Undiagnosed crohns disease

[sammy0461]

diagnosed crohns disease (16 years old)

it has been a year now that all these symptoms have started but i think i have it. it started with diarrhea (10-20 times a day). anything i ate, i was in the bathroom 30 minutes later. i was 15 when this first started. now im 16 and i have been going to the doctors for blood tests and other tests. from all these tests i have been missing a lot of school and no teacher understands what im going through so they yell at me for missing. im so behind and my grades are just passing (51). in the next few months, i am supposed to go to the doctors and get a camera inside me to look at my intestines (dont know what its called). im scared to do that because i dont want someone near my bum (lol). this past week, i have been feeling very sick and i cant eat. everytime i go to look at food, i feel like im going to vomit. last night, i did but it was only that once. i havent been eating properly for a week. ever since i first started getting sick (year ago) i have felt so tired and i havent been doing well in school with homework. is this natural? people call me lazy but no one knows whats happening with me. i also i have no friends so i sit at school alone and i have no one to talk to. so basically my life is going downhill.

 

[Hobbes650]

Hi Sammy!

Hang in there! Getting scoped will allow the doctor see see exactly what is going on. Unfortunately, you may also get a scope down below in your doctor's office, called a proctoscope. You will be asleep if they peform a full colonoscopy, so you won't fell anything. If only looking inside the rectum, you'll be awake and you'll experience cramping and the urge to take a big dump. It doesn't last long though. Sounds like the colonoscopy or a scope inside your small intestine is what's needed- and in either case they drug you first so you won't feel anything. Getting this figure out is often the hard part, and you need to be scoped so I hope that happens sooner than later for you. I was 18 when diagnosed with ulcerative colitis, and about to graduate so I didn't miss classes- but I was certainly delayed a while from going to college. In that sense, I was fortunate. IBD can certainly be more severe getting it as young as you, so do try to get that figured out early. Once it's figured out, the recovery begins. Your story is very normal, rest assured. People will not be able to tell that you are sick just by looking at you, and so they won't know and just assume you are lazy. Don't worry about them and don't take it personally- they are probably just ignorant, not mean. Don't eat if don't feel like it. Do try to keep your fluid intake up. Drinking gatorade, or some kind of sports drink will keep you better hydrated since they contain potassium. Good homemade recipes can be found online for making gatorade yourself- I do that every day and it's nice and easy. Maybe some naproxen or other over the counter pain killers would help too.

Your school needs to know what's going on, especially once the diagnosis is made. You may not have much time to get to the bathroom and you don't want some ignorant teacher saying you cannot go.

Lots of good stuff on this board about diet, so do look around. If you don't feel like eating, then don't eat, and don't let anyone say you have to. Sometimes it just hurts too much and you don't need to explain that. But do try to keep your fluids intake up- that will help at least.

Hope you feel better soon, and please keep us posted!

Hobbes650

 

[Clash]

Welcome to the boards Sammie! So sorry though that you have to be here. My son will turn 16 this year and he was diagnosed back in March. He wasn't too thrilled with the idea of the scopes either. He had a endoscopy(through throat to stomach) and sigmoidoscopy(goes just inside your bum) and later a colonoscopy(through bum and colon and very first part of the small intestine) The doctors used what is called concious sedation for these, it is a type of sedation that doesn't put you completely under but he isn't aware of the procedure. So he doesn't remember any of the procedures.
In relation to school, he also missed alot of days. We applied for a 504 plan, possibly Canada has a similar plan? If they do it just allows for all of his absences due to his illness and allows for extra make up time for work. The part with friends can be hard and I am so sorry you are going through that right now. There is a teen forum on this site you might want to check out. I hope you are able to get a diagnosis and treatment soon!

 

[dannysmom]

Hi Sammy,
My son is 15 and has been sick and undiagnosed for a while, like you. He does get tutors that come to the home - without that he is not able to go to school all day due to fatigue and would also find it impossible to pass. I hope your parents and doctors can get the school to support you more.
My son had the pillcam and it was pretty simple. He swallowed it no trouble and just had to wear a belted on small bag for 8 hours. He is also put to sleep for any scopes - which is much better than being awake I think.
I hope the doctors can make you feel better!
I am glad you joined the forum .... there are lots of teens that post too. You are not alone in this. (There is also a teen forum & and undiagnosed forum too!)

 

[David]

Hey Sammy! Thanks for joining and sharing your story! I'm so sorry you're having trouble and nobody seems to understand

You mentioned that you're getting some tests in the next few months. Do you think if you talked to your doctor about how you're feeling right now that they could move those tests up? I think that would be a good idea.

We're here for you any time!

 

[sammy0461]

update:::: i went to the doctors yesterday through the emergency since i really couldnt eat or do anything. they said they will try to move up my testings earlier. they also gave me this weird mixture of things for the bumps in my mouth. about school, i will probably not go for the next 10 days that are left and go to the exams.

 

[momofzach]

Hi Sammy,
I am so sorry that you feel isolated and alone. Please always remember that high school is such a small part of your life, even though when you are going through it, it feels as though it will never end. I can't imagine being so sick at your age, although many on this site can relate and will be very helpful. I pray that you find out a diagnosis and get treatment really soon. You hang in there sweetie, you are not lazy, you're sick.

 

[Gculk]

Yo kiddo,

Going in with your parents and have a chat with the principal of your school might be a good idea? At the very least it'll give you someone to go over your teacher's heads to if they start being pains.

Feel better,
Nathan

 

[Raleigh]

I agree, you should go to the principal. Your teachers have no right to yell at you when they have zero understanding of what you're going through. And shame on them for doing so. Life is too short to let ignorant people push you around. Good luck, and keep us posted.

Brian

 

[sammy0461]

update::::::::::: my mom went to talk with my principal and he is very understanding. he said he will not make me go to school for the rest of the year and he will try to get me my credits for each class. 2/4 teachers already said i passed and i dont need to be there. the other two arent very understanding and will probably fail me but oh well, i always have next year.

 

[momofzach]

That's great Sammy, and if the other two teachers decide to fail you, which I doubt they will since your principal is looking out for you, please have your mom talk to them before you give up- you don't need that stress. Try to relax and heal this summer!

 

[sammy0461]

update::::: on wednesday, i went for a colonoscopy and endoscopy. i went back to the doctors yesterday and my doctor said i do have crohns disease. she sais i have to take prednisone but then i read the side effects and i really dont want to. it says facial hair which is one thing i dont want. does everyone get facial hair when on prednisone? im scared to take it. also it says bone damage? i was supposed to start it today but didnt. im also taking prevacid which i dont know if it has any side effects.

 

[David]

Hi Sammy,

Steroids are such a double edged sword at times. They work great for knocking down the pain and inflammation but can indeed lead to side effects for many. As such, I understand your concern We have a subforum dedicated to steroids if you want to read about others' experience and ask questions if you have them.

 

[dannysmom]

Thanks for the update. Did your doctor say where your Crohn's is located? I do not think that everybody gets every side effect. Do you know how long the prednisone treatment is planned for?

 

[sammy0461]

update::: im not sure where it is. i have a bad memory :S also im not sure how long i was supposed to take the prednisone and i still havent taken it. im not going to start taking it either so my mom called my doctor to see if i can get something else. i know this doesnt really have to do with anything but about a week ago i realized a lump on my left side of my throat. i dont know what it is...

 

[cecilialynn]

HI sammy0261. I have been on prednisone for just over a yr which is not too good, and i am slowely being weened off it. There are side effects. I had to pluck my eye brows more often and i even ended up with a clown face for a while, and im wayyyyy older than you so my bones need all the help they can get because it does make the bones brittle. BUT i am real glad the preds have helped put my crohns in remission. Im at 20 mg per day and i drop 5mg's every 2 wks. Deffinitly talk to ur specialist to help quell ur fears. Otherwise thinking of you and hoping u have a quick recovery.

 

[sammy0461]

update:::::: so i have been taking prednisone/prevacid for around 3 weeks now. my cheeks are puffy and my stomach always feels/looks bloated and big. my sister even said i look pregnant (lol).... what im really worried about is going back to school in less than a month. by the time i go back, i should be down to 4 pills a day but im still gonna look big. i really dont want to go looking fat because its all in my stomach, face, and hips (love handles i think?) anyways, i have been trying to exercise maybe every 2-3 days but its hard for me. also i have been trying to read calories and sodium in everything i eat but i end up eating around 2000 calories everyday and i always go over my sodium limit too. and i should be having more potassium but its hard when i dont really have high potassium foods in the house.

 

[sammy0461]

update:::: forgot to add that i am supposed to take vitamin d pills everyday but my mom bought me vitafusion multivites instead. is that enough or should i get a vitamin d one?

 

[David]

A multivitamin will have nowhere near enough vitamin D if you are indeed deficient in vitamin D.

 

[dannysmom]

How do you feel? (other than the weight gain) I am hopeful the pred helped!! Some weight should come off when you ween off the pred and your appetite should also go down. Thanks for the update and good luck at school

 

[sammy0461]

update::::: i feel fine i guess. my stomach is like a giant balloon and its hard. i have school in two weeks and im freaking out. im down to 7 pills right now and will be onto 6 in 2 days. by the time school starts, i should be on 5. i dont fit into any clothes and i just cant stand the way i look right now. i barely leave the house. i try to exercise but it hurts and i never have enough motivation so i just give up.

 

[Hobbes650]

Definitely a familiar story with Prednisone. I am back on since entocort did nothing, and the side effects of Pred are much better than the abdominal pain without Pred. Lousy choice though. Ditto the vitamin D note from David. Taking extra mutli vitamins wouldn't hurt though, but do what the doctor says. I find exercise helps a lot, but I don't do anything hard on my legs and knees since they hurt enough already. That is, I do cardio workouts on an eliptical machine instead or jogging, or even a treadmill. Swimming would be great, just not my cup of tea. A couple of tylenol a few times a day may help the pain (works for me anyways). Sometimes I even take a mild sleep tablet (over the counter) during the day and that alleviates the "jumpiness" I get from the Pred, but not when I'm at work though. Good when I get home or on weekends. Some comfort is knowing that all the pills you take is just for now- at some point you're going to get better, take less pills, and feel much better. The ride gets bumpy, but it does move forward.

 

[Leese]

update::::: i feel fine i guess. my stomach is like a giant balloon and its hard. i have school in two weeks and im freaking out. im down to 7 pills right now and will be onto 6 in 2 days. by the time school starts, i should be on 5. i dont fit into any clothes and i just cant stand the way i look right now. i barely leave the house. i try to exercise but it hurts and i never have enough motivation so i just give up.

The fact that you "feel" fine is good news Sammy - I'm happy for you I can totally relate to the giant hard balloon stomach thing though! I have Endometriosis and Adenomyosis as well as Crohn's - these are all good at causing a very swollen tummy So I'm a 5" 10' slim chick with a swelly belly most of the time! Oh how I understand you :thumleft:

Try not to get too hung up on the tummy thing - you are still at high school (by the sounds of it) and going back to school from your summer break, you will notice how many of the others in your classes/year will have "put on weight" or gotten "bellies".

There are a lot of meanies around who will pass comment / judgement about unimportant things such as the appearance of people's tummies - but truth be told, these shallow meanies wouldn't be able to cope even a day in the life of someone like yourself, especially in dealing with your daily struggles with Crohn's.

Being a teenager is fricken hard, and high school is also bloody hard - but neither last forever And if you try to stay as positive as possible (hard sometimes, I know!) you'll get through it Lean on your parents and sister for support if you haven't got the support of your fellow classmates. And we're always here to listen if you want to talk too xx

 

[michaelearnest]

Hey Sammy - you have a ton of new friends on here as you can see now. Sometimes and alot of times we all have belly's. We are on your side and you can reach out to us anytime you need to. Sending all the luck in the world your way.