"not a flare up" I dont agree..

[Ki3]

So yesterday I was fed up and went to the hospital. I am meant to be in remission but I am getting every symptom. My actual doctor (who is terrible, we are searching for a new one) is on holiday, so as she is so bad, I thought I would be in safe hands of other doctors. I was wrong.

They took some blood, said the inflamitory markers are ok, so its not a flare up, gave me tablets for indigestion and sent me home. Indigestion. Are you kidding? As far as im aware, indigestion doesnt cause ALL the symptoms. It can't cause mouth ulcers, joint pain, fatigue, loose stools and colon ache. Maybe stomach ache, but joint pain? Mouth ulcers?

Im getting so frustrated. I have been having symptoms since June. Its September and they still won't believe me. I should be at school considered my GCSE options not laying in bed crying. I was so moody yesterday I deliberately missed out taking my pills. Im thinking of just making myself ill just so they help me because im not in f*cking remmision!!!!!

 

[Jennifer]

I'm sorry Ki3. I really hope you can find another GI soon. The medication you've been taking may be helping to slow things down but clearly sounds like its not enough. Stopping it completely may not be the best course of action however I understand your reasoning and frustration.

If possible could you find a doctor who's willing to run other tests such as a colonoscopy, MRI, CT scan etc? Blood work isn't always the best test out there. We know our bodies best so hopefully you'll get some proper tests done soon to get some real answers. Could you possibly play up your symptoms a bit more to make a doctor more willing to run some sort of imaging test rather than going by blood work alone? I'd hate for you to deliberately make yourself worse by stopping meds which may be helping some. Keep us posted. *HUGS*

 

[Ki3]

I dont know if I could ask for another doctor really as I see the same one as he is best at that hospital apparently. There is another doctor there who was the one who takes me seriously and he basically saved my life with two MRIs that got me diagnosed and found a perferation, but he is just a kids doctor not a GI so I dont get to see him often

Im thinking of eating foods that upset me, so that way im not exactly diss obeying them for not taking pills. Hopefully they will hurt my stomach, I can prove its not indigestion and they might take me seriously. They have asked for a stool sample so that should proove something too. I just dont want to be told im in remission when im clearly really ill

 

[valleysangel92]

Hello hun, I'm so sorry you're going through this still, I know you've had a rough time recently.

You are right, indigestion alone wouldn't cause all these problems and I agree with Jennifer, you really need a GI that's willing to do some other testing. It may be as simple as adjusting the dose of your meds to make them work better for you.

Please don't stop your meds though, doing that is really dangerous and will cause more harm. They may be having a minimal effect so it's important to keep taking them. Keep on at your doctors, go to the GP, call the ibd nurse, whatever it takes but don't stop the meds. Hang on in there, we're all here for you!

 

[Ki3]

Thanks but being only 13 doesn't help in the world, I basically dont exsist. I can only keep on at my parents to talk to the doctors for me, but they seem to be more on the doctors side saying that they know best. I can't ask the doctors can't ask my family, I have never even heard of an IBD nurse so there is no hope in anyone listening

 

[valleysangel92]

I used to talk to my doctors all the time, they have yo listen to you it doesn't matter how young you are, it's bad practice to ignore anyone just because they are under sixteen. You have every right to be involved in your care, it's your body.

 

[Ki3]

Im never given there numbers my parents keep it. Im just not that kid I suppose. Even if I did talk to them I wouldn't know what to say. Ringing doctors just isn't something I do I dont know why. My parents know im annoyed and are going to try and help but I dont know what to do.

 

[valleysangel92]

Well next time, write a list of things you want said and questions you want answered, then you can either say it yourself or give it to your mum / Dad. We'll help you think of what to ask of your stuck, what about that?

 

[Ki3]

Sorry the internet went down. I told my mum yet again I want a new doctor so she contacted the district nurse and she is going to get in contact with the hospital and find a doctor. She will ring back Monday to tell us how it went. Thanks everyone for your help, hopefully my new doctor can run some tests and get me some treatment so I might actually get into remission

 

[valleysangel92]

Yay! Keep us updated on the new doc . A new doctor made a HUGE difference for me. Don't be shy if they do want to talk to you, they can get a better understanding of your symptoms that way. Good on you for sticking to your guns on this! Let us know how things go .

 

[emmaaaargh]

I just wanted to say that just because your doctor is supposed to be 'the best' - doesn't mean they're the best for you. I had a paediatric gastroenterologist who had IMO an awful bedside manner, and I struggled to get along with him for 4 years before finally deciding to change. I was under a paediatrician for a while but made much more progress with him that with the GI!

Anyway, I'm glad you're going to be seeing a new doctor. Don't let anyone disregard your opinion because you're young, by the way! I was put off asking for a new doctor for ages by my parents but eventually I got so angry I told them my views again and they listened. Your care should be dictated by you, since it's your body. Oops! Sorry, I'm rambling - long story short, please let us know how it goes and I hope you have good luck seeing someone else

 

[Ki3]

Thanks,

My mum has been talking to a doctor I have met before, so Im thinking she might be my new doctor. She is going to start me on a new drug ASAP (im not sure what yet) and in October we might consider remicade if I don't improve. So at the moment im just waiting to hear more about the new drug

 

[valleysangel92]

Good luck with the new meds sounds like this new doctor is much more on top of things

 

[Ki3]

Yeah we have seen her a lot as my doctor is never around so she normally did doctors rounds and stuff. Thank you all ill keep you updated xx