Hello im new!

Hello im new to this site i am a 16 year old female and just would like to share my story that i have had with crohn's.
I was diagnosed with CD at the age of 3 and i am now only 16, i haven't had very much luck with it either. When i wwas first diagnosed i was in the hospital for 1 year during that time i have had a blood transfusion, i was on a drip due to dehydration, i didn't eat much from what i can remember. I also had to go to school with a tube up my thoughtout my whole childhood i was not happy as i was kept an eye on constanley, i was bullied by a lot of people so bad i would refuse to go to school because of it :thumbdown: i didn't enjoy my childhood one bit.

anyway moving on, i was in remission for a few years :ybiggrin:, but now i am starting to think i may not be for much longer :ymad: how do i get it back under control as i'm not sure that anything is working??:ybatty:

i has made me feel a lot better now that i can finally let this out to other people that have this disease rather than keep it bottled up.

HorseLover!!

Hello and welcome to the forum It sounds like you have already gone through a lot and it's horrible that this disease has already had such an inpact on you life. What symptoms are you currently having and what is your doc giving you to try and help? Because of your age when you were diagnosed there may be some medications that they couldn't prescribe that could now be available to you... I don't know enough about the meds when it comes to being 'too young' to take them. There are however lots of poeple who I am sure can help with this so you have definitely come to the right place.

i am really sorry but can anyone give some advice on what to do? at the minute i am having to constantley run to the toilet and all im am getting is blood and mucus each time, i have lost my interest in food and i am tired a lot of the time, it was like yesterday i missed my bus because i couldn't get out of bed without getting really bad cramps when i tried to get up, i also get quite a bit of chest pain and while i was in college i vomited a lot. i'm not sure on what to do?

at the minute i am on suppositories and i don't like to say this but i have to wear a period pad because of how much diarihera(sorry about the spelling) i am getting. my doc tor thinks that the suppositories are best for me but i am starting to question him? he say that when i go for my next appointment he will disscuse with me what the next approach will be.

When is your next appointment with your doc? I assume this is the one at the hospital? I would get straight onto your GP in the morning and say you want an appointment tomorrow. They may be able to get you started on something to help with your symptoms. Steroids such as prednisone usually get used and can help make things better in a relatively quick space of time.Your GP may be able to help bring your hosp appt forward. I would hope they could get some blood tests sorted so they can check your inflammation markers. Depending on when you last had any investigations they may need to do some now so have a look at what is going on with your bowel. If you cannot get an appt with your GP it sounds extreme but if you are feeling bad enough and think things are getting really desperate get down to the ER and see if they can help. If you are being sick lots and running to the loo you are most probably getting dehydrated.

my doc hasn't yet given me my next appointment which is annoying :mad2: and they are at the hospital, but i am scared of the side effects from steriods from what i have heard they can be quite bad, i am already having many side effects from suppositories, i don't know why, i am also worried what i will get from steriods. my doc would normally send me the date oof my next appointement., but i am worried about telling about what is going on. :sign0085: :runaway: ale:

Try not to be worried about telling the doc/your family? about what is happening, they need to know. I would definitly get onto your GP in the morning, especially if you don't have an appt at the hospital yet. Alternatively get the number for the clinic and they should be able to put you in contact with his secretary so she can get a message to him that you need to be seen urgently - not sure if you would have a 'direct' number for him. There is always Budesonide which is a slightly better steroid to be on, the idea is they are for short term use to get symptoms under control while a treatment plan is sorted out.

Hey thanks for the advice and for being so welcoming, my mum has emailed his secretary and still hasn't heard anything so should i wait or is that not a good idea? .

That's ok, hopefully we can get you feeling better sooner rather than later. When did your mum send the email?

i think that she sent is yesterday?

I would say go to the GP first thing tomorrow morning, we have the weekend coming up and only tomorrow before everything stops for two days. Be really persistant, ideally it would be nice if the GP can sort a prescription that you could get filled at tesco's etc so you can start taking something tomorrow. They should also be able to contact somone at the hospital about getting an appt sorted with your GI doc. Let me know how you get on, I will keep my fingers crossed.

Ok thanks, I am really scared of telling my mum this might sound weird but me and my mum don't get on that well so if i tell her she will probably be angry for not telling her in the first place

Better to have your mum angry for a little bit than end up in the hospital and have her worried out of her mind.....

from experience, nothing good comes of hiding symptoms.....

Hey pasobuff, thanks for the advice, at the minute my mum kind of knows what is going on but doesn't knoww in full.

Hi HorseLover,

Yes, better to have your mum a bit angry than not get the proper treatment... My son is 17 and has Crohns and sometimes I get upset with him because he 'forgets' to tell me about a symptom or two :yrolleyes:... But, I'm only angry because I'm trying to make sure he gets the best treatment possible with the fewest side effects/consequences and I can't do that if he doesn't tell me about things...:ybatty: Let your mum know because she can't convey the urgency of getting an apptmt if she doesn't know what's going on.

But, I'm very sorry you're not feeling well! It must be so difficult to try to deal with school, etc. while feeling so unwell. :thumbdown:

HorseLover? You must ride??? My daughter rides (or did??) and absolutely loves horses! She's just started univ so hasn't ridden in about a year and misses it tremendously! Not just riding, but just being around the horses, caring for them, 'playing' with them, etc.

Let us know how you are... I hope you get to your doctor very, very soon and start on some treatment!:ghug:

Hi Tesscorm, i might seem really weird but i am one of those people who tend to keep things bottled up from other people , so i ill try and tell my mum but it is going to be really hard . It is really hard totry adn deal with this and have to make myself go to college especially when it is really bad.

I love horses i do ride sometimes when i can, im sorry that your daughter hasn't ridden i a while, if i was ever not able to ride or be around horses i don't know what i would do.

Thanks for the support i really appreiciate it

What they all said: you should not put up with those symptoms. Do you have an IBD nurse? have you swapped over from pediatric GI to adult yet? IBD nurses are your immediate friends, along with your GP. They should be able to expedite an appointment for you. Passing blood is serious.
So are you in sixth form college or something?

Hi beth, i have swapped over to adult and i do have an IBD nurse i will try and say something to her.
I am in college by the way

I have my IBD nurses email somewhere should email her when i find it???

I would email your nurse and explain your symptoms... The medication you're on may not be working and your doctor needs to know this. Let the nurse know what meds you've been using (and how regularly), explain your symptoms (when, how much/often), and how you're feeling. Explain that you need to see your doctor very soon.

If you're not able to eat, you are not getting any (or little) nutrition and may become dehydrated from the diarrhea. Try to, at least, get some nutritional shakes to drink in additional to what food you are eating until you can see your doctor.

Ok i will do that Thanks for the advice Tesscorm

Welcome HorseLover!
Everyone here is so nice and helpful. Your going to love it=)

Hi Wife2Crohns thanks your right everyone on here is really helpful and friendly