New, In pain, Scared

[chanaelynn]

Hi, my name is Chanae, i have not yet been diagnosed, I have an appointment on Friday for a colonoscopy, however the Dr's say they are pretty sure that I have CD. I have been to the ER twice in the last 30 days, first time was because of chronic pain that just kept getting worse and worse, second time I was taken by ambulance because I couldnt breath. I got a fever, started getting sick, then my heart rate went up to 180 bpm and I couldn't breath or feel anything. Since then I have gotten "flare ups" I guess you could call them, they usually start out at around 3am and starts with me throwing up then extreme pain in my abdomen. Nights are hell, I can take two Vicodin and im still in a ball in tears. Tonight is one of those nights, I have no idea what to do and was online searching for some answers when i found this forum, thought maybe I could get some help from people who have and are going through the same thing. Im so tired of the pain, it takes me out of work, and life in general. I just want to not be in pain anymore. Im really excited for my appointment on Friday, people think im crazy when i say that, but finally i can get some answers!!!
I am not going through this alone however, my husband is the most wonderful man in the world, he has helped me through everything, he has held me when im crying, taken me to all my doctor appointments and the ER. He is absolutely amazing i don't know what i would do without him!
If anyone can help me out in any way i would greatly appreciated it!

 

[handle]

Hi Chanae,
It does sound like you may have some obstruction in your guts - with all the throwing up and pain. Best thing to do would be to go onto a mostly liquid diet for now (you will have to go to clear fluids for the colonoscopy). Do you know of Ensure Plus or other liquid feeds? That kind of pain is unbearable! If it is an obstruction it may be from inflammation, and they may start you on cortisone.
Glad you have hubby there to support you. It's a hard thing to go through alone.
Good luck with the tests.

 

[Crohn's 35]

Hi Chanae, :welcome: First of all having a wonderful spouse is so critical in this disease, helps you gain some perspective of knowing you are not alone and we are here.

Pain meds do help but you need to get it under control with medication. I agree with Handle right to up to the Prednisone, but only for a short time and get a maintainance drug to help you. A colonoscopy and or a SBFT will help figure out how bad and exactly where it is. Sometimes surgery is the best option. Let us know how you make out a the doctors. :hang:

 

[CaliChi]

I know it can be so scary in the beginning. Like what's happening to me and my body!? And when is this going to stop!? (((hugs))) I'm so glad you have your wonderful husband to love and support you and care for you.

And as much as it's no fun to get a diagnosis of Crohn's or something similar, at least when the doctors know what's going on inside, then you can know what you're dealing with and the doctors can advise a plan of care and you can do your own research to find out what works best for you in other ways too. The main thing is that you're taking action and you're on your way to feeling better. Be gentle with yourself and remind yourself that you're doing great!

 

[chanaelynn]

Thank you all very much for your replies! I am getting excited for the colonoscopy friday, tomorrow is my prep day, luckily i have a great manager at work and she is letting me work tomorrow morning, then off friday and late on saturday! but im getting a little nervous, like what if they find more than just chrones?! or what if it doesnt work like its supposed to?! So many questions running through my head! But atleast i will be getting some answeres!!

 

[atvman18]

Hi Chanaelynn,

I have crohns and celiac disease and it actually sounds more like celiac disease from your description! I used to get the worst abdomen pain ever and i found out it was from eating gluten. The nausea/throwing up sounds a lot like it too. I used to lay awake next to the toilet for hours (damn gluten!). Your doctor is wrong to assume that it's crohn's disease because it could be a number of different things. I hope your also getting an Upper gastrointestinal endoscopy and additional blood tests to check for both diseases.

Hope everything goes well!

 

[chanaelynn]

Thank you, I will have to do a little bit of research on that, I did go on a gluten free diet for two weeks and I didnt have any luck getting rid of the pain! But it still might be that! The pain is terrible, nights are the worst, I have to sleep sitting up, but still dont sleep any, but I think the reason i throw up is because of the pain. But of course I could be wrong. As soon as i find out I will let you know. What is the treatment for Celiac?

 

[hercules25]

The only treatment for celiac disease is to never eat gluten, wheat, barley, etc. Just when I think I am gluten free I find out no the food I have been eating has gluten. There are antibody testl a gene test and biopsy that can help diagnose Celiac Disease. I have read going Gluten free even with Chrons is suppose to help also.

 

[atvman18]

WHat are you talking about...........

They test for Celiac with a blood test......

Trust me I would know. And My gluten free diet does nothing for my Crohns, it just limits the food I can eat even more. Just pray you have neither. But Celiac is definitely the better one to have.

 

[StarGirrrrl]

Blood tests are useful for cealic but not 100%. The only way to be 100% sure either way is biopsies during an upper endoscopy. And some CD patients seem to have a gluten intolerance that is not cealic disease.

How did your scope go? I hope the prep wasn't too rough. Hoping it gets you answers but CD can occur from mouth to anus so can be hard to dx sometimes with lots of tests needed...