New to this and undiagnosed as yet!

[LouiseB22]

Hi there

I am 22 and the Doctors suspect I have crohns. I have had tummy problems for a 2 years now and was too embarrassed to tell anyone. It was only when I got a bad bout of mouth ulcers that my mum took me to the doctors and my health has very swiftly gone downhill from there.

I have symptoms such as sore lumps on my legs, very bad joint pain, inflammation of my eyes, sickness and nausea, lack of appetite and obviously going to the toilet constantly! My colonoscopy was originally booked for the 1st May but because I really haven't been too good they have moved it forward to Tuesday.

I am very nervous about this as it is my first one and everything is so sore and inflamed I am worried it will hurt! But I must say it will be a relief to hopefully get diagnosed and get the right medication as I am suffering!

It is nice to know that there is this support group and that I am not going through this alone. I find it hard to talk to my friends and family as I feel like I am just moaning to them when they probably have other things to think about!

So that is me, fingers crossed for Tuesday!

 

[Kip1]

Hi Louise
Welcome to the forum.
Hope they will be able to start you on some treatment soon as It is very difficult coping when you have so many symptoms.
Ask for sedation with your colonoscopy if your worried about pain as I did that & it wasnt as bad as I thought it was going to be. They will also give you gas & air if you need it.
Let us know how you are doing when you feel up to it.
Big hug from Helen :ghug:

 

[Angrybird]

Hello Louise and :welcome: to the forum. I am really pleased that they moved your appt up, whilst a colonoscopy isn't great it can show what is going on inside and biopsies tend to be taken which can help with getting towards a definitive diagnosis, the docs can also tell you some stuff straight away regarding what they have seen etc.

Really sorry that you are not doing so well hun, I will be keeping my fingers crossed for you on Tuesday. If your mum is going with you perhaps she can ask about the doc sorting a prescription for you straight away depending on what they find - they did this for me on my last scope because of how poorly I was.....

Keep us updated when you can.

AB
xx

 

[LouiseB22]

Hey, thank you both for your messages
It is really nice to know that there is this community here of people that know what you're going through!

I am definitely going to have sedation as I panic quite easily anyways so it is probably for the best! My mum will definitely ask the doctor if they can give me anything, so far the only thing I have been prescribed is codeine phosphate to try and take away some of the pain. The Doctor didn't want to give me anything for the inflammation as she said they might not gain an accurate diagnosis.

But thank you, I shall let you know what is said on Tuesday! I just have to get through the prep tomorrow night now... I am sure that will be a pleasant experience. I think I will end up sleeping in the bathroom!

Louise xx

 

[David]

Hi Louise and welcome to the forum I'm sorry you've been having trouble for so long but hopefully you'll soon get a diagnosis and be able to get on a proper treatment plan. We're of course here for you anytime. Please keep us updated!

 

[LouiseB22]

So I found the worst bit was the prep (that stuff is horrible!) I really struggled to get up at 6am to drink another litre... Made me feel so sick! The colonoscopy itself was quite interesting, I was watching what was going on on screen.

From my colonoscopy I was diagnosed with ulcerative colitis, so not crohns after all!
I don't know as much about this as I researched lots about crohns! But I am seeing my doctor today to hopefully get started on some medication.

So I am nervous about treatment as I have heard negative things about steroids but cannot wait for all this pain to stop!

Louise xx

 

[VanillaTwilight]

Hey, I feel your pain. Talk to me anytime. I would love to befriend you. Take care

 

[David]

Hi Louise,

Ulcerative Colitis is another form of Inflammatory Bowel Disease just like Crohn's Disease is. There's marked difference of course. I'm really glad you finally got a diagnosis and can now get on a treatment plan.

Are they giving you anything in addition to the steroids? I understand your nervousness around the steroids, but they should do wonders to knock down the pain you're experiencing.

 

[LouiseB22]

Hey
I am taking steroids, anti inflammatory tablets (mesalazine), a medication to prevent stomach ulcers and an enema medication at night time. I started last Wednesday so have been trying to adapt to all this medication!

At first they seemed to be having an effect, my joints became a lot less sore. But now if anything I feel worse! The tummy pains I am experiencing are more severe and my joints flare up with my tummy. I am supposed to see my consultant next week for discussions on how it is going and how we are going to continue but I get the feeling this isn't going to be easy! I am just trying to remain positive but having it alongside a Masters degree at university is tiring!

When you were first diagnosed and given medication, how long was it before you started feeling better? I suppose everyone is different!

 

[Dazzafarr]

Colonoscopy is an easy test so don't be worried.
Your only knocked out for 20 minutes and it doesn't hurt.
U feel a bit gassy afterwards.
It's actually a good feeling after maybe that's the drugs.
The prep is harder if you ask me lol.
Don't stress, you will prob have to have a colonoscopy every two years
Goodluck

 

[Dazzafarr]

Sorry, didn't read your below post.
Good work! You got a diagnosis

 

[David]

Everyone is indeed different. I'm sorry to hear your symptoms are getting worse I'm glad you have an appointment soon. It may be that you need other medications than what you're currently on. Please let us know what is decided and if we can do anything for you.