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Posted 3/22/2009 7:58 PM (GMT 0)
For me the anxiety for getting a flare and for getting worse is much more handicapping/limiting my life than the disease itself. I was diagnosed now 10 years ago and is now 4o years old.

I all these years it has never become really bad. Only once have I had real problems - all the other (many) times I have "just" observed blood in the toilet and mush.

Basically so sad that this crap takes up so much of my time mentally. Daily I am scared og getting stressed, scared of having to much anxiety because it might trigger.

I am sure I would have a total different job today, if I hadn't limited myself from taking chances because of anxiety over the anxiety.

I am affraid of travelling because I have had flares on travels etc etc etc.

How do you guys manage - limt the "mental handicapping" ??

For me it is/has become a mental disease!!!

 

Posted 3/22/2009 8:02 PM (GMT 0)
For most of us I think it effects our mental state greatly...I managed to combat the anxiety and depression with regular daily exercise, plus selling my car, buying a van and putting one of those port-o-pots in the back (I took the back bench seat out to accomodate the potty) has made a world of difference for me leaving the house. It's horrible how this disease alters every aspect of our lives, from what we drive to what we wear.

:)
Posted 3/22/2009 9:07 PM (GMT 0)
I approached it more from the angle of learning to manage the disease and its symptoms so it no longer was a mental burden to me. Research and experimentation gave me a feeling of control, even in the early days when I was really ill. (My first GI telling me there was nothing I could do but take my medicine and accept I would be chronically and miserably ill until my colon was removed probably had the effect of putting alot of fight and determination in me.)

For me personally, I also found that religious belief, prayer, yoga and meditation helped me keep a positive outlook and control negative thoughts and "what ifs." Mindfulness meditation was particularly helpful.
Posted 3/22/2009 9:27 PM (GMT 0)
So true, this affects us so many ways. Taking it into consideration in everything has become automatic for me, and some anxiety is always there. I just try not to beat myself up for not being able to do things, like run an errand I had planned or attend an event I was looking forward to.

I'm always comfortable at home, of course, so I've made it a priority to make my home my favorite place to be, invested in making it cheery and comfortable. Like having a nice garden to spend relaxing time with, and a nice sunny room with a soft couch for napping or curling up with a good book, and equipping a home gym so I don't have to go anywhere to do the strength training that I like to do.
While my life has been limited in some ways, I can't complain.

So please try not to beat yourself up for your choices or get upset about what could happen. Take control, do what works for you and it can still be good.
Posted 3/22/2009 11:12 PM (GMT 0)
I have anxiety and depression on both sides of my family. So when I noticed it starting to get worse, I talked to my GP. We decided to try Effexor XR - and I love it! I feel like me again. I found when I am in a long, drawn out flare, I may need to increase my dose.

The Effexor doesn't take it all way, but it helps keep it manageable. Before the meds, I knew my anxious feelings were there, but no matter what, I couldn't calm them. With the Effexor, they are still there, but I'm able to brush them aside and move on.

Also, as Peety said, my home is my sanctuary. I crave being there when things in the rest of the world are making me crazy.

I hope you find something that works for you.
Posted 3/22/2009 11:14 PM (GMT 0)
Xanax as needed.
Posted 3/23/2009 12:07 AM (GMT 0)
Amen, Xanax as needed here too. I have been taking .25 here and there to help with anxiety. It won't fix everyday anxiety and I wouldn't recommend taking it that way since it is so highly addictive but for those social events that you have anxiety about, you should try it. I'm gonna look into your advice, Dakotagirl... I haven't taken Effexor or heard of it for that matter but I want to look into it. Does it help with the fatigue?? What are the side effects??
Posted 3/23/2009 12:16 AM (GMT 0)

For years I had anxiety and did not deal with it well.  After menopause and I had to go off the hormones I tried several anti-anxiety pills.  I could not tolerate some but found small doses of Xanax when needed works for me.  I highly recommend exercise, meditation and trying some other methods also.

ElaineNY

Posted 3/23/2009 2:15 AM (GMT 0)

supersaw - consider yourself very lucky - I know you are a laid back, college student right?  Well, what makes us anxious is the urgency, not finding a bathroom, accidents in front of friends/family.  We get invited out of eat and can't go because we are too anxious/nervous about what might happen.  When I know I am going someplace new and don't know the bathroom situation I get very nervous.  Will I be near one - will I be able to make it.  Then you get your UC somewhat under control - you still are worrying about the same things and hard to relax about it until you "test" it out.  I went out yesterday - shopping with husband - I knew where all the bathrooms are, he knows if I disappear where I am.

On the way home, he wanted to stop to have dinner.  I have learned how much I can eat and about what so agreed to a restaurant about 10 minutes from home.  It is not fun to be so anxious/nervous and impossible to just "forget it" or "turn it off".  My Xanax and Imodium is how I get out and now I have not had to use Imodium for weeks - it will take a while before I can "relax". 

Hope this helps you understand!

ElaineNY

Posted 3/23/2009 2:25 AM (GMT 0)
I'm not surprised that supersaw cannot relate to the anxiety aspect of this DD, supersaw has already stated in another post about "accidents" as "why don't you just hold it"...supersaw is clearly one of the most mildest cases of IBD on the board because he/she doesn't seem to have major issues the rest of us seem to suffer with.

:)
Posted 3/23/2009 2:51 AM (GMT 0)

You obviously have never had REAL urgency.  For instance, I had gas/cramping so I knew I needed a restroom - NOW!  I stopped at a Dollar store that I knew had a public restroom in the back.  I hurried (and I use a cane) and got there to find it locked and you had to ask for the key up front.  I made it but barely - accident almost - very lucky.

The is what makes some of us anxious to go out again.  Glad you have not had that problem occur and I hope you never do.  It can severly limit your leaving your home, etc.

 For the trip across the desert - wear a diaper or take your port-a-potty!

ElaineNY

Posted 3/23/2009 2:54 AM (GMT 0)
supersaw, what about a common everyday trip on the interstate, when the urgency hits, and you are 3 miles to the next off ramp, and then maybe another mile to a restaurant/gas station?

You seem to have the answer to everything, when in fact you are of no help to anyone.
Posted 3/23/2009 3:17 AM (GMT 0)
I try to plan ahead where I am going and find out where some of the bathrooms are ahead of time. I have no problem "going in a public bathroom" but like the rest of you I fear if I will find one, etc. I am flying to LA soon and have never been there. I am nervous about take off and landing. I am nervous about the ride from the airport to my friends apartment. Will we hit traffic? The worst is traffic that can make a mile last an hour!! I can handle it on a rural highway cause I can always run into the woods. No shame in that. But a city highway is way scarier! I will be bringing xanax and immodium "for sure!"
Posted 3/23/2009 3:36 AM (GMT 0)
supersaw, it's not as easy as you make it sound, I'm glad you can't relate to what it's like to have an "accident" in your underpants, but with IBD you cannot always be sure when something is actually going to come out or not, it's not that easy to always judge because that's part of the nature of the beast when it comes to this disease (at least for most moderate to severe cases), and for some of us, even if we don't eat anything for hours after I get up we still have urgency issues that would cause many of us to crap our pants if we couldn't get to a toilet instantly when the urge hits.

You must have it mild and I'm honestly happy for you if that's the case but you do seem a little insensitive to others that don't have it as good as you do.

:)
Posted 3/23/2009 3:45 AM (GMT 0)
Supersaw,
It is not just a matter of 'stopping somewhere close' when you have extreme urgency issues. A lot of us dont have time to go in and ask to use a bathroom let alone pull over on the side of the road quick enough! And many of us dont have issues using restrooms regardless where we are... we just have anxiety issues about finding the washrooms and being close enough to get to them if need be. In order to fully understand you'd have to experience the extent and severness of each of our individual diseases.. which in every case is different. You said "if there are some people who, when they have urgency, lose it immediately, then so be it.." (Hence, this is where our anxiety issues come from) I envy you for seeming to have a relatively smooth journey with your case... I can only wish!
Posted 3/23/2009 1:38 PM (GMT 0)
there's got to be a middle ground here- I can understand both "sides", Qvist & supersaw. Yes, the anxiety of wondering "Will I make it?" is rough- so much so that we opt to stay home often. However, we stay home & everything is fine, then think "Why didn't I go out?". And many times, it is true that the urge doesn't necessarily mean a bm, or mucous/blood. It's just that, an urge- sometimes you can ride it out by telling yourself "There's nothing there, I don't have to go to the bathroom, I just went". Deep breathing, calming techniques, etc. all help with this. I don't really get anxiety anymore- I did for a long time, a few years, but finally realized that if any accidents happen, so what? So they happen. Not that big a deal. I've nearly always managed to be able to pull over & go on the side of the road, if need be. And when I'm out, I usually do go into every bathroom possible, sometimes more than once in any one store! I always think the store "detectives" are sure I'm trying to shoplift, after 2-3 bathroom trips over one half-hour K-Mart jaunt. Obviously I'm not talking about being in a severe flare- then, forget going out, you are indeed going to the bathroom all the time! But on a day-to-day, doing alright period, I've found that when you do just suck it up & go, things usually are fine. Not always- I had an accident last week, during the ten minute ride home after dropping my daughter at school- just could not hold it. I wound up pulling over at some conservation land, running off in the woods, cleaning myself up, going home, getting changed & doing laundry! The only scenario that truly causes me anxiety is traffic in an urban area- no trees/woods to dash into, plus everyone in their cars would see you. So that does cause some anxiety. But I very rarely put myself in those situations, & if I think I will, I may take Immodium prior to the drive.

Posted 3/23/2009 1:44 PM (GMT 0)
Eva Lou - you hit the nail on the head. I had TONs of anxiety for a bit and didn't want to go out and do anything for fear of getting sick. I realized the route of that was fear of an accident. With the help of a good friend and my therapist we went over the "what's the worst that would happen?" It would be horribly embarassing, smelly, messy, dirty, etc... but the sun would still come up the next day and it most likely wouldn't be on CNN. I could live my life in my house afraid of my fear or I could take my chances and realize if it did happen, in the long run, I'd be ok.

But, I still have wicked anticipatory anxiety. I've made peace with the "if it happens it happens" but I still hate feeling like I have to go, sweating, heart racing, clenching while I try to make it to the bathroom. Now I fear that more than the accident. It is a vicious cycle.
Posted 3/23/2009 1:51 PM (GMT 0)
Wanted to add 2 more things: I went a really long time undiagnosed, thinking this was all in my head. I had to learn to cope with it because I was a teenager and not going to school or out with my parents wasn't really an option. I try to think back of all the things I was able to do, because I had to. And remember that even though I wasn't diagnosed I still had crohns then and was probably even more sick.

Finally, I did something around the time I had my realization that I had to stop fearing accidents. I took a piece of paper and folded into squares. In one box I wrote all the times I went out without fear and everything went great. (This was a very small list). In another box I wrote all the times that I was scared went out, it went bad, and I regretted it. (This was also a very small list.) Then I made a list of times I was scared, went out and everything went great. (This was a pretty long list). Then I made a list of times I was scared, went out, got sick but made it to a bathroom without incident and still overall had a decent time. (This list was very long). Every time I look at this list it reminds me of all I have accomplished. When I have anticipatory anxiety I look at it to remind myself that the chances are things are going to be fine. And it feels great to add to that list!
Posted 3/23/2009 2:00 PM (GMT 0)

Thank you all.

I think my Anxiety is maybe a bit different? I think it is pretty understandable that you will be nervous, or even very nervous going some where if you suddenly can have the urgent need to go.

Luckily I am not in that situation as I don't suffer from that kind of urgency. In the last 10 years I only had one flare that severe and it lasted 3-4 days, then Pentasa Clysmas knocked it down. Noramally my flares are blood, muscus in the toilet, but without severe urgency.

My anxiety - that regulate my life a long way - is the fear of provoking a flare. If I just knew future flares would be like past flares it wouldn't be a problem. My fear is that future flares (my condition) will worsen. So I fear binging myself in stressful or anxiety situations that will then cause a flare, and that that flare will be worse than the previous ones - that I/it will trigger me getting really sick.

I high degree of "What if....." ........ "Fear of the fear" etc.

Thus the thought of things like travelling, changing job, etc. etc. trigger big anxiety.

I guess you can say I fear the future.......

Posted 3/23/2009 2:45 PM (GMT 0)
who doesn't??? Right now, I'm fearing December 2012- thanks to my husband who had to remind me of the Mayan calendar, the ancient Chinese calendar, the Hopi prophecies, the supposedly massive solar storm due to hit then, the weird astrological nonsense scheduled to happe...... Not that I'm a big believer in things like this, but still... it freaks me out. You know Qvist, while the unknown is frightening, you can try to look at it advantageously also- so you move, change jobs, etc.- these things could help your health! Not to sound too simplistic, but try to look on the bright side...a la Monty Python.

Posted 3/23/2009 2:49 PM (GMT 0)

Boy, as you get older you learn to live in the moment.  I saw my Mom worry so much about things she could not control it made her sick!!  Don't do that! 

Attitude is everything!

ElaineNY

Posted 3/23/2009 3:20 PM (GMT 0)
You are right of cause. My anxiety is maybe deeper than the UC and the UC was "just" the trigger for that.

Mayan calender?? .......... Well someone recently told me about the pronosis for the coming years as laid forward by Nostradamus .... darn :-))
Posted 3/23/2009 3:21 PM (GMT 0)
Saw, my urgency is SO severe that I've messed in my pants at HOME because I couldn't get to the bathroom soon enough. I started towards the bathroom as SOON as I felt the urge (and my house isn't big...just 1350 sq ft) and still didn't make it. So PLEASE STOP with the "just hold it" stuff. It just makes those of us who have real urgency angry.

You don't see me just telling you to quit being a baby and get a ball with bigger finger holes, do you?
Posted 3/23/2009 3:28 PM (GMT 0)
The only blessing of this disease is that it has made me learn to be patient and to live in the day. After nearly five years of uncontrolled symptoms, I still cherish each day of remission. I know I could go into a flare tomorrow and never be in remission again. If that happens, I'll have surgery, but if I worry about it today I might as well already be in flare.

Sometimes counseling and medication can be a godsend for the anxiety chronic illness can bring.
Posted 3/23/2009 3:33 PM (GMT 0)
Oh, and I should say that I'm really glad I'm on Zoloft, even though it's the lowest possible dose. I was diagnosed with postpartum anxiety/depression in late November...my at-the-time undiagnosed UC probably contributed to it! Anyway, I think it's really helped me accept the fact that I have a chronic disease and deal with it all mentally.
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