Community Forum

I was diagnosed with UC right after I turned 17.  Since then I've had various ups and downs and tons of different medications.  Now I'm 24 and I have a good job-- I use my sick days as soon as I get them, but I know I'm so lucky to get a job with paid sick days!  I'm living like a normal person to the outside world, but I think it's taking a toll on me.  People I work ask how I stay so thin and have know idea how sensitive I am to my weight loss.  I go through phases where I never get hungry.  I'm ALWAYS tired.  There's always some new or old complication bothering me.  I go back and forth between diarrhea and constipation constantly.  I get bloated and gassy.  The worst part is the pain.
Whenever I start to feel sick I freak out emotionally.  I mope in self-pity.  Life shouldn't be this hard.  Lately I've been feeling bad more often.  It ends up being twice as stressful because I act like it's the end of the world and it triggers that hopeless feeling.  Usually I'll go back to my normal self the next day but when I have more bad days I start wondering which version of myself is the normal one.
Over the years I've learned lots of tactics for dealing with the physical aspects of UC.  I've gotten used to pain.  But I still haven't figured out how to cope emotionally and how to keep myself from freaking out every time a symptom reappears.
Any advice would be greatly appreciated.

 Reply posted for Joe.

I used to think something was wrong with me when I'd get frustrated and depressed during a long Crohn's flare. Reading the discussion boards, it makes me feel a little less alone, to know I'm not the only one dealing with this. It does get frustrating, and we're only human. Going through a lot of pain and fatigue, etc, will play with your emotions.

I'm currently on Humira, and doing pretty well for me. Got my weight up, able to work pretty much all week. But even on a "good" day, it's not uncommon for me to have at least one session of cramps, rushing to the restroom (really rushing), and spending about 15 minutes or more feeling like someone's punched me in the gut. You know how it feels.

It often messes up my plans when I want to get things done, run errands, chores, etc.  So I still get frustrated and down, and though family is sympathetic, they don't really understand. exactly how it is. Heck, when I first came down with symptoms year ago, my mom actually suggested I get counseling. Aagh!  I'm glad this board is here, it's really been a help to put things in perspective.

 Reply posted for TobyKai.

you have described me too a T........I can totally relate and understand about everything you said............all I can say is I understand......and sometimes it helps just to know that someone does............Tori

 Reply posted for TobyKai.

I feel the same way right now, this disease is scary and very emotional at times.  I am recently going through a bad flare and dont know what direction to take for sure.  I know I just have to keep going and fight for what I deserve and thats a healthy  and less painful life.  I am looking into finding a new gi doc and will have another colonoscopy soon to revaluate my condition to see if there may be some new information.  I have two young children and a family to live for, ya have to get mad and just fight for yourself but it is also nice to know I am not the only one that feels this way.  Anything that I may find that will help I will def let you know, just remember you are not alone and things will get better.

 Reply posted for EZ.

I'm actually not on any meds.  I'm allergic to 5 Asa drugs, remicade, and imuran.  When I get a bad flare up I have to take steroids.  I do take probiotics everyday and they help.  I manage my symptoms with acupuncture and chinese medicine since western medicine hasn't worked out for me so well.  Now that I'm doing a little worse I've started to keep a food diary again and be strict with my diet, but I do feel like I know pretty well by now which foods are okay and which aren't.  That's whats frustrating about it-- I can't figure out any rhyme or reason as to why or when my symptoms occur.  I know they often accelerate when I'm under stress, and I try to manage that as well, but sometimes it seems to be from out of nowhere. 
My issue here is that I overact emotionally and I have trouble dealing with that aspect.  I'm decent at managing my symptoms, but I'm awful at managing my emotions.

Joe, you have a point.  It's good for me to put it all in perspective.  I often feel like I've been sick forever and I know everything there is to know about it.  But I am young and I intend to have a long life ahead of me so I still have a lot to experience and a lot to learn.

 Reply posted for TobyKai.

My daughter has UC.  What meds are you on?  Do you take an supplements like probiotics?  Do you keep a food diary?

 Reply posted for dmstern8.

The thing is that my colitis is not severe.  No doctor would recommend surgery.  But it's annoying.  Like I said, I'm able to at least look like I lead a normal lifestyle.  But even so I feel colitis symptoms everyday.  I know there are a lot of people much worse off than me, I'm just venting now because supposedly I'm in remission (I'm dealing with chronic constipation now) but complications from IBD keep me from feeling healthy.  Even though it's not severe, the fact that it's a constant in my life drags me down emotionally.

 Reply posted for Joe.

My son is 15 and was diagnosed 8 months ago . He has severe UC.  He is now facing surgery.  And like you,  He had his ups and downs.  Since you have UC.  Have you discussed surgery with your doctor.  As you know, surgery can be a cure for UC. My son wants his life back, and we hope after surgery he will get it.  Hang in there and be hopefull and don't let this disease take over.

Good luck

Derek's mom

 Reply posted for TobyKai.

When I am in the "unstable mode" I know that it is my chronic health conditions and I know that eventually I will come out the other side (recover). So I just lay low and try to maintain until I do. I let the thoughts bounce around in my head and let them do their thing, free reign. I don’t act on them. I am a solitary person which helps, no interactions with others to complicate matters. I think that it helps to just accept all of this for what it is. "It is what it is". I’m so accustomed to living like this that it is more or less a normal existence for me. I really, really appreciate the good days and just tolerate the rest. All of this has come from a life time of experience. At 24 years old you are just beginning. You have to keep getting back up every time that you get knocked down. You have to fight, be determined, get mad, educate yourself on every aspect of IBD. Keep trying different approaches and all that that entails. If you are to succeed it will be your doing. You are the guardian of your health. One of the hardest things for people to do is reach out to others and ask for help. Your post here is a good effort in that direction. Don’t let IBD win. Hope this helps.

Joe