UC Rant

Hey Guys. It's been a while since I posted last.

I'm feeling a little frustrated so I thought I would post this rant. I'm sure you can all relate. Feel free to reply with your own personal UC rant stories.

I'm so tired of this darn disease. It's been 3 years now and I'm always hoping one day I"ll wake up and realize the last 3 years of my life have been some kind of nightmare. It's too hard to admit it's all real. I feel stuck in life's cruel joke. I'm tired of knowing every bathroom in every place I ever visit. I'm tired of walking into a building and searching for the location of the bathroom "just in case". I'm tired of having to starve myself on days I want to leave the house so I won't have the anxiety and frequent trips to the potty that happen when I've even had a piece of toast and go to the supermarket 10 minutes away. I'm tired of being scared I'm going to crap my pants and am ashamed to admit I've done it at least 5 times in the 3 years I've had this disease two of which were in my brand new mustang. I'm tired of going through TP like there's no tomorrow. I'm tired of constipating myself with Immodium just to make it through the day. I'm tired of having to decline my friends' invitations. I'm tired of missing so much school. I'm so angry that going to the movies is ruined for me. I'm lucky if I can make it through the previews and sit tense with my jaw clenched clutching my purse wondering if I'm going to have to rush out to the bathroom. It makes me angry that I rejoice when I have a healthy formed BM. It makes me angry that I am reliant on a plastic sack of saline and mouse protein (Remicade). I am scared for the day when I get cut off from my parents' health insurance and have to try and get insurance with my expensive disease. I am scared that I will need to cut out my intestine someday and poop in a plastic bag attached to my stomach. I'm afraid I'll never find love because I'm damaged goods. I'm afraid I'll get colon cancer and suffer and ultimately die a terrible death like my beloved uncle did last thanksgiving. I'm angry that I'll have this dark cloud hanging over me for the rest of my life. I'm afraid long term remicade treatment and extended Prednisone will make me infertile or unable to sustain a pregnancy.

Why did UC have to happen to me. To all of us? GRRRRRRRR


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Ashley

19 year old female DX Severe Left-sided Colitis after c-scope Oct 2005
Prednisone 40mg Oct 2005-Aug 2006
Canasa Supps Oct 2005-present
Remicade every 8 wks Aug 2006-present
C-diff in March-April 2006
Procedures to Date: 3 colonoscopies, 2 sigmoidoscopies
Semi Remission with mini flares controlled with Canasa supps and Immodium
Feeling: Extremely depressed
Zoloft 100mg June 2008-present

Right back at you, I feel all of those things and sometimes even think surgery doesn't sound that bad.  But when I am feeling really down I think of all the illnesses out there that are worse than what we are facing. You can live a pretty normal life without a colon but if you had kidney, lung, liver or heart disease you couldn't live without any of those organs.

Although when I am really sick I feel really down and think how unfair it is and it is, I would much rather be healthy but there are worse conditions that you could be struck down by.

I know it is hard but try and keep your chin up. Sometimes there is nothing like a good rant and hopefully tomorrow you will feel better.

hey, I just wanted to let you know there is hope. i just got diag with uc, and thankfully mine has been mild, but my brother was diag in 2003 when he was only 17. at that time he was a freshman in college and his uc was so bad that he had to scope out trash cans to toss his cookies in, along with the inevitable bathrooms. there he was, a freshman in college, and he had to take a leave of absence, move home, and be very, very ill. he was very ill for a long time. they thought he might need surgery and then he tried remicade. now he is in remission and has a great job with great benefits (wish I had that) and just bought his first condo. remember, as bad as it seems, it could be worse. imagine if it was lou gehrigs disease or something :(

Hi Ashley. I know how you feel. I worry about those things almost all the time: I was a big enough dork before UC and now I have a pooping disease to add to it--will anyone want me? What will be the long-term side effects of Remicade? How long will the Remi last? I'm always worried and anxious when I leave the house. That being said...

I agree with Sue--maybe it's time to consider surgery. If Remicade is working for you, then you'll be able to schedule your surgery whenever you want. The bag is only something you'll have to wear for a few months (I know, I'm totally grossed out about it, too) and only about 5% of jpouch patients have pouch failure and have to revert back to the bag. There are risks and benefits to surgery and Remicade/keeping your colon, so it's something you have to weigh on your own. At least talk to a surgeon--I've talked to 3 surgeons and an additional GI, and they've all given me helpful information.

You will go through MANY adjustments throughout the course of living with UC. The trick is not to let it get you down because then it beat you. You have to battle this disease like it was your sworn enemy, use your anger and frustration toward learning as much as you can and educating yourself to the nth degree so that you can keep your head up and live your life wiser. If you let your feelings of dread get the better of you it will take advantage of you and run your life. Don't let this happen. Realize that YOU are in control, not your UC. Let me repeat that: YOU are in control! Do what you have to do and adapt. There are people out there with things a heck of alot worse than our affliction. One of the best things that has helped me in the 14 years I've had UC is not an expensive medication, it's free and called acceptance. The sooner you remove the feeling of "this is unfair" and replace it with total acceptance the sooner you will be able to become more creative with handling this disease. As far as you never finding love... hogwash! There is someone out there that will support you 100% of the way. The trick to dating and finding love is HONESTY. You must be upfront and honest about what you have, and if they truly care they will be there for you. It also doesn't hurt to have an extra set of eyes looking for a public restroom either! :)

I had my first colonoscopy at age 19. My boyfriend at the time took me to the hospital to have it done. We married 2 years later. We've been married for 9 years now. ucwarrior is correct. The right person out there for you will help you find the bathrooms and remind you what you can and cannot eat when you "forget". ^_~

It is really hard to come to grips with WHY we ended up with this disease, i spent years wondering what i did to deserve this, but that really doesn't matter, it just matters that i had it, and it ruined 8 years of my life.
Like Subear i opted for surgery, although i went for a perm ileo.
Please do not think of life with a bag as a death sentence, or as gross or disgusting. I thought that way for along time and that is why i wasted so much time sick. Had i spoken to people with bags, or j-pouches sooner, i would have had surgery much sooner. In fact, i now wish i had had it the day i first saw blood. I literally mean that. It is much more important to be able to actually LIVE your life, than to hang on to a colon that is destroying you.
I wish you look on whatever you decide, and i hope you are feelign better today!