how did I get UC?

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Jen_J
Regular Member


Date Joined Jul 2008
Total Posts : 25
   Posted 7/3/2008 7:43 PM (GMT -6)   
hi everyone! I've been reading some posts on here...very helpful & A LOT of information :-)

To give you some background, I was diagnosed with UC a few years ago. I grew up eating a LOT of junk & fast food, drank sodas and downed candies like it was no one's business nono

No one in my family has IBD (though my sister had IBS). So...I keep blaming myself for this. If I had eaten healthier, I may never have gotten this dreadful disease!! Sometimes I wonder if I should have been vegetarian or vegan too. The main thing that keeps buggin' me is that I ate a lot of junk growing up and I think that screwed up my immune system & GI tract. I keep kicking myself.

Did anyone on here eat healthily or vegetarian and still get IBD? I'm convinced diet had something to do with my onset. what do i know though.

thanks so much!

~Jen
[female: 28 yrs old: uc]

Post Edited (Jen_J) : 7/3/2008 6:48:42 PM (GMT-6)


suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 7/3/2008 7:48 PM (GMT -6)   

Diet did not cause your UC.  Everyone who has UC has to have the genetic code to get it.  No one in my family had it either; it isn't necessarily hereditary.  I know many east Indians who were born and raised vegetarians and were later diagnosed with UC.  It is not your fault so stop blaming yourself and concentrate on living with a chronic disease. 

 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/3/2008 9:11 PM (GMT -6)   
exactly what she said, it's not your fault. When i got sick i was eating salads and brocoli and healthy stuff all day long. UC is a genetic thing, it's there from the day you are born. Diff things can trigger it and make it become active, but it's always there. For me, what triggered it was an antibiotic, that's a trigger for a lot of people.

Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 7/3/2008 9:12 PM (GMT -6)   
I agree with Sue, diet didn't "cause" your UC.  Here is a good link to the respected Mayo clinic. It is believed to be a genetic issues, and that something "triggered" the UC to become active. What causes this "triggers" is unknown, but there are ideas about bacteria issues, then the immune systems read that bacteria and then starts attacking the lining of the colon.
 
Surgery Photo & Journal below: http://ucstory.wordpress.com/
We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 7/3/2008 9:19 PM (GMT -6)   
Here is a good video explaining "What is UC", well done, short and may be good to watch:
 
http://ucstory.wordpress.com/2008/06/23/video-what-is-uc/
Mark & Megan
7 yrs UC to 1 year J-Pouch
Surgery Photo & Journal below: http://ucstory.wordpress.com/
We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!


jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 7/3/2008 9:27 PM (GMT -6)   
Soft drinks were not allowed in my house when I was young and I almost never ate fast food. DXed with UC when I was 20. No one in my family has IBD, but my dad does have the typical "old man issues" of not being able to handle spicy foods or anything.

However, I did take a 2 year course of Accutane (the acne drug) when I was in middle school. It's been linked with increased risk for IBD, but it's nothing rock-solid. I probably just got the short end of the genetic stick.
James

21 yrs old, diagnosed severe ulcerative pancolitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007; 16 Jun-22 Jun 2008
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007
Imuran (azathioprine) 50 mg x 4 daily
Iron, Vit C, Vit D, Zinc, and seemingly always on Flagyl
Eating fruits and vegetables like there is no tomorrow...


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 7/3/2008 9:38 PM (GMT -6)   
Maybe no one in your immediate family has it (yet) but that doesn't mean it's not running in your genetic bloodline somewhere...it's pretty much 2 parts to having IBD, genetics, one must first be predisposed to getting it and two, a trigger which is viewed as being environmental...for crohn's disease, smoking (including second-hand smoke) is one KNOWN trigger for crohn's, not for UC though, infact it's practically the opposite in where they find more people who quit smoking become sick with UC, but they would still have to be genetically predisposed to getting it.

Do not blame yourself, that's a waste of time and un-necessary stress to beat yourself up over when it's not even likely a fact.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Jen_J
Regular Member


Date Joined Jul 2008
Total Posts : 25
   Posted 7/4/2008 1:02 AM (GMT -6)   
thanks so much! what great links & stories too! my mom blames me also sad She keeps saying "look what you did to yourself! I told you not to touch that garbage!" I'll show her this thread....Maybe she'll get off my case!

Ok, so at most the damage done by all the junk food was a mouthful of cavities tongue and a few extra pounds...


oh yeah.... I was seeing a Chinese Medicine dr. He told me diet definitely causes UC, western science just hasn't proved it yet. confused

Post Edited (Jen_J) : 7/4/2008 12:16:20 AM (GMT-6)


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 7/4/2008 2:33 AM (GMT -6)   
Jen, I'm sorry to hear that your Mom is "blaming" you for this disease. You'll need to talk with your Mom, show her resources and get her to support you on this. She can NOT blame you for this, this is a chronic disease that can vary. It is common in families will react with anger, sadness, fear, denial, and at some point acceptance should come so that you can develop a plan for dealing with this. On the link below you can show her the "Coping as a Family" with IBD. This disease can be serious, in our family, Mark's disease was our families disease not "his disease"

http://www.wrongdiagnosis.com/u/ulcerative_colitis/video.htm
Mark & Megan
7 yrs UC to 1 year J-Pouch
Surgery Photo & Journal below: http://ucstory.wordpress.com/
We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!


jayce
Regular Member


Date Joined Nov 2007
Total Posts : 401
   Posted 7/4/2008 7:52 AM (GMT -6)   
jen, your mom is probably frustrated that she can't fix this one for you.i am always blaming one thing or another for starting my daughters uc
the antibiotics, the advil, the junk food, myself...the list goes on and on, but she just says mom, there is nothing we can do about that now so stop looking for a reason, it won't help now, she's right and the focus is on staying well. and getting used to this.
Mom to 19 year old daughter diagnosed 11/07.
colazal 3 x3 daily
purinethol 6mp=50mg daily
culturelle probiotic 1 daily
chewable vitamin
xifaxan antibiotic 400mg 2x day soon to be weaned


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 7/4/2008 7:53 AM (GMT -6)   

Hi Jen,

Reading your first post was like watching my life flash by in instant replay.

I'm from England and many of us back then used to eat sweets like crazy; when I moved to the U.S.A and found stores that sold 'English' sweets, I went to town...forget about having a sweet-tooth, I took it to a whole new level believe me...lol

That said, I believe it's highly (and I mean highly) unlikely that foods 'cause' UC; certain foods can (in my meek opinion) increase symptoms, but not cause UC. Still, I won't completely rule out foods because no one knows the long term effects of preservatives, genetic enhancements - remember taco bell? Steroids, and other chemicals to humans; bearing in mind that we are all made up differently through genetics.

My belief is that stress, antibiotics, the pill or maybe genetics are the cause of UC...whatever causes an imbalance between the good and bad bacteria in your body. I only developed UC after taking several rounds of powerful antibotics during a period of stress in my life...

But who knows.

Jen, I know your mom loves you but blaming you for something that was out of your control isn't right...to me, it's like blaming someone who has cancer or diabetes and what's worse is that we know to some degree, what causes those diseases, but no one knows 'for sure' what causes UC. This is a horrible condition that puts a tremendous amount of stress on you and there are many frustrating moments were you need her loving and understanding support. I'm a quiet person, but I consider myself a tough guy mentally, due to my upbringing and my track and field training, but there were many moments when I sat down with tears in my eyes, wondering how I was going to make it through the next day.

Other conditions have a few symptoms here and there...but not all at the same time like UC at it's worse:

Extreme fatigue, joint pain that mimics arthritis, muscles that ache, dehydration, the loss of vitamins and minerals that leads to dry skin, eyes that are sensitive to sun light, frequent bowel movements, dizzy spells, flu like symptoms, headaches, bloating, gas, brain fog, etc.

and this is before experiencing side effects from meds!

Please have your mom read this...UC is by far, the worst thing that has ever happened to me and I don't wish it on my worst enemy (if I had one that is)

:-)  

NBT

 


Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.

Post Edited (NuffinButtTrouble) : 7/4/2008 3:04:45 PM (GMT-6)


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 7/4/2008 8:26 AM (GMT -6)   
I"m sorry your mom blames you for this DD. It's not right. We are not to blame. We have an autoimmune disorder that no one could have stopped.

I grew up a vegetarian from age 10 on. My choice, not my families. I cooked my own food, ect. I did have a bit of a pop addiction but my docs quelshed that one at about 12.

I agree with others that food does not cause a flare but can affect it. There are some on this board that food does not affect their UC and others who swear by a very limited diet. I was very sick growing up (lots of gastro problems though no UC dx til 18) and put on so many medical diets. They were beyond healthy and closely watched by docs. I don't think any of that had to do with me getting UC.

Please Please don't blame yourself for getting UC. It's like blaming someone for getting cancer. No one would choose this and the thousands upon thousands of UCers out there did not all eat MCdonalds too much.

Good Luck!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


mudua
Regular Member


Date Joined Apr 2007
Total Posts : 459
   Posted 7/4/2008 12:15 PM (GMT -6)   
I stopped eating meat at the age of 12 when I witnessed an animal being slaughtered for food. I have been a vegetarian since 12 and I do not indulge much in junk foods. My family members mainly eat junk sugary foods, meats etc and they have a heatlhy bowel.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 7/4/2008 12:39 PM (GMT -6)   
Jen_j,

I think it's awful that your mom says things like that to you, but I totally understand because your mom sounds like my mom...tell your mom that there's a better chance she caused you to get sick from stressing you out so much.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


UChick
Regular Member


Date Joined Jun 2006
Total Posts : 173
   Posted 7/4/2008 3:05 PM (GMT -6)   
I'm not a vegetarian, I drink soda & eat candy, no one in my family has UC, and I think an antibiotic for bronchitis triggered my first flare.

Your immune system could have reacted to something it thought was "foreign" and bam the UC comes out.

Don't think you caused this disease because you didn't. All you have to do is conquer it and you'll figure out what will keep you in remission for 6 years like me. It could be meds, it could be diet, or for some surgery.

http://www.healthline.com/adamcontent/ulcerative-colitis?
"The cause is of ulcerative colitis is unknown. It may affect any age group, although there are peaks at ages 15 to 30 and then again at ages 50 to 70. " "Because the cause is unknown, prevention is also unknown."
Age 18
Diagnosed September '01 : Remission since July '02
Asacol- 4 pills 3xday
Azathioprine- 75mg 1xmorning
Centrium A-Z multi-vitamin
Took Remicade 3 times, BIG FAN!!!!
Have Taken: Prednisone, Flagyl, Zantac (for acid reflex)


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/4/2008 3:16 PM (GMT -6)   
I used to have girlfriends roll their eyes at me and say, "I wish I could eat as healthy as you." I've always been about moderation and healthy eating, even with my beloved sweets. I've always been in good shape, and my only vice was some good sound drinking in my 20's like every other human being on the planet. Needless to say, I was NOT expecting this. Its not your fault.

I feel your pain about your mom. Mine doesn't necessary blame me, but she's always saying things like, "Take CARE of yourself, don't eat anthing CRAZY." There are days that a glass of water will have my running to the toilet, and I don't want to hear anyone telling me that I somehow could have avoided that. I do know, however, that her concern comes from a caring place and from not knowing any better. Its hard for my parents to keep up with all the new diets/treatments/etc. I'm sure your mom is concerned; she just needs some education on the disease. Good luck!
Female, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG 4X daily, Fish Oil 2x daily, Disgestive Advantage (Colitis) 2X daily, Metamucil 2X daily, Yoga daily.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing some improvement)
 
 


Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 7/4/2008 5:13 PM (GMT -6)   
One things for sure your pre-UC diet certainly didn't help anything. I feel the same way you do b/c I ate mostly junk foods and lots of it before I got UC. Now I feel guilty eating something I know I shouldn't have. We are what we eat but don't feel bad b/c UC can feed off negative emotions as well. Just try to understand your own body as much as you possibly can and make adjustments to cope and maintain and keep feeling as healthy as possible.
My trigger was drinking way too much beer one night. I had a totally normal bowel before then. Diet may not cuase or cure, but keep in mind its definately something major to consider. Good luck.
                                                                                         
28/M/TX single parent of gorgeous 2.5yo girl (revised 5/8/08)
Severe Colitis (pancolitis) since January 9, 2005
currently:  6th week flaring;improving; 2bm/day; very little blood
RX/day:  Currently 10mg of prednisone per day. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
OTC: seldom use VSL#3, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it.
Other: food combos, enzymes, good posture, chewing more, etc.


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 7/4/2008 7:33 PM (GMT -6)   
I was a vegetarian for about 3 years before I got UC. I ate healthy...lots of fresh vegetables and fruit and a high-fiber diet. Before I became vegetarian I ate pretty healthy, too. I did drink about a soda a day and eat some candy and other junk food almost daily when I was a kid though. Sometimes I wonder if my body got so used to eating all the processed food and candy, soda, etc. that it couldn't handle it when I started eating healthier.
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


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/5/2008 10:29 AM (GMT -6)   
I know what you mean--when I was first diagnosed, my parents thought that UC was something they/I could have prevented. But it took questioning my GI a few times to have them understand that it was no one's fault, it's genetic, and we don't know what could have triggered it (although I think that maybe it was all the stress I put myself in during high school, but we'll never know!). 
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (2nd infusion 06/26/08), 2.4 g Lialda
*exploring the option of surgery
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/5/2008 8:23 PM (GMT -6)   

Mark and Megan,

Thanks so much for the video link.  It was perfect and easy to understand as I am new at this.

I need to be in remission to have my knee replacement which I needed last year so hope I can get some more medication to help next week.

ElaineNY


68 old lady
New UC (with rectal bleeding and diarrhea)- 2 months ago, colonoscopy showed mild
UC rectal and little above.
Using Canasa 1000mg. once a day
Probiotic Primal Defense
Prilosec for GERD
Inderol for hypertension
Xanax
Lipitor
 
 
 
 


Shaz032
Veteran Member


Date Joined Feb 2003
Total Posts : 1251
   Posted 7/6/2008 12:12 AM (GMT -6)   
I was diagnosed with UC when I was 5 years old but my parents think I'd had it since birth since they would often find blood in my nappies (diapers), therefore, I'm POSITIVE that my diet at the time had nothing to do with it lol
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 7/6/2008 12:42 AM (GMT -6)   
Interesting that this post came up. My parent's thought that my diet caused UC initially, for me also. But you and your mother will eventually know someone who knows someone with UC. Just give it some time and you'll be amazed at how many people you know has UC. Anyway, a lady in my parent's church group also has UC. Before she got it, she was a health nut, ate all of the organic foods, vegetarian, avoided junk food, sugar, processed foods and took vitamins and exercised/played sports regularly. She was doing all of this since she was in high school. She got diagnosed with UC in her late 20's. This is what convinced my parents that your immune system can just get faked out and start attacking an organ, and that food wasn't the trigger for it. Once you or your loved ones get over that hurdle, it's easier to rationalize an autoimmune disease. A lot of people have issues with this. Just look up a list on the internet for autoimmune diseases. Any organ/system in your body can be attacked by your immune system. And for most of them, doctors are clueless on why it happens, it just does.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds including iron pills except Actonel and feel normal again
Sept. 2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


Jen_J
Regular Member


Date Joined Jul 2008
Total Posts : 25
   Posted 7/6/2008 11:47 PM (GMT -6)   
thanks everyone. I have been trying to patiently educate my mom (patience with her is tricky!)
So far, she still has it in her head that I did this to myself or that SOMEHOW my diet played a role. My entire family is trying to dig through my past to see what went wrong.
I guess, like someone said, sometimes people need to blame SOMETHING. Since no one knows the cause I guess we all tend to hypothesize at one time or another.
But you're right, it could have been the stress!
I do still feel guilty that maybe this could have been prevented, but I am learning more and more about this disease too (thanks to u also!)

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 7/7/2008 1:23 AM (GMT -6)   
Don't feel guilt about your disease, that's a waste of energy and you have no reason to put blame on yourself...it is what it is and the sooner you accept that the easier it may be for you to deal with emotionally, mentally and even physically.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 7/7/2008 8:40 PM (GMT -6)   
Yeah, let them go through the grieving process. I think they may be feeling guilty that they somehow caused it. So they may be blaming you, to divert the attention away from them. My parent's took my UC diagnosis harder than me. My mom thought it was food related also. If it is food related, then a lot more people would have UC since I know many people who eat a lot more poorly than I do.

I went through a couple of months of why me and how (my grieving process), then I spent all of my energy focused on learning about the disease and the treatments and the positives and negatives of each. Once I got over the "UC just happens factor"...I was then able to rationalize the drug and surgery options for UC a lot more easier. Just try to get back to as close to normal as you can. You'll never be 100% normal again, but you can get pretty darn close.

My UC was very severe, I guess I was part of the 20% of the people where the meds didn't work. I only did prednisone and Asacol. They didn't work after a year and I didn't want to graduate to the other harsher drugs and their effects. The prednisone gave me osteoporosis at age 31 and I said I had enough of the drug route. So I had surgery last February to removed my colon so I wouldn't have to take any medicine anymore. Now, I feel normal again...and I'm off all of the pills and can eat and drink everything again. I just have a temporary ileostomy which isn't bad at all. So the way I'm living now is the worst case scenario with the surgery option, which isn't bad at all.

Good luck.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds including iron pills except Actonel and feel normal again
9/25/2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"

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