Crohn's experience so far :/

[susie.95]

Please help !

Well, this has to be one of the hardest times in my life. And it sucks !
From not being able to eat due to ulcers to diarrhea from whatever stays down. It feels like lost hope.
Crohn's, Gastritis, Colitis, And Ulcers:/
IT SUCKS !
I feel like I have to live in the bathroom !
oo:
I've been in and out of the hospital since April and no one could figure out what was wrong.
Doctors assumed that my first ulcer from my first Colonoscopy will go away but never did.
I've been told my blood is from my menstrual cycle, fissures, hemroids, etc.
Until the doctor did a second colonoscopy after getting the IBD panel and was shocked for sure.
Crohn's had manifested my colon within a 3 week period !
So thats two colonscopys within a 4 week period, then was the endoscopy's.
Two of those as well.
First it was just gastritis, now its ulcers !
I hadn't eaten in 9 days and dropped 14 pounds in 3 days !
Last night I was so hungry and I attempted to eat some noddle soup, some stayed down and everything else just was regurgitated.
Whatever stayed down gave me severe diarrhea all night and all day today. The worrisome thing about it is that the blood is becoming more and more. My nurse told me its not significant but the entire bowl has bloody diarrhea !?
:thumbdown:
This morning the doctors told me I have no fistula and this nurse is telling me I do and that it explains the reason for the amount of blood I have. I'm so confused and I have no idea what to say!
They did an MRI and found that my small intestine had mild inflammation ;
but I did not drink the contrast so they said it's not 100% accurate, and as of today my SED rate is 91....
Earlier this week was 22 :?
Does anyone else have this experience as well!? Please help me !
IHave no idea what to do anymore !

 

[susie.95]

Aww no responses Someone please give me some feedback if you can Im desperate right now !

 

[Crohn's Mom]

HI susie and welcome to the forum!

I saw on another thread that you are only 15 and you are currently hospitalized ? You poor thing, you must be really scared.

When you are in a bad flare, it is pretty "normal" for your sed rate to start raising that quickly.
What meds are they currently treating you with?
Try not to get too discouraged, it just may take a little time to figure out the right combo
of medications before they get it right.
There is a sub forum just for teens you may want to check out. You will need to send a PM to either David or DustyKat or NancyLee (?) and ask for the password.

I sure hope you get to feeling better quick, and I hope you have some family around to spoil you rotten !

big hugs, and if you have any questions we can help you with just ask away! There are some great people here with loads of knowledge
~T~

 

[susie.95]

Thanks crohns mom. But the doctors don't know why my sed rate is so high ! They have even told me they have no idea how it suddenly sky rocketed after it was dropping. They are now looking at my kidneys and other organs in my body.

 

[Trysha]

Hello Susie
Sorry to hear of the very difficult time you are having.
This forum has many very helpful members from UK so I am sure you will receive more responses when they all get going in the Uk morning.
Add 5 hours to Florida time and that is UK time.
Your sed rate is reflective of the inflammation in your body and judging from your story you will have quite a bit.
Soon the docs will figure everything out and get you on to some effective meds to make you feel better.
You are so young to have all these problems but once you get the right medicines you will start feeling better. It can take time sometimes.
Lots of hugs
Trysha

 

[xJillx]

Hi Susie and welcome! I am so sorry to hear you are suffering so. I can't believe your nurse was trying to dismiss your bloody stool as normal - not the case at all! Drop that one! And two colonoscopies within 4 weeks?! You deserve a medal!

Have your doctors started you on any treatment?? I sure hope they find the right treatment plan for you soon and you start to feel better. Hang in there!

 

[susie.95]

Hi everyone, thanks for your responses.
xJillx,
the doctors have just told me that I am not responding to the treatment and may have to start me on remicade.
They also mentioned another colonoscopy to view my small intestines again and to see if my colon ulcers have subsided as well as check my gallbladder to see if it is inflamed.
I have a long road ahead of me

 

[xJillx]

Another colonoscopy - ah! They are colonoscopy crazy over there.

Hopefully, Remicade will be your miracle drug. It has done wonders for so many. Check out the Remicade sub-forum to learn more.

 

[susie.95]

They have to make sure they are giving it to me for the right reasons jill !
Thanks for your help! i will certainly check it out

 

[Brit]

Hey Susie I'm getting remicade now as well, only had 3 doses but it's doing pretty good. Also my SED rate was way up in the hundreds but droped on prednisone. It's a steroid that helps bring down the inflamation. Hope that helps any.