does it get worse?

bk1579

Regular Member

Joined : Sep 2007

Posts : 100

Posted 9/13/2007 12:52 PM (GMT -6)

Hello, I was Dx with UC this past March and still seem to think I have somewhat mild symptoms...No D, just blood mucus and frequency in the a.m. with some mild cramping from time to time...Nothing too severe...I'm on medication now, and seem to be in remission, but we'll see for sure when I come off the prednisone...I do seem to be dependant on steroids...My question is, has anyone ever had mild symptoms and then it get worse? Does it spread as time goes on? I'm curious if I could be in for a rude awakening...I don't really worry about it getting worse or expect it to, but curious as to what I could possibly be in for in the future, as I do know everyone is very different...I read a lot on this forum and see that there are people in pretty bad shape, and thank God I don't have the severity as some of you all do...I guess I'm just hoping that my symptoms stay as they are and never get worse, BUT if they do get worse, I'll deal with it then...

Brandie

28 Yrs old

Dx UC 3/07

4 Asacol 3x/day

30mg Prednisone

Remicade (2 infusions)

Fish Oil supplements

Multi-vitamine

expecting226

Regular Member

Joined : Jul 2007

Posts : 402

Posted 9/13/2007 1:07 PM (GMT -6)

I really think that UC is different for every person. I was diagnosed several years ago and have had a few flares during that time, but my symptoms have never gotten any worse. That is not to say that they won't, but so far... knock on wood... everything is the same as when I was originally diagnosed. That isn't the case for everyone, and I do consider myself one of the lucky ones.

In the beginning, I read everything I could get my hands on and was convinced that things would go downhill quickly. So far, that hasn't happened to me, and I think I spent a lot of time stressing out instead of living life. My message to you would be to relax and enjoy your good health while you can. You may get worse, you may not, as many UC sufferers do maintain a mild to moderate case throughout their lives. You really can't predict at this point.

Beth75

Veteran Member

Joined : Jul 2007

Posts : 2148

Posted 9/13/2007 2:26 PM (GMT -6)

I was dx'd w/mild colitis 7 years ago and besides a few small flares have basically been fine, even when I am flaring, I can make it to the bathroom, its mostly just embarrasing when It's really loud and annoying when I stay with friends of friends who don't know and I have been holding it in for 5 hours praying I can get the bathroom and surrounding area by myself to let out the symphony of destruction (what it sounds like..gas puncuated by stools).

Right now I have changed meds a couple of times so I am still flaring on a scale of my 1 to 10, probably at a 5 or 6 today, but my 5 or 6 could be someone else's 1 or 2.

I am hoping this will get under control very quickly now w/the prednisone. I did great on the 5ASA's but can no longer take them

Beth, 31

UC Diagnosed March 2000

~~Lialda 2.4mg 1xday since 8/24/07~~ (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.

Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007

Prednisone 60mg 1xday, Simvastatin 20 mg 1xday

Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.

kb5

Veteran Member

Joined : Jan 2007

Posts : 1015

Posted 9/13/2007 4:38 PM (GMT -6)

Hi Brandie! Blood is definitley a sign there is still some inflammation in your colon..but I am glad to here things are getting better. UC can spread but doesn't always. Mine spread from left sided to pancolitis, most likely becuase I stopped taking my meds for a long time. In the ten years that I have been dx'd I have had to very big flares and a couple of very small flares.

In a small flare I usually just have some D, maybe a tiny bit of blood and mucus, and a little pain. The big flares are bad. But I have learned to look for signs of oncoming trouble. For me one biggee is nausea. When I notice I have been nauseaus alot I may be more careful about what I am eating and pay closer attention to my stools. It's usually when i wiil also stock up on herbal "remedies" like aloe and probiotics (though many would say I should be taking those all the time)

I was very lucky in having a 5 year remission. It was great I ate and drank whatever I wanted. It's hard to get used to not knowing what is to come. this disease gives little warning and is very unpredictable. I just try to be as prepared as possible. There is alot of scary information out there but that doesn't mean it happens to all of us. It can get worse but it can also go into a very long remission. Some never have problems after their initial diagnoses, but those are the people we never hear about.

Good luck!

Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, down to 15 mg pred.
75mg Imuran starting 8/23/07---fingers crossed!
Prontonix once daily for acid reflux, zofran twice daily for nausea

BigLucy

Regular Member

Joined : Mar 2007

Posts : 413

Posted 9/13/2007 5:44 PM (GMT -6)

When first Dx, I was maintained pretty well by just Rowasa, I could even get down to every other day, sometimes every three. about 3-4 years ago sx's increased and had to go to Rowasa every day, then Dx w/IBS and other meds were added. Every colonoscopy shows some increase in the disease, but not enough to freak me out. Last year was the worst, why I can't tell you, couldn't stop catching a cold, had--not embellishing here--five flues throughout the year and in October of 06 had a major flare that ended me in the hospital for two weeks and out of work for five months and I'm still no where near where I was. And you can see by my signature below all the lovely meds I currenlty have to take, long way from just Rowasa. O.k., now here's the "positive" message for you: yes, things are a lot worse, but for some reason I don't have a fear about it (or the future), it is what it is. If it get's worse than this I'll deal w/it somehow. For the most part I'm TIRED (and frustrated) of the vigilance of my health, meds, etc. I've posted some good "vents" on this forum on days I'm feeling fragile. I think the best thing that came out of all this is that I really don't sweat the small stuff since this illness, or much, for the most part; I secretly laugh at some of the stuff I hear from people, "Can't sleep over which private school to send my kid to? Should I get botox? Do I look fat, I feel fat? I wish I had a bigger house, I hate my house????, I know I shouldn't have, but I spent 1700. on a LV bag, but I'm worth it: my mother-in-law (fill in the blank)...." I guess, everyone has their own reality. O.k, where am I going w/this, oh yeah, live in the moment, who knows what tomarrow will bring. You may worry yourself sick over ten years from now and maybe five years from now somebody may have this all figured out and we will all be cured. Who knows?

Dx Ulcerative Colitis 1999; IBS; CP: Asacol x3 x3/day, Rowasa, Proctofoam, Prilosec, Bentyl, Prozac, Endocet (as needed), multi vit, probiotic, fish oil caps x2/day, calcium 1200 mg./day, Prednisone (off/on, unfortunately).

bk1579

Regular Member

Joined : Sep 2007

Posts : 100

Posted 9/14/2007 9:09 AM (GMT -6)

Thanks everyone...I'm always curious as to what other people go through with this...BigLucy, you were saying you couldn't stop catching a cold last year...I didn't even know I had UC last year (although I saw blood but didn't go to the dr until this year...how dumb!!!) but I stayed sick last year...I'm one of those who hardly ever gets sick, maybe a little cold once a year, but thats about it...I can't count the number of days I missed from work last year over being sick...And I don't know how many stomach viruses I had...Ewwww, I hate those...Who knows, I wonder if it had anything to do with UC...Not saying it did, but I sure did stay sick a lot...Hopefully, this year will be better...

28 Yrs old

Dx UC 3/07

4 Asacol 3x/day

30mg Prednisone

Remicade (2 infusions)

Fish Oil supplements

Multi-vitamine

Seahorselover

Regular Member

Joined : Sep 2007

Posts : 30

Posted 9/14/2007 4:04 PM (GMT -6)

I have been reading everyone's post here and me being new, was just wondering, how do you all handle going to work, when a flare up happens, and I read that some of you are out of work for like 6 months, What do you tell your bosses???? or do you all keep quiet. I am on no medications at this time, I am waiting for what my doctor wants to do. because, he just diagnosed me as mild irritation in the entire colon and concerned might lead to chronic colitis. but I felt good all day, better then yesturday. I just wouldn't know how to handle this if I happen to get a flare up at work

Seahorse Lover

sickkid

New Member

Joined : Sep 2007

Posts : 2

Posted 9/14/2007 5:51 PM (GMT -6)

I'm new to site. My 17 daughter has U.C. I noticed Beth had U.C. then kidney disorder. My daughter has been having kidney stones since she started taking 6 mp drugs and imuran. Has anybody else had this happen.

BigLucy

Regular Member

Joined : Mar 2007

Posts : 413

Posted 9/14/2007 8:13 PM (GMT -6)

If you have specific questions, it's good to post a new topic, but I'll briefly answer about being out of work. I've been at my current job for several years, so when I had a major flare and ended up in the hospital, my GI authorized state disability insurance, which gave me 67% of my current pay. I'm still only working PT almost one year later, with a medical note signed by my GI--employers cannot fire you if a MD verifies medical illness. I think the thing that saved me was I planned way ahead for the possibility my illness would get worse--I don't carry any debt, I don't live beyond my means, I have six months living expenses saved (I can hear the "that's impossible" but it can be done, believe me)--just good old-fashioned financial advice/planning. As far as the working day to day stuff, I'm VERY lucky to work with compationate people that understand I'm challenged and when I'm at work, I give it my best. Besides, there is something called American's with Disabilities--I know that there have been discussions before about whether UC is a disability, but I consider myself disabled with chronic conditions that do not allow me to function "normally."

kazygirl

Veteran Member

Joined : Sep 2007

Posts : 955

Posted 9/15/2007 3:46 AM (GMT -6)

I was diagnosed in 2003 with proctitis UC... mild flare ups lasting 2 weeks and then gone. Little bit of blood and mucus but no pain or anything to worry about really. Now in 2006-2007 I have had it rediagnosed as pancolitis and it is pretty severe. They told me it would NOT spread, but it did. And so far, each flare up has been worse than the last one. This one has been on for 8 months now and has been pretty painful. The only reason I still have a job is because I work for myself. I spent about 3 whole months in bed. Normal everyday living is very limited. I am getting better but it is still being stubborn for some reason. Hoping my new treatment works!

Wooky

Regular Member

Joined : Sep 2007

Posts : 41

Posted 9/16/2007 2:42 AM (GMT -6)

I was diagnosed with UC in Nov of 2006. It was just in the rectum, with mild symptoms of pain and slight bleeding. The bowel movements became more frequent as I cldn't take measles as it gave me a pancreatitis and I'm allergic to sulphur. So the Dr's have bn at a loss as what to give me. Because of the frequency of my bowel motions I developed a thrombosis hemeroid which i had to get surgically removed as th epain was excrutiating. I then had really bad symptoms after the surgery. I then had to have a second surgery (because Dr's are Hacks) and now my UC i sunbearable I've likened the pain to no t passing painful stool. But to what I imagine will be what it is like to have a Baby and I'm not exaggerating I was loosing so much blood at 1 stage I cldn't get out of bed. Thats probably scared the crap out of you sorry. I am getting to a point which is that the worse my immune system gets the worse my UC gets. I'm now on only 3g of Entocort/budesonide I've only been taking it for 5 days now and I know once I stop my symptoms will be the same or

if I have to up the dosage I will probably get pancreatitis again. The only thing that works for me or was working b4 it got out of control was herbal remedies from a goo d naturopath also licorice and a green liquid called chlorophill which you get at health food stores mix with water and drink as many litres as you can handle. Good luck I'm sure I speak for everyone when i say i hope it doesn't get worse.

flash123

Regular Member

Joined : May 2007

Posts : 34

Posted 9/16/2007 5:54 AM (GMT -6)

Hi there, i was diagnosed with UC in Feb of 2007. I live in England and medication here is mainly Sulfasalazine, which i have been taking since my diagnosis. I, too, noticed blood and mucus and a change in bowel habits.

The main problems i have are joint pains, nausea, increase in weight and severe tiredness. Tiredness seems to be the main problem, but i am learning to handle it. I was off work for 3 months and i was an account manager, going out to see customers each day. I am with the same company but i have changed my job now so that i can stay in the office and i use the disabled toilet when i need to rush.

I think that symptoms vary from person to person. The main thing is to learn to look after yourself and continue as best as possible to carry on with your life and deal with flares as they happen.

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