Allow me to introduce myself...

[Rina]

New to this! Allow me to introduce myself...

My name is Rina. I'm nineteen years old and live in California. I started having Crohns symptoms at the age of sixteen. I wasn't getting the help I needed, and at the age of eighteen, during the first couple weeks of my senior year of high school, I was rushed to the ER. I can remember the strange feeling, of knowing this wasn't a simple visit.


My senior year is somewhat of a blur in my memory. I missed the entire school year. I was in the hospital for weeks at a time. At first the doctors did not know what was happening. I got down to 88 pounds. I was on a ton of medication. Friends and family feared for my life. Finally the doctors diagnosed me with Ulcerative Colitis. I had my entire colon removed and had an ileostomy bag for a few months. I was lucky enough to get to graduate with my class which was amazing. After graduation I had the reversal surgery and now I have an internal J-Pouch.


It would have been a happy ending if things went as planned. The doctors said this was going to cure me. That was not the case. I have had Pouchitis (inflammation of the internal bag that replaced my colon) ever since the surgery. My doctor is sure that I have crohns disease, even though they have not found it during colonoscopies. I show all the signs of crohns, ulcers in mouth, anal fissure, and others I would rather not mention. I have been put on steroids, many anti- inflammatory drugs, and antibiotics, but nothing is curing the problem.


Now they want to have me undergo surgery again to have a permanent ileostomy bag. This is something I really don't want to do, as it does not even guarantee to fix the problem or end the pain.


I am on a VERY limited diet, as I'm sure most of you are. I'm looking into alternative medicine. The problem is the expense of it all.
Because I have been so sick, I can't do much of anything anymore. I can only manage taking one class at our city college, and I can't hold down a job.
The worst is the pain, I feel like I cannot even think straight because I'm always in pain. My doctor won't prescribe me any more pain medicine because he doesn't want me to become addicted. I understand his concern, but I simply cannot live in this much pain for the rest of my life. I feel like they want me to feel the pain so I will resort to getting surgery! Does anyone have any suggestions on how to handle pain? I do meditation and yoga daily, it does help, but unfortunately not enough...


Anyways, I'm very grateful to have found this site! Please feel free to say hi or give suggestions

:strawberry:
Love and Respect
-Rina

 

[muppet]

...I'm a man, of wealth and taste..

Oh wait got sidetracked there. ;-)

Welcome Rina. Sorry to hear about your diagnosis. This is a GREAT site full of knowledgeable and compassionate people. I've only just gotten here myself.

Don't worry about "unmentionables". No such thing in a group of people such as ours. You probably can't gross out anybody here.

If you feel your doctors aren't responsive to your severe pain, GET NEW DOCTORS AS SOON AS POSSIBLE. I cannot stress this enough.

As for the rest, I have little or no experience with surgeries as, thank goodness, I've managed to control my Crohn's (and with less success, my daughter's) with diet and medication so far. There's a surgery subforum though where you're sure to get advice.

 

[Astra]

Hiya Rina
and welcome

I agree with muppet, please seek a second opinion. I would if this was me. I've seen a lot of doctors over the years and if they won't listen to me when I say I'm in pain, then they're just a waste of organs.
Read as much info on here as you can, there are a lot of Americans here who maybe can direct you to other specialists.
We have a Stoma Forum on here too, lots of good advice and support in there.
Glad you found us, you're no longer alone with this
lotsa luv
Joan xxx

 

[xJillx]

Hi Rina and welcome! I am so, so sorry for what you are going through. To be honest, I have heard this story before - being diagnosed with UC, get a J-Pouch, but then to be diagnosed with Crohn's later. I can only imagine what you went through thinking you were getting a cure, but to later learn it wasn't the case.

However, so many on the forum have found great relief with a permanent ileostomy. I sure hope it will do the same for you. As Joan suggested, check out the Stoma Subforum; I am sure you will find it helpful.

As for your current pain, I don't have any suggestions other than to seek another opinion, as muppet and Joan said. You shouldn't be expected to suffer without any help. I hope you find relief soon!

 

[scottmyster]

HI Rina and welcome to the forum, like jill said i am so sorry you are going through this right now. i haven't had any surgeries myself. but people here at the forum have and they have club forum. i have had crohn's for 21 years now. and i regards to pain i would see another doctor's opinion and get pain med asap. you can't put your body though all that stress and having to deal with crohn's on top of that too. i couldn't so i went and seen another doctor besides my GP and got a precription for pain killers and they work. i hope you seek the help you deserve to give your body a break. best wishes.

scott

 

[Rina]

Thank you for all the warm welcomes and advice! I will most likely be changing my doctor, I am just sort of afraid of change because I have been seeing him through all of this.