Seasonal allergies
9 Asacol/day, 1000 mg Canasa (caused side effects), Proctofoam
Digestive Advantage (Crohn's & Colitis), 2 pills/day
Calcium chews
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 5/9/2008 10:30 AM (GMT -6)   
I was dx'd rather quickly also. I didn't have a regular doctor at the time, just a gyno. So, my future mil gave me the name of her Doc. I made an appt, saw him, he ordered a GI series with barium (yuck, yuck, yuck) and then he told me I have UC and put me on a high dose of pred. I then was referred to a GI by a family friend, and he was the best GI I ever had (head of Gastro at Beth Israel in Boston) he tapered the pred, put me on azulfidine and I went into remission pdq. So, I consider myself pretty lucky for getting a quick diagnosis, especially after reading some of the horror stories that others here have gone through. And that was "back in the day" (1982) You would think that 26 years later, people wouldn't be having the problems with getting dx'd accurately. It sometimes amazes me............
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 5/9/2008 10:36 AM (GMT -6)   
2 years! I was told a million times I had IBS...to cut out the ibuprofen and lower my stress level. 6 weeks after I had my son and was going 20+ times a day someone finally believed me!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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Co-Moderator UC Forum


puglover13
Regular Member


Date Joined Aug 2007
Total Posts : 25
   Posted 5/9/2008 10:42 AM (GMT -6)   
It took 3 years - I was flaring on and off for all this time.  I went to my doctor several times, who put me on various meds, saying I had IBS - take fiber, lower stress, etc.  It didn't get better, I was referred to a GI, same thing - IBS, but I kept putting off getting a colonoscopy.  I ended up in the hospital for 4 days and then had no choice but to get the colonoscopy and was then diagnosed.  I would have gotten the scope earlier if they had mentioned this disease as something I may possibly have, but it never once came up.  It was all very frustrating.

Diagnosed UC June 2007 (mis-diagnosed with IBS for 3 years)
Current meds: Asacol 9/day, iron, multivitamin.
6-MP 50mg, Cortenema, Remicade, Lexapro 10mg/day


sodbuster19
Regular Member


Date Joined Sep 2007
Total Posts : 343
   Posted 5/9/2008 10:48 AM (GMT -6)   
In Oct of 1998, a month before my wedding, I was having a lot of D. I went to my family DR, she did a manual check and thought it was hemorrhoids. In Dec of 98, I was bleeding, and my DR set me up with a GI for scope, 2 days later I was told I had left sided UC. Very fast I think, and I was soooooo glad that my DR moved on this so quick and got me in with a good GI asap.

<FONT color=#0000ff>Bad flares Guniess & hot wings

Generic Colazal, 2 2xday
Acidophilus Probotic 3 times/day


soccermom3
Regular Member


Date Joined Aug 2007
Total Posts : 38
   Posted 5/9/2008 11:08 AM (GMT -6)   
I am VERY stubborn - I hade symptoms for 2 years before I ever went to the doctor.  Finally, I got soooo sick, REALLY high fever and bleeding, my primary sent me to a GI doc very quickly - had my scope and knew what I had as soon as I woke up.  Severe pancolitis.

Diagnosed Pancolitis 5/05.
 
Hospitalized 2/08 Severe Flare
Hospitalized 3/06 Severe Flare
Remicade - every 8 weeks
Imuran - 100 mg per day
Asacol - 9 pills per day
Prilosec
Zantac


JEG
Regular Member


Date Joined Apr 2008
Total Posts : 112
   Posted 5/9/2008 11:11 AM (GMT -6)   
dx with "IBS" in summer 06, things seemed to get better on dicyclomine but in mid oct 06 things got much worse, the urgency, blood, d came on mid nov, dx dec 06 after stool samples, blood tests, and a colonoscopy.
3x3 colazol a day
1000 mg canasa bedtime
3 entocort a day
1-2 cortifoam enemas as needed
prenatal vitamin


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 5/9/2008 11:16 AM (GMT -6)   
Approx. 3 years.  I was seeing a GI who kept telling me it was IBS and stress.  Once I started bleeding, I gave up on him and went to my current GI at the Cleveland Clinic.  He had me diagnosed in 2 weeks!

Proud new mom of a beautiful baby boy!
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/9/2008 11:38 AM (GMT -6)   
Unfortunately, I just can't say for sure. I was diagnosed at age 14 because I went to the bathroom one day and the toilet bowl was filled with blood, the water was just dark red. So of course I FREAKED out, showed my mom and she ran me right to my pediatrian's office, who then referred me to a GI that I saw the very next day. I was diagnosed with ulcerative colitis (pancolitis) within a week. But I don't remember ever having symptoms before that day, though I'm sure I probably did and just ignored them because it was embarrassing. It just seems like for it to have been that bad it had to have been going on for awhile, but I just can't recall anything.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
10mg Lexapro (for depression/social anxiety)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
Not currently taking any colitis meds (between insurance plans and doctors) and mildly flaring. Looking into try all possible natural treatments for the time being.
 
 


laurar
Veteran Member


Date Joined Jan 2006
Total Posts : 730
   Posted 5/9/2008 12:13 PM (GMT -6)   
I've gone through a series of misdiagnosis, but was finally diagnosed with Ulcerative Pancolitis a few years ago. When I look back, I had an episode that I'm sure was my first flare up back in 1997 when I was 19, but it went away on its own so I didn't get medical attention. A few years later I was diagnosed with Irritable Bowel Syndrome, then after a REALLY bad flare up in 2004 I was diagnosed with Crohn's Colitis. After my most recent flare in 2006 I finally got the UC diagnosis. It's been a roller coaster, but luckily most of the meds for UC and Crohn's were the same so it really wasn't that big of an issue.
Diagnosed Ulcerative Pancolitis

Probiotics
Fish Oil
Vitamin C
Slippery Elm
TURMERIC!!!


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 5/9/2008 12:14 PM (GMT -6)   
I went straight to a GI doctor and he did a scope and told me - I can't imagine waiting for years. Although I had symbtoms before but I thought I had a tough of IBS - it didn't affect my life really. I went straight to the doctor when I saw blood because I thought I had cancer. Well, at least I don't have cancer.
Jessica 26/F On Entorcout again...
dicyclomine 10Mg before meals/bed
Citalopram 10 MG
Asacol 4pills /three times a day(from 2 pills/ three times a day)
Culturelle once daily
Tried (Entorcort EC 9ml/day and Prednisone)


my3suns
Regular Member


Date Joined Apr 2008
Total Posts : 37
   Posted 5/9/2008 12:19 PM (GMT -6)   
I had problems for about a year before I saw a GI doc. I do not experience daily diarrhea w/ my UC, I actually go the other way and suffer constipation until I flare and then incredible diarrhea. So, it was the summer of '05 and I felt pretty bad - tired, constant stomach ache, blood and mucus. I thought I had a hemmie and made an appointment with my family doctor. What an idiot she was. I went in and explained my symptoms, she said it sounded like hemorrhoids and gave me a suppository. She didn't even talk about other possibilities, nor did she check me out at all. A year went by while I dealt with all of the symtoms. Finally, I started to experience nausea when I went to the restroom. The amount of blood had increased somewhat and I became pretty nervous about what could be happening. I made an appointment with another doctor at the general practioner's office. He was very thorough and set me up with a GI doc right away.

I had a colonoscopy and was diagnosed with proctitis that day. The GI didn't diagnose it as ulcerative proctitis right away - I guess if it goes away it is another type of proctitis. He prescribed canasa, which helped initially, but after my prescription was gone and I went w/o it for a few days, the symptoms returned. When I went back 2 months later for the follow-up the symptoms had not eased up and the biopsy showed ulcerative colitis. I was OK on Canasa for about 10-12 months before it stopped working altogether. This year I had another colonoscopy, which showed that the disease has spread throughout my entire colon. Now it is just a game of trying to figure out which meds will help get it in check.

I believe I have had UC for about 5-8 years, but was undiagnosed and ignorant of what was happening to me until 2006.
my3suns
 
Diagnosed with Ulcerative Proctitis in September of 2006
Canasa
Diagnosed with Pancolitis in April 2008
My current meds are Rowasa and Lialda
Current state - Flaring


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 5/9/2008 2:38 PM (GMT -6)   

I was diagnosed rather quickly. 

Since I have a PPO, I bypassed my regular doc and went straight to GI.  It took 6 weeks for first appt.  GI said it sounded like Ulcerative Proctitis.  I went home with samples of Canasa and a prescription and was feeling better in a week.  Diagnosis was confirmed with colonoscopy/biopsy 7 weeks later.  My first symptom was blood/mucus which I kept secret about three months fearing I had cancer.  My anxiety about cancer was so high I was thrilled to find out I had UC!

I feel so bad for all the people who had to suffer for ages to get help. 


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 5/9/2008 2:53 PM (GMT -6)   
8 months from my first visit to the doctor, was having trouble 2 months before that. I had a doctor that thought he knew it all and didnt want to send me to someone else, so he kept giving me antibiotics which kept making me sicker and sicker I fineally found a surgeon that would do a colonoscopy without a referral. then after the surgeon dx me I found my own GI. then found a knew GP
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


Yorkshire Lass
New Member


Date Joined Apr 2008
Total Posts : 18
   Posted 5/9/2008 3:05 PM (GMT -6)   

Still waiting to see a gastro specialist!  Have had problems for about a year but as the pain and bleeding lasted only a few days (no D) I kept trying to forget about it.

Finally went to docs in jan this year, have been back several times and finally had blood tests 2 weeks ago which showed no anaemia but some inflammation.  No D this week so far, constipation, stomach pain, cramps, aching joints (most of them), fatigue, bleeding and rectal pain. When I do have D, I need to go between 5 and 15 times a day.

The doc is trying to chase up the gastro consultant but it's just a waiting game... I live in a rural area and think if I lived in a city that maybe it would be quicker as the local hospital doesn't have resident specialists.  I like the countryside way of life better though!  It seems the health system in the UK differs immensely from the US and Canada.

My doc is reluctant to prescribe any meds as it may cloud a diagnosis which I can kind of understand but he is not feeling like I do every day!  He did offer to sign me off sick but as I don't know how much longer I will have to wait I would rather battle on at work if I can.  Not sure how well HR would take to me being on long term sick leave with an undiagnosed condition.

Turned this into a rant, sorry... 


Louise


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 5/9/2008 3:47 PM (GMT -6)   
7 years.  I started having blood in my stool at 19, had an endoscopy at college by a proctologist......his conclusion internal hemmroids, and IBS.  7 years, 2 GI's and 3 internal med docs later......UC.  I am sure if it had been caught earlier I would be feeling much better than I am right now.  I think the maintence drugs could have slowed or stopped the progression.  Oh well, my own fault, I knew something was wrong!

diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


Pooper Bowl Champ
Regular Member


Date Joined Jan 2008
Total Posts : 68
   Posted 5/9/2008 4:09 PM (GMT -6)   
  3 Years!
 My first symptom was anemia. I was admitted into the hosp. for diverticulitis and blood work showed anemia. That was passed off due to the diver. elected to have corrective surgery for that condition. Still anemic. I then developed an adhesion from the first surgery and had a second surgery to clear the adhesion. Shortly after that I started to notice changes in my BM's, constipation. I just figured now having two abdominal surgeries this was going to be my norm. this went on for about 6 months and one day everything just broke loose and I mean loose. Went to my PC and it was DX as a virus. This went on for about 6 weeks. Even saw a GI, still a virus. Went to another GI he did a scope and the rest is UC!
Now having said that here is MY opinion. Having suffered from diver. for about 6 years taking antibiotics with every episode and all the antibiotics given me for the surgeries and not being aware of probiotics my colon lacked good bacteria and that is how I feel I developed UC.
 
 Any input on my opinion? I'd be interested to hear.
DX Pancolitis 3/2004
Colazol (Generic) 3 tabs 2x a day.
 


Asia
Regular Member


Date Joined Aug 2005
Total Posts : 188
   Posted 5/9/2008 5:36 PM (GMT -6)   
11 years.
Started having symptoms at age 10. They thought I would grow out of it--throughout my teenage years they thought I was making it up. Don't know how you make up blood, d, mucous, horrific stomach pain, but apparently it was somehow all in my head. Was finally referred to a GI at age 19 and he did a colonoscopy. He checked for about 2 seconds, found a polyp and said that was the cause of my ailments and sent me on my way. A year or so later I got very ill, almost died (but this wasn't an emergency in the GI's eyes)...and then about 6 months after that had another colonoscopy and was diagnosed.
Diagnosed with UC in August 2005. 
Suffered for my whole life before being diagnosed. 
Told to "Eat more fibre." 
 
Currently on:

Salofalk 1500mg x 4/day
Entocort
6mg x 1/day
Entocort increased to:
9mg x 3/day as of 2.14.08

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