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Does UC get worse as time goes by?

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Ulcerative Colitis
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Posted 8/6/2008 11:09 PM (GMT 0)
Right, I've been reading a lot of posts since joining day before yesterday and I have a question I'm almost afraid to ask.....I was diagnosed with UC at the beginning of June. I had a rough time for 4 weeks and possibly heading into a flare-up again.  I had been bleeding and dia. for a long time but doc put it down to piles (which I don't have) treated me with over the counter stuff but no improvement, so told me probably internal piles...more over the counter stuff....anyway I'm wondering  am I being silly to think that UC isn't going to interfere with my life too much?  It seems that it is according to a lot of posts.  I'm thinking I'm never going to be as sick as I was again simply (and maybe out of stupidity) because it took me along time to go to doc, then waiting on appointments and then admitted to A and E.  It then took a week to diagnose by the time tests, scope (was too sick so it was 7 days before they did it, then the results of the biopsies etc.  Then treatment had to begin etc etc.  So I'm thinking that now that i know the signs and i'm eating well (was sooo unhealthy due to poor absorbtion of food and anemia pre diagnosis) I should be able to fight it better....somehow I think I'm not being realistic.  In denial maybe?  It's worrying I have to say. 

I don't want to focus on the negative, allow it to control me instead of me controling it (which I know I can't really but it can take over my way of thinking so that I become UC instead of it being just a small part of me - make sense) but I want to be realistic too.  Some of the posters are miserable with this.  It does scare me, the fact that my life stopped for 4 weeks while in hospital, my MIL moved in to look after the children.  I can't imagine my life being so dependant on others...maybe that's the bit that scares me most.  I've always been able to look after myself...and others...which was a huge contribution towards developing UC. I can live with the rash I have at present, I can live (sort of) with the roundy face although not too happy about it but what can you do. I can live with the hair loss (ask me again when I'm bald eyes ) I can live with it all I suppose, it could be a lot worse but I think that I need to face up to the fact that life won't be the same again, things will be put on hold and I may have to call in a few favours (totally against the grain for me) from time to time. 

food for thought.

Anyway, just turning things over in my head I suppose more than anything. 

Thanks for listening.

Posted 8/7/2008 1:32 AM (GMT 0)

Welcome to the board!  You will find lots of experiences and support here.  As for your question, UC may get worse or it may not.  It's not a very predictable disease.  The best you can do for yourself is to get educated about the disease, take your daily maintenance medication, get plenty of rest, and eat a healthy diet.  These rules pretty much apply to all chronic diseases.  The worse thing you can do is to go in denial or stop taking meds because you feel fine.  For some people their first flare will be their worse, for others the disease gets progressively worse, and still some live with mild disease for their entire lives.  There is no way to know which way it will go.

Sue

Posted 8/7/2008 8:27 AM (GMT 0)
Thanks Sue. Won't stop taking meds, the doc has spoken to me about the importancce of continuing. They're keeping it at bay.

Will just have to wait and see, take each flare up as it comes.

Lynda
Posted 8/7/2008 8:45 AM (GMT 0)
Although my flares seem to be getting a bit closer together each one does not seem as bad as the last and they are nowhere near as bad as my 1st flare. I don't know if it is because I am taking the medication quicker or what.  You can get ups and downs with this illness. My brother flared pretty much for 4 years and eventually had to have surgery (a decision which was hard for him to make at the time but one which he has definately not regretted) and then my gran flared for about 10 years in her 40's then was in remission again until her early 80's. Everyone is different.

Posted 8/7/2008 9:16 AM (GMT 0)
There is evidence that in some cases UC "burns itself out over time". As we get older our immune system gets weaker in all of us. Thus the immune reaction can be less severe to various triggers.
Posted 8/7/2008 12:58 PM (GMT 0)
I guess there is something good about getting older
Posted 8/8/2008 3:13 PM (GMT 0)
I don't think my UC has gotten worse, but I have certainly become more skilled through the years at managing life with it and so will you. This forum will help you learn some things quicker than I did!
Such as, most every hotel has a clean bathroom near the lobby...
Posted 8/8/2008 4:11 PM (GMT 0)
Hi and welcome to HW :) I may be an exception to the rule but for me, I wouldn't exactly say that my Uc has got worse as I got older but I would say that it has been more difficult to get under control. I developed an intolerance to the mainstream Uc meds (mesalamine). So my med options are limited. I've had this for 16 years and I have had only a small handful of short lived remissions. But you know what? I have never let Uc stop me from what I want to do. Sure there are times that I could barely move off the couch and I felt like giving up, but I picked up the pieces and moved on. It is not easy that's for sure. But what else are we do right? We can't just stop living life because to me if that was the case, that Uc made me unable to live life, then I would have surgery. Which btw I am contemplating surgery for next year - long story lol. Some people get lucky and only have their initial flare and go about their lives and others have it so bad that they can't function. The majority of the people you see here are usually in a bad way and the ones you don't see are out enjoying their life. So you can't judge how all Uc'ers are by the ones we have here. That is why we have a support system - to help the ones that are having a hard time with their disease. I sincerely hope that you will be one of the lucky ones. But if you're not, we are here for you.
Posted 8/8/2008 4:29 PM (GMT 0)
Thank you all, I do feel more at ease with it now. I had made my mind up when I was diagnosed that I would do my best not to let it affect me more than was necessary. I know very little about it and I'm finding that my doctor has skimmed over the subject rather than arming me with information. For instance I didn't know there were different types of colitis...I thought it was Crohn's or UC. I'm becoming more educated on the subject and do feel that there is life after UC....mind you when in hospital hooked up to transfusions and fluids etc I felt ever so slightly different. This forum is a great source of support and a bit of humour thrown in too.

Thanks everyone x
Posted 8/8/2008 10:44 PM (GMT 0)
You might want to have a look at IBD articles (2004- ) on Salix Pharmaceuticals Newsletter website. 10 or 11 have been published there so far, written by the top IBD subspecialist gastroenterologists currently practicing medicine in the U.S. They deal with a range of important patient issues, from diet to meds to sexuality to travel. I think they provide the kind of info that can help patients keep a positive attitude, a big help in dealing with UC or Crohn's over time.

As for personal experience, my UC became easier to manage after Colazal came on the market ca. 2002. Continuing research on IBD leads to development of more effective meds-- this will hopefully apply beneficially to your situation. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)
Posted 8/9/2008 12:18 AM (GMT 0)

Lynda, I was just diagnosed last Nov.  I've never had a chronic disease that affected my life, and it is taking me awhile to adjust to it.  A friend with MS reminded me that in many ways you can go through a similar process as people who have a terminal illness:  denial, anger, bargaining, depression, and acceptance.  And it doesn't necessarily happen in that order.  

Have you thought about how much you've been through already?  No wonder you're questioning the future! 

With the day to day way UC behaves, I'd add frustration and elation (on the days I'm really feeling good!).  I also suspect there is a strong spiritual connection to this disease that has to do with being in the present and not letting our minds/thoughts/analyses take over.  

I am so in awe of the younger ones here, who are in their teens and twenties and even younger, and those who have lived with this disease so long.  They have so much to teach!  

I hope you're gentle with yourself and don't judge yourself harshly. 

    

Posted 8/9/2008 1:58 AM (GMT 0)
Lynda
I was diagnosed when I was 15 and I am now 62. My worse years were from 15 thru 30. Mind you back in the dark ages, the meds available were not as extensive, there was little support, and honestly I was well into my forties before I even met an IBD person other than myself. Back then it was a lonely and hidden disease. No one to talk to or find out what works, doesn't work.

NOW, with support groups, better and more varied meds, I do think it can get better. And actually, mine started improving greatly after menopause. I do believe there are some hormonal issues with the disease...at least for me. Yes, this chronic illness is no walk in the park. It takes a physical and emotional toll but unlike some of the other diseases like diabetes, there is little public awareness and therefore I think IBD sufferers tend to not get the emotional support that helps us. But NOW we have this place and other bbs where we can talk to other people and not feel alone. Hang in there and think positively because it can get better. :-)
Posted 8/9/2008 3:30 AM (GMT 0)
Lynda,
I like to try to take it one day at a time, although I know it's difficult to control our concerns about the future. I choose to believe that the treatments just get better and better and that the outlook for us all is good.

Every person with UC is different, so you will read a lot of things here that will just never happen for you. Maybe it's better to be prepared; or maybe it's better not to know. It's a personal choice.

I think that being educated about the disease is great and then, at a certain point, it's nice to try to forget everything I know and just do my best to ignore it. :)

It sounds like you are facing this with a lot of strength. It's true that calling in a few favors is necessary from time to time. I've found that being open with people about my limitations makes it easier so that I don't have to make excuses for myself all the time.
Posted 8/9/2008 10:20 AM (GMT 0)
Thank you all again. This forum is a wealth of support, I'm glad I found it.

One day at a time it is then. ;-)
Posted 8/9/2008 8:25 PM (GMT 0)
Tell ya what. Instead of thinking UC is the enemy try thinking it as a friend. (shhh w8 till I am finished) What i mean is if you worry about it too much then it will only become worse. So relize you have it and accept it then go through life the best that you can. Don't hide it, don't blush on it, just let people know you are sick. You'll see soon enough who is willing to listen and who is not. Those that laugh at you are foolish, those the look at you with pitty are saddend and those that love you will be by you no matter what. Yep that should cover it. P.S if it wasn't for UC I wouldn't be ahead of my high school class (class of '08). I have been in college since last fall. SO DON'T THINK YOU CAN'T ACCOMPLISH YOUR DREAMS!

*gives hug I am glad I found this forum.*

~Luna0
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