Possible remission/vent/What is remission?!

So, recently I went to the doctor and they ran a lot of tests consisting of bloodwork & a CT...Well, according to all that, I'm not flaring but my Rhuematologist says with all my joint inflammation, I am. After all this my I called the GI & told his nurse(WARNING: THE FOLLOWING IS NASTY) my stools were increasingly thin, even thinner than a pencil, I still have occasional 'D', blood in stools, contipation, bad joint pain etc. & she said "Well that's good because that could mean your flare is getting better but I'm sorry you are having all the problems & if you get admitted into the hospital tomorrow please call our office because we might need to work with the Rhuematologist so change your medications."

 Normally, I could care less about the lab tests & CT results because they are, 99% of the time, ALWAYS negative, even when I'm in a bad flare. But if the above mentioned means my flare is going down why in the heck do I feel like I'm dieng from stomach aches to bad joint pain? Now I feel like a horriable person for missing half of my classes because my knees locked up from the inflammation & my stomach pain was too much. I know that I haven't had a colonoscopy to confirm the lab results or anything but I'm just fed up with all of this "It could be" "Maybe..." "Well we'll give it a few months". Well WHAT is remission?! I asked my GI once & all he said was "You'll know when you're in remission. I have patients that come up to me & say they didn't know they could feel this good." 

 

   All I want is to feel better. Call it whatever you want. I just don't like being pushed from one doctor to the next because I'm a "difficult case." I want to know if I'm in remission, what can I do to feel better....I'm crying typing this(I never cry. My motto is 'suck it up butter cup') but I just wanted to get this out for the first time "I just want to feel better, I'm only 15 but I'll do anything to get better. I just want to be like all the other girls at school that get to have boyfriends, go to the homecoming dance, & go out to eat pizza after the football games but I can't because I'm the girl that's 'always sick. I take all my medicine, I've done so many diets, I just want to throw all my medicine away & go about my life if I'm 'fine' but I know that bad things happen when you quit doing this.

  I know SO many of you have it so much worse than me & are thinking 'Please, stop your -------- & moaning' and I admire all of you SO much for even taking the time to look at my posts when you could, responding & offering advice even when you feel absolutely miserable. The only reason I joined this forum was to communicate with people who understand. I will get off my soap box now & wipe away all the tears   I just hate this disease & how it plays with your head.  I'm sorry for posting so much.

   I know....it's going to better. If it doesn't then I'm okay with that because I do have great people in my life as well as know that this disease is a blessing for so many reasons. I can't wait to post "Feeling good & in remission"

Unfortunately I'm rather shattered, so I can't reply to this as I would like. But the last thread I posted in - Lindsay's one - is quite relevant to your case I think. There is little more demoralising than suffering badly and yet not having it recognised by medical professionals. Crohn's is a disease with a rather nebulous set of symptoms that can be hard to convey the unpleasantness of without feeling like you are exaggerating or being a hypochondriac.

And yet it's a bloody horrible, debilitating disease when it's not under control - and I don't think your Crohn's is under control. I also don't think blood tests and a CT scan are sufficient enough testing. Have you had a colonoscopy? MRI scan? Pill cam? All those are more accurate tests.

Ultimately though, it sounds like you want to be rid of everything to do with this rubbish disease - tests, drugs, etc. - and I don't blame you one little bit. I feel for children and teenagers who get Crohn's because they have a lot longer to live with it than somebody diagnosed at 25, like I was. I wish there was something which would give you that respite. All I can do is echo what gumby said about enjoying what social life and interests you can, when you can. Also not comparing yourself to your friends is a really, really good idea. It's entirely understandable, but in the end they are them and you are you. They may be able to eat pizza and do all the fun things now, but that won't last forever for the majority of them. Adulthood will descend, along with the responsibilities and demands that entails. When you get older, too, folks will see you as more of an individual: you won't have that label of 'the sick girl'. Teenagers can be desperately shallow creatures, really.

Okay. I can barely think coherently anymore. I'll finish by saying that I hope you get your remission.

Hum, if you have those symptoms and your doctor isn't treating them..........I'd think about switching GI's b/c s/he is not getting you better. Plain and simple.

I would never have figured you were 15 reading your post. You seem like a very strong and amazing young woman and deserve to be treated fairly and taken seriously by your doctor.

Yea, we all miss pizza. I ate some when I thought I was well and it made me sick for well over a week! Whew!!!! It must be terribly difficult to have this at your age. Hang in there and keep us posted.

Remember you are NOT your disease. Don't think of yourself that way. I know it is hard when you feel so bad but don't lose yourself in this mess. I have to work hard at that myself but it gives me a lot of peace to remind myself of this.

@jeanneac- I guess Crohn's makes you grow up quick! Which isn't neccesarily a bad thing...but I'm not going to lie; I do hate that I haven't had the 'hhighschool' experiance yet. I'm very fortunate to have the disease early in some ways because I get to have advice from others like you who have had the disease & can offer great advice. I'm very blessed just from that. My GI is trying his hardest but I guess I've went so long without treating this flare because no doctor in my town knew how because I was a pediatric case(9 months) that it's taking longer than usual to get me in remission. I'd love if my disease just went into a spontaneous remission like my last one! If not, then maybe my Humira will kick in :) Thank you a lot! I need to remember that & put "I am not my disease" somewhwere where I can see it every day. I'm glad I found this forum! Thank you again VERY much for responding!


@Matthew- Thank you very much! I've only had two flare ups(the last two) where I've had the 'JRA' come up but it's usually with the flare, not always a precursor like you said! I hope I get a true remission soon also! I am putting a lot of hope in this Humira business. I try to read as many threads as I can so I can absorb everything & try certain things to decrease symptoms & see what others go through so I can feel better & humble myself! I have read many of your posts and sometimes re-read them when I'm going through a simmilar situation. Thank you again!

@Tsitodawg- Thank you very much! You are very strong your self! After I read your reply I felt a huge load lifted off my back! I guess I should start telling doctors how I REALLY feel, even when the tests don't reflect it. The stool tests usually are accurate for me also, & aren't always negative. I hate when my tests do that but most of my doctors know better by now that I'm not "normal" :) MRSA, has that gotten any better? I keep praying for you! I promise! I even put in my prayerbook last night "Fellow crohnie's & those suffering from a crohnic illness, especially T-Dawg" Hahahhahaa :) I'm planning on going to that CCFA summer camp thing this summer to be a 'camp counselor' if I'm in remission so hopefully I can spread what I've learned from you & others on this forum & learn from the campers myself!
(I wish I was coordinated enough to play baskeball but I can barely bounce the ball and take a step without tripping) Lol

Thanks again! Sorry I didn't respond sooner! I took a new medicine & apparently it knocks you out for 15 hours straight. I'm not complaining though! :)

Keepingfaith...it's OK to vent....we all do it from time to time ...I know it's hard watching those around you getting on with things that are on hold for you at the moment,but that won't always be the case,your time will come,you'll see..You are an exceptional young Lady ..Good luck with the summercamp and i hope and pray you get well soon,Slainte