How long have you had Uc?

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Red_34
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Date Joined Apr 2004
Total Posts : 23551
   Posted 2/5/2009 9:25 PM (GMT -6)   
This is an unofficial poll.  Curiosity is striking me again   smilewinkgrin   And in case you didn't know, I am just the curious sort of person! So I am interested in knowing:
 
1. When did you first start having symptoms and also at what age?
 
2.  How long did you let your symptoms go before seeing a doctor about it?
 
3.  How long have you had it since being diagnosed?
 
 
Here are my answers:
 
1.  I was 21, just had my son when I noticed blood in my stool.  I thought it was hemmeroids so I didn't think much about it.  The blood came and went.  Then the D started and the left sided pain.  So I went in to a proctologist, still thinking it was hemmies.  He took a quick peek and said I need to see a GI because he thinks I have Uc, just by visual.  I guess it was pretty bad.
 
2.  So basically I let the symptoms go on for over a year before I went to the proctologist and then to the GI.
 
3.  I was officially diagnosed at 22 and I am 39 now.  So come this spring, it will be 17 years for me.


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 2/5/2009 9:28 PM (GMT -6)   
1. I remember having terrible stomach aches (more like colon aches) when I was quite young-- some of my earliest memories. And I often wonder if they were part of this whole mess. I was diagnosed with just colitis in college-- then a few more years before I was officially dx-ed with UC-- so about 24.

2. I flew for the USAF and didn't want to stop so I went on like this for a year....yeah...I should be ashamed.

3. 24 and I'm 29 now... 5 years plus another year of pretending the problem would go away....so 6!
Ryan


Meds:

Began Humira on 10 Jan 2009

Second injection: two pens on 24 Jan 2009


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 2/5/2009 9:39 PM (GMT -6)   
1. I was 18 (during the last month of high school).
 
2. I went to the doctor a week or two after my symptoms began. My first symptoms were constipation and abdominal pain, so my doctors just told me that I just had a virus and to use Miralax as needed. When I went a second time, they told me the same thing. When I went the third time, they told me to take Prilosac (I think). I went again two months after my symptoms began and the doctor took my blood and saw that I needed a blood transfusion immediately. And that's when all the tests started.
 
3. I was diagnosed 2 weeks before starting college. I've been diagnosed for a year and a half.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/5/2009 9:53 PM (GMT -6)   
1. I noticed blood. It was within a year after I finished a course of Accutane, which I believe caused it. I was about 26 and in law school.
2. I think I went to the doctor pretty much right away, and was diagnosed right away. I had the benefit of being enrolled in a university that also had a top-notch school of medicine.
3. So I've had it for 23 years.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


Chris'sColon
Regular Member


Date Joined Jun 2008
Total Posts : 237
   Posted 2/5/2009 10:12 PM (GMT -6)   
1. i first saw specks of blood in chris' stool at about 6 months. his pediatrician assured me it was perfectly normal... anytime i'd bring it up he'd tell me there was some bug going around.
2. he got worse and worse and finally at age 2, I demanded that the pediatrician refer him to the pedGI. within days we had a diagnosis and meds followed by a short remission, and then a flare, and another remission, and now another flare...
3. 3 years since first symptoms, just over 1 year since diagnosis.
Veronica (27), mommy to Chris (3.5 yr old, diagnosed november 2007 with left sided UC) and Emily 10 months
 
Chris current meds:
 Prevacid, Prednisone 20mg
 Pentasa 1000mg
 Culturelle 1x daily
 soon to start Imuran 25mg


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 2/5/2009 10:22 PM (GMT -6)   
1. I was 15 when I started having problems, the summer before I started high school. I had an h-pylori infection and took antibiotics too long and it killed my digestive flora and after that I was still having problems. We believe the killing of my digestive flora brought on the UC (It also happened when I was a year old). I was officially diagnosed in March of 2005 so I was 16 by then.

2. I started having problems in the beginning of the summer and thought it was just IBS and nerves about starting high school. I saw my primary dr about 3 times in the late summer before I was sent to a GI. So probably about 3-4 months.

3. In March will be 4 years. It took about a year and half of hell to get into remission and April will officially be 3 years of remission.
Sam
20 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"If you don't like something change it. If you can't change it, change your attitude"
Maya Angelou


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 2/5/2009 10:27 PM (GMT -6)   
1. I first remember symptoms in October 2004, when I was 36.

2. First, I noticed mucus in my stool (didn't realize it was mucus at first). Blood appeared probably within a week, which sent me to the doctor's office. They initially did blood tests and fecal analysis; nothing showed up. Told me it was probably just leftover effects from stomach flu, which I'd had right before symptoms appeared. Blood and mucus persisted, I pestered my GP, and I finally got an appointment for a colonoscopy in mid-December. By that time, symptoms had been cleared up for a couple of weeks. The GI told me my colon looked perfectly healthy. about every year after that, I'd have blood and mucus for a few days, but it would always resolve quickly. Until May 2008.

3. Last spring, symptoms reappeared and kept getting worse, plus I got more and more fatigued. Went through the same rigamarole of blood tests, etc, and finally got a referral back to the GI in mid-June. about 3 seconds into the flex sig, he said, "You have ulcerative proctitis". So I've been diagnosed for 8 months.
41, female
Dx ulcerative proctitis, 3-5 cm, June 2008. Still flaring? Not sure.
Canasa 1000 mg suppositories and 1 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories (tapering) and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, and Trazodone 75 mg for sleep/anxiety (clonazepam as needed)
2.5 mg methimazole for thyroid
Had some success with acupuncture
Osteopenia and other assorted ailments


EdwardC
Regular Member


Date Joined May 2008
Total Posts : 48
   Posted 2/5/2009 10:57 PM (GMT -6)   
1. I started having symptoms in earnest in November of 2007 at age 40. Mostly blood in the stool and frequent bm's and then later, fatigue and a sense that "something wasn't right." I thought I had colorectal cancer, initially.
2. I saw my general practitioner in March of 2008 and then my GI specialist in April so about a four month wait.
3. I've had it for a little over a year now.
Mild pancolitis with some diverticular pockets diagnosed in April '08
Currently on 400 mg Asacol X 6 per day


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 2/6/2009 7:54 AM (GMT -6)   
1. I was in my 2nd trimester of pregnancy and I started having D one weekend. I thought it was food poisoning from a tuna sandwich I ate (boy, don't I wish that were true now!). The D lasted all weekend and I started seeing blood after a few days. I was 31.

2. I saw my regular doctor immediately. I was tested for c.diff. which came back positive. It took 3 months for it to go away. about 2 weeks after having my baby, I started having bloody D again. I tested positive for c.diff again. The treatment wasn't working so my GI did a colonoscopy, it was then that I was diagnosed with UC.

3. It's been almost 7 years since the c. diff diagnosis and 6 years since the UC diagnosis.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
75mg 6-MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


UC_Dad
Regular Member


Date Joined Nov 2008
Total Posts : 33
   Posted 2/6/2009 8:09 AM (GMT -6)   
1. I first started having what I know now to be symptoms at around age 25. The syptoms were few and far between so I never really thought much of the random D and stomach pains.
 
2. I went to my GP several times for a few years complaining of fatigue and weight loss, but my symptoms finally hit me January of last year, so it was about 4 years till I really pressured my GP.
 
3. After trying 3 months of different anitbotics I sought a specialists and was Dx'd last June with severe UC, so it has only been 8 months, but it seems like forever now that I know how long I was dealing with UC.
Dx'd June 08 severe UC
30 yrs old
Meds
Asacol 400mg x 9
Prednisone 40mg tapering off now
6-mp 100mg
Canasa
 


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 2/6/2009 8:30 AM (GMT -6)   
Noticed blood in stools at around 16-17 yrs of age. Immediately had samples sent to lab. They never figured out what it was, probably because I was having no diarrhea. At age 19 I was officially diagnosed with Ulcerative Proctitis...a year or two later UC. I'm currently going on twelve years with this disease with only one time going full colon flare, otherwise it's left-sided.
Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: 100 mg Azathioprine a day
 
 
 
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 2/6/2009 8:32 AM (GMT -6)   
Officially diagnosed at 41 but had mild symptoms for at least 2 years. I have had stomach problems all of my life-

I have had UC officially for 2.5 yrs. but it feels like forever since it has been a continuous flare.


:((
Jackie, 43
Pancolitis, DX October 06

Lexapro, Colazal 3x3, Synthroid, Protonix, 6MP (100 mg)
Severely Anemic
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 2/6/2009 10:27 AM (GMT -6)   
     1)  First symptoms were mucus and diarrhea, then blood.  Everything I ate just passed right on through.  These started while I was on the Atkins diet...no or low carbs.  Went to a quack GI doctor in Philly who performed a sigmoidoscope and sent me on my merry way with the diagnosis of irritable bowel.  That evening all hell broke loose...high fever, running to bathroom every fifteen minutes, lots of bleeding.  Hubby took me to ER.  In hospital for eight days where I was diagnosed with UC.  I was then 52 yrs old back in 1998.
 
     2) Symptoms started in beginning of Sept of 98 and I wound up in hospital beginning of Oct. So one month.
 
     3)  It was ten yrs last October.  I also would like to add that while growing up my family physician prescribed antibiotics for EVERYTHING and like a loyal patient, I took them.  I think now I am paying the price.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/6/2009 10:32 AM (GMT -6)   
1. When did you first start having symptoms and also at what age? Summer of 2006 - age 66.  I have had IBS for years but scopes never showed UC.
 
2.  How long did you let your symptoms go before seeing a doctor about it? Maybe a few months since my husband was diagnosed with lung cancer and I put it off.
 
3.  How long have you had it since being diagnosed?  Diagnosed May 2007 - no relief yet.
ElaineNY
 

68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 2/6/2009 10:58 AM (GMT -6)   
1. When did you first start having symptoms and also at what age? I had 1st symptom in my early 20's - continuous watery diarrhea and alot of weight loss.
2nd time in my 40's - symptoms started as bloody mucus. - tho I had diarrhea, mucus, urgency and gas for years prior

2. How long did you let your symptoms go before seeing a doctor about it? In 1983 I waited a few weeks because of the weightloss -had sigmoidoscopy, mild inflammation found, diagnosed with "spastic colon" tho I think now it was UC
In 2005 I waited 2-3 months because I couldn't bear the thought that I had colon cancer. Finally got up the nerve in October & diagnosed via colonscopy 2 wks later

3. How long have you had it since being diagnosed? Official dx for a little over 3 years
UC diagnosed 10/05, first symptoms 1983
6mp * asacol 12/daily * rowasa pm * cortifoam am 
 Culturelle Probiotic - prilosec - metamucil capsules
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 2/6/2009 11:12 AM (GMT -6)   
Red_34 said...
This is an unofficial poll.  Curiosity is striking me again   smilewinkgrin   And in case you didn't know, I am just the curious sort of person! So I am interested in knowing:
 
1. When did you first start having symptoms and also at what age?
 
2.  How long did you let your symptoms go before seeing a doctor about it?
 
3.  How long have you had it since being diagnosed?
 
I had "stomach aches" off and on as a child. Was diagnosed with IBS in college. Diagnosed with UC in spring of 1999. I was 33 years old.
 
I'd had the flu and had been given a broad spectrum antibiotic, Biaxin, that made me extremely ill with constant diarrhea and then alot of blood. I was first taken to the ER, then hospitalized for a week, so there was no waiting around for me.
 
I'm hitting the ten year mark.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 2/6/2009 12:57 PM (GMT -6)   
I started showing blood in my BM's when I was about 11, but didn't officially flare until I was 25 (2007). From when I was 11 up until I was 25, those symptoms came and went. Just thought it was the way I was. It hit hard when in 2007. I was hospitalized and in there for 25 days. Now I'm on medication to keep me in remission, but the sucky thing right now is that I constantly get the stomach bug. ANNOYING!! I have been in remission since may of 2007. Wohoo!
26 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


JingleBell
Regular Member


Date Joined Oct 2008
Total Posts : 80
   Posted 2/6/2009 1:10 PM (GMT -6)   
My mom noticed blood in my stool when I was 8. I was immediately taken to a pediatrician who sent me to a G.I.. Had my first colonoscopy at the same age was thus diagnosed. That was 27 years ago.
 


Sweetpea17
Regular Member


Date Joined Jan 2009
Total Posts : 73
   Posted 2/6/2009 2:22 PM (GMT -6)   
1. When did you first start having symptoms and also at what age?

2. How long did you let your symptoms go before seeing a doctor about it?

3. How long have you had it since being diagnosed?



It was mind january of 2007. I was 22. That last week of December I stopped smoking. And one weekend in mid january i was out with some friends and had one to many to drink. So the next day I was really hung over. Or a should say the next couple of days I was hung over. I stared to get D and thought nothing about it. It would always happen to me for about a week after I had to much to drink. Well it kept going. It went about 3 months before i went to see a doc. They did some tests and couldnt find anything. So they had me go see a GI. I only had to wait like 2 or 3 days before I got in. I went to see them and they told me they thought it was either UC or Croins. I had a colonoscopy the next day and about 3 days later I went in and they told me it was UC. So its been almost 2 years since I was diagnosed. And its been hell lol

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/6/2009 2:27 PM (GMT -6)   
I'm surprised that so many of you had symptoms that started as early as your childhood. That is what I worry the most about with my daughter. She is already showing signs of intestine trouble but nothing has been confirmed yet. She gets alot of stomach cramps and random intestinal pains and sometimes random bouts of D. Never any blood yet though. So we are on a waiting game for her.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Sweetpea17
Regular Member


Date Joined Jan 2009
Total Posts : 73
   Posted 2/6/2009 2:31 PM (GMT -6)   
Im sorry to hear that. I will be praying for her. I dont ever wish this on someone. I dont ever wish that anyone would have to even deal with this for a day.

rdm
Regular Member


Date Joined Apr 2006
Total Posts : 229
   Posted 2/6/2009 2:51 PM (GMT -6)   
1. When did you first start having symptoms and also at what age?

I was 32, noticed blood in the stool, no other symptoms

2. How long did you let your symptoms go before seeing a doctor about it?

I went right away to my regular Doc. She asked me the moment she walked in what was the matter as I almost never went to see her, I was very healthy. She scheduled a flex sig which she did at her office in a clinic and the area was so small she missed it going up but saw it coming out She then scheduled a barium enema which was the absolutely worst experience in a diagnostic test I have ever had and it showed nothing. She then scheduled a colonoscopy with a GI. This was, aside from the prep the absolutely best experience in a diagnostic test I have ever had. The drugs were incredible; it showed the same as the flex sig, mild proctitis. Within two years it had morphed into Pan Colitis

3. How long have you had it since being diagnosed?

25 years, the disease was much worse for me in my thirties then it has been in my fifties

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16282
   Posted 2/6/2009 3:54 PM (GMT -6)   
  1. When did you first start having symptoms and also at what age?
    I often had random issues with D for years but not to the point of needing to see a doctor. I was 27 when I started seeing blood in my stool. I assumed it was hemmroids.
  2. How long did you let your symptoms go before seeing a doctor about it?
    I had to wait about 4 months simply because it took me that long to find a female GI that was accepting new patients.
  3. How long have you had it since being diagnosed?
    A little over 2 years cry

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


at wit's end
Veteran Member


Date Joined Jun 2007
Total Posts : 569
   Posted 2/6/2009 8:45 PM (GMT -6)   
Had a quick onset of diarrhea and vomiting due to food poisoning. This was at age 26. Went to the doctor the next day. They wanted me to go into the hospital right away. I chose to wait a couple of days to see if things would improve. I got worse. This is where the gastro doctor I am seeing now first saw me and diagnosed my ulcerative colitis. I have had UC for 23 years now and am seeing the same doctor still.


Diagnosed with left sided UC in sigmoid colon and rectum 1986.
Put on Azulfidine 2 X 3 a day and Rowasa enemas 60mg.
Have been pretty much in remission overall other than a few flares over the past 21 years.
Medicine changed to Asacol 400mg 2 pills X3 times a day. Taken off all meds in 2004.
Diagnosed with acid reflux 2005. Put on Protonix 40mg.
Have been using Canasa 1000mg suppositories nightly since January 2007.
Was put back on Asacol 400mg 2 pills 2X a day in July 2007 maintenance. 


pebble
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/7/2009 6:29 PM (GMT -6)   

1. I am 36 now, and was diagnosed aged 14

2. I was so scared at 14, bleeding and constant diarrhea, losing lots of weight, my family thought I was anorexic! Probably about 3 months before I admitted what was happening and my Mum forced me to the doctors!

3. 22 years I guess, but I have been 'lucky', just 3 major flares and nothing in between, I know so many of you have to deal with this every day.

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