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Posted 12/1/2012 6:01 PM (GMT 0)
I've read everywhere, and listened to my doctor say that, and I was told after I was diagnosed with UC that people still live normal lives...

Yet I've seen multiple people on forums explain that they've had UC for years and years (I've only had it for about a month and a half now) that they still constantly go to the bathroom, and still constantly have diarrhea........

I'm..confused how this is at all a normal life?
Have I just been lied to by my doctor to make myself feel better?

I mean..what am I supposed to do when I get a career? Have all of my dreams shatter?
How am I supposed to finish school knowing I'll be going to the bathroom constantly, with bloody stools?

Or am I overthinking this and I will eventually get better after my prednisone medication is over?

I mean what if I get better, but then I eat something that causes a flare...I'll be home-ridden going to the toilet constantly, I'll have to drop out of school again...I won't be able to work...how...can someone possibly live a normal life?

Here's my main question for this post,
does anyone here know someone, or are you someone, that lives a normal life, you can work/go to school without even thinking about going to the bathroom, you have less flares than you did before, and your medication is actually helping to control the flares...?
Posted 12/1/2012 6:09 PM (GMT 0)
me
Posted 12/1/2012 6:14 PM (GMT 0)
After a year long flare, I live my life COMPLETELY normal with remission meds. I eat what I want
whenever I want. I will admit, I am more aware of trigger foods, and avoid them but by no means
am I on any kind of diet- I am at a perfect weight for my height and feel the best I have in a long time.

Every one is different, how long their flares last, what kind of food bothers them, what meds and supplements work for them.

It may be a long road, but it sure feels great when you get there. Everyone has the feelings that you are experiencing, it is normal.

Carlie
Posted 12/1/2012 6:28 PM (GMT 0)
my dad has UC and lives a normal life. he works a lot and eats whatever he wants with little to no consequence.
Posted 12/1/2012 6:33 PM (GMT 0)
I live a normal life but I always think about where bathrooms are located, just in case.
I still flare, but not as severely as my first flare so I'd say medication and diet change has definitely improved things. I've gone as long as 2 years with no flare. Others have gone longer and some have never achieved remission. It really depends on the severity of your own disease, how you respond to meds and other treatments, etc.

The difference for me, between now and before UC, is really listening to my body and not ignoring signs that I need to slow down, reduce stress, increase rectal meds, not eat something that makes me feel ill, etc.
And I keep an emergency potty in my van. That wasn't there before.
Posted 12/1/2012 7:02 PM (GMT 0)
people with 'normal' lives are more likely to not be on a UC forum, so keep that in mind.
Posted 12/1/2012 7:15 PM (GMT 0)
for most of us, flares are temporary, when not flaring we do lead normal lives. You can never undo what has happened - you've been diagnoses with UC. It will always be in the back of your mind and you may need to make more or less adjustments to your day to day.

It can be hard to accept and many of us also went through periods of frustration, denial, depression, but as I said most of us are able to find ways to lead a normal, full life.

I, like many on here have never had to miss a day of work (others are not so fortunate). I do what every i want, eat and drink what ever i choose, make the same plans for travel and social time. It has changed my morning routine and I do take daily meds but otherwise, life is NORMAL.

You sound young, highschool or college aged, you will come to realize that almost everyone has something in life, physical, mental, emotional challenges, it's up to you to decide how and what you will do to move beyond them.
Posted 12/1/2012 7:20 PM (GMT 0)
I agree that there are many people not on this forum that pretty much live normal lives or have maintained remission for years and years.  I was diagnosed in 2005 and pretty much took my 9 colazal a day every day, and never really thought about my UC until this past year.  So that's about 6 years of normal, and even now that I've been flaring, once I got it a little under control it's pretty "normal" and not inhibiting my working or taking care of my kids.  I am always aware of where bathrooms are just in case, I travel w/ extra clothes just in case, and I am very aware of the signals that my body is sending-watch what I eat, etc.  So it's pretty close to normal.  It's such an individual thing and it's early yet in your diagnosis--you may find that once you get your flare under control that things are pretty normal again for a long time.  Personally, for what it's worth, I recommend staying on the maintenance meds even if you feel 100% and am a new true believer in rectal meds. 

Chinamom

Posted 12/1/2012 7:52 PM (GMT 0)
What is a normal life anyway, I mean really? Just about everyone has something in their lives that causes them to have to live differently than a normal person, whatever that is. I guess it depends on a particular person's definition. Will life ever be EXACTLY they way you were before? Probably not, but maybe sometimes. You're young so you may be just starting to realize that life has a way of throwing curve balls at you all the time and being human, you have to learn to adapt. That's never going to change. At some point you will leave your parent's home and have to learn to adapt. You are going to have to learn to adapt to college life. When out of college you are going to have to learn to adapt to a job. When you get married you are going to have learn to adapt to compromising with another person. When you get your leg broken you are going to have learn to adapt. When you get fired from a job or get layed off you are going to have to learn to adapt. OK I guess you get the picture. UC is something you have to adapt to. Everyone has to adapt to different degrees. Bottom line, your life will probably be different but many may call it a normal life.
Posted 12/1/2012 8:31 PM (GMT 0)
No one ever told me I'd live a normal life, just that it was not going to kill me.
I did not live a "normal" life for 10 years after getting UC and I faithfully took all the Rx meds prescribed for me. My daily life was hell and it changed everything for me.

Nothing got me to "normal" until I was desperate enough to change my diet radically. Others here, like me, who don't respond to meds found other ways to remission (which I would call "normalcy").

I wonder what % of UC people do not respond to meds? I've never seen that number. I'll assume it would correspond roughly to the % of people who get surgery plus a few % like me and others who don't need surgery.

sugar--if your life is not normal you need to keep trying to get there. Don't settle for half-living. Try everything your doctor says that you feel comfortable with (I drew my line at not taking biologics). And then you can try probiotics (VSL#3), supplements, diet modification, fecal transplant, LDN, etc.

Are my meds controlling my UC? I cannot say except that the same meds (balsalazide) was not doing squat to help before diet modification got me into remission--along with VSL#3. That may/may not work for you. Everyone is different. Surgery works well for many. Read. Learn. Make decisions. Set a deadline for being normal again.

Answer: Yes I live a normal life now.
Posted 12/1/2012 9:02 PM (GMT 0)
geez Gary, after all that, i'm not sure anyone would want to be normal - that's scary stuff -

so ima, maybe i've aksed this before, but how long do you plan to stay on the meds ?

oh, and crave, i'm getting back to normal - but understand after 10 years of the same life that ima had, i'm 10 YEARS OLDER - duh - i won't ever get back to the normal i was before i went into this uc time warp - ya, it's like those years are a total blur - (but maybe that's a good thing)

Post Edited (soystud) : 12/1/2012 2:06:22 PM (GMT-7)

Posted 12/1/2012 10:41 PM (GMT 0)
It depends how severe your UC is. I NEVER achieved remission, so I lived in the bathroom for almost two years of my life. Literally, could not leave my house unless I wanted to have an accident in public. I chose to have surgery and now I have my life back. I can now enjoy 20's. This is not always the case. Most people achieve remission. My track coach in high school has UC and it is well controlled with Asacol. He runs the Boston marathon every year.
Posted 12/1/2012 10:49 PM (GMT 0)
"Normal" is a subjective word, but in my opinion, the vast majority of people w/ UC don't lead normal lives. Just being on prednisone for awhile separates us from whatever normal is. The reality is that after you are diagnosed with UC, your life will never be the same, that is certainly true in my situation. But part of increasing awareness for UC is to not sugar coat it all and face up to the hard facts.
In this case, I think any doctor who says we will lead a "normal" life is wrong -just try running a medical practice with UC -totally impossible.

The first thing my doc told me after diagnosis, is that I'd have UC for the rest of my life, be on meds forever, and have to make accommodations for my disease. Of course my UC is much more aggressive and serious than most, but I like to always think, there are worse things...
Posted 12/1/2012 11:59 PM (GMT 0)

Sugarcrave said...
I've read everywhere, and listened to my doctor say that, and I was told after I was diagnosed with UC that people still live normal lives...

Yet I've seen multiple people on forums explain that they've had UC for years and years (I've only had it for about a month and a half now) that they still constantly go to the bathroom, and still constantly have diarrhea........

I'm..confused how this is at all a normal life?
Have I just been lied to by my doctor to make myself feel better?

I mean..what am I supposed to do when I get a career? Have all of my dreams shatter?
How am I supposed to finish school knowing I'll be going to the bathroom constantly, with bloody stools?

Or am I overthinking this and I will eventually get better after my prednisone medication is over?

I mean what if I get better, but then I eat something that causes a flare...I'll be home-ridden going to the toilet constantly, I'll have to drop out of school again...I won't be able to work...how...can someone possibly live a normal life?

Here's my main question for this post,
does anyone here know someone, or are you someone, that lives a normal life, you can work/go to school without even thinking about going to the bathroom, you have less flares than you did before, and your medication is actually helping to control the flares...?

Absolutely sugarcrave. There are many people who find remission is possible through trial and error.

Last fall, I was diagnosed with a grim outlook, told I would be on medicine forever and probably not be able to hold a job -in those words, based on my case. I was going to the bathroom at least 5-10 times a day with other problematic symptoms. I too worried about holding a job, having a relationship, my body, my life expectancy, and all of the questions that come with this disease.

That isnt the case now. Although my symptoms come and go, they have been controlled by prednisone and healing supplements in the beginning, followed by the SCD diet, candida diet + supplements and herbs, and now gluten free. I go to the bathroom maybe once or twice a day. On a bad day, three times at the most. Blood is still present on tissue from hemorrhoids and rectal bleeding, but if I stick to the things that I know will help me, I know I can get through this. Positivity does go a long way, and I feel once you allow others to set limitations on yourself with your condition, that you will find it even more difficult to find a balance.

Healing takes a lot of time and patience.

Post Edited (stereofidelic89) : 12/1/2012 5:03:36 PM (GMT-7)

Posted 12/2/2012 12:12 AM (GMT 0)
Thank you all for your stories and how you've dealt with UC in your lives.
This has really helped me to learn that yes I can eventually lead a normal life.

While it may always be in the back of my mind, I can learn to move on.
I just do hope that the medication I'll be taking will help control my symptoms.

I am also definitely looking towards modifying my diet severely, but apparently according to some of you diet change doesn't seem to be an option as some say they still eat whatever foods they want, which makes sense because I've heard that there are no specific foods that are known to cause UC, but unfortunately there are inflammatory foods so I'll have to watch out for stuff like that.

Thanks again everyone. Happy holidays.
Posted 12/2/2012 12:23 AM (GMT 0)
I agree with those who have said that you are going to be changed a bit from your UC. You will need colonoscopies more than a normal person and you will likely need maintenance meds forever. That's the least your life will likely be changed.

However, don't think that you are guaranteed to be spending three+ hours in a bathroom a day or having to make 10 trips in a day. I was just looking up some info and half of people with UC have very mild symptoms. Those people don't tend to post on this board. I've also heard of people (albeit rare) having one flare and then going into a very very long remission of decades.

I think about 800,000 people have UC in the United States (UC is combined with Crohns in the numbers I read). So 400,000 of those people have mild symptoms. And there are definitely not 400,000 "more than milk symptoms" people posting on this board...so don't fret. I know it's hard because you've just been told that you are sick. Just deal with what you have to deal with now and take steps to get better. If you think "what if" you are going to drive yourself batty.
Posted 12/2/2012 12:59 AM (GMT 0)
Sugarcrave,

I am guessing you are the same age as my daughter.  From our experience and from what I learned most lead close to normal life if they can tolerate the meds. I say close to normal because most will have certain trigger foods to avoid .So this kicks you out from the pre-UC normal person. Psychologically too you will be alert because of the chronic nature of this disease. In my daughters case, though she  was able to gain remission

with the basic mesalamine ,she follows a very strict diet to avoid a relapse. She attends college as a commuter from home so that she can follow the diet. Never thought she will have to compromise this way to keep her remission. This disease being so individualistic, over time you will figure out your trigger factors and adapt accordingly. Good that you are gathering all the information rather than just following your docs advice. We never heard of this disease before and we just did what the GI said. Took the meds and no change in food. So the symptoms persisted while in steroids and at that point we started browsing and figured out from this forum that for many, food plays a major role. From then on our life changed from a normal  to a new normal. So my advice is don't blindly follow the GI's advice- listen to your body and take good care of it. Try to get enough rest, proper nutrition and exercise. You will

learn a lot from this forum.

Posted 12/2/2012 1:49 AM (GMT 0)
so ima, maybe i've aksed this before, but how long do you plan to stay on the meds ?

Not sure. I'll let you know when/if I am "no-meds" successfully.
Posted 12/2/2012 1:56 AM (GMT 0)
i asume you have heard this and know it well, but, if it aint broke, keep doing what you're doing :-)
Posted 12/2/2012 2:32 AM (GMT 0)
I would say for the most part, I have lived a normal life. I have had only a handful of flares (currently having one) and I know that my life was normal because I'm so disheartened about how things are during this flare. Until this flare, I never worried about where a bathroom was, traveled a lot, and enjoyed life. I'm trying to remind myself that this is only a temporary situation, not my new normal. Once you get the right mix of meds, you may even forget you have UC.
Posted 12/2/2012 6:23 AM (GMT 0)
I had a few major flare ups but i've been feeling well for over a year and I've been working and living entirely normally. You will feel normal once you find what works for you. It's a lot of trial and error and trust me, I know how frustrating this illness can be but try to be patient.
Posted 12/2/2012 6:41 AM (GMT 0)
Ive only felt normal for a few months at a time. I did feel normal in pred before but that doesnt really count.

Im sure there are plenty of people that do just that most of us here are the unlucky ones.
Posted 12/2/2012 8:37 AM (GMT 0)
yeah, normal is for sure subjective. Others' normal sure wouldn't be mine.

But the question was
"does anyone here know someone, or are you someone, that lives a normal life, you can work/go to school without even thinking about going to the bathroom, you have less flares than you did before, and your medication is actually helping to control the flares...?"

I wouldn't have had the same success had I not followed the regimen I'm on...and the first few years were hell until my GI and I figured how to make it work for me. The freedom of having the meds to use for treatment and to taper to maintenance allows "normalcy".

And no...I don't follow, nor ever have followed, a "diet".
And I've never been on prednisone...which I suggest to the OP to not rely on pred as a treatment...

q
Posted 12/2/2012 12:26 PM (GMT 0)
I live a normal life. Except for the mornings. I go to work without thinking of going to the bathroom. So I guess I'm not a morning person anymore. I was at one time!
Posted 12/2/2012 1:12 PM (GMT 0)
Can empathize with the discussion. I came to believe my remission was normal despite all the meds and the constant second guessing about foods to avoid. I even went as long as 2 years with only mild symptoms (blood and 2-3 daily bm).

Finally had a severe flare that lasted almost 1 year and exhausted all medical alternatives and went for the surgery option. I thought my life was over.

I am now 4 years post surgery, off all meds, eat most foods except popcorn and mushrooms and am leading a close to normal life. I am no longer house bound, told I am cured of UC.

Would I recommend surgery? For me it was the only choice and each of us has to do what is right. I will add that my wife was 100% accepting which made the decision a bit easier.
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