Newbie :: Sara

Hi all! My name is Sara. I have read many forum threads from you guys through my years dealing with CD and finally decided to join.

I was finally diagnosed with CD in 2006 after a wrong diagnosis of UC 5 years prior and dealing with what I was told was "severe IBS" for about the same prior to that. I have been through what it seems like a lot of you have with the horrid ER visits, being treated like there's "no emergency", and shotty health care since day one. My biggest drawback right now - I'm 29, haven't been able to work in over 3 years, was put on temporary disability by my first doctor and have been working with Binder & Binder on a permanent disability case ever since. My current GI said "you should have been on disability years ago"............ apparently I have a pretty severe case.

I have been without formal health care this entire time. I have bounced from government program to county clinics getting what help I can there, but since I can't work and I'm not married I have no options for health care anywhere else. I am currently being seen by doctors who are "allowing" me to be seen knowing I'm working on a disability case, even though nothing's been approved yet. Thank goodness for kind hearts and doctors who truly care otherwise.... I might be dead.

In August of this year I was having very severe pain. Health care (government programs) are very hard to obtain here in Florida (I moved here less than 2 years ago) and I had JUST moved so I was out of meds and had no care. I was admitted into the hospital once for a few days with what I was told was a bad flare up and released. I was, two weeks later, in the ER for the same pain and this time was told it was an obstruction. My utter lack in the health care system and ER's in general led me to leave the ER AMA that night because I just couldn't get admitted to get no help yet again. Unfortunately, the next night the pain was back and even more intense. I like to think I have a pretty high pain tolerance. I've been told by doctors who see my scans that I shouldn't be walking but I carry on as normal of a life as I can. This pain was excruciating and kept me up literally screaming at night so I went back in. I was admitted and I let them this time, if for nothing else than pain control for a night or two's worth of sleep.

And this is when my nightmare truly began.

I was scheduled for a routine colonoscopy the next morning. Of course I've had more of these than I'd care to admit so it was nothing I lost sleep over. Next thing I know I'm waking up, half coherent, in the intensive care unit. During the colonoscopy my infection was so bad that my colon ruptured and I went septic. Thankfully I was in the hospital because I could have died right then. They took me into emergency surgery and removed my ascending and transverse colon, leaving me with the descending and an ileostomy --- my worst nightmare! My first GI wanted to do surgery but I was 100% against it. I'm too young and have too many dreams and it just petrified me. I told myself I'd get a lifetime supply of pain meds and die before I had "a bag"..... well this time I didn't have a choice. I woke up missing an organ and feeling robotic and half whole because of this appliance hanging off my stomach. The surgery was the first week of September, 2010.

The ileostomy is potentially reversible, depending on the infection they left inside and if they can get me healthy enough to reconnect. Right now I'm dealing with appliance and fit issues as my appliance leaks and my skin is tearing and sensitive. So as if living my nightmare wasn't bad enough I've now got this extra pain and heartache to deal with. I've gone through 4 different types of bags in the last two months and have another sample from ConvaTec coming in the mail. I see and read about how "my ostomy changed my life for the better. I have so much freedom now!" and I personally am just not feeling it.

I'm working on my education from home. Online schools are more expensive but it's all I can do right now. And since I can't work and I need to feel productive in life I keep gaining degrees. I currently have two Bachelor's (one in criminal justice and one in psychology), a Masters in Administration of Justice and just started my clinical psychology Ph.D. If I ever get healthy enough to work again I want to work with people to help make their lives better.

The CD has given me mood disorders. I'm currently on an anti-anxiety (which... I've pretty much always had mild anxiety but now it's escalated to Generalized Anxiety disorder) and a mood stabilizer. I used to be an outgoing, karaoke kinda gal! I had my life ahead of me. Now... I feel as though I'd rather curl up under the covers most days and pretend I didn't exist... at least not THIS way.

I actually am a pretty positive person once you get to know me. It's hard to tell "the story" without sounding completely downtrodden sometimes. I see myself joining many forums here and I hope to get and give help to these communities. Thank you for listening! cool

kudos for learning in the midst of all the issues!

How is your pain level? I don't have any experience with an ileostomy, but from what I read most people do genuinely feel better. I can't imagine that learning to change your bag/appliance/etc. is a piece of cake. There are many individuals here that are very supportive.

I had a similar situation, i was hospitalized and during my stay something went terribly wrong and i woke up in ICU with an illeostomy. I really couldn't beleive it. I am very resiliant but had a hard time adjusting to it too. The surgeon said " I saved your life that is all I can say". I am thankful for that but I would have liked for her to reconnect my small intestine to my rectum. I guess my rectum was too diseased and so therefore, my illeostomy has since become permanent. I am still getting used to it but I feel tons better than I ever did without it. My CD was pretty intense although, I too, just worked through it. Life has to go on, right?
Anyway I love my appliance it is Cymed micro skin platinum or something like that. You should get a sample it really changed my life. I get incredible wear time from it. It stays on for a week at a time. The Ekin seals previously mentioned work great to extend your wear time too.
I feel for you!!! Actually, I just had my one year anniversary with my illeo. I am 33yrs old and have two preschool age girls. My husband was very supportive and great with this whole ostomy thing. You will be surprised at how accepting people will be.
Best Wishes,
Mindy

Sara,
I see that you're on Facebook. So are a lot of us! I'm going to send you a friend request.
Cecilia

Welcome to the site Sara! Sorry to hear about all the troubles CD has caused for you. I had it too, but nothing was working for me and had to have surgery. I'm glad I don't have the pain that I used to have all the time and having to rush to the bathroom or sit and hold it in extreme pain. Have a look around here and post up any questions you can think of. That's what we are here for.