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The Mental Component

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Ulcerative Colitis
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Posted 3/26/2013 11:06 AM (GMT 0)
Hi. Been lurking since tentative diagnosis in August of 2011 (diagnosed for sure in september 2012). Let me just say that you all have been an invaluable resource, amazing source of information, and at times a great comfort.

I know I'm not alone in feeling a lot of anxiety about UC. Since the day in august that my doc told me colonoscopy results and I went home and looked up "IBD" I've had anxiety that practically controls my life. It creates a host of physical symptoms, including lots of gastro-intestinal symptoms, so much so that I only know I'm having a UC issue if there's bleeding.

I can still function. Since diagnosis, I got married, changed jobs, etc. But not brave enough to go on vacation yet. I pretty much go to work and stay home. I only eat a small amount of foods.

Generally my UC doesn't give me a whole lot of trouble, and I was in remission from Nov 2012 until this week. Almost 5 months. Didn't seem like it... went too fast =) Worried every day even during remission. And right now I'm in the middle of my second flare. It's just getting started so I don't know how it'll turn out.

I'm mainly looking for advice or something on dealing with the anxiety. I tried a therapist, I've read countless books, etc. But it's all I think about. Worried about the future. Worried about current and future quality of life. Worried about what my new wife married into. Worried about finances.

I've read the stats, and know that the typical course of the disease is fairly tame for most of the population, but... you know.

So anyway... I know there are people who get on with it despite what happens to them. Sadly for me most of them are probably out there living their lives - but I know a lot of you still post and devote your time to helping us forumpeople as well.

I know I'm not doing myself or anyone else any favors by stressing out. Haven't slept more than 5 hours in one night since August 2011. So what's a fella to do? How are you folks doing with this aspect?

Thanks!


_____________
Lialda 2 pills a day
Canasa 1000mg once per day
Posted 3/26/2013 11:43 AM (GMT 0)
I feel the same sometimes, i sleep more when my symptoms arent as bad. I have full severe UC and have had it for two years now. I have my good and bad days, right now I'm fighting a huge flare that may land me in the hospital again. I'm thinking I may have another bacterial infection. My lifestyle has changed completely since the o set of this, which I think was caused by heavy anti-biotic use when I had a severe case of Strep, and then the use of MAX Ibuprofen for some migraines I was experiencing. I am a very outgoing person (or was) and I think the lifestyle change is the hardest to muster. I was a college basketball player, gym rat, rode motorcycles (still do when i can) and loved the race scene. It's VERY hard somedays. I've lost a ton of weight. Was 6'8" 265 7% body fat. Now im 225lbs.
Posted 3/26/2013 12:30 PM (GMT 0)
The mental component is certainly the most tricky aspect of uc as this disease can really mess with you. While easier said then done, you should do everything you can to lower your stress levels in life. As stress can certainly aggravate your uc symptoms. There are methods like meditation (ohm lol), to finding a fun workout that'll lift your spirits like going for a jog, working out at the gym, or playing some basket ball just for the fun of it (you always feel better after a good workout). Sometimes it is an attitude thing, just let stressful things go and don't let them get to you. Sometimes it involves changing things, like working at a less stressful job, not associating with high-stress people who just get you going too, or taking on less responsibility and delegating to others.
Posted 3/26/2013 12:32 PM (GMT 0)
Similar experience here. I'm hyper-aware of any digestive pain/discomfort to the point that it's all-consuming. Not all the time but enough that it became a huge distraction at work and drove my girlfriend nuts.

I finally broke down and went to a therapist (something I likely would have never considered pre-diagnosis). She prescribed Lexapro. It's only been a week but it seems to be helping. I definitely still worry but not to the point of obsession.

I also stumbled across some breathing exercises in my GI's office. Again unlikely that I would have tried this before. But they work amazingly well for me. It really stops my mind from racing.

http://www.mypatientpoint.com/stress/stress-management-breathing-exercises-for-relaxation?secId=uz2265&ref=BP10&utm_source=redirects&utm_medium=redirects&utm_term=BP10&utm_campaign=redirects
Posted 3/27/2013 1:47 AM (GMT 0)
Thanks for the reads, replies, and input everyone. Whew, lots of stories similar to mine on here.

I try my best not to let it interfere with work or any relationships but man.... it's all I ever think about. I know I don't have it as bad as most people.

I went the therapist route and I think it's worth trying again sometime with a different one. I also appreciate the other feedback, lots of good ideas and lots of stuff to try.

Again, thanks. Sending good wishes out to everyone.
Posted 3/27/2013 2:28 AM (GMT 0)
I have a terrible time with the mental aspect of having this illness too and thank you very much for posting :)

I am sorry you're headed into a flare and I hope it's a short one with minimal symptoms. I began this illness with proctitis and I feel like I was led to believe it was "no big deal". When I first posted, I almost felt I didn't fit in because I had proctitis and everyone else had UC. I thought i had something temporary for quite some time. I was managing with Canasa and everything was great. Eventually, things got rough. I flared badly and wasn't able to control it with Canasa. I had to start oral Asacol, no big deal. It was at this time I had a colonoscopy that showed I had UC and not proctitis :( I did great on Asacol for a year, eventually that stopped working, i went on a course of pred. That didn't end well of course and I couldn't taper off. I had to start 6mp and I've been fine since. I also took an antidepressant to help with the mental component. I was so depressed and negative, I can't imagine it being positive on my condition. I think it's important that we take things one day at a time. Flare ups are going to occur, we can only hope that they will respond to treatments and remain calm. If not, we have to make the best decision for us. This illness is unpredictabe. I can tell you that you will have ups an downs but it's not all down and it's pointless to think things are bleak all of the time. Do your best. I hope things get better very quickly.

You know, you can use Canasa twice a day or try enemas. That may be enough to get you back to 100%.
Posted 3/27/2013 12:43 PM (GMT 0)

notsosicklygirl said...
Flare ups are going to occur, we can only hope that they will respond to treatments and remain calm. If not, we have to make the best decision for us. This illness is unpredictabe.

True that...but flareups may not always 'occur'. There are people there who find what works for them and stay in lifelong remission. It's possible.
Posted 3/27/2013 1:00 PM (GMT 0)
Hi Working...

I know exactly how you feel. Hopefully without coming across as too preachy here is what I think.

Sometimes I like to think as life as everyone has their own "bag of potatoes" so to speak. Each day we wake up with that bag and it's up to us how to deal with it. Some people have deformities, some are blind, some are abused, some have it worse off and some better. It's a huge mix. So getting back to the potatoes...

In that bag is our mind, and our ability to think, and reason, and make decisions. The mind is really to be used for solving problems but often spins around doing nothing constructive and that's ...worry! Worry is futile and goes through a lot of "what ifs."

Learning about meditation (I don't really like that word) and awareness (I like that word) has really helped me a lot! I bought a book a long time ago called Awareness by De Mello, and also a book called Full Catastrophe Living by Kabat-Zinn. Both books talk a lot about the subject and really what you are dealing with.

Whatever you do don't try to stop worrying because the mind is going to do what it is going to do. However the more you understand what it is, and gain the ability to watch it and actually see how worry works the more grounded and calm you'll become. It's basically the mind just thinking because it has nothing else to do at the time. The human being is the only mammal that has the capacity to watch their own thinking.

We are pretty smart creatures and adapt really well. The problem these days is too much thinking and not enough doing. In the olden days we would have been too busy looking for food.

Anyway, feel free to email me at any time if you have questions. I love the topic and am always working on it myself.

John
Posted 3/27/2013 2:41 PM (GMT 0)
This is all perfectly normal/natural. I don't really think disease has anything to do with it.

Life is full of ups and downs. It's like a roller coaster. You can't always be on top....there will be bottoms.

Finding out about the disease you have is pretty tough (btw, I'm sorry to hear). And it does trigger your mind to worry about the future/effect it will have on your life etc.

Remember, it's out of your control (somewhat). Just see what works for you (and what doesn't) and do your best. Leave the rest to nature.

Don't worry about things that are out of your control. Worrying accomplishes nothing.

When I first found out about the disease it was really hard on me, BUT I had great support system at home and work (although I do have to say that my work support system went poof few weeks ago.....but that's ok).

Also I noticed, more I researched/looked into disease......and stayed around here, worse it got. So be careful with "how much time you spend investigating".

Keep your head up and try to stay stress free. Stress will cause more health issues than we can imagine (not just from this disease perspective either).

I wish you good luck. Don't be so hard on yourself.
Posted 3/28/2013 1:51 AM (GMT 0)
You folks are awesome. Thanks for all of the great replies. Best of luck to all of you. I've been around here long enough to recognize some of the usernames in this thread too so I'm pretty familiar with some of your situations. Again, thanks.

I agree with so much of what has been posted and find it really helpful and encouraging.
Posted 3/28/2013 5:31 AM (GMT 0)
The only time this disease ever bothered me was when I was first diagnosed. I went straight to the bathroom just to cry. Calmed down and went home.
The other time was when my cat died. I just let everything pile on and it exploded. I accepted the illness but I didn't let the anger out. After the passing I had depression, severe insomnia. Was practically a zombie.

But I easily accepted I had this and needed to continuously do something for it. But that's who I am, though. It's hard to tear me down. Had to become that over the years. I don't what kind of advice I could give. This disease is so subjective.
Posted 3/28/2013 5:56 AM (GMT 0)
Wow this post is a mirror! I suffered with this illness for three years unaware, my problems
Only started when I realized the proctitis wasn't Going away. Since then, Ive had symtoms I've never had before. My scope results have never changed but my symtoms have! I believe 100% they are anxiety related IBS symtoms bought on by worry. All I can Say is meditation and breathing exercises. Three years without barely a symtom, soon as I researched this illness and found This forum all crap hit the fan
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