Smaller World for UCer's

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Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 7/31/2009 10:03 AM (GMT -6)   
I got into the middle portion of my vaccine workshop last night where I talk about a measles study that is linked with UC, and I always mention I have this disease, and two of the ladies that come raised their hands and said they had it too. You never really know who around you has this....
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 7/31/2009 10:08 AM (GMT -6)   
I often wonder. We should have a secret bracelet or something.
32 yr old female
Mild Pancolitis
UC since 2000 - in remission for most of those 8 years med free.
Cannot tolerate mesalamine. Currently take probiotics and fish oil. Trying Applied Kinesiology & supplements.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/31/2009 10:11 AM (GMT -6)   
And then a secret handshake! :)
Seriously, though, I'm surprised at how many people say "Oh, so and so also has UC" when I tell them that I have UC.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Serenity Now
Veteran Member


Date Joined Jan 2009
Total Posts : 2105
   Posted 7/31/2009 10:31 AM (GMT -6)   
The only time someone ever said they know someone else who has it.... was my friend at the gym. I asked who, and she said her CAT! LOL.
ack, 42, Vancouver BC
 
DX: UC (Pancolitis) as of Jan2009.  Symptoms first began June 2008.
Current Meds: Ferrous Sulfate, plus various supplements
Previous Meds: Jan-Mar 2009: Asacol 800 mg (1 pill x 4 daily), stopped Mar14/09. 


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 7/31/2009 11:19 AM (GMT -6)   
My best friend from high school has it, though we have different extents. Also, my mom's friend who is a doctor (I got my rowasa script form her) does as well.
22, female, diagnosed 3/6/2009, symptoms for 2 years beforehand
Mild ulcerative colitis from rectum to mid transverse colon
Currently taking Asacol (1200 mg 3x/day), Rowasa and Calcium/D supplements


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 7/31/2009 11:21 AM (GMT -6)   
i had never heard abt it before i was dx... then after that i started meeting many people who had this problem...especially in one of the yoga class i went had many people suffering from it.
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 75 mcg in June'09 :-(


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 7/31/2009 12:05 PM (GMT -6)   
You want to hear a small world story, I've got a good one!
At work I was talking to a friend/co-worker who sits next door to me about iPods and I showed her my new iTouch and said it is a real life saver for my loooong clinic appointments. She asked about the appointments so I told her I was getting an infusion for UC and she says SHE had UC until she had surgery and now has an ileostomy! I was so shocked, it was just a surreal moment. I had actually been looking for someone to talk candidly about the surgery with me. AND THERE SHE WAS NEXT DOOR. I am still just floored by this coincidence. Since then she has been so supportive and even brought in a wafer and a bag for me to take home and look at and show my husband.
I feel like I had a guardian angel that knew when I was at rock bottom with this disease and so threw me a life preserver--a friend who had gone through it.
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 7/31/2009 1:02 PM (GMT -6)   
Most of the folks I've talked to don't even know what it is. Probably the only reason I knew about it before I was diagnosed was I had an uncle who had it.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


neion
New Member


Date Joined Jan 2007
Total Posts : 12
   Posted 7/31/2009 1:13 PM (GMT -6)   
Kind of amazing how often I meet people with IBD. My son started Kindergarten this week (he's been flaring this summer), and he forgot his meds one day, and when I brought them in and was chatting with the school nurse found out she had UC! Strange!

Jessica

Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/31/2009 1:13 PM (GMT -6)   
Same here. Most of the people I know have no clue what UC's all about. After getting diagnosed, I found out that an uncle had UC too -- he was the one who was always whining about how spicy our home-cooked food was, and now I know why. But even then, most of my family think it's just a bit of D, and not that big a deal.

Hey, I'm all for the secret handshake. As it is, we already have the secret walk -- the clenched bum speed walk to the nearest toilet.
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa/Mesacol suppository occasionally


TLB37
Regular Member


Date Joined Dec 2008
Total Posts : 79
   Posted 7/31/2009 8:50 PM (GMT -6)   
It runs in my family . My mother had it . I have it and my brother has it. I really think my daughter has it but she will not go to the dr. She is 20 and thinks she knows it all .
    Female 37
 
   20 years of Ulcerative Colitis
 
  meds,  2 Lialda, 3 Azathioprine, 1 Celebrex, Cymbalta, Mirtazapine,
               TLB ( :


Tofu4Dinner
Regular Member


Date Joined Jul 2009
Total Posts : 29
   Posted 8/2/2009 1:49 PM (GMT -6)   
Though I really wouldn't wish it on anyone, I do sometimes think that the staff at my doctor's office would benefit by going through what we go through for just a month. Then maybe they will be a little more understanding and compassionate.

Tofu
2000 - Diagnosed with UC
Asacol - didn't help - quit taking after 8 months.
Prednisone for 1 year - weakened my teeth to the point that some broke - quit taking.
2004 - Remission for 9 months! Woot!
2005 - Began taking Strattera for ADD and colitis went back into remission!
June 2009 - off the Strattera and colitis is back.
July 23, 2009 - Canasa suppositories - 1000mg x 2 a day

(Zoloft 150mg/daily; Xanax .5mg x 2)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 8/2/2009 1:58 PM (GMT -6)   
tofu...it's always nice to have others understand us, but it goes the other way around by saying we probably don't know what others go through either. I don't think that one needs to suffer to be able to treat one well.

q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Tofu4Dinner
Regular Member


Date Joined Jul 2009
Total Posts : 29
   Posted 8/2/2009 2:10 PM (GMT -6)   
True, quincy. And I try to be as understanding as possible and I usually am. But last week, when all 3 of my phone messages never reach either the doctor or the nurse (spent all last week trying to get my CT scan scheduled at the hospital) and when I finally talk to a nurse and told her that I need to have the CT scan done at the hospital and not the imaging center they sent me to because of insurance purposes. I got a call back 3 days later from a nurse just checking to see how I was feeling. I told her I hadn't had the CT scan yet and I felt terrible and that my insurance wouldn't pay for it to be done at the imaging center they sent me to but would if I had it done at the hospital. She did apologize that no none of my other 3 messages made it to the doctor and said she'd let him know about changing the location and she promised she would call me back. Then a couple of hours later I get a call from a different nurse that said my doctor said I need to go to the ER and when questioned she had no idea why he would want me to go to the ER. She called back 2 hours later and said the nurse I had talked to earlier that day told him I was asking if I could go to the ER and his was response was "of course she should go to the ER". I had to explain (this was now the 5th time I spoke to someone at his office) that all I needed was them to re-do the paperwork for me to get the CT scan on my abdomen at the hospital because my insurance wouldn't cover it at the center they originally sent the order to. By Thursday at 5:00p.m. I finally talked to a third nurse who said she was faxing my order to the hospital. By 4:00pm on Friday the hospital still had not gotten the faxed order and only after calling the doctor's office again did they finally fax it. Meanwhile, I having up to 20 episodes a day and had lost 12lbs in less than 2 weeks. I didn't let my irritation show until my final call to the doctor's office Friday afternoon. It's difficult enough dealing with insurance and paperwork but when your feeling horrible it near impossible.

Tofu
2000 - Diagnosed with UC
Asacol - didn't help - quit taking after 8 months.
Prednisone for 1 year - weakened my teeth to the point that some broke - quit taking.
2004 - Remission for 9 months! Woot!
2005 - Began taking Strattera for ADD and colitis went back into remission!
June 2009 - off the Strattera and colitis is back.
July 23, 2009 - Canasa suppositories - 1000mg x 2 a day

(Zoloft 150mg/daily; Xanax .5mg x 2)

Post Edited (Tofu4Dinner) : 8/2/2009 2:14:26 PM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 8/2/2009 3:05 PM (GMT -6)   
Absolutely....what a crappy run-around you're being forced to go through. I doubt any amount of understanding by others would have changed anything. Imagine if you didn't call as many times as you did?

Did you end up going to the ER?

I can relate to the weight loss and 20 times bms...I sure hope you'll be able to get some of this under control soon. Please enquire again about rectal meds.



q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 8/2/2009 3:11 PM (GMT -6)   
When I was very sick with my disease, a "family" friend, actually my husbands brother's friend, which is now my friend, visited me in the hospital, and mentioned about her crohn's to me. We now talk about our diesase to each other. It's kinda like a bond we've got, because we understand our problems. It's so nice having someone in your life that's going through the same thing.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira since of May 2007 (Currently in remission since May 2007)
Put on Imuran from May 2007 to Jan, 15 2009
Put on Canasa June 25, 2009, off Canasa on June 30th 2009.
*Can't take Asacol, Allergic to Remicade, odd reactions to Canasa went backwards a bit.
*Started minor flare in mid June 2009 but VERY minor. :(


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 8/3/2009 9:50 AM (GMT -6)   
All inflammatory diseases are on the rise. I think there were three different women in my church diagnosed with lupus here lately. It says something about our lifestyle, diet and chemical exposures.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 

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