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Ulcerative Colitis
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Posted 9/10/2010 2:50 PM (GMT 0)
Hi All,

I was hoping some of you can offer me tips or advice on how you deal with the anxiety/worrying that comes with this disease.

I am in remission right now, but still can't seem to break the anxious/worrying feelings. I think it's the constant reminder of this disease every morning when I go to the bathroom to poop. Maybe it's constantly reading these forums? If I had heart disease or something else, I don't think there would be that constant reminder (using the bathroom - even if its a normal 1-2x a day). I am not sure if that made sense. But it's not really the worrying of having to go (I am in remission), but more about having a chronic disease of which I have no control I guess?

If I stay extremely busy, then I seem to do just fine...my mind is pre-occupied. However, it's not as simple as staying busy - I can be mowing the lawn, but my mind can be wandering and having these worrying thoughts. I guess I am trying to figure out how to stop that from happening. Besides, realistically speaking, there is no way I can stay busy for the entire day - I might relax and watch TV for an hour or something.

Any tips? How do you guys deal? I hate to be a worry wart, but it's exactly what I am right now. I rather not take any prescription medicines to help either.
Posted 9/10/2010 3:34 PM (GMT 0)
I have lost my fear of the disease somehow. I think after years of ups and downs, it just doesn't scare me anymore. Over time you will learn not to worry about it so much too. I was just like you though when I was first diagnosed. Every little gurgle in the belly or cramp can set off the cycle of worrying... like I said, that will fade over time.

It takes some time to come to the realization that whatever this disease throws at you, you will overcome it and carry on. For example, I had a flare so bad I was in the hospital for two weeks over Christmas just when my wife was starting a new full time job and couldn't take time off,we had two young kids that needed taking care of, and we had just moved thousands of miles away from friends and family so we didn't know anyone or have anyone close by to help us. Somehow we got through it just fine. Learn to trust yourself that you can handle whatever comes along and that will ease the worrying I think.
Posted 9/10/2010 3:34 PM (GMT 0)
Some days are easier than others, that's for sure! Exercise seems to help, but not always. I've become painfully aware my state of mind is the biggest factor. My mother died suddenly this past April and the colitis has gotten much worse since. I'm trying to cope with it as best I can because when I don't my colon seems to take on the grieving for me!  

Posted 9/10/2010 6:00 PM (GMT 0)
I just learned about a supplement called L. Theanine....maybe something to add to the L. Glutamine. I'm definitely going to add that as well as the l. glutamine to my supplements soon. Don't know what dosage to try with either at this point..have to do the homework. How did you decide on that dosage you're using?

Regarding worrying....the trick is to recognise what your meds can do for you...and I'm truly hoping you're on maintenance Rowasa???? rather than saving them "when necessary".
As you get more experienced with treating flares early with the rectal meds....meaning at first symptoms....you will realise your anxiety will lessen.

Hang tough..

q
Posted 9/10/2010 6:17 PM (GMT 0)
Hi, we are in the same boat!  I understand you completely!  I'm in remission as well (dx July 2009) but worry about a flare.  I'm actually starting to feel more comfortable with all this, realizing that a loose poo here and there is not the end of the world or mean that a flare is imminent.  People with healthy colons have the D sometimes..and gas...and cramps. 

I try to look at things over a week instead of one day at a time. 

Keep on your maintenance meds and do watch for the signs of a flare but try not to stress yourself out...that won't help.  Easier said than done though, I know.

I also rely on the veteran members here, they have solid advice and experience.

Posted 9/10/2010 6:26 PM (GMT 0)
Answered the question about L-glutamine in the other post.

I actually feel like the meds help me a lot quincy. I think what worries me is reading on here and other places that meds stop working for some people for no apparent reason. I guess it's the lack of control - there is no guarantee. I know life is like that...but I guess I haven't wrapped my head around it entirely. Regarding the Rowasa...I stopped it because it was making me go 2-3 times a day more than I needed to. I will start it the first sight of any flare, which usually happens for me in the Feb.-Mar. timeframe.
Posted 9/10/2010 7:48 PM (GMT 0)
I am exactly the same way! Extremely stressed over being ill. I have awful anxiety and can't help but think negative all the time because I've been unlucky with this stubborn flare. I take klonopin but it only helps so much. I can take anxiety medication and still be anxious. I think the times I do the best is when I am focused on something I enjoy, hiking or cooking, going to work makes me worse because I get stressed about using the bathrooms there and the day to day grind makes me nervous. I am a hermit - wish I didn't have so many obligations so I could live how I choose.
Posted 9/10/2010 7:55 PM (GMT 0)
NiRo, I've been reading these forums for a little while without registering but your post inspired me to log on and reply. I have two thoughts.

The first is: I think you're right that reading about other people's bad experiences will lead to obsessive thinking and anxiety. I've seen this happen in myself on these boards and elsewhere. More than once, I've had to close the window here and turn my mind to something else. Don't borrow trouble. Or, as another friend says: Worry is interest paid on taxes that may never come due. There's a balance between knowing about your disease and your body, and projecting into the future things that may or may not ever become an issue.

The second is: Both with UC and with other life challenges that I've faced, the single most important thing that has helped me stop my mind from going out of control is meditation. When I sit still and watch my mind at work, I can see that the purpose of mind is to create thoughts, but the vast majority of those thoughts simply aren't true. They're predictions of the future that don't really have a basis in reality. They're the thoughts of what I "should have said" in a past conversation. They're rehearsing for a part I may never play. Which is not to say that all thoughts are wrong or bad. But knowing that just because I think it doesn't mean it's true, and knowing that in a very visceral way, provides me the spacious awareness that will allow me to choose which thoughts to pay attention to and give weight to. It's also a really good way to see what else is beyond our control (emotions and sensations are big ones, as well as many future events) and to become more comfortable with that.
Posted 9/10/2010 8:34 PM (GMT 0)
Janey - Welcome to HealingWell and for giving the best down-to-earth description of meditation I've ever seen! I hope you'll introduce yourself in a new thread and tell us about yourself.

NiRo, the whole "having an illness" thing is a tough thing to get one's head around. That question again: am I a sick person with periods of wellness or am I a well person who has periods of illness........ I define myself as the latter, really. it's how I cope.
Posted 9/11/2010 8:07 AM (GMT 0)
Niro, thanks for this post. I feel that you described me. I'm always scared. Anytime I have a runny poop or go 3 or more times in one day or lose 1 pound my heart starts pounding uncontrollably. I am so thin and when someone at work comments on how thin i am and how I was just right before, i feel sick to my stomach. I've always been somewhat psychosomatic pre-uc and realizing the lack of control that comes with this condition, I always think of worst case scenario in my head. I find the replies here helpful so thank you to you all too. Hope I can be stronger all around soon. Sorry not much help to you here.
Posted 9/12/2010 2:19 PM (GMT 0)
Thanks all, I really appreciate it. I am planning on printing this thread so I can re-read these replies and hopefully implement some of these suggestions.
Posted 9/14/2010 1:59 AM (GMT 0)
My hubby tried hypnosis. He didn't find it decreased his symptoms, but it helped immensely with the fear and anxiety he was feeling. I noticed a big change in him afterwards - taking our kids to the park was something fun, rather than a big worry about "what if I need the bathroom" for example.
Posted 9/14/2010 2:35 AM (GMT 0)

NiRo and company,

 

I would love nothing more than to give you a sure-fire answer. The all encompassing advice that poofs the worries all away. But I too worry, and I too look for solace, and so as I cannot often think of an answer for myself, I’m afraid I do not know what to offer.

 

I will say this. Reading your stories gives me solace, and in some strange way, hope. In these posts I see your fears, your horrible stories. I feel your pain as you lament going to the bathroom each morning, something world takes for granted and yet gets our hearts pounding. We—the only people who examine poop without humor, but with worry for what our lives will be dictated by a commonplace bowl movement.

 

That’s the scary thing. But hearing this from you, it reminds me, we’re in it together. We’re fighting together. We’re afraid, but we’re here and not giving up on ourselves. Or eachother.

 

Sorry for being so wishy-washy. Being in a flare for a year, direct effects and side effects and all, will do that to you (I’m sure many of you can relate). But NiRo, and all the rest, I’m thinking of you too when I use the restroom, and hope that your battles are going well and you are finding answers.

 

-------------------------------

Age 23

2001-Diagnosed with UC, 6 sulfazalizine (sp) tablets daily

Remission!!

2007-Pancreatitis from sulfa drugs, switch to Colozal

2009-Bout of psuedomemranous colitis and allergy related inflammation, take Vancocin. Psuedo onsets UC. Currently on Lailda 3 times daily, still trying to recover from UC and allergy onset, not sure which

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