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Posted 5/29/2008 2:32 PM (GMT 0)
I hate this disease soooooooo much! My flare (flair?--which one is correct) is getting worse. Before this week, I'd just have to run to the bathroom in the morning, so I'd just get up a couple hours earlier than needed and I'd be fine for the rest of the day. This past week I've had to go to the bathroom multiple times after lunch, too. I've been having horrible cramping and have been so exhausted.

I started work this week. I haven't been this tired since before I was diagnosed and had lost a lot of blood. My back hurts, my legs hurt, and my head hurts. I've had 2 accidents in my underwear (luckily at home) in less than 2 weeks. I already asked to have my hours cut from 5 to 3 per day. But I've gone two days in a row, and I feel overall really crappy. I'm thinking about asking my boss to have me just come in Mon/Wed/Fri, but my parents aren't letting me ask her b/c they're afraid that I'll lose the job. They want me to work so I can "gain experience and forget about the disease." Well, it would be great to gain experience if I was in remission or even if my flare wasn't so bad (or better yet, I didn't have UC at all); and it's really hard to forget about UC when my colon feels like it's going to explode and I'm getting light-headed since I couldn't eat a snack before beginning work (that would cause me to run to the bathroom at least 5 times).

I've cried like 15 times in the last couple of days b/c I'm so tired, I'm feeling horrible overall, my parents are pissing me off, I feel bad for cutting down hours, and I'm afraid something bad will happen to me (like an accident or getting dizzy and walking funny).

I just want to rip my colon out! Sometimes, I think surgery really is the best option for me.

Thanks for listening. Actually, I felt a little better just putting my feelings into words.

Post Edited (ComedyDork) : 12/4/2008 5:47:39 PM (GMT-7)

Posted 5/29/2008 2:56 PM (GMT 0)
Hey, rant away! Sometimes just typing it out or talking it out helps. You know your boss and your body best; if it's possible, then just ask her and explain your situation. Maybe even bring in some literature about UC, and let your boss know that you need some time to get this dd under control, and when you feel like it is, you'll go back to regular hours. I fully remember the days when I wasn't even coherent until 11:00 am, which I called the "magic" hour for me. It was horrible trying to work and running to the bathroom all the time, and accidents were common for me. It's just so frustrating. Take care Comedy....
Posted 5/29/2008 3:42 PM (GMT 0)
Hey there Comedy,

It sounds like your parents put alot of pressure on you. I am sure they mean well - I'm not dogging on them but sometimes parents can want the best for us so badly that it actually causes us to do things that aren't the best for us.

Having UC places limits in our lives that other people do not have. That is a fact. It may be hard for your parents to understand that some of the decisions you will have to make, will be a direct result of UC's influence in your day to day activities. Is there a way you can talk to them and get them to take some of the pressure off?

School is important - no question - but you are more important. School, just like dirty dishes and laundry for some of the rest of us...will always be there.

I'm not saying drop out...I'm just saying be kind to your self, and take good care of YOU! And like Loneylane said, rant ll you want. Don't keep it bottled up inside. That stuff tears us up.
Posted 5/29/2008 3:55 PM (GMT 0)
Hey.. feel more than free to rant... I do :) Yes, it does sound like you have a bit too much pressure on yourself right now. I think parents think that when people take "a year" off school they are afraid they won't go back. That's from experience ;) I think scholl is important and from what I get from your post, I think school is more imp to you than the job. I really do think that you may have to choose one over the other at this time. You have to get better... without your health you won't be able to do either !!!!
Posted 5/29/2008 4:04 PM (GMT 0)
vent and rant away!!!!

I had to literally tell my husband what was going on, did not want to, I told him I had blood gushing out of my bum everytime I went and it was like being kicked in the nuts along w/it each time and how I would drive w/a plastic bag on my seat in case it exploded on the way to anywhere. I had to beat him over the head w/what was going on, then he 'began' to understand. Just a suggesstion on talking to your rents.
Posted 5/29/2008 5:08 PM (GMT 0)
I am really sorry that you are in this situation. Being 19, you are still at an age where your parents feel responsible for your choices. I can understand that they want you to do the right thing...and I can even understand a parent's suspicion of thinking that their child is trying to avoid something that they see as work. (you are not a child at age 19, but your parents still see you as their kid.) It's really hard sometimes for parents to let go and let us make our own choices, especially when the choice we make isn't the one they think they'd make if they were in the situation.

How can you reduce your stress? I am hearing a TON of stress and so just think about it - instead of focusing on what you can't do, really ask yourself, what can you do?

Do you enjoy bubble baths by candlelight?
Do you like listening to music?
Do you like to read?
If it's a beautiful day, can you go for a 10 minute walk and enjoy the sun?

Maybe that sounds hokey, but it helps me.

It sounds like a good decision to see if you can just work 3 days a week - let go of the guilt you are feeling about that. If that is truly and honestly all you can do, then accept that and express your appreciation.

Focus on getting yourself past this flare and in the meantime, we're all here to listen.
Posted 5/29/2008 5:44 PM (GMT 0)

When I flare (or "flair" as I say when I'm feeling sassy) and my schedule changes and more demands are made on my time, I always get worse....but then I adjust. You might too.

However, it is so very difficult and overwhelming to meet all your reponsibilities when you are sick.  I always think that things get done at the perfect time which doesn't always correspond to when we schedule them to get done.    Perhaps if you printed out excerpts from all the great responses you have received here from fellow uc sufferers, your parents might have a change of heart and be willing to help you come up with a solution to your problem.  You sound overwhelmed and they probably know your situation fairly well.

Perhaps it is the mom in me, but I always hate to hear when someone isn't eating enough.  That is not something to ignore.  Neither is the urgency problem or all the pain. (though spending hours with  a room full of preschoolers might give anyone some pain)  What about calling your GI office? 

Also, please make sure you are getting enough sleep. 

 

Posted 5/29/2008 6:49 PM (GMT 0)
I always feel so bad when I hear what young people are going thru. I do remember. I was diagnosed at age 15 and I am now 62. Back then the surgery was pretty difficult and doctors really wanted to do everything to keep me from having to go thru it. I had lost 30 lbs in three weeks, needed six blood transfusions before I was able to leave the hospital. I spent a month there my junior year of high school. And missed three months of school. I was so upset. I had gone from 5th grade to 11th grade never missing a day of school and I was so proud of that and then BOOM UC.....came my way.

But I did get through it, went to college and became a teacher. I had tough times too but I was bound and determined to make it. Immodium was my friend when I was teaching although I know there are some risks. But I don't know if I could have made it without it. My worst times were between 15 years old and 34 years old. I was on an off prednisone for years. Finally, by my mid thirties things settled somewhat.....in that my flares were less frequent and less intense.

But I hear you. Unlike other chronic diseases, UC seems to be somewhat unknown or the trials and tribulations, the pain that goes with it, go unknown or unappreciated and misunderstood for sure. When I was a kid, and was diagnosed I used to wish I had diabetes because people understood that disease and it did not seem to be an embarrassment.

I wish you luck in dealing with this. Hang in there.
Posted 5/29/2008 7:32 PM (GMT 0)
ComedyDork,

I'm sorry you're going through this, and I really understand too. My parents also seemed to think I was exaggerating or using it as an excuse and that is so hard to deal with. Especially when they try to push you into things you feel too sick to do.
I'm almost 23 and I've been seriously considering surgery for a little while now. I'm not in a severe state of health at the moment as you are, but I was previously and know I probably will be again. But I feel that the surgery would go better if I have it done while I am healthier so I can recover quicker. When I think back on all the things I missed out on I sometimes wish I had done it back then... My senior prom was cut to only half an hour because dinner made me sick.. I currently have very few friends because I constantly blow everyone off when I'm not feeling well.. I stopped going to college because when I was there I was always falling asleep or missing class or not being able to concentrate, when I wasn't interrupting to run to the bathroom several times, which can be very embarrassing.
Because we don't always LOOK sick on the outside, it's really hard for people to understand, and I don't know if you're like me, but I think I do a great job of hiding my pain and sickness, so people look at me and see someone who looks healthy but a little skinny, and they don't believe when I tell them it constantly feels like my intestines are being fed through a meat grinder.

Anyway, I'm just kind of babbeling here... I just wanted to let you know that you're not alone in your thoughts and I hope you can get something worked out for you that is best.
Posted 5/29/2008 11:45 PM (GMT 0)
I hear ya - UC definitely sucks.

Maybe you could think about spreading your bachelor's degree out to 3 or 4 years? Two years is awfully fast to get a bachelor's degree. If you could spread it out, maybe it would reduce the stress load? You can always take time off before going on to graduate school, too. What's the hurry to get through school? For me personally, I wish I was still in school...the "real world" is definitely not as great as college, IMO. I know your parents probably mean well, but you need to do what you feel is best for you. And try not to feel bad about asking for less hours at work. Your number one concern should be taking care of yourself. Do what you need to do to do that. Hope things get better soon.
Posted 5/30/2008 1:14 AM (GMT 0)
Your parents sound pretty obnoxious. Having taught 2nd-5th graders myself, I know that it's not easy tending to young children 5 days a week if/when UC is wearing one's body out. You need appropriate medication, as balanced a diet as you can eat, vitamin/mineral supplements, and plenty of rest. PERIOD. Anything else is of secondary or less importance right now. Have your parents read the Salix Pharmaceuticals Website Newletters (Archive 2004-2007) on IBD, written by the top IBD-treating gastroenterologists in the U.S. That will hopefully clue them in on what you have to deal with during a flare. Shame on them for not giving you the support you need in such a trying situation! / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)
Posted 5/30/2008 6:03 AM (GMT 0)

ComedyDork, I am sorry you are not feeling well. Your parents probably only have the best intentions. We want the best for our kids.  Amazing that you are completing college in 2 years! Did you take alot of AP classes in high school? You definitely don't sound like someone who is trying to use UC as an excuse to get out of doing things.
I know that when Bratcat is in a flare, it affects her in the morning (and sometimes afternoon) but generally, she "seems OK" by the late afternoon/evening. Many times she has gone out towards the end of the day (to a meeting, work, playing in a concert, etc) even though she was too sick to go to school that day. I am sure there are several people who see her in the evening and can't understand how sick she really is.
I think, most important, is for you to take care of yourself right now. If that means not working this summer, whether full-time or maybe not at all (and you can afford it), then give yourself the chance to heal.
Have your parents gone with you to the doctor appointments? Have they read up or visited this forum to learn about UC?  I know there are times that we push Bratcat to "suck it up" and get through the day (or whatever is going on). But generally that is when she is getting better but has that fear of how she might feel during the day. But when she is truly in a flare, I can't imagine her doing anything!
She will probably have surgery at the end of June/beginning of July. She will have to miss even more work (she started a month before her first flare and has had 3 flares in 1-1/2 years). Hopefully they will work with her as they have in the past. She loves the job. But if they had to replace her, that would be OK with us. Her health is most important. Hopefully this surgery (and the summer to recuperate and adjust) will make her healthy enough to have a wonderful senior year.

When I read your this post tonight, the words to a song popped into my head but I couldn't remember the exact lyrics or the song name. It was on my mind for hours until I remembered that it was "James" by Billy Joel. The lyrics I was trying to remember were "Do what's good for you, or you're not good for anybody".  Please make yourself your first priority.
 

Posted 5/30/2008 2:40 PM (GMT 0)
Thank you for "listening" to me and for all the replies! It really means a lot and makes me feel better.

ediekristen--I know what you mean about not having many friends. I haven't really made any friends in college just b/c I'd be so worn out after going to classes while in a mini-flare. 

Sara14 & Bennie--I'm graduating so early b/c I can! 

Bennie--Good luck with Bratcat's surgery! Please keep us updated on her. As my flare keeps getting worse, I can't help but to think about surgery. I had to move up my GI appt. from the end of June to next week to discuss some "options" since my current medications are obviously not working and I refuse to take prednisone.

As for the work situation, I think I am going to have to quit this job. Last night, halfway through dinner, I had the most horrible cramps. I doubled over sinking to the ground and sobbed--I've never been in that much pain. Weirdly and luckily, it died down after some time with Heating Pad for 20 mins. I also was feeling light-headed at work when we were outside at the playground and I've actually been feeling light-headed for the last hour. I told my parents that I love the job but it's taking a huge physical toll on me. To which my dad responded, "Well, it's your decision." Oh well. And yes, I've had at least parent with me at all of my GI appts. and they've both read CCFA literature on UC. But they're both strong believers, esp. my dad, that your mind controls everything and that if you think postively, your body will respond in a positive manner. Which I'm sure is true to some extent, but not always, esp. in dire circumstances. 

Post Edited (ComedyDork) : 12/4/2008 5:51:07 PM (GMT-7)

Posted 5/30/2008 11:19 PM (GMT 0)
Hang in there! Don't worry about leaving your job. Obviously you aren't making the decision lightly and you are making your decision based on really good thinking. You need to take care of yourself as everyone here always says.

You said that your parents believe that the mind can control your body. That's probably true to SOME extent, but hopefully you can educate them to understand that all the positive thinking in the world won't cure any of us. One of my doctors once said this: Does stress effect UC? Yes, in the same way that if you have a migraine, stress is going to make it worse.

I thought was very helpful. The disease is aggravated by stress but not caused by it. And honestly, I've been as positive as a person can be for a freaking long time and it has not done me much good when I'm running to the bathroom with a smile on my face!

Your question about flare vs. flair, made me realize that I want a tee-shirt that says, "Flare with flair!"

How's that for positive thinking?
Posted 6/1/2008 2:14 AM (GMT 0)

I'm sorry that your parents are giving you such a hard time. We all can see that you are a person who pushes themselves. And as for what will you do this summer--if you feel well-volunteer! Not only is it rewarding but you can usually fit it into your schedule and it looks great on college applications. Bratcat works at the library. I know each summer they have a childrens summer reading program and need volunteers to listen to the kids tell about the books they've read. There are food pantries that often need help. People in nursing homes love to have visitors.

You are very smart to realize that you are reverting back to bad habits from high school (scratching). Maybe you can look into some form of meditation. Some way to take you to a more peaceful place for a few moments. You can always take up a hobby to keep your hands busy. Make lots of crafts to be added along with the meals that are delivered with Meals on Wheels. That was Bratcat's Girl Scout Gold Award project.

Keep venting here. We are here to listen.

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