18 years old and having crohns is getting to me

[poorlygirl]

I am an 18 nearly 19year old female. After visiting the hospital for two years I was diagnosed with crohns february last year. Since then I was on infliximab and it mad me so much better but on my third infusion I had an anphalatic shock, I was then put onto humira and 100g Azathioprine but it seems to have had no affects after six months.
After having a special bloodtest, it turns out that I have developed antibodies to every medicine, resulting in me now having to have surgery. I am waiting for an appointment with the surgeon but it is taking so long and I feel like I am in agony all the time, I cant walk two minutes without being in pain, I never feel like I have any energy to motivate me to do my college work or learn monologues (i want to go into acting and I am moving to london in sept to study acting).
I hate it because I am now hooked onto lucozades to give me the energy I just dont have. Ive been feeling rather low about it at the minute and when I try and talk about it to my friends at college they seem to just be bored and that makes me feel bad and fo some reason I think they think Im justing playing on it, which makes me feel worse.
I guess Im writing this because at the minute I feel incredible low and even though I have dreamed of moving to London, now that it is becoming real Im not sure if I will be able to cope all on my own in the big city with having crohns constantly playing up. I just want to get better! I am fed up with being poorly!

 

[Astra]

Hiya poorlygirl
and welcome

Can your parents help?
Having a screaming insistant determined mad Mum on the phone to the hospital usually does the trick!
It helps to talk, but no one will understand your pain, but we do, hopefully you'll find comfort here with us.
Make that call, get your Mum on board.
Good luck xxx

 

[xX_LittleMissValentine_Xx]

Hello,
Sorry to hear you are going through this. I was diagnosed just before I was 17 and that was a really hard time for me. I know how it feels to be young and dealing with this illness.
I just wanted to say about lucozade. I drank it a lot when I had a stomach bug once and ended up giving myself diarrhoea, I think the amount of sugar in it can have a laxative effect. Maybe if you are drinking excessive amounts you should try cutting it out and see if it relieves any symptoms?
Just a thought.
Hope you get some relief soon.

 

[poorlygirl]

Thank you, I will try cutting it out and see if it makes some of my symptoms x

 

[rollinstone]

sorry to hear you're not doing well at the moment, before you go ahead with surgery, maybe you should look into LDN, as you didn't mention if you tried that, I have never used it myself, my doc wouldn't prescribe it, if i have to go off the aza thats the next thing i'm going to try, I've heard a lot of success stories on this forum from it, so maybe you should give it a go? anyway hope you feel better

 

[Maree.]

I'm just going to 2nd the suggestion about cutting back on Lucozade, it's got a PH of 2.5 which is the lowest of all the sports drinks. Perhaps take a look at the Diet forum for other suggestions of things to drink to help with energy that are going to be kinder to your digestive system.

 

[xSophiexx]

Hiya poorlygirl i was diagnosed last year too and have also had bad reactions to the meds so i know how your feeling! itll get better as Astra said get your mum on the phone they always seem to listen to mine. and btw i drink alot of lucozades too the main thing i worry about with it is its got sooooo much sugar so i try to only drink it if really necessary. feel better xx