so sick of it all of a sudden!

hi people- so I've been pretty good lately, mentally, but the past few days have been rough. My UC is... what it is, I guess. I take a lot of meds & have been taking them for a long time. I've been getting horrible gas lately, & with it comes the blood & mucous. So basically every time I pass gas I think I'm going to crap my pants! I have in fact done just that on occasion recently! I just had an infusion last Tuesday, 8 days ago. I am still adjusting my diet to control the symptoms- for example, when I need to be up & to work early in the AM, I don't eat much the day/night before. I usually sleep ok, up anywhere from 1-3 times depending on how much I ate that day. Every GI I've seen/consulted with has recommended surgery. My colonoscopies/sigmoidoscopies stink- active disease every time, despite the meds. I have had an RV fistula for over a year now. Despite all this, my life isn't affected too much by it- although I think I've just adjusted to the new "normal". But man, I'm done with it- extremelt tired of having my bowels & what they are doing in the front of my mind 24/7. I figure, 2007 was a horrible year, extremely ill the entire time. 2008 has been better- it's been going a bit downhill the last couple months, which scares me. So I'm giving 2009 the old college try- if I don't get into a real remission I need to do something, ie. surgery. How nice would it be to live life without dealing with the bathroom all the time! I'm just venting.... I forgot to add that I will try Humira first- I should make an appt. with my GI for January, schedule my colonscopy, let him know what the deal is... I think we will be able to get coverage, because I can argue that with the fistula, the diagnosis could be Crohns. He's already suggested it once before, Humira, so I know he's on-board. Although he has suggested surgery many, many times.

Eva,

Although I haven't had UC as long as you, I can totally relate.  Sometimes for no particular reason, I just get so angry and upset about having this stupid disease.  It comes and goes in waves.  I've been having so much progress lately, and then yesterday was kinda bad and it just brought me to tears.  It can make you crazy by teasing you with progress and then sending you right back to the toilet. 

Sorry to hear that you're going through one of the bad times.  I've written off 2008 as the crappiest year of my life, and I just want to forget about it.  Here's to a happy and healthy 2009!!

Hang in there ... : )

Eva,

Definitely vent all you want! I'm sorry you're having such a hard time. I know what you mean about being sick of it all, I was just saying the same thing sitting on the toilet for the 100th time today. I actually put a call in to my doctor's office this afternoon because he wants me to wait another month on Imuran to see if it starts to work, but I'm feeling so bad that I don't think I can last another month, and my lab results are starting to reflect that. Super high WBC and platelets, super low hemoglobin, etc... So I said I don't want to wait and I want to talk about starting Remicade at my appointment on the 19th. I'm sick of waiting and hoping I'll wake up and be all better.

Is there any way you can get in before January? I know it's not that far away but feeling like you are I know time between appointments can really drag on! Hopefully he's all for trying something new right away and hopefully this time it works for you. Good luck and I hope you feel better soon!  

I know what you're going through all too well. I have had UC for 27 years and I am still trying to find a magic formula that will make it all better. I Have been in an active flare for almost 5 years now and am completely sick of any and all medications. I have also had a fistula and know the pain that comes with it. And although fistulas are not common with UC I am one example of the fact that we can get them. Even though there are days when I completley want to give I keep going. This forum is a wonderful place to find the support you need however, I hope that you have a support system close to you, whether it is a significant other or family and friends. There's nothing like a real hug from someone you love when you really need it. I wish you nothing but the best in 2009.

That's the part I hate the most, that I am constantly, constantly thinking about how my gut is feeling, when/where will I need to go. When everyone else around you is just carrying on... I watch them go through meals or go through their day without a bathroom break, and I can't imagine how they can do that. They don't know what a luxury that is, it's totally taken for granted! Not fair.
That's my Vent.
I hope you don't have chrons, that is worse I think because surgery can't absolutely cure it.

Thanks you guys!!!! I'm just hoping 2009 is better too- 2007 was so awful, then things started to look up & now it seems like they are slowly getting bad again. I'm crossing my fingers that my current nuisances (gas, mucous, blood) are just some weirdness, maybe I'm getting my period soon, who knows... You know, as far as the Crohns vs. UC issue- I've never had a true diagnosis, I think right now it is Crohns Colitis. Because of the fistula. I know UC'ers can get them, but they are far more common in Crohns. Mine formed because I had an abscess- I thought it was an internal hemmorhoid, so I didn't get it treated. Eventually it burst, which led to the fistula forming. When I met with a surgeon, he did tell me there is no definitive test to differentiate between the 2, aside from doing a pathology report on your colon once it's out! And pb4, I've been on Remicade for close to 2 years now, and at the higher dose for a good year. We've also upped my Imuran to 150 mgs/day. Those 2 meds are what they use to try to heal a fistula without surgery. It's tough...I like my GI a lot, but he just pushes surgery. For a number of reasons, all valid, I know. But I would give anything to not have to go thru it. But then again, to be over & done with it, & have a j-pouch that works alright would be... I don't even know how it would be because my life has been utterly consumed with bathrooms & bowels for years! I've really gotta see how this Summer goes- if I find myself trapped at home, unable to go to the beach... somethings gotta give, either a real remission or something! I hate that every time I get in the car I'm thinking "Will I make it?" And not every time I do! As far as pred goes-- I've been on it a number of times, each time seeming to have less & less impact on the UC. I'd rather not go on it again. It worked great the first time- if it would work like that again I'd go right back on it. But since then, every time it takes longer & longer to kick in, & does less & less to alleviate the inflammation. Plus I get to enjoy the lovely side effects. Ah well... I keep telling myself "It could be worse!" And I love all you guys, really!

i'm sorry you are going through a tough time.  this is a tough disease that takes it's toll on you.  i suffered from a flare for 5 months before I got really well. i was ready to give up too.  we'll keep you in our prayers

well I'm doing better emotionally- I was diagnosed with pneumonia AGAIN last week, & we caught it quite early. So I just finished up my antibiotics & this better be the last of it! Plus I got my period yesterday. So both those things combined to make it a pretty rough UC week! But things are simmering down back to their old "manageable" level. The pneumonia diagnosis sort of knocked the wind from my sails- I'm at the point where I think the harm from the meds is outweighing any good they may be doing. I don't know..... my husband wishes I would go ahead & have surgery to get off the meds. I know I'm just in a holding pattern, waiting to get worse, which is not good! I have my yearly colonoscopy in March- it'll be interesting to see if there has been any improvement since last year's, which did show active disease. I know from my symptoms, there is active disease, but am not sure how much. Based on the scope results, I've got a pretty serious decision to make. Right now, I'm so sick of all the meds all of a sudden! They suck.