Will it ever go away?

[SophNoph96]

I am a 15 years old girl and was diagnosed with Crohn's in early february. I started noticing symptoms around mid-december so after numerous trips to the doctors, I was admitted to hospital, were after many tests, I was diagnosed with a MILD form of the condition. Its been nearly 7 weeks now and I am finding it increasingly hard to cope. I take Pentasa (4g/perday), Peptac for when I have heartburn, Buscopan (2 three times a day), Lactlose (twice a day) and Paracetamol or Co-codamol when I need it.

Lately the effects of the Pentasa are really taking its toll. Over the past two weeks I have been experiencing muscle aches and spasms, headaches and excessive tiredness. I have also noticed increasing boughts of nausea and no decrease in the pain that I have been experiencing in my lower right side. I am very confused as to how I am feeling this way with only a MILD form. Almost all foods aggrivate the pain and I have completely given up on everything.

I am currently doing my 1st GCSE year in school and recently I have been absent a lot. The catching up doesn't bother me too much as I am very much up to speed on everything I have missed, but the strain of my condition is starting to affect the family.

My mum is very concerned about my school attendance and is starting to get stressed about my education. Her constant worrying is starting to stress me out also.

Ive completely given up on life at the minute. My family don't seem to realise that I'm trying to be strong, but the reality hits me every time that this is something I'm going to carry with me for the rest of my life! It hurts to see my friends going out and doing things and knowing that it will never be the same!

I applied for a job in my local shop, nothing huge, just a bit of part time work to keep me going. I seen the job as an opportunity to get back to a bit of normality, you know, to take my mind off things and be like almost every person my age, but mum seems to disagree. I have an interview tomorrow evening but she is refusing to let me go because she feels that if I'm not well enough for school then I cant have a job. I totally agree with her, but I'm trying to have a bit of faith and spirit and change the way I feel about this condition. I see the job as something to keep me going and give me an insentive to get back on track!



It would be greatly appreciated if someone would reply and let me know of your experience with Crohn's. I really just want to get back to the way things were, or as close to what they were anyway! Please reply ASAP!

Soph x

 

[Rebecca85]

I would go back to the doctor, and tell him how you are feeling. There are a few options- maybe the Pentasa just isn't for you and you need to change. Maybe something like a steroid, or enteral nutrition (where you don't eat, just have nutrient shakes) is needed to kick start your treatment.

It will get better, it just takes a little while to get your meds sorted! In the meantime, you could try keeping a food and symptom diary, see if you can identify safe foods and those that will cause you pain. Good luck!

 

[Manzyb]

Hi Soph,

I too was diagnosed at 15 years old. It's a hard enough time in itself and then have to deal with Crohn's on top of it can seem very daunting. I did hold down a job while I was going to school as well. I had to take a couple of months off from bothw hen i first was diagnosed, I was simply too ill to do anything. Once I was on the right treatment plan and things started to get better, I could slowly get back into cheerleading, school, job so and an so on. It doesn't seem possible at first, but you can make it work for you!! You just have to keep thinking that tomorrow will get better.

I agree with rebecca, I would go back to the doctor and see what else can be done if Pentasa just isn't your type of drug.

 

[SophNoph96]

Thanks girls! Im really pleased to hear from someone who knows what I'm going through! I've got a doctors appointment on Friday so hopefully that'll help! Really made my day hearing back for you and knowing I'm not alone! Thanks sooo much!
And ps. Sadie is such a cutie! x

 

[Chrismac]

Soph, I'm sorry you're having a tough time. I was 2 weeks into lower 6th when I was diagnosed and it was a nightmare. But a sense of normality will resume, it will just be slightly different as you get used to things.

When I was first diagnosed I was in hospital for 2 weeks, home for 2 weeks and got worse, in hospital another 2 weeks then home 2 more weeks recovering. I missed 2 months of school in total.
I also used to be quite fit, I'd cycle a lot and walk everywhere, once I was back at 6th form I cycled 10 minutes to my friend's house and proceeded to faint in her hall! I pushed myself too soon. I know it sucks, but be really careful about pushing yourself too far, allow your body and mind time to adjust. I don't mean give up everything normal, but ease yourself back into it..

Oh, and Mums worry I'm afraid.. that's what they do you could try telling her that you'll see how the job goes and if it's too much then you'll stop? (but make sure you DO stop if it's too much)

Don't give up.. keep fighting and try not to get too frustrated with your family as they come to terms with it too.. my mum used to write EVERYthing down every doctors appointment and ask 100 questions until my doctor had to politely ask her to leave so he could talk to me properly

Keep us posted with how you are feeling.. and make sure you rest when you need. Good luck with starting GCSE's. What subjects are you taking?

Christine