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Ashley O
Regular Member


Date Joined Jun 2008
Total Posts : 72
   Posted 7/31/2008 2:16 AM (GMT -6)   
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


___________________________________________________________________

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

Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 7/31/2008 3:53 AM (GMT -6)   
Hi Ashley
 
Sorry to hear that you are so down. I was first diagnosed in about 1985 so i know what its like to have to scope out any new place for bathrooms - and it sucks. I also share your feelings about being 'damaged goods'. I too think that i won't ever find anyone (again) altho i was married for 17 years. At least you have age on your side! And that silver bullet may be just around the corner! I hope you find someone who can accept you for who and what you are.
 
I'm a noob. I discovered this forum while doing a google on "abadacept". it seems like a very friendly and helpful site and i wish i had come across it earlier. If i do or say anything wrong please let me know as i didn't intend to.
 
BTW: i picked Y2K bug because that was around the time my current episode started and it has mostly been with me ever since.  :(
 
PS: You can't have good days without bad ones.
Peter
 
Diagnosed 1985
mesalazine 1.5g
prednisolone 15mg
abadacept 3+3


tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 7/31/2008 4:04 AM (GMT -6)   

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.
32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 100mg started 4/08
Steroids 5mg per day


finick08
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 7/31/2008 5:08 AM (GMT -6)   
hey, just dont let it beat you, thats pretty much my motto, i got mine just over 2yrs ago wen i was 18 and 1st 3months was hard but after that its not been bad, gets bad now and then but i just try 2 not let it bother me and live life pretty normal apart from what ieat, if i still got problems with my UC in my mid 20s i prob just take da  surgery and move on, keep da chin up and hang in ther.

aneerby
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/31/2008 7:46 AM (GMT -6)   
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 :(

26,
Diagnosed with UC June 2008. On Asacol...many questions still unanswered


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/31/2008 8:43 AM (GMT -6)   
If you believe your quality of life is low and that you have lost the last 3 years of your life, it might be time to look at surgery. I was in your shoes but at the year 2 mark I decided that UC had robbed enough of my life. I have a jpouch today, 7 years later, and have never regretted my decision to get rid of my colon. I can now hike, backpack, and keep social commitments. My j-pouch has not prevented me from doing anything I want to do. Life is predictable and med-free. My only regret is not having opted for surgery after the first year of my last flare.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/31/2008 9:35 AM (GMT -6)   

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.


Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3rd infusion 07/08), 2.4 g Lialda, 1 Forvia, 6 Colazal/day
*exploring the option of surgery
 


milkman
New Member


Date Joined Jul 2008
Total Posts : 19
   Posted 7/31/2008 11:26 AM (GMT -6)   
Keep your Head up,or this disease will totallt defeat you.My 23 year old daughter had severe flare from day 1 for 2 years, she still hung in there and is a deans list student, she lives at home .On 7/8/08 she opted for the surgery. it was a 2 week battle in the Hospital till things started to work, she came home  a week ago.She went out with a Friend tuesday, and said how nice it was to not worry about
a bathroom,she  has a road ahead of her,hopefully in 90 days she will be using the J-pouch and I am sure there will be issues with that also.We are dealing with learning about leaking wafers etc. now.Only u can decide what is right for you.talk to people who have had surgery and those who have beeen on remicade for years and figure out what is right for u. good luck

ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 7/31/2008 12:29 PM (GMT -6)   
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! :)

Ashley O
Regular Member


Date Joined Jun 2008
Total Posts : 72
   Posted 7/31/2008 4:37 PM (GMT -6)   
Thank you guys so much for your support, advice, and own personal experiences. Reading your replies has given me hope and cheered me up some. :-) Best of luck to all of us.

IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 7/31/2008 4:46 PM (GMT -6)   
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". ^_~
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 4 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 7/31/2008 8:18 PM (GMT -6)   
suebear. thanks for posting your reply. your post has made me feel more posative about a surgical option. i said to myself i would do the surgical thing 2 years ago but put it off and now i think i have 'lost' 2 years. my kids are growing up quickly and i don't want to lose any more time to this disease when i could be spending it with my children/teenagers!
Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g
prednisolone 15mg
abadacept 3+3


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/31/2008 10:42 PM (GMT -6)   
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!
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