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Posted 11/13/2007 5:34 PM (GMT 0)
Well, I was diagnosed back in 2003 and it was a shock to me.  I felt like I was dying, at first they thought it was stomach bug so they gave me cipral then after many tests it was declaired UC.  I have been through my fair share of flare ups and i'm going through one right now, where i'm fine and functional but i'm always wondering how my next trip to the bathroom will result.  How does everyone else cope with this Disease? I try to limit my stress and I have given up food that I know will give me flare up's like the dreaded spicy food group.  I just want to live a normal life, stress free, desease free but I know that is not possible, although I know I can live a normal life I just have to adjust it a little.  How does everyone else cope?
Posted 11/13/2007 6:11 PM (GMT 0)
Welcome Mr 202 to HealingWell! This indeed is a tough illness to cope with, but with the right meds many have been able to achieve some sort of remission. What meds are you on? Do you take a probiotic? I'm considered in Remicade remission right now, and I feel well most of the time, but I do have my "flare" feeling times. I have a bit more urgency, and just feel kind of crummy; oh and the "smelly" bms are the first sign I'm under stress! I suppose that everyone just has to find what is comfortable for them in the food and med category; we are all so different that it's hard to pinpoint what work for some and not for others. I probably haven't really answered your question, but I did want to welcome you, and let you know that this is a very supportive and caring group -- feel free to ask any questions of us! 

Posted 11/13/2007 6:46 PM (GMT 0)
The way I see it I'm a healthy person who from time to time gets sick - just like the rest of the population. There is no way I'm classifying myself as suffering from a chronic illness or using whatever other terms the medical people use for a disease they know little about.

I take my meds, I watch my diet, I eat healthy and I control my stress. I lead a normal life. UC failed to take that away from me.

D
Posted 11/13/2007 7:22 PM (GMT 0)

Right on damo123!

When I was first diagnosed with UC I was very depressed.  Since then I figured why let this get me down?  I still have to live my life, right?   Been okay since. 

By the way,  welcome Mr202.  As far as coping, a good thing is too learn all you can about UC so you'll be better equipped to fight it.  I hope that helps....

Take care.

Posted 11/13/2007 7:58 PM (GMT 0)
Mr202..welcome to the forum!

I sooooo agree with everyone here. There's lots of info/sharing and although we may all not agree on some subjects..it's OK because you can formulate your own opinion based on your own research and what makes sense to you.

Your experiences are also equally as valuable to others..you've been dealing with UC for a few years already.

Where in the colon is your UC...throughout or limited? What meds are you on/were you on?

What supplements are you taking?

Food doesn't cause flares, but it does have an impact on how you feel and can exacerbate symptoms.

The best thing I've ever done for myself is do lots of research and find how things work for me....also connecting with others and having a great doctor has been my lifesaver.

Welcome again,
quincy
Posted 11/15/2007 6:53 PM (GMT 0)

damo123 said...
The way I see it I'm a healthy person who from time to time gets sick - just like the rest of the population. There is no way I'm classifying myself as suffering from a chronic illness or using whatever other terms the medical people use for a disease they know little about.

I take my meds, I watch my diet, I eat healthy and I control my stress. I lead a normal life. UC failed to take that away from me.

D

     Spot on Damo, i refuse to call this an illness , i prefer 'condition' . During my last ( and worst flare ) one of my best friends was dying of lung cancer ,she died on her 47th birthday . SHE was ill and it stopped me pitying myself seeing her like that .

Tab

Posted 11/15/2007 7:03 PM (GMT 0)
I visited my GI yesterday and he made the point to me that it is his patient with a good attitude that do best with UC, irrespective of whether they have pancolitis or whatever. Now it's easy to have a good attitude when things are going well granted but I still think there is a strong psychological element to this illness.

In my view the minute you say things like "i have a lifelong disease" or classify yourself as "chronically ill" you let UC win.

I have a stigma in my eye and I suffer from short-sightened-ness. I will wear glasses all my life. Would you call me chronically ill becasue I have an eye defect that currently can't be cured with meds. Not a chance. Theres absolutely no way I'm calling myself chronically ill. Doctors and others can use that categorisation. I will NEVER!
Posted 11/15/2007 7:30 PM (GMT 0)
i have livelong diseases/conditions/illnesses/disorders (asthma/UC), also a fatal one called PSC. I'm still living/functioning with them by using my meds and adjusting what's needed to function to the best of MY ability.

Acceptance, understanding and getting on is a huge part of not letting it "win" ....although, I've never felt in a battle with UC, asthma, chronic pains or PSC..ever. Frustrated, yes.  But as long as I have options...I'm always hopeful. 

Damo..The same with your astigmatism....you have ways to function with it....and as you get older, your vision will decrease and require changes in prescription glasses/contacts to allow you to function to the best of your ability. If you ignore those facts, you could cause serious harm by not seeing where you're going/driving or what you're reading.

I'm wondering if this is sometimes cultural or even a M / F perspective thing...that having illness/disease can be viewed subjectively (depending on if looking in or from within) as being a sign of weakness? 

My father-in-law is quite deaf....and despite the pleas of the family, he refuses to get a hearing aid.  How much has he lost out in not caring what he hears from others?   I think it's a symbol of weakness to him and that he perceives that from others it is as well.  One thing he does a lot is nod and smile a lot....but I sometimes think it's selective, for things I assume he'd never hear, he has a comment that's appropriate.  Now, with him.....we'll NEVER win and are in constant battle...maybe it's time for us to just make sure we speak loud enough all the time.

quincy

Posted 11/15/2007 7:46 PM (GMT 0)
I am going to differ from everyone else here a bit... the day I started viewing my UC as a chronic disease and not just something that would go away eventually, was the day I started taking charge of my life again and moving forward. I needed to accept that I have a chronic disease before I took my medication and lifestyle seriously. It didn't do me any good to ignore the fact that UC is chronic.

I will be the first to tell you that I lead an absolutely normal life with this disease. I have an intense career that I love. I travel all over the world and United States. I am pregnant with our first child. I give as much as I can to everyone I love. People around me would never know I was sick if I didn't tell them. I don't let UC get me down... and I refuse to let it beat me. That being said, I didn't get in that mindset until I fully accepted that I have a chronic disease that isn't going to go away.

I think you just have to do what works best for you... both mentally and physically. No two of us are the same. You just have to dig down deep within yourself and find that strength to move forward. That means something different for each and every one of us.
Posted 11/15/2007 7:46 PM (GMT 0)
Call it denial, but I too refuse to consider myself having a "disease"- I much prefer "condition" too. I am not into the idea of acceptance because I trly believe we should all be seeking our own cures (controled cures or call them waht you will) and not simply treating symptoms. I once had 9 years of pretty much symptom free (just some very mild IBSish symptoms *occasionally* eg a day or two every few months) remission without ANY meds and I keep trying to get another one of those going (no luck though for the past 9 years, just simmering remissions of a few months to a year here and there, otherwise fairly symptomatic). I find it an irresponsible cop-out ofdoctors to simply consider remission/relapse cycles a sort of random thing like or even a cyclic thing like the tide... obviously they represent a changing balance/imbalance of something and it's up to us to try and tinker with those balances, be it with medicines, diet, supplements, stress management or whatever combination works.

Ultimately, since medical science doesn't actually understand what we have other than from matching symptoms and biopsies etc., their labels are what I consider "garbage can" diagnoses.

I remember Christopher Reeve being interviewed and how he refused to accept that he would never walk (and right on, if I may say so- so sorry that he and shortly after his wife died of other things, in his case only indirectly from his injury).
Posted 11/15/2007 7:50 PM (GMT 0)
I saw Christopher Reeve in total denial...it made all around him jump on the same bandwagon. All knew he'd never walk again.

My take on it.

q
Posted 11/15/2007 7:59 PM (GMT 0)
You are correct Qunicy. That's the very point I'm making. But I'm looking at it differently. I have stuff to deal with like everone else. I deal with my astigmatism and I deal with my UC and also deal with my heartburn and I deal with my love of chocolate and I deal with a loss of my girlfriend and I deal with the fact that I too will grow old and die and deal with my really bad golf swing and I deal with my fear of speaking in front of large groups. Such is life.

Your comments remind me of the line from a Coolio song "Life is a big game so you gotta play it with a big heart. Some of us have to run a little faster cos we got a later start".

I repeat that for me I am a healthy person who leads a normal life. I am not chronical ill.

D
Posted 11/15/2007 8:11 PM (GMT 0)
Mr 202 - It's hard at first but for me, I know I will have this the rest of my life, call it condition, disease whatever. I've got to deal with it and move on to other things in my life. I know it could be worse and there are a lot worse things out there and I try to make the best of it and not let it control my life (when not in a horrible flare). When i've told people I have UC they look at me sad, but I say I am lucky, it could be a lot worse. I have guardianship of my Mother and she had UC now has the ostomy, is schizo-affective, diabetic, has parkinsons etc......I know how much worse I could have it.

Hope you are able to get your flare under control quickly and yes, while I am flaring, I am not as gung ho about dealing w/my UC and take it 15 minutes by 15 minutes and try to know it will get better.
Posted 11/15/2007 8:54 PM (GMT 0)

Hi, 202:

How would you feel about a good cigar after dinner?

After smoking for about 20 years I quit in order to take up SCUBA diving.  In about 4 months, I developed the first signs of UC followed by arthritis, severe anemia, bloating and all the rest of the fun stuff.  For the next 8 years I managed to keep a successful career as a Fortune 50 executive alive (not to mention myself) through the constant use of sulfasalizine, prednizone, enemas, diet, iron supplements and careful travel and meeting planning. 

Then the cigar craze of the late '80s hit. Boy was I tempted!  Fearful of complete recidivism, I stuck to my guns for another 2 years before  accepting an associate's offer of a nice Cuban. 

Well, yes, I did resume smoking.  But only one cigar a day for the last 17 years. Guess what? I have been UC symptom free since the third box of cigars!  No more arthritis, no more bloody BMs, no more meds, etc., etc.  I am now retired and loving it.  Eerything is normal (or, nearly so for a 63 year old).

No doc will recommend using tobacco for UC mitigation.  Many would consider that to be unethical.  But, read the literature and consider the alternatives. If you go this route and it works for you as well as it does for me, I will meet you in a nice restaurant to celebrate with you and we'll have a good cigar with our port!

Posted 11/15/2007 9:03 PM (GMT 0)
More power to you on the cigar cure- really! I tried both nicotine patches and started smoking (as a non-smoker) for my UC during one very bad flare a few years back and it didn't help in my case- made things a bit worse because it seemed to increase my motility, not to mention the headaches, dizziness, and increased pulse from a non-smoker getting hit by all that nicotine. However, had it put me into remission I'd have taken it all in stride, honest. It's a personal choice, and for those smokers who make a deal with the devil (and yours certainly isn't, a cigar a day is nothing) to get into remission iof nothing else works, I don't blame you for a minute.
Posted 11/15/2007 9:52 PM (GMT 0)
damo123 - I, too, have come to grips with the fact that I will likely die having the same bad golf swing. If only I could find the cure for that! :-)
Posted 11/15/2007 10:16 PM (GMT 0)
Yeah I can deal with my mortality and my morbidity but right now by driving sucks....and as for my putting!! I think they'll find a cure for UC before they get me to hit some fairways and stop 3 putting!

D
Posted 11/15/2007 11:01 PM (GMT 0)

Probiotic said...
I find it an irresponsible cop-out ofdoctors to simply consider remission/relapse cycles a sort of random thing like or even a cyclic thing like the tide... obviously they represent a changing balance/imbalance of something and it's up to us to try and tinker with those balances, be it with medicines, diet, supplements, stress management or whatever combination works.

Yep, this is what was most frustrating and disappointing to me. After being so desperately ill for a couple of years, through trial and error and much self-education, I achieved several years of normalcy... felt great... and my doc never commented, never encouraged me, and most importantly NEVER asked what I attributed the total turn around to. His attitude was pretty much it's a fluke, but enjoy it while you can. And let me know when you flare again so we can increase your sulfasalazine.
Posted 11/15/2007 11:26 PM (GMT 0)
I have found so much peace from finding acceptance for the things I cannot change. It's really time, then, after acceptance, to rationally and reasonably carve out the best existence for yourself.

I've found acceptance to be very freeing. Now I can live instead of fight against demons or diseases. Everyone has them. Just about everyone. Mine happen to be some issues with family, depression and UC. Big shakes. At least I don't have cancer or MS or any number of other chronic illnesses that are, at least with my variety, much worse.

Until my depression was under control, I can't even begin to tell you how that affected virtually my every waking (and lots of sleeping) moment. Until I forgave people who I felt wronged me (not saying they did, but . . .) and accepted them, accepted the love they had to offer me even if it wasn't exactly the way I wanted them to love me, I finally felt real love.

We all face challenges in our lives. In comparison to other challenges I've had, UC is a minor blip on the radar. For others, that's not the case, it's a much more serious condition. Everyone has to figure out how to deal with those challenges. For me, acceptance has allowed me to get past the anger and denial, has allowed me to bring whatever problem it is back to a more appropriate and manageable size in my life, has allowed me to realize it's one aspect of my life, it's not my entire life, doesn't define me. Acceptance definitely was the key for me. Fighting back or refusing to accept may be what works for someone else. We all have to find our way and do it in the way that works for each of us.

Mitz
Posted 11/16/2007 8:06 AM (GMT 0)

damo123 said...

I repeat that for me I am a healthy person who leads a normal life. I am not chronical ill.

Now, from my perspective...you're a normal healthy person who has chronic disease.  It doesn't mean you're ill.   Even normal healthy people who don't have chronic illness/disease have crappy feeling days.

When we start blaming UC for all our woes, then that's the path to being chronically ILL.

I really don't see anyone on here that are like that.   

q

 

Posted 11/16/2007 8:08 AM (GMT 0)
Right on Mitz!!

Just imagine all the tools we're learning...hehe!

q
Posted 11/16/2007 8:25 AM (GMT 0)
Quincy,

I do not blame UC for my woes. I'm surprised you'd make that deduction because at no point have I mentioned such an issue in any of my posts.

You can classify me and categorise me according to all your medical definitions but once again let me repeat:

"I am a healthy person and I do not have a chronic disease nor illness."

D
Posted 11/16/2007 8:40 AM (GMT 0)
hey..I didn't mean you...I meant in general terms. ...i'm saying that for those who go down the path of blaming all their woes on UC, it's a path to actually being/living/classifying themselves as chronically ill.
Becoming their illness as an identifier...firstly.

I also mentioned I don't see anyone on this site who do that.

And if you say you don't have a chronic disease...OK....but you're doing a lot of research and formulating as one who does. I've clearly read you wrong.

Be well...forever.
quincy
Posted 11/16/2007 9:40 AM (GMT 0)

You'll really have to stop making assumptions about me! nono Again you are wrong. tongue I'm not researching nor formulating as one who is chronically ill. I am researching and formulating as a healthy person who from time to time gets sick and wants to know more. I also research why my golf swing is so bad!!

Stay happy,

D

Posted 11/16/2007 12:59 PM (GMT 0)
I am going to veer off the different path too. I know I have a chronic illness, I know that this is never going to go away. And like expecting, I had to come to terms of knowing that I have an illness/disease that made me start to accept it. By knowing my limitations it has let me lead as a normal life as I can. I don't let UC rule my life, sure it can be tough and a challenge especially when your flaring, but I still get out there and do things like every other healthy person. I don't let anyone pity me, instead when they find out that I have a chronic condition I ask them for understanding and empathy - nothing more, nothing less. I don't want pity and when some of my close friends try to give it to me I will have nothing to do with it. In fact, I lead such a normal life on the outside that many don't even know that I'm "ill".

But I cope with flares basically by coming here to whine :) And thank you all for letting me do that! But I also, alter my diet a bit, rest more, avoid stress and do things that I enjoy.
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