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Crohn's Disease Forum » Your Story » Sick, scared, need support


06-17-2007, 10:31 AM   #1
Spring Sun
 
Sick, scared, need support

Hello everyone,
Since I am online a lot (I work online), I thought it would be good to come here for support. I will tell you a little about myself.

My sister, Nikki, was diagnosed when she was 18 in 1989. At the time they didn't know much about crohn's, and she was down to 89lbs before they were able to start treating her. My other sister, Amy, was diagnosed two years later when she was 18. I was diagnosed 7 years after that when I was 18. Then my father was diagnosed a few years later at the age of 55. Crazy, huh? We all have it.

Mine was always the mildest. I would have a flareup, easily controlled by predizone for a monthw hile I got on Imuran and asocal. I had onl,y had a few flare ups and my intestines did not look so bad (I have it is both large and small).

The only time I was hospitalized was 5 years ago when my doc tried entrocort without realizing that I had it in both intestines (entrocort only works for the small). So I needed high-dose predizone and tube feeding for a few days, but that was all. I got better witht he predizone and imuran after that.

Well, I got married and had a baby,, went off everything for two years. Then my husband left us suddenly four days before Christmas. A week later I found out he cheated on my on our honeymoon and while I was pregnant. I could not sleep and just cried all the time. And of course got very sick. I have been very sick every since (almost six months now). I have been on predizone for six months, it is not helping. I am on the full does of imuran, but it is not doing it this time. Three months ago I went to the er bc my stools were so bloody and painful. They did nothing but give me some vicodin and send me on my way.

My doctor thought the imuran would kick in and I would be fine, but I am still sick. I came off the vicodin memorial day weekend and realized that the vicodin had been 1) hardening up my stools to mask the diarhea symptom, and 2)masking the pain. So...with the messy divorce, I did not want to go on remicade bc I am going to lose my husbands insurance soon (I am self employeed so insurance would be soooo expensive-if you are intertested in learning about me at all you can see my business at karmababy.com - it is something that I created that is very successful but really stressful to run with a toddler -there is an "about us" page with photos and such

Anyways, I have come to terms with the fact that my intestines are not in good shape, and it will cause me a lot of damage if I don't do what I can to fix it now. So, I talkted to a lawyer and I am going to get a legal speration, that way my husband can't take my business but I can keep his insurance. Cross your fingers that it works out!

So on Thursday I am getting a colonoscopy (havn't had one since I was 22 and am now 27), and then I will go on the remicade.

I would love to hear more about humana to if you all think that is a good option.

At this point I am just scared, my anxiety level is through the roof, I am sick, and weak and so sick of not having energy or a normal life.

I just want to get better. I live in beautiful Boulder where everyone is healthy and young, and I feel like I am diseased and infected, kwim?

Thanks for reading this, I know it was long. I welcome any support or feedback or suggestions you all might have to offer. Especially about the axiety. It seems the worse my crohn's gets the higher my anxiety level. It is really affecting me.

Thanks so much, I am glad I found these forums!
06-17-2007, 11:01 AM   #2
Nancy Lee
Senior Member
 
Nancy Lee's Avatar
 
Join Date: Nov 2006
Location: Windsor, Ontario
Hello and welcome to the forum!

I read your other post first and I'm pleased you are feeling better
after a rough and frightening night.

You came to the right place for support and understanding.
I know you will meet plenty of friends in the same boat
and that alone makes one feel better....
just knowing you are not alone with this disease.


I do know one thing for sure...stress and anxiety play a major role
in the disease. Stress can bring on a flare..in the blink of an eye.
Please don't ever be afraid to ask your doctor for something for the anxiety.

Going to go check out your web page.

Again welcome to the forum!
Healing hugs~Nancy
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Diagnosed Crohn's & Colitis-January 1997.
Divertic.-2008

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06-17-2007, 02:45 PM   #3
soupdragon69
ele mental leprechaun
 
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Join Date: Dec 2006
Hi Spring Sun,

Nice to see you posting here and hope to get to know you more as time goes on.

We will all be thinking of you I am sure during your scope. I have had 2 of 3 planned remicade infusions and then will be back to my cons for review. I think it is starting to help me so hang in there ok?

We will always listen no matter if you are having a good day or a rough one.

The folks here are very supportive and you will find lots of info and threads to dip into and comment in so get typing!!

Jan
06-17-2007, 05:43 PM   #4
Cara Fusinato
Sarcastic Forum Comedian
 
Join Date: Sep 2006
HI! Welcome to the forum. Remember that we are your people and we cheer each other on in the good and comfort each other in the bad. My wish for you today is a peaceful moment where the stress drops away and you can enjoy the beauty of something wonderful (a sunset, a kitten playing, your child's laugh). You deserve it! Welcome.
06-18-2007, 09:13 AM   #5
Spring Sun
 
Thanks everyone! Has anyone ever been on vicodine to control the symptoms and pain? Does anyone know if it could make it worse? Also, could anyone point me in a good direction for simple info on remicade? i was hoping it would work right away, like predizone ussally does, but reading some things here it looks like it may take awhile, I just can't be sick anymore
06-18-2007, 11:53 AM   #6
Cara Fusinato
Sarcastic Forum Comedian
 
Join Date: Sep 2006
Vicodin can definitely make it worse. It is VERY constipating and can cause problems. It is not recommended for Crohn's patients. Codeine is the same and was part of my initial flare-up. Went to your website. What a cool product! I will keep it in mind for friends with a new baby. I have a kitten that would love it, actually.
06-18-2007, 09:20 PM   #7
ryanelensky
 
When I start taking too many pain pills it makes my crohn's disease worse. Just make sure you drink plenty of water. A thing that helps my crohn's disease is going to the hospital and simply taking an iv in me for a couple days to get some fluid in me. That gets you rehydrated and more energy.

Last edited by ryanelensky; 06-18-2007 at 09:22 PM.
06-19-2007, 09:52 AM   #8
ruthymg
 
Hi and welcome, just thought I would put my 2 penneth in lol


Each time I have had a bad flare, it has taken a good 18 months to 2 years for things to settle down again and thata only with the stress being removed completely. Its true stress makes the symptoms worse so its essential that you try and eliminate stress wherever possible. Its also important to try and rest regularly, I know its difficult when people work full time, but at the moment as I am on long term sick, I have a nap every afternoon without fail, it does me the world of good. I also avoid certain trigger foods and always always take my medication, even if I feel ok as some drugs are purely there to slow down the process of a flare up. Try and take time to relax a little (I know . . . easier said than done lol)


Hope things work out for you.


Ruth
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