What if they never find a cure?!! :(

[tlc-x]

I'm 16, a whole life a head of me. I've been ill for years and well, it's going no where

What if they do tests and find out it is just IBS.. or there isn't anything wrong with me? What if it is just in my mind?!

Panicking right now It just hit me that for the past year, all tests are clear and i'm scared.

I wanna be diagnosed so atleast there is actually something wrong, instead of being undiagnosed. And the sooner, the better because of my college work.

Crohns and UC run in the family. I've got a lot of crohns symptoms and my family agree that it is most likely crohns. A doctor did mention it once, but they're only going with blood tests - which are all fine.

I'm really panicking. I don't want to stay like this forever.

Unless I get a diagnosis, they can't help me, so what if they never diagnose me and i'm ill for the rest of my life?! I don't want that! Everything is suffering at the moment due to this illness and no one is helping!!!

Ohh I need a hug

 

[Cynthia-Christina]

Courage! it took a while for my blood cell count to show up abnormal so that my GI finally decided to run all the proper tests, even though I dont have a clear diagnosis yet, they still put me on some medication to relieve the pain. However, don't ever give up on yourself, if you annoy the hospital enough and get a few different opinions you'll surely find out what is going on!

 

[moogie]

Somedays are worse than others trust me I know.

Keep bugging your doctor and in the mean time change your diet, when I was in terrible pain I stopped eating and took ensure. Some relief.

Keep posting we are here to help!

 

[Astra]

Deep breathe Tash, you're hyperventilating!

If your doc listens to you tomorrow he will refer you to an IBD specialist, who will then hopefully arrange a scope, a small bowel follow through, MRI scan or a sigmoidoscopy.
We're used to our blood work coming back normal! It means nowt!
Mine is always normal!
But.. you have to convince the GP first, only he can make that referral.
If he's sensible enough he'll realise the connection with an IBD and your family.
He should also know that you don't bleed or lose weight with IBS.
good luck
xxx

 

[Tesscorm]

Hi Tasha,

I'm so sorry that you are going through such a tough time right now. I know it's really easy for me to say... but, try to believe that things will get better. My son was diagnosed when he was 16 (he's 17 now) so I have a small idea of how discouraging and frustrating this is for you (and how unfair!! :stinks.

I'm going to suggest you set up a 'game plan' for yourself... make a list of tests you need to get done, start a journal of symptoms and when you have them, etc. that you can show the doctor, etc. Keep a file/notebook of test results and what you discuss with your doctor (your requests, why, doctor's responses). I think, by doing this, you will feel more positive once you feel you have some control of your illness and are not just waiting for the doctor to do something. You will know that you are taking steps towards your end goal of feeling better!! You will have some 'side' steps :ymad: (i.e., more tests that do not give any firm answers, however, at least you will have baseline results for comparison in the future) and even these 'side' steps are moving you ahead! :thumright:

Have you not had any tests done, other than blood tests? Ask for a colonoscopy and endoscopy, ultrasound, MRE... Back up your requests for these tests with your journal of symptoms and family background. rder:

Do you have any other symptoms (other than intestinal)? For example, before my son was diagnosed, he had weight loss, fatigue, fever, mouth (canker) sores and night sweats. And if you search around this forum, you will find other symptoms (they're referred to as Extra Intestinal Manifestations, EIMs). Again, use these as another justification for additional testing.

(I recently asked a doctor for some testing for my son, the doctor kept saying it wasn't necessary and, I didn't get mad at him but whatever answer the doctor gave me, I just kept saying... 'yes, but I know this test will show me this...' 'yes, but I think it can help me by ruling out...' 'yes, but...' :lol: I think he finally got so sick of me saying the same thing :angry-banghead: that he gave the test requisitions... So, be persistent! And, it may take more than just one appointment.)

Have a look through the Forum Wiki - tons of info you can use to justify your demand for further testing. Some of the info you can find in the Wiki includes explanations of tests and their results, EIMs. There are also suggestions of what you can include in your journal (see this link - http://www.crohnsforum.com/wiki/Diary-Inclusions).

I hope this helps a bit. :ghug: :Flower:

 

[tlc-x]

I've had an ultra sound, but that found nothing.

Joan told me a few days ago to keep a log of symptoms, triggers, time etc and I have done. It's a long list. I'll print it out and take it tomorrow.

Here's all the other symptoms.
Itchy, dry eyes
Stomach pains
Pain on top left, by ribs
Sleeping 15 hours roughly per 24 hour cycle
Weight Loss
No appetite
Days without bowel movement
Feeling sick
More thirsty than usual
Sensitive stomach
Fatigue
Bloating
Cramping
Joint aches and pains
Rash
Random food cravings
Blood once when wiping
Burning in stomach
Occasional popping and bubbling feeling in centre of stomach
Back aches
Headaches
Uncontrollable shaking
Very pale
Magnified sound sometimes
Sore bum
Can’t push when I do have a bowel movement due to pain in stomach
Lack of energy
Feels as though knees swell up
Nauseas
Really hot and cold at the same time
Gassy
Feverish
Twitching in my stomach
Slight loss of bladder control
Night sweats
Dehydration at night


I feel like a hypochondriac with that list.

When we said about the family history, all my doctor did was send me for another blood test. Grr!

I'll defo update tomorrow after the appointment! Kind of nervous. This flare up has made my stomach really sensitive, and she's gotta poke and prod at it and that's gonna hurt more!


Thank you all. xx