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This summer I studied abroad in London and had a terrible flare-up.  I think it was the stress of traveling that did me in.  I was there for six weeks and by the fourth week I was feeling better.  I have been home for two weeks now and have been able to keep my symptoms at bay, so in that sense I am doing well.
However, in other ways, I am definitely not doing well.  I am so self-conscious about my colitis, the constant trips to the restroom, the hemorrhoids, the medication.  I feel so different from everyone in my age group that I am avoiding all of them.  It's a beautiful summer in Minnesota and I have been inside almost everyday.  I was advised to "take it easy" until I stopped having symptoms but I think I took that advice too far.
My mom says I'm just doing what I have to do to get better, and that this time will be difficult but it will pass, and it will be worth it.  But it's ruining my summer, and I feel guilty for being so lazy.  I finish prednisone in a week, hopefully the side efects will stop then too.  I've gained weight, can't stop eating, and have a moonface.  I've been sick for so long I've forgotten how to act my age, and I'm so tired all the time I'd rather just stay in bed all day.
I was only diagnosed in April, so this is all relatively new to me.  Does anyone have any advice for getting on with their lives?  I'm not having a flare up right now, so I should be normal--right?

 Reply posted for hey2308.

Hey there... where are you in Minnesota? I am in Rochester. There are a lot of support groups locally, especially through Mayo Clinic and in the Twin Cities. If you're near any of them, you might want to stop in. Then again, they could be a little scary if you're new to it... but that's up to you.

Don't beat yourself up about staying inside - you have to do what's best for you physically and emotionally. Don't let anyone make you feel guilty for that, either! It's tough for others to understand, but you have to be clear that it is what is necessary for your health.

Here's a tip, and even though it's simple and sort of cliche, I think it helps: laughter really is the best medicine! A little comic relief can be a life-saver. That includes being able to laugh about your situation - even when it's uncomfortable. After all, toilet humor works for comedy central, right? (ha) You'd be surprised how much people can handle in a funny situation. If you're not uncomfortable with it, they might not be either. Sometimes, others' comfort level depends on your own confidence. Anyway, that support system can be very helpful - being able to talk about things is a huge release of the pressure you're under with a chronic disease! Laughter also helps you keep a more positive, upbeat attitude... which can make all the difference in the world, in my own experience.

 Reply posted for hey2308.

I'ave been dealing with UC for 25 years so it can be done.

You will certainly have ups and downs and need to manage the downs the best you can medically and emotionally.  Make sure you are taking control of the desease as much as possible by communicating with your doctor while in a flare and doing all you can to get out of the flare.  Keep your life as normal as possible and find ways to have fun and relax.  Stress only makes things worse.

You are a normal person with a disease, no different than someone dealing with an amputation.  Life is different in some ways but it is still life and you happen to have an extra challenge to deal with in your life.

Like others have said, find friends and family you can tell all to and get the support around you that you need.  Might be a good idea to find a local support group so you have others to talk to that understand what you are going through.

Best wishes and God Bless.

 Reply posted for hey2308.

I( was the same way it was anxiety. My Dr. Gave me lorazapam to take as needed and that has helped a lot. I'm going out more without fear. I don't take the Lorazapam as often now that I've felt sucsess. I to have an "emergency kit" I keep in my purse. I bought a bigger purse to hold it.

I hope this helps!

 Reply posted for hey2308.

Hey,

I remember my freshman year in college, getting out of the hospital after surgery, barely able to stand for long periods of time, on prednisone, moon-faced, pimply, and everything.  What did I do that first night? I went to a party!  Unfortunately, I felt more like an object of facination rather than a friend.  After going through this a few times, I found myself skipping the big parties and going for small gatherings of close friends.  These were mainly in places with bathrooms (preferably more than one!), with people who understood if I didn't stick around until 3 in the morning.  Maybe start by ask ing 2 or 3 close friends to come over to your place and watch a movie.  I had one good friend who essentially "forced" me to go out and live life, but who would also drive me home when I started to feel bad.  Someone like that is a great help when you're trying to get your life back. 

 Reply posted for hey2308.

Hey...

I feel you. I've been off of Prednisone for a good 6 months now and since my Crohn's diagnosis I've cut off all ties with people, feeling that I have little to offer but negativity & that I will be misunderstood. I spend my time indoors, in bed, etc. I'll soon be going to an honors house & returning to college... I'm so afraid to push myself because I don't want to get any worse again. I guess the answer is you just have to will yourself to actively get better rather than wait to get better, no-matter what. I know it's hard and I'm telling myself this as much as I am telling you, but make small steps towards gaining self discipline about your goals. First, I guess, make sure you have goals. And hope. And self esteem. You said you've been eating a lot... I feel you. I was eating every 30 minutes at one point, and waking in the middle of the night to binge eat & would only sometimes remember it the next day. So a goal you could make is to gain control over yourself... I conqured this crazy emotional eating and am on a liquid diet now, and not by choice, but with will power. You can do it. I  want to make sure I go outside of the house for at least 30 minutes every day. That's my current goal. Sometimes this can be hard, but it feels so good after you actually do it... yeah. That's just me. Do whatever works for you. Push yourself. It's hard to get out of that self-nurturing rocker that we build around ourselves but let it not lull us to sleep; we'll miss out on a great deal of living and the beauty in life. Good luck with whatever you choose to do. Know you always have support here. I appreciated your story. It helped me feel less alone. With help the disease can be conqured, at least what part of the disease that is a state of mind.

Namaste,

=Carla.

 Reply posted for hey2308.

I went through the same thing you are right now.
I was diagnosed 4 years ago with mild ulcerative proctitis and by this past Oct. it had spread and I was very sick. I ended up having to quit my job and focus on getting better. I was put on prednisone in April and I have been slowly  tapering off of it because I am feeling better.
   I felt the same way I didnt leave my house unless I really had to and I worried everytime I did leave plus I would avoid any phone calls from friends because I didnt want to have to explain.
  Prednisone causes some crazy side affects like anxiety and nervousness I also have the lovley moon face. Thats why they call it the drug we love to hate. Then one day I realized I couldnt let it bother me because it was stopping me from enjoying my life so I explained to my friends/family what was going on and they were so supportive I kick myself for not telling them sooner, My friends would tell me where the nearest b-room was in a bar or a clothing store and we would laugh about it but it was helpful. The relief that I felt after was like huge weights off my shoulders. The support from family and friends is very important and you will start to feel better it just takes time.
You know what helped me to was my sister gave me a pretty purse for my b-day and it is just big enough to put my emergency kit in and still look cute, if you look inside it has everything from tp to underwear.
Hope this helps.