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Hi all!  I'm almost 31 and have been diagnosed with UC for about 10 years now.  It started out in just the left side of my colon, then eventually spread to my entire colon.  I've now got it back to just the left side, but have yet in all the 10 years been in remission!  I've taken every drug out there, including being on steroids for almost a year at one point.  Currently I'm taking Lialda and Rowasa, which seems to help.

For the past 3 weeks, however, it's been BAD! Accidents, throwing up, cramping, pain, going up to 10 times a day, and I'm exhusted!  I'm at a new doctor who seems to know what he's doing (he helped me get the coloitis back to just my left side), but I'm just so over it all. The stress of my job could be a BIG factor too (possible layoffs, etc.).  I'm afraid to go out, afraid to eat, and I feel like NO ONE really understands.  My husband is trying, but I can tell he's frusturated with it all too.  I guess I'm just looking for any suggestions, advice, or even an "I understand and have been there".  I'm just so sick and tired of being sick and tired!

Thanks for listening, and sorry for being all whiny

 Reply posted for zroc79.

Well, I've been there, too. I remember thinking almost exactly the same thing: "I can't do this anymore. I'm way too tired." Of course, the disease didn't much care what I thought. It did get better—but not on my schedule.

There is so little my husband can do that  at one point, I just asked him to please stay away when I'm sick. I need him to take care of things, to keep problems away from me, to clean the house (because I cannot stand the disorder) when I'm sick. But there is not much else he can do and his distress is just one more problem for me. So I've asked him to just check in from time to time and that's about it.

Whine all you want. You're not saying anything we haven't thought.

 Reply posted for zroc79.

Hi

I'm sorry to hear you are feeling so bad.  Have you had your pancreatic levels checked?  My daughter (11) was on Lialda and Rowasa and developed pancreatitis (the same symptoms you mentioned that you think might be the Crohn's)  She had to stop taking the meds. I don't mean to worry you but it is best to get it checked out..  Hang in there!!

 Reply posted for zroc79.

      I understand and am there with you right now. I am also 31 and was diagnosed 10 years ago. I have UC and am having a flare-up that's lasted for 6 months, after 3 years of remission. So much pain and petrified to eat.  You just don't know what's going to happen if you eat such and such. It makes me feel so neurotic. That's part of why this disease sucks so much. I love food. and it's such an integral part of life (socializing, family events, the simple act of cooking) that when you take it out of the equation it feels like such a huge chunk of your life is missing. Pretty much I can eat rice and that's about it. At least I like rice. :)

The docs have me on Asacol and prednisone. The meds are not working, and it was making me crazy overwhelmed and frustrated. I had to go back to the doctor because my eyes were completely inflamed as a symptom of the colitis. I feel like my body is falling apart. and I'm 31.  But I know if I freak out it'll make it worse.  I just have to have hope that healing is going to happen. So know that you are NOT ALONE and that other people are going through what you are going through. And it is REALLY difficult and exhausting. but it is more exhausting being in it alone.

  The thing that has helped me the most is having a strong support system. So do whatever you can to be around friends and family who love you unconditionally whom you can talk to about what you are going through. And do whatever you can to relax: meditation, hypnosis, get a massage. Don't feel guilty.  And if you need to, see a therapist about having a chronic condition. I have and it has helped me immensely.

Best of luck to you and take care.

 Reply posted for zroc79.

zroc79,

Your not alone...... TRUST ME !!!! I know exactly how you must feel. my struggle with UC has been one heck of a roller coaster ride. During the last few months before I made my decision to have surgery ( total colectomy ), I was going to the bathroom up to 30 times a day w/blood every time. I had my first of 2 surgeries on may 20, 2009 and I must admit that waking up with a bag hanging from your stomach was a bit much for me to fathom.... I nearly lost it! But that all passed very quickly and takedown surgery come in a flash. Although I have my struggles and frustrations, I have got to admit that I feel much better than I did prior to my surgeries. Even though it's been less than a year and really to earlier to say that all will end in success. I feel that I have already won as I have been able to do things that I wouldn't have been able to hadn't I done the surgery. This is not at all saying the surgery is the only answer and will fix all your problems, but it may not hurt to talk to your GI about this. In the end you and only you will know if and when the surgery is right for you.

Best wishes and keep your chin up    Also in regards to stress being related to your flare ups ????? I have learned that the more stress the worse I was.... So do your best to eliminate as much stress as possible.

Jared,

 Reply posted for zroc79.

No, thank YOU for posting and please don’t think of yourself as being “whiny.”  It’s not whining when you’re talking about one of these diseases; they’re enough to (literally) kick anybody’s butt.  :-)  So please feel free to share your frustrations and seek advice; we’re all here to help each other.  Having read the posts in here for past few months, I can tell you that there are a lot of wise and insightful people in here.

In the mean time, I can relate to your UC experiences.  I suffered with it for four years trying a variety of meds, ended up in the hospital for some rest one summer, and never got better.  I ended-up having the j-pouch surgery and haven’t missed that diseased colon since (it’s been 20 yrs now).  While surgery is generally the ‘final option’, please don’t hesitate to ask should you find yourself facing that decision.  Prayers and best wishes.

 Reply posted for zroc79.

I understand......I'm sure many of us in this "community" understand.   We have all had our ups and downs and struggles over the years.   It's ok to feel "over-it".  

Tomorrow is a new day......wake up, thank God for it.....and make the best of it.  

Wishing you well.

Lizzies Mom