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Im 13 and I've just been diagnosed.

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Ulcerative Colitis
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Posted 10/6/2012 1:14 AM (GMT 0)

Hello everyone. Im 13 years old and around a week ago on September 26th, I was diagnosed with Ulcerative Colitis. I was having blood in stool for about to two months off and on; I was having intense abdominal pain almost right below my belly button that would make me want to collapse from the pain. The pains also were releaved by using the restroom. My parents and I became very concerned and went to go see a GI Doctor. She told me that she would like me to get a flouroscopy, (not sure if thats what it is but I had to drink a disgusting white drink that had barium in it and had neumerous x-rays) Endoscopy and a Colonoscopy. They didnt find anything with the flouroscopy or endoscopy, but with the Colonoscopy, they found that my colon was severely inflamed with many ulcers lining my colon. They told me whenever I just woke up so I wasnt even conserned. Whenever I started to look around on the web about Ulcerative Colitis, I understood the serverity. It kind of depressed me for a while and still is a little bit. I'm sad i have to manage my diet and not eat the things I love. My doctor was very shocked that i was rather young being diagnosed with Ulcerative Colitis considering she said it usually affects late teenagers and adults around 30- 65. I was also hospitalized, i forgot to mention, the friday before i found out because i had gotten some blood work done to find out if there was anything in my blood. They found out that I had a low hemogloben count of 6.5 out of 12.5. They told me as soon as the found out and wanted me to go and get an emergency blood transfusion. I was scared to death and crying cause i thought there was something really wrong with me and I was going to die. What scared me the most were the needles... cry The nurses calmed me down and at around 2:30 A.M., they gave me the benedryl through my IV and I fell right asleep. It felt weird to have two other peoples blood inside of me. Then I relized how anemic i had become by loosing blood through my ulcers, I had a ton of energy and felt 10 times better. Now I am curently taking prednezone to help with the inflamation and the iron pill to help with keeping up my blood levels. I have been a little bummed about it and I was just curious if anyone could help me out and give me some advice on how to manage it well and how to deal with it. I hope things don't get to bad. I was also curious on how to manage it so none of my symptoms happen at school. I wouldn't be embarresed if people at my school actually could act mature about things. Please let me know your thoughts and suggestions. Thanks for your time. It would really help me a lot for you opinnion and ideas.

Posted 10/6/2012 1:29 AM (GMT 0)
I don't have much suggestions to you apart that from at this moment start following your doctor's prescriptions.

Start with that first, don't go into the diet this and diet that and voodoo magic this...step by step.

Forgot to mention....this disease is misery. "Based on a true story"
Posted 10/6/2012 1:39 AM (GMT 0)
Hi Christian. You came to the right place!

I think your doctors are doing a good job taking care of you. Tell your parents about this web forum also, I am sure they are very worried about you. There are other parents here, and even some older teens that you might hear from, and adults who were diagnosed as teenagers. One of my daughter's friends got ulcerative colitis when she was 10, so you know you aren't the only one to have this problem.

I think that you should learn a bit more about the medications you are taking. Prednisone is a powerful anti-inflammatory, but it can sometimes cause problems like making you hyper, or perhaps making your skin break out. You probably won't be on it very long - doctors don't like to give this drug to kids but sometimes it's necessary because it will get the inflammation down very quickly. After you're feeling better - maybe next week even, you will talk to your doctor about other medications that will be a part of your life and hopefully keep you healthy.

I realize that many people think because you have a disease in your bowel you have to change the way you eat. I don't really think that is true. There are conflicting theories about that. But what is true is that some foods might make you feel worse than others. You can keep a little private journal and record what you're eating and how you feel, and how your poops look (ask your DR about the Bristol scale, it will crack you up, or maybe horrify you - I suggest laughing!). You will probably figure out some things that are bad. Of course, all of us here will tell you that junk food is definitely not going to help you feel better. Lots of your friends will find the thought of avoiding junk food really stupid, but when you realize how much better you feel without it I bet you won't miss it much.

So to keep yourself from having problems at school, the best advice is to take your medicines as directed, and eat healthy foods that don't bother you. Welcome, and sorry you have gotten this illness.
Posted 10/6/2012 1:48 AM (GMT 0)
First of all, welcome to the site. One important thing to remember here is never be afraid to ask any questions, no matter how embarrassing or gross you may feel they are. We've all been through it in one way or another so we know where you're coming from. I'll start here...first off you'll have those "why me" days...you're going to have bad days and good days and unfortunately with this disease there's really no way to predict what kind of day you're going to have. I've been completely fine one day and the next day I'm on my knees in pain from cramping. Just do your best to not let this disease mentally beat you...no matter how bad your days get. In regards to diet...you'll find plenty of info on here on different diets that people have tried. For some people diet helps control symptoms and for some (like me) I still virtually eat anything without making my colitis worse or better. I tried many diets when I was first diagnosed 10 years ago. Everyone's body is going to react differently. Some will find specific foods that set their colitis off and make their symptoms worse. It's going to be trial and error for you. I also understand about your low hemoglobin...I've dealt with that off and on over my years. I'm currently very iron anemic but my hemoglobin is fine. I'm in the middle of 6 weeks of iron IV infusions to try and get my levels back up. In regards to the needles...trust me you'll get used to them. I couldn't begin to tell you how many times I've been stuck with needles over the years. I'm sure plenty of people will tell you how terrible Prednisone is. It works great for a lot of people but understand that drug has terrible long term side effects. I would suggest you educate yourself on those and I only hope you're on it short term to control your current symptoms. There are a WIDE range of drugs to control your symptoms ranging from mild to extreme. As an example, Prednisone has caused osteopenia in my hip and lower back bones. That drug does tear your body down over the long run. I would highly suggest to discuss different treatment options with your GI and search here for other options that people have tried and find successful. Honestly there's really no set "Protocol" that will help you at school. You just need to find what medications/diet etc that work to control your symptoms. Unfortunately this disease can show it's ugly head at any moment and you'll be looking for the closest bathroom. This isn't to scare you in any way but it's the "nature of the beast" with this condition. I will tell you that people that don't truly understand Ulcerative Colitis will never truly know what you're going through. I got absolutely tired of co-workers constantly asking "should you be eating that"...thinking that my diet caused my condition. You'll find in time who you'll be comfortable in telling about your condition. At this point in my life after 10 years...I virtually have no fear telling anyone what the details of the symptoms that I've gone and go through. The best thing to do now is search this forum and read what you can...talk to your GI about all treatment options. Some doctors like to go to the extreme end of medications and start there instead of going with the easier ones first. Again, if you have any questions, NEVER be afraid to ask.

Post Edited (blksteeda) : 10/5/2012 7:53:08 PM (GMT-6)

Posted 10/6/2012 12:10 PM (GMT 0)
Wow. You're 13? You sound so much like an adult. Unfortunately, things like this can make you grow up fast. Hopefully you won't be on prednisone very long. It's not a good drug for anyone to take but it can affect the growth of children. Your doctor must know this and doesn't plan on keeping you on it for very long but you might want to run that by him just in case for some unkown reason he doesn't know it. Hope you feel better soon.
Posted 10/6/2012 12:51 PM (GMT 0)
Thank you very much 'somedude', 'kazbern', and 'blksteeda'! I really, really appreciate your adivice very much. Im kind of happy that im not the only one with this disease and there's people i can talk to; Yet I wish no body else has it because it just sucks so much. :l (To Kazbern) The only side effect im having from the prednisone is that i have jitters and I feel random outbreaks of rage that i didn't have before. Hopefully I wont have any long-term side effects from the medicine. My Doctor wants me to take 20mg which is about 8 tablets of predisone a day for 1 month, so I'm not sure if thats a long or short amount of time to be taking it. I have been keeping a food log that tells the amount of stress im under, when i feel bloated and have cramps, and if there is any blood in my stool. Also, yes! my Doctor did ask me 'what my poops look like' and gosh i could not stop laughing for 20 minutes and after she left the patiant room i was still laughing. xD After I had numerous appointments i didnt find it as funny though. :P Not eating junk food won't be a problem because if im craving a big mac, I'll jsut think to myself, 'do you want to bleed and worsen your ulcers?', which will make me crave something more healthy. I also have figured a way to not have cramps or any pain in school is that I use the restroom in the morning so I won't have any bloating or cramps. I won't force it though if i dont have to go cause that will probobly hurt me more. I also try to avoid high starchy and milk products with my school lunch because that causes me to be bloated which increases my cramps. Thank you for you advice :) (To blksteeda) I'm trying to watch what I eat by keeping a food log and seeing what bothers me and not. Hopefully not that much stuff! Also, jsut out of curiosity, are your iron levels so low you have to go straight to IV infusions? Cause they have me takeing Iron pills which I'd rather take then getting needles poke into me! I have gotten a little used to the needles though because my doctor wanted me to get a Influenza shot sense my Immune System will be weakend from the medicine; they gave me the shot and I thoguht to myself, 'Are you going to give me the shot...?' and i saw she was done! The prednisone they want me to take 20mg which is 8 tablets for a month. I hope that isn't that long of a time for it... I'm also kind of afraid to go hang out with my friends at the park or take a walk with them because I'm always afraid and nervous that I'll start having these cramps and be laying on the ground in pain while im there; theres also no bathrooms at the park so if i have to use the restroom really bad, no where to go! So this problem has also hurt my social life. My friends never understand why I can't hang out. It does kind of make me sad. I'm thinking of going to my school guidence counciler to talk about it too. Thank you very much for your help! I will try to look into foods that are good for my problem!
Posted 10/6/2012 12:57 PM (GMT 0)
(To Garrylouisville) Haha, I try to be professional and polite on the internet as best I can. :P I have noticed that yes, I have had to grow up faster then i wanted. I see all these people at my school who dont have this problem and I'm jealous they can have fun and not worry about things all the time or have to worry about taking pills and all that fun stuff. Also, I'm only 5'3 which in my opinion is short so I hope the medicine doesn't stunt my growth! :( Thank you for your advice!
Posted 10/6/2012 2:53 PM (GMT 0)
Yes, my iron stores in my body are currently at 7. I'm actually on my 3rd 6 week round of infusions and they're not going up. I've tried pills in the past but those take SO long to build up in your body. I was on the Neferex iron pills from the pharmacy for 3 months and it didn't make one bit of difference. Also, make sure you have a full stomach when taking any strong iron as it will turn your stomach as it's very hard on the stomach.
Posted 10/6/2012 3:36 PM (GMT 0)
Not eating junk food won't be a problem because if im craving a big mac, I'll jsut think to myself, 'do you want to bleed and worsen your ulcers?', which will make me crave something more healthy.

The thing is, vegetables can scrape and irritate your insides just as much as a burger and chips can. My advice about diet would be to try not to worry about what is healthy and non-healthy: particularly as there may be times during flare-ups when you need the calories that healthy foods won't so easily provide.

Try lactose-free dairy products if you feel milk worsens your symptoms. I dunno about where you live, but in the UK, which is where I'm from, all the main supermarkets have a lactose-free range of dairy products now.

Best of luck to you, dude. I never like seeing youngsters diagnosed with UC or Crohn's, but hopefully you can get your disease into remission and keep it there.
Posted 10/6/2012 5:41 PM (GMT 0)
I think it is a hugely great idea to keep a food chart. That is more important than anything because you really can't believe anything anyone tells you anywhere (including the doctors) about diet recommendations. Everyone is totally different. Me and several others can eat Big Macs and fries and it really doesn't bother us while others can't even look at them without having a flare (little exageration). My doctor put me on a lactose free diet right at the very beginning. I was on it for two months before finally figuring out that it did absolutely nothing for my UC. I can eat most all lactose without any problems or little problems but for some reason I do have a problem with cheddar cheese. That is a wrong choice 100% of the time. I can drink caffinated carbonated drinks with little problem but if I drink too much water it can give me a lot of gas. Go figure. I hope at some point not only will you be doing much better but that you will be able to eat regular foods from time to time without regretting it.
Posted 10/6/2012 8:24 PM (GMT 0)
Christian, I hope that you will be successful with the treatment plan and get to the point where you don't have to worry at all about cramps or bloating or emergency trips to the bathroom. Then your social activities will be the same as your friends'. That's the goal and you and your DR should keep that in mind.

20 mg/day of prednisone is not very high. That means those tablets you're taking are 2.5 mg/each. That's a small pill! Once your symptoms subside you will start a taper, which means you will reduce your dosage over a period of a few weeks. Don't do it all at once - that will be bad for you.

The mood swings and jitters will go away when you stop taking the prednisone. The biggest issues with long term use are loss in bone density, adrenal failure and damage to your joints. You're not going to have any of those with a 1-month plan.
Posted 10/6/2012 10:52 PM (GMT 0)
Yep, gary is right - everyone really is different when it comes to diet. And most 'junk' food is not nearly as worthless as people make out - a McDonald's meal is actually high in protein and will have some vitamins and minerals. Even foods with simple sugars only and no nutrients - fizzy pop, candy - are considerably better than nothing. Your body can survive without nutrients for a long time, if it has to, but it can't survive for very long without energy. Which sugar is.

Sorry if I seem like I'm going on about it. I just want you to enjoy food as much as UC allows you to, and not turn it into something to be frightened of.

Speaking for myself, I don't have any entirely forbidden foods, but I do tread carefully around most vegetables, spicy foods, certain fried foods, and probably a few other things which elude me. I do all right with lactose and gluten though.
Posted 10/7/2012 1:39 PM (GMT 0)
Hi Christian. I'm sorry that you've been diagnosed so young, but you sound like you have a good head on your shoulders (and you're restoring my faith in young people and their writing skills yeah ).

Is your GI at a large hospital, one associated with a medical school? If not, you should see if you can go to one--they have much more experience there. The fact that your GI says that UC is diagnosed at 30-65 and didn't prescribe you a 5ASA (it works as an anti-inflammatory) worries me. UC, and Crohn's, are young people's diseases--most people are diagnosed in their late teens, 20's and 30's. Also, ask your GI about going on a 5ASA. You shouldn't just be on Prednisone--it's a short-term solution; you should be taking rectal meds, Rowasa or Canasa, to decrease the inflammation in the beginning and need to be on an oral maintenance med as well, like Asacol or Lialda (which are all a part of the 5ASA drug category).

You've received good advice so far--don't stay on Prednisone too long, keep a food diary as diets vary from person to person. I wouldn't jump to iron infusions just yet. Like you, I had to get blood transfusions at the very beginning (I believe my hemoglobin level was around 4). After two blood transfusions and 3 months of oral iron supplementation, my hemoglobin went up to 11.

You and your parents should definitely talk with your guidance counselor. Let him/her know that you have a medical condition, you may have to miss school for illness or drs appointments, you may need to use the bathroom a lot, etc. Take a look at this website: http://www.nhlbi.nih.gov/health/public/lung/asthma/guidfam.pdf.

Also, take a look at ccfa.org. They have a ton of information and list of support groups.
Posted 10/9/2012 1:48 AM (GMT 0)
One of the great things about this forum is the diversity here. Sorry you had to join the club though.

My daughter was diagnosed just prior to you just shy of her 12th birthday. Unfortunately IBD has no age group it picks on. Just try not to give up. A friend of mine showed me a blog that was good to read from another teenager. http://nocolon-noproblem.blogspot.ca/ It may help you to blog about what you are going through. My daughter has been turning to art. Find what works for you to get you through the tough times. Let me know if you find any teen groups online. There are lots on tumblr to read on for support too!

So far she hasn't figured out how to not have her IBD affect her at school. Because of this, she has permission to leave class WHENEVER she needs to go without waiting for the teacher's permission. Everyone at her school knows because she was hospitalized during the beginning of school. She says kids & teachers knowing helps because she doesn't have to keep explaining. She wore her hospital bracelet like a badge of courage her 1st week back. Even kids she thought were lame seem to be cool to her after coming back from the hospital. Rely on your friends to help you through too.

Her best suggestion: always pack an extra pair of underwear, wet wipes, & bring your backpack into the washroom always whether you need it or not. Then no one wonders why the one time you need it you bring it with you.
Posted 10/9/2012 3:29 AM (GMT 0)
Hey man, I was 13 years old when I was diagnosed as well. I'm 22 years old now so it's been almost 10 years now. You'll def have ups and downs and it certainly won't be easy. Maybe you'll be lucky and have the medications work wonders for you. If you ever want to talk message me on here. You can also email me at [email protected]
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