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winkerblink
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 4/24/2008 3:16 PM (GMT -7)   
ok so i just got diagnosed with UC about umm 3 months ago and i have told my friends what i have but i dont explain it. i am too embarrassed to explain because i think they wont understand! because i am 13 and my friends probably just wouldn't get it and they wouldn't talk to me. its so
frustrating because i want to tell someone about it, but they won't understand. help! sad

Post Edited (winkerblink) : 4/24/2008 4:33:04 PM (GMT-6)


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 4/24/2008 4:44 PM (GMT -7)   
Sorry to hear you have UC, Welcome to the forum. It is probably hard for younger people to understand and not make fun of things that they dont understand. Do you have a really close friend that you have had for a good while? I was just thinking maybe you could talk to them. Some may understand more then you might think. maybe start with a young family member a cousin are something like that and see if they understand. Im sorry I couldnt be of more help to you, maybe some of the younger people will come and give you some advice. good luck with it.
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.


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 4/24/2008 5:02 PM (GMT -7)   
I'm so sorry you have to go through this. A lot of adults have a hard time understanding to but it has to be so much worse with people your age.

You don't need to explain to those you don't think will understand. Pick and choose who you tell. I always expalin as ulcers in my colon or just bleeding in my digestive tract.

This might sound weird but what about a teacher or counsler at school? I am a teacher in a middle school and just in my little school there are 3 teachers with either UC or crohns. It can be uncomfrtable to talk to adults about something that you are embarrassed about but believe me they won't laugh at you.

It takes time but as you get used to having UC it gets less embarrassing. If you've looked around here you see we talk very openly about going to the bathroom and when talking about pain and stuff. Here you can talk about all the stuff you are embarrassed about, we have all been there.

Have you looked at CCFA? they have a camp just for kids with IBD. Might be something to talk to your parents about. Even the counlers there have IBD so everyone understands. A lot of kids go every year even when they are not flaring. Its just nice to know that others go through what we do.

Good luck and welcome to healingwell!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 5mg pred, 150mg Imuran
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
Remicade started 3/1/08...just had 3rd infusion


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/24/2008 5:55 PM (GMT -7)   
Welcome to Healingwell! Sorry you had to find us, but glad you did. There's lots of knowledge and support - both important to dealing with UC.

This is a difficult disease to explain to others. Basically what I start with is that people know about ulcers in their stomachs - yours are in your colon. The last explanation I used was that my colon was really raw - like it had "road rash" from a bad bike accident and was really sore. This really got the point across and the person I explained it to cringed.

As you get to know how the disease effects you, you'll find it easier to tell people about it.

Does your school have a nurse? What about a health teacher? Or ANY teacher you're comfortable talking to! Most teachers are concerned for YOUR well being and if you told them would try to help you in any way they can. I know that kids are tough to deal with and most haven't developed empathy, so it makes it hard to tell them you have issues that make bloody D fly out your bum.

You're not alone out there - and there's usually someone here :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 4/24/2008 10:06 PM (GMT -7)   
When you told your friends that you have UC, how did they react? Did any of them ask you what is it? IF so, maybe you should just give a brief explanation to them. If they still seem interested then you can give them more details. That way you won't feel hurt by the others who don't care to listen.

Trust me, there are many adults that don't understand this disease when it's explained to them, so your friends may care, but just can't understand what you are going through.

I would suggest telling only those friends that seem interested to know what you are going through.

Perhaps you can tell them that it's like getting food poisoning, and that usually people get it for a few days, but you have to go through it for a much longer time because your body thinks something bad is in it.

Good Luck! Try to tell at least one of your really understanding friends...that should help you release what you're feeling and maybe that friend can help you share your story. It's not good to keep it inside, you will feel more stressed.

I hope things work out. Please keep us posted and let us know what happens. Just remember, you are not alone. Take care.
Husband diagnosed with pancolitis in May 2007 at the age of 31

Predisone 40 mg for two months-every time weaned off, symptoms came back, Mesalamine(substitute for Rowesa)enema for 21 days-didn't see results in 14 days so stopped taking it, symptoms seemed to get slightly worse.
Xifaxan-on and off
Current meds. : Humira, Colazal 12/day, Probiotic-Align, Fish Oil
Has never gone into remission


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/25/2008 4:18 AM (GMT -7)   
Hi, welcome to Healingwell :) I couldn't imagine having this at your age - that has to got to be so tough for you :( Anytime of day if you want, there is usually always someone here. We are here for you if you need us. As for explaining this to your friends, if you don't want to, you don't have to get into the specifics of it (all that happens). Just say that you have sore in your large intestine that make you bleed and go to the bathroom alot. Your TRUE friends won't mind. It's the ones that tease you or or ignore you that aren't your real friends and truthfully you will be better off without them. And I have to second and third, fourth or whatever the comment - YOU ARE NOT ALONE :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


bratcat
Regular Member


Date Joined Jan 2007
Total Posts : 74
   Posted 4/25/2008 8:08 AM (GMT -7)   
I was diagnosed with UC at 15 1/2 (October 2006, 10th grade). I had been out of school 9 weeks so obviously my friends knew I was sick. My best friends asked if I was okay because they hadn't seen me in a while. I told them that I had UC. I didn't go into detail much. I said basically I have ulcers in my colon or large intestine (I realized people don't always understand they are the same organ). If they ask what some of the symptoms are I say a lot of cramping and trips to the bathroom. My close friends went online and read what it was. My friends are really supportive and when I was sick again this year (October again and now) they would bring home some of the work I was missing in my classes. They always IM me if they haven't talked to me in a few days to see how I am. My friends also like to joke around with my UC. One of my guy friends said he was going to buy me sudoku toilet paper because I was in the bathroom all the time and I love playing sudoku (he never did buy it for me).

It definitely is hard especially at a young age to have UC. If I was 13 and one of my friends told me that they had UC I'm not sure I would understand what was going on. I don't think many people at any age understand what we go through. I would tell your friends that you have UC and if they want to know more than to ask you. You don't have to get very graphic. Sometimes I tell people that I am friends with but not close friends with that it is like having a never ending stomach virus. It usually gets the point across.

Finding a teacher or someone to talk to is nice too. I am close with my 6th grade history teacher. My friend and I would come back to the middle school sometimes to hang out or helping clean his classroom. Not long after I was diagnosed my friend and I were helping him around his classroom. He had known I was sick and I told him I had UC. Next thing I find out is he has Crohn's. He was really helpful when I was trying different medications to find one that worked. He even said it is nice to know someone else who has similar issues. I also found out that a girl in chorus with me has Crohn's. I have never talked to her face to face but talk to her online. She was having trouble also and it is good to know there is someone there for moral support.

Only tell your friends what you are comfortable telling. A true friend will try to understand the best they can. I don't think my friends totally understood at first but they try. And there is always this board where all your friends understand what your going through.

:-)
Diagnosed 10/12/06
Daughter of Bennie
17 years old
Currently flaring for the 3rd time
Meds:
Asacol 4 pills 3 times a day
6-mp (100mg/75mg alternating)
60mg prednisone
Remicade start April 8, 2008


winkerblink
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 4/28/2008 6:11 PM (GMT -7)   
oh wow. thanks to all of you! that made me feel better. :-)

NEM
Regular Member


Date Joined May 2008
Total Posts : 30
   Posted 5/1/2008 7:58 PM (GMT -7)   
I have had UC since I was 15 (Freshman year). My suggestion to you would be to tell your trusted friends. Because remember, kids tend to spread information. So if you don't want your whole grade to know, only tell those who you know will be understanding about it.

I usually tell people I have inflammation in the intestines if i don't want to go into detail (Im in the same situation as you since Im in high school).

eliztopp
Regular Member


Date Joined Feb 2008
Total Posts : 46
   Posted 5/1/2008 9:48 PM (GMT -7)   
It can be really hard at first to tell people around you what is going on. It is totally normal to feel embarrassed about it, it is a very ackward thing. I let myself go 6 months without really telling anyone that something was wrong with me becuase i was embarrassed and then i ended up in the hospital and was fainting all the time... but any way. I was dx a year and a half ago, when i was a sophmore in college. And i couldn't tell people what it was for a long time, i just said the basics and left it at that. i found that once i started getting more comfertable with it i could say alot more and joke about it. I think that saying things as jokes really helps. Right now i am just coming out of a flare and i was put on a very strict diet (very hard to do in college) people would ask me what would happen if i ate things i wasn't suppose to or drank and i just replied "bloody diareia." and that shut people up. But it also really helped becuase then i found people were much more understanding and helpful. I relize at 13 that could be a very hard thing to see. But like everyone else has said just tell the people you feel comfertable with, and you may even find other people around that have it as well. I know there are moms on here whos children have UC so i hope that maybe one of them will see this and let you know how their children deal with it. Just know that other people are in your same situation and its not just hard as a 13 year old.... but it will get easier. I know that is hard to see, i hated hearing people say that, but just do what you can and those that are your true friends will always be there. (and you will go though life and keep some old friends and make new even better firends)
I am sorry to hear that you are going though this, i can not imagen it. keep your head high, you must be really tough!
 
{[lizzielu]}
age 20, diagnosed december 2006
meds: Asacol 400mg 4 pills 3x a day; 6-mp 75 mg; iron supplament; one-a-day; protonix; prednisone 15mg (tapper, down from 40mg started 1/1/08)
low residue diet
Remicade????-- if i can't get off of the pred.


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 5/2/2008 5:59 AM (GMT -7)   
I was 15 when I started getting sick and had just turned 16, got sent to the hospital for a month, and missed 3 months of school. Of course this was back in the dark ages (1961)......and the meds and knowledge were limited. No one talked much to me, but talked about me a lot...with that look of tsk, tsk.
Everything from poor parenting (which was not true) to diet to nerves was blamed. I felt like a freak and was embarrassed for years to talk about it. I never heard of the disease, and felt like I was the only person in the world. Thank heavens now there is the net and I hope the adults in your life can hook you up with school counselors, health counselors and other medical professionals.

I did come back from pan colitis to left side and went away to college and have lived a happy and productive life as a teacher. So don't think you can't have everything you want. You can do it all. But do use everything available, and understand that you can and will go forward.
Talk to people.....it helps. And adults can help you to deal with kids your age and explaining it to them
.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


dreamers
New Member


Date Joined May 2008
Total Posts : 11
   Posted 5/4/2008 12:18 PM (GMT -7)   
I was 14 when i was diagnosed!. I know exactly what you are going through. I only told my close friends. When i first started taking prednisone i had the biggest moon face ever. There was a website online at this time and when i got there all these people made fun of me. My friends stuck up for me of course. As the years went on I started feeling more comfortable telling people. Believe it or not people are more interested and care more than you think!!!. I know as a girl i dont go into detail as much with guy's. So i explain as briefly as i can. For instance, I ask people if they know what crohns is? and then basically say it is very similar. Or i say I have a ulcer in my large intestine, or everything i eat is bad for me and i get sharp pains and get really sick. If i am feeling brave i say well you dont really want to know and if they say yes i do. then i say lets just say i bleed from places i shouldnt. Then they are normally quiet but understand more. Sometimes I find it better just telling rather them asking why i go to the bathroom a million times a day. I hope this helped!!
**Stephanie**
 
23
Severe UC since 1999
 

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