I HATE UC SOMETIMES!!!!

I just hate how it interfers with my life.  It not only affects me but my kids and husband.  I just don't understand sometimes.  Like today, the last three days my 6 year old has wanted to walk up to the yellow park, with his bike, by our house.  The park is about 7 blocks up and there are no bathrooms on the way there and it is a neighborhood, so I couldn't go in the bushes if I needed to.  Also, a lot of times the bathrooms at the parks around here are closed exspecially now because it is the end of summer.  I feel like I can't do things without worrying and it is annoying.  The other day we went to a park and went swimming and walked around and I have to find the bathroom and everything.  We ended up being two hours away from the house and we ate supper and the whole way home I am miserable.  While I am usually fine because of the remicade I still worry because when I need to go to the bathroom I will need to go. 

On another note my fatigue is my number one complaint.  I hate it.  I can hardly function and I have three kids to take care of.  It is horrible.  I am out of it and just want to sleep.  I am usually fine until about 10 in the morning and then I am horrible.  It just affects me so much.  We go out and do things and I am dragging.  I can hardly stay up.  I am just drained.  It sucks.  I should be able to get up at 8 and stay awake the whole day fine without falling asleep in the car or being so tired I can hardly function.  I had an autonomic disfunction test done and will find out what the results are in a couple of weeks but ugh.  That test wasn't fun.  I hope I don't have something else wrong also.  My doc said I should be tired but not that tired.  It is so bad I can't even explain it. 

We have a wedding to go to this weekend two and a half hours away and I will worry the whole way there, at the wedding, the reception, and in between, and the next morning when we drive home.  It just interfers so much.  Ugh!!!!! I hate it.  It interfers everyday and I am young with kids and I should be able to enjoy going to the park and other things and I can't.

I know how you feel. I can't go anywhere if there is not a bathroom in sight. I panic and sometimes just the stress of that will make me have to go. There is a joke between my husband and I of how many states that I have had to poop outside in the bushes through our travels. I feel for you. I have one son and he was 10 when I was diagnosed. Having three children to take care of when you don't feel must be exhausting.

I certainly 'feel ya' on this one!! At times this aspect is what really has bothered me the most. In the 1st 2 years of my dx of UC I was awfully sick and was a prisoner confined to my own home. Traveling anywhere however close to home was a horrible nightmare or impossibility. Through it all my wife and kids have been absolutely supportive and understanding! My first long trip was a 14 hr drive to Myrtle Beach, it went well, I just avoided eating, sipped liquids and had Imodium at the ready. Not fun but it worked. There may be things that you have to say 'no' to, which isn't the end of the world. Hope your health turns around and hang in there! UC SUCKS ALL THE TIME!! -dB

I am alot better and I will do things now(cause of the remicade).  Before the remicade I couldn't leave the house.  I can now but the stress of having to go is horrible.  The morning is worse for me I will go two to three times and then I eat lunch and will have to go after I eat with alot of urgency and then I am usually fine until the next morning.  I sometimes will have to go after dinner.  I usually know when I will have to go but when I need to go I have to go and the thought of having an accident is so embarrassing.  We are driving to the wedding with my father in law if I would go in my pants I would be mortified.  I was horrible before the remicade going 10 plus times a day with daily accidents.  I am alot better but it still interfers and is a big stresser.  I still miss stuff, like the kids field trips it is just never ending. Ugh.  Thanks Guys. I did get to do alot this summer but I can't go for walks and there always has to be a bathroom if there isn't I am so stressed.  I went to Great America and was so stressed(I took immodium and didn't go all day) but the stress is there.  I am blessed I can do things now where as before I couldn't do anything it just still sucks.  I have to wait for my kids after school and it sucks sometimes I have to run into the school and go to the bathroom.  We live about 4 blocks away and i can't walk.  They want to play after school and the school is locked and we can't.  Just little stuff others take for granted. 

wimomofthree: I don't have kids, but I can completely relate to you on so many levels. I am also on remicade. And for me most of the time that puts me into a full remission; absolutely no flare symptoms. But lately I've had several flares. So I know all too well, planning everything you do around whether there will be a bathroom nearby. My mom and I used to go for walks together outside, but lately due to flares I can only go indoors to a gym, where I know there will be a bathroom.

wimomofthree: I also wanted to hear your response to bookworm21's question: What are autonomic dysfunction tests? What will happen if they're positive?

To ALL: I felt like it was just me lately. But I am always like I have no energy. I'll get up in the morning, I exercise, and then I'm spent. I'll still do stuff, but feel lethargic. Constantly feeling like I have less than 1/2 gas tank of energy. Like bookworm21 mentioned about iron. I'm unsure at the moment whether I have had it tested in awhile, but I feel like I get a lot of iron through my diet. So I haven't thought it is that.

Has anyone else experienced this and beaten it. If so what did you do?

A vetran member helped me recently as I go far to many times with urgency.  I was going on my first trip and a 5 hour drive...

She said  1 immodium in the am with 2 metamucil tablets

follow with 2 metamucil tablets before food and bed.  Drink plenty of water.  BEST ADVISE EVER!  Wish I had known about this 10 years ago I wouldn't have lost my job, missed my 30th Bday etc.

Try this slowly as see what happens.

Good luck!

My Mom had UC and got an ostomy when I was 13. I wanted to give you the childs perspective.

We used to joke how we knew where every bathroom was in a 50 mile radius (it has come in handy to me now, I live in the same area). All joking aside, I hated to see my Mom in so much pain and embarrasment when she couldn't make it to the bathroom and remember having to leave when we just got some place. Being so young I did not know what she could do and no one in my family ever talked about it to me.

I wish that she had gotten the ostomy earlier so that she could have had a better life. We did do things (more than some of my friends and less than others). I just wanted her to be happy and not to have to run to the bathroom all the time.

Sorry to hear things aren't great right now. I have a couple places around town that for some reason every time I walk in the door I have to eventually drag/run with my kids to the bathroom..not fun. Also, fatigue when you are taking care of kids is soo rough.

I am not on Remicade, but I have to ask, is it normal to have this much urgency and symptoms as well as fatigue while you are on it? Could you need a higher dose? Just curious.

I understand completely! I think the worse part is the stress and anxiety I get. Last week we were on a family reunion and I had 3 accidents, luckily they were all in the mornings . Mornings are the worse for me...and during the night. It's also hard because it's not exactly a disease that is conversation friendly...I mean, how do I explain it to the friend/family/boss that I need to be close to a bathroom at all times. It's just an embarrassing disease. But I have been surprised that the people I do tell are completely understanding and kind about it. I also take an extra pair or exercise shorts, underwear, and babywhipes were ever I go...I think it helps mostly with my anxiety about going places.

I swore I did not have sleep apnea, but I do, I feel so much better now. Maybe you should get checked out for that?