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Ulcerative Colitis
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Posted 7/30/2012 1:12 PM (GMT 0)
Last Saturday I went to a friends 40th birthday party. My good friend of 32 years was there - we grew up together and I know most of her family including her aunt.

It was sort of strange, I was talking to my good friend's father and he asked me what is it that I have so I told him again and out of the blue, my friend's aunt piped up that her son was just diagnosed with Uc. He's 16 and was diagnosed last November (I think she said). I know him but I don't know him that well. He's on Asacol, Pred and Bentyl. So, of course, I told this aunt about rectal meds and gave her a few pointers to pass on to him (he wasn't there).

It just thought it strange on how something like this came about. All the while auntie was telling me about her son, my heart just ached for him. At least I waited until I was 22 before I was diagnosed - past the teen years. I hate seeing children and teenagers get struck with this horrible condition! mad
Posted 7/30/2012 2:20 PM (GMT 0)
I guess UC ain't that rare after all perhaps. It is indeed very sad that some one at such a young age already has to take pretty heavy meds. Definitely sympathise with him :(
Posted 7/30/2012 4:16 PM (GMT 0)
It's great you were sought for a connection.

Kudos for the recta meds suggestion...hopefully his doctor will have him on those and he won't need pred again once this crisis is over.

Definitely sad to hear of anyone young who has to deal with any disease.

q
Posted 7/30/2012 4:28 PM (GMT 0)
As I've become more and more open about myself, I've discovered there are people with UC and Crohn's all over the place. I don't know if it's really becoming that much more common, or if people are just more open about it. I agree, it's terrible that so many people get UC so young; I was middle age before I was diagnosed, and it was still hard.
Posted 7/30/2012 5:10 PM (GMT 0)

It is sad to see such young people who have this disease.

Weird thing happened to me this weekend too; I was at a hotel and went downstairs to get some breakfast, and someone had placed an Asacol tablet on a table (must have dropped on the floor.) I told my husband how strange it is to see a pill you take out in the open, and that someone else in the room is taking the same thing. Only thing is I was kind of curious as to who it was!  

Posted 7/30/2012 5:54 PM (GMT 0)
I agree, it is so sad to see children and teenagers get UC. I am grateful I didn't get it until after I was out of college.
Posted 7/30/2012 6:20 PM (GMT 0)
i wish i had had someone like you around to give me tips when i was first diagnosed. i had my first colonoscopy at 16 and nobody in my family had heard of proctitis before.
Posted 7/30/2012 6:24 PM (GMT 0)
I thought it was tough getting UC during my first year of college. I stand corrected. I feel worse when I hear about a child or teenager getting this. It's bad enough having this, worse when you're still growing and trying to find yourself.
Posted 7/30/2012 7:34 PM (GMT 0)
It kills me when I learn of young ones being sick with an IBD...it's so unfortunate that stats are showing pediatric IBD is on the rise more than ever therefore making IBD more and more common of a thing...they really need to find a cure for IBD, not just drug therapies...the pharmaceuticals must be rolling in dough with the uprise of IBD and that is shamefull in itself.

It was hard enough in my early 20's getting sick, so heartbreaking for those younger to have to deal with a life-long chronic illness that is often so intrusive in our lives....it's not good at any age.
Posted 7/30/2012 9:06 PM (GMT 0)
Red, my thoughts exactly, I can't even deal with this disease as an adult, I wonder how kids do. :(

Same sort of thing happened to me at my graduation party in june, where both sides of my family (dads and moms) asked me how my stomach illness was, and proceeded to say things like "oh yeah runs in the family, your great, great grandfather had some kind of dairy problems" or "yep she had ulcers and colitis!" and I was like what?!?
Posted 7/31/2012 12:32 AM (GMT 0)
Oh it just kills me too! I hate Uc, I wish I never even heard of it! But hey, we are dealt the cards we are given so lets make the best of the situation (Yeah I know, easier said than done!) but it just seems SO unfair that a teen has to have this :(
Posted 7/31/2012 12:42 AM (GMT 0)
Sorry to hear about that boy! That's awful news :( I got mine around the same age 16/17. I wasn't diagnosed right at that age. I actually had no idea what was going on, until about a yr later. Anyway, I have to admit hs (senior yr) was not as fun as I was expecting. And as far as college is concerned I'm still having trouble finishing all of my credits! ugh!
Posted 7/31/2012 5:04 AM (GMT 0)
What really has shocked me are the cases of women getting diagnosed with UC during pregnancy or shortly after childbirth. No one ever talked or wrote about these situations until fairly recently, but judging from forum posts, they also seem to be on the increase. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 8/1/2012 8:00 PM (GMT 0)
i think we can blame a lot of these younger kids getting diagnosed on the things we eat. Did you know that a LARGE percentage of corn and soy products in the US are now genetically modified (no labeling is necessary to convey this)? These two ingredients are pervasive in EVERYTHING! Babies who cannot handle regular formula are given soy formula - bad, bad, bad! Soy has been trumped for years as a health food when it is actually anything but healthy (except perhaps organic, fermented kinds). And don't get me started on the corn. When started on these genetically modified organisms as babies, all that gene-altering toxicity builds up causing a number of issues, some not detectable until they are young adults.

Read up on GMOs and be prepared to be horrified and sickened. California is introducing a bill that would require GMO labeling in their state. I hope it passes because then it will filter to the rest of the states. Monsanto - the devil in disguise - is the mastermind behind it all.
Posted 8/1/2012 9:18 PM (GMT 0)
I have a friend from high school who I still talk to and see a couple times a year whose husband
was diagnosed a few years ago. Then when I was in the hospital I gave him a call and asked
"what was it you had again?"
The last time we got together he said to me, " Did you ever think 25 years ago we'd be talking about our poop?"

Not so much:)

I am grateful to have got it later in life then in my teens though. Can't imagine.
Posted 8/2/2012 2:25 AM (GMT 0)

Old Hat said...
What really has shocked me are the cases of women getting diagnosed with UC during pregnancy or shortly after childbirth. No one ever talked or wrote about these situations until fairly recently, but judging from forum posts, they also seem to be on the increase. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)

Absolutely the last thing i imagined would happen to me after giving birth was uc; heck at the time i hadn't even known what it was!
I was busy buying baby clothes, preparing and decorating the nursery, reading books about how to sooth babies and understand their language...i was in such a happy little world.
Now: everyday i writhe in agony when i have a BM, as if my insides are being scratched with razor blades. My son is 16 months and spends most of his time with a baby sitter as iam too weak to look after him...i remember in that short 6 month remission last year i used to take him out for walks, read him stories, lie down together under the sun and play.
Now i can only remember those happy memories and pray that one day i'll be able to do what i love again.
Posted 8/2/2012 5:52 AM (GMT 0)
I have also been surprised at the number of women who have been diagnosed after childbirth. I started having symptoms when I was pregnant with my twins and had my first flare when they were 6 months, flared on and off until they were 18 months and wound up in the hospital for 10 days. For the last 13 year I have had a flare approximately every 2 years, although I'm now flaring for the 2nd time this year.

I have often wondered if it could all start from pregnancy due to the extra physical stress we are put through. I hope that things get better for you soon.
Posted 8/2/2012 6:42 AM (GMT 0)
Goincoastal: i too hope that a lifelong remission is just around the corner coz i i dunno how much more of this i can take.
I can't remember who said this but one of the members on this forum said that they think that uc is a blanket diagnosis for many disorders with the same symptoms- meaning the cause of each persons uc is different to another. Hence why meds work differently for different people.
I think that the uc that starts with pregnancy or birth is hormone-related; ive done lots of research on this and likely the drop in progesterone is the culprit. Im about to start progesterone pills and will be seeing an endocrinologist in 3 weeks.

Hope you find something that works.
Posted 8/3/2012 1:11 AM (GMT 0)
Yep, there can definitely be a hormonal component to UC in females. A while back I was waiting to see my gastroenterologist one day, and I overheard a female patient about age 40 telling another woman in the reception room that her UC has flared after the birth of each of her 4 kids! She looked terrific, though, so apparently she gives her UC a good fight. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 8/3/2012 10:08 PM (GMT 0)
"I can't remember who said this but one of the members on this forum said that they think that uc is a blanket diagnosis for many disorders with the same symptoms- meaning the cause of each persons uc is different to another. Hence why meds work differently for different people"

excellent point - i'm not sure who said this either but i've thought it and i'm sure others have too - it only makes sense - lots of people get headaches for lots of different reasons - that why it's kinda crazy when well-meaning someone says "do this and you'll be fine", whether it's a member of this forum or a friend or relative - the digestive system is kinda complicated, at least compared to another part of the anatomy, say the toe - so not a real surprise that a cure for all hasn't happened -

like i said a while back, i wish i could promise you that what works for me will work for you - unfortunately, i can't :-( ........... no one cause, no one cure !
Posted 8/4/2012 3:36 AM (GMT 0)
Soystud: i noticed in your sig that you are taking astaxanthin...did it help you attain remission? I know, as you said, what works for you may not work for me but im just throwing things at my colon hoping one of them will hit something...
Posted 8/4/2012 4:28 AM (GMT 0)
Conquer UC-- if you are flaring & taking Colazal, you should be on 9 capsules daily, not 6. My gastro would say that 6 is not enough dosing. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 8/4/2012 12:50 PM (GMT 0)
Thanks Old Hat, i couldnt go up to more than 6 as i would get cramps and loose stools and nausea it was horrible; so as of last week im back on 4 g pentasa daily. I should update my sig..
Tbh im not sure if the whole 5 ASA thing is doing much for me, maybe just keeping the inflammation from going pancolitis? Thats still good if its doing that but its done nothing for the bleeding.
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