UC for over 20 years?

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Adam1184
Regular Member


Date Joined Jul 2009
Total Posts : 93
   Posted 7/16/2009 11:46 AM (GMT -6)   
Hi, I'm just wondering if people who have had this disease for a really long time did it keep getting worse as the years go by? I suppose it probably varies from person to person but my UC is relatively mild especially after reading how some people's UC is on here. But, I'm just wondering if by the time i'm 50 (23 now but 24 in less than a week!) if this thing is gonna go from mild to severe. This is more of a rhetorical question but i'm just curious how some peoples UC has progressed or possibly regressed over the years.
Male
7/21/85
Diagnosed 2/08
10 Asacol per day
Trying to eat healthy
Misses chocolate and ice cream...


Mercury28
Regular Member


Date Joined Jul 2009
Total Posts : 170
   Posted 7/16/2009 11:56 AM (GMT -6)   
Hiya, I have had Colitis for 15 years and that is untreated, and it has gone from very mild to moderate (Im 28 now) I always thought my colitis was really really severe but after seeing other people on here, i guess maybe i am not quite as bad as i thought.

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/16/2009 11:58 AM (GMT -6)   
Mine started out severe from the beginning, but is much better now with the right medications.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 7/16/2009 12:04 PM (GMT -6)   
     It will be eleven years for me in September.  My condition has worsened.  I used to be able to enjoy a two year remission for the first five years or so.   Then it became yearly.  My last remission lasted only seven months.  I was only hospitalized twice.  The first time was when I was diagnosed.....really sick, almost in need of a transfusion and had to be fed through an IV for eight days.  Second hospitalization was May 3rd thru 13th of last year.  Moderate (felt more like severe to me though) ulcerative proctitis.  Pain actually traveled into my legs.  Fed through a TPN.  Took seven months to get out of that one...enjoyed a seven month remission, now back in a flare cry
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 7/16/2009 12:11 PM (GMT -6)   
Mine started left sided moderate, 3 years later I got significantly better while on remicade showing that the inflammation was isolated to the sigmoid and rectum only. Then nearly 2 years later out of nowhere the disease turned to severe- spreading like wildfire throughout the entire colon. I guess there are several things that can make the disease go in either direction.
Age:31 Married with children.
--
Ulcerative Colitis cause: In 2003 I took Accutane for about 4 months, strong side effects of abdominal cramping and bloody stools.
May 2004: Diagnosed with Left sided UC -should have understood the IBD warning and should've never taken the dangerous drug
known as Accutane.
May 2004- May 2009: Prednisone, Asacol and many other med's that did not work well-Remicade was great for 16 months then suddenly stopped working.
---
May -June 2009: Pancolitis- chronic 2 month flare up that put me out of work and made me seriously think about surgery.
June 24th 2009: elective colectomy/ileostomy at Barnes/Washington University.
August 2009: planned rectum removal and j-pouch construction.
October-November 2009: planned Reversal.
----
Summary: Suffered 5 long years with severe Ulcerative Colitis, Anxiety and depression.
No more diseased colon. No more running to the bathroom 20+ times a day. No more cramping and bleeding. Satisfied with first surgery.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30993
   Posted 7/16/2009 1:10 PM (GMT -6)   
Hi..I was diagnosed 20 years ago (but obviously had it longer)...my meds are oral/rectal 5-ASA.

Flares have never been as bad as when I was initially diagnosed...the first 3 years were really the learning process in using my meds effectively.

My flares are now confined to the lower rectum, so in effect....the medications is what's helped to keep it there.  As well, my last c-scope 2 years ago was truly unremarkable...meaning no precancer/cancer but with slight inflammation at 2 inches of the rectum.  I was elated and defiitely attribute it to being faithful in use of the 5-ASA meds.
 
I have ups and downs, and I know I'll be a med-lifer. I'm hoping the 5-ASA will serve me forever, but this has been a really tough go emotionally for me as of late, and the effects have truly gone to my butt. Maintenance rectal med scheduling is getting closer together, but I'm learning that the twice a week enemas are the optimum because my emotional state is never static (as much as I try).

Welcome to the forum Adam1184.....

quincy


*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


MNBeachgal
Veteran Member


Date Joined Jun 2008
Total Posts : 867
   Posted 7/16/2009 1:11 PM (GMT -6)   
I've had it for 15 years now, almost exactly. When I was diagnosed at Mayo 15 years ago it was only as having Ulcerative Proctitis. Over the years it has spread a bit and I've had left-sided colitis for probably 12 years. A few patches further up have appeared over the past 5 years or so I'd say, enough that they though I may have Crohn's but I tested negative for that (whew!). Symptoms have definitely changed over the years, and so has the medication I've needed. I had a very long remission (about 5 years) just using Asacol and the occassional cortisone enema. But that stopped worked (cortisone enemas don't work at all for me now) and I moved to Colazal and Rowasa enemas nightly for maintenance, with on-and-off flares the past few years.

I'd still consider myself to have moderate colitis though, since I've only had 2 what I'd call major flares - 1 right at the start of the illness and 1 last summer. Plus everytime I have a colonoscopy (my next one is in Sept, bleh!) the doctor says I have scarring but my colon almost looks like I have no disease at all in some places.

But I figure as we get older, our bodies change and react differently to almost any illness, so this one won't be any different. But it still helps to remember what you've learned over the years and never forget what works for you and what doesn't - everybody's different.

Nikki

Adam1184
Regular Member


Date Joined Jul 2009
Total Posts : 93
   Posted 7/16/2009 1:40 PM (GMT -6)   
Thanks, I appreciate everyone's stories! For myself, I guess I usually try not to think about what I will be like 20 years from now. It kind of scares me.. I do like to think though, that in the past 20 years there have been pretty big medical advances so twenty years from now there could be a miracle pill for all of us to take!
Male
7/21/85
Diagnosed 2/08
10 Asacol per day
Trying to eat healthy
Misses chocolate and ice cream...


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 7/16/2009 2:29 PM (GMT -6)   
I've had UC for 9 years. I had my first colonoscopy & official diagnosis of pancolitis 2/08 so I don't know what the extent of my disease was 9 years ago. My UC has never been as bad as my first flare 9 years ago.
32 yr old female
Mild Pancolitis
UC since 2000 - in remission for most of those 8 years med free.
Cannot tolerate mesalamine. Currently take probiotics and fish oil. Trying Applied Kinesiology & supplements.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/16/2009 3:53 PM (GMT -6)   
See my story below, about 24 years of it.

I never had a remission until the Remicade. I think it did not get worse (but it certainly got old). It was worse at first because I didn't know how to manage it. Managing it eventually became pretty routine, my doc described it as being "part of my DNA"). I still can't bring myself to trust my gut and do lots of pre-emptive bathroom visits, even though the Remicade has put me in remission.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


JOVIGIRL71
Veteran Member


Date Joined Sep 2003
Total Posts : 660
   Posted 7/18/2009 9:18 PM (GMT -6)   
Hello,
I've had UC since I was 15/16 almost 21 yrs now. I was hospitalized 2 times because of it. On Prednizone 4 times for it.
I seem to be ok right now on imuran now and pantasa.Its stable but still in a flare in my opition. I don't work due to the condition , the past 5 yrs i've been in SSI. i feel safer on it . not worring about working and getting sick and stressed.
everyone is different though. so depends on each individual how your UC treats you.

donna
~~ Donna ~~
 
Diagnosed with UC in 1987 at age 16
Imuran ~ 2 1/2 pills a day,Pentasa 2x4 a day
Lexapro ~ 20 mgs daily for sanity  :-)
 


1952crp
Regular Member


Date Joined Jul 2009
Total Posts : 21
   Posted 7/18/2009 9:43 PM (GMT -6)   
Diagnosed with UC in '84, have had remissions for months at a time and cycle begins again. Meds now seem better than then, maybe cure is in near future. Good luck with your UC.

ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 7/19/2009 5:39 PM (GMT -6)   
My condition has become both worse and better. It has become worse in the sense that I have had my most severe flare during the past year and have moved from left sided to pan-colitis. But in many ways that experience (which landed me in the hospital) was a blessing because it forced me to become much more cognizant of my body, the nature of the disease, and how best to manage it for my particular self.

As a consequence, I am feeling about as well as I ever have. I still have residual problems (which I think are lingering effects of immunosuppressants), but I am living a good quality of life and am quite confident that I can continue doing so until I meet up with the big gastroenterologist in the sky (many years from now!).

I know for sure that there is no inevitable downward spiral with this disease. Many people see an improvement over the years - often dramatically so. So try not to stress over it -- you're too young for that.
Diagnosed with UC in 1990.
Current Meds: Sulfasalazine & Folic Acid.
Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, aloe vera juice, probiotics.
Other: Raw Milk for breakfast. Currently exploring a raw milk fast one day/week.


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 7/19/2009 11:25 PM (GMT -6)   
15 years here....started left sided...then pancolitis....now back to left sided again.... it will have its up and downs... immunosuppressants have started working for me - got me off pred....

i dont think that having UC will wear out your colon....it always rebuilds itself....unfortunately we are always rebuilding our colons....but i dont think that having it a long time will necessarily make you get worse with time per se....its a case-by-case basis however - some people will deteriorate, some will improve, and some will do both....hope that helps?
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:No longer on Pred as of 6/15/09, 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections monthly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 7/20/2009 9:38 AM (GMT -6)   
I was diagnosed at age 16 in 1961, and I am now 63 years old. So I have had this disease for forty eight years. I have not had surgery for it. I started out SEVERE with pancolitis, spending a month in the hospital, getting six blood transfusions. I was put on high doses of prednisone. And then tapered to low doses which I was on for over five years.

My worst years symptom wise were from age 15 to age 35......and then the disease seemed to calm down. Also at that time, I got a new GI and I got on Azulfidine. My disease actually started going into remission more often as I increased the eating of vegetables and fruits and as pre menopause approached.
Amazingly, improvement because significantly obvious after menopause. I believe my UC is not left sided only.

I really think for me, the trigger was a combination of antibiotics ( I had had minor surgery) and the onset of puberty. I got UC about two months after my first period and it really went quiet after monopause. So for me, I think hormonal issues are involved. I still take Azulfidine, and still get a colonostopy yearly. And I still have the disease. It's just that now my flares are more infrequent and milder.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


dottiewolf
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 7/20/2009 4:45 PM (GMT -6)   
I was also diagnosed in the late 60's.  It started as proctitis and worked its way up to ulcerated colitis through the whole colon.  I was and am very fortunate as i don't have the problems many of you have.  If it was not for some bleeding I wouldn't even know that I have it.  I was lucky also to have it go into remission for over 25 years. 
 
Last year it came out of remission and I am allergic to many of the medications so having trouble getting it to go back into remission.  My doc wants to put me on remicade if this medication does not work which is colazol.  I am not too thrilled about having to go on remicade and would like to hear from some people who are on it and how it has or has not worked for them.
 
Thanks

Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 7/20/2009 8:39 PM (GMT -6)   
dottiewolf said...
I was also diagnosed in the late 60's. It started as proctitis and worked its way up to ulcerated colitis through the whole colon. I was and am very fortunate as i don't have the problems many of you have. If it was not for some bleeding I wouldn't even know that I have it. I was lucky also to have it go into remission for over 25 years.



Last year it came out of remission and I am allergic to many of the medications so having trouble getting it to go back into remission. My doc wants to put me on remicade if this medication does not work which is colazol. I am not too thrilled about having to go on remicade and would like to hear from some people who are on it and how it has or has not worked for them.



Thanks


I don't know about remicade, but I know Colazal made me bleed while taking it. The bleeding stopped when I stopped taking it and switched to sulfa. Look at alternatives like Boswellia and diet, really don't want to start taking stuff like remicade if at all possible.

Basilpuppy
Regular Member


Date Joined Jul 2009
Total Posts : 28
   Posted 7/20/2009 10:13 PM (GMT -6)   
I was diagnosed in 1990. I threw away the meds in 1993. I gradually became better with whole foods and supplements, but had no formed bowel movements ever. A year and a half ago, I started putting a pear, an apple, and some water in the blender every morning (skins on!!!). One week later, my colitis just went away. Twenty years of misery gone.

I do feel that I was much better for getting rid of the drugs. They really affect your overall health negatively. I had to choose between diarrhea with health repercussions/side effects or just diarrhea - it was pretty easy for me. I have now been rewarded - my life is back.

Basilpuppy
Regular Member


Date Joined Jul 2009
Total Posts : 28
   Posted 7/20/2009 10:15 PM (GMT -6)   
Adam, there is nothing wrong with high-quality chocolate or ice cream. Just make sure that they are made from real food, not chemicals.

Basilpuppy
Regular Member


Date Joined Jul 2009
Total Posts : 28
   Posted 7/20/2009 10:18 PM (GMT -6)   
There is a lot of misconception out there about healthy foods. The medical people seem to be the most misinformed of all. Try Michael Pollen's books for a fresh big-picture look at eating well.

Healthy eating is about eating only REAL food - no processed or chemical food.

Mitzo
Veteran Member


Date Joined Dec 2007
Total Posts : 536
   Posted 7/24/2009 8:48 AM (GMT -6)   
I was originally diagnosed in 1986, 23 years ago, after quitting smoking. After a flare of probbaly a year and a half back then, I finally gave up on the meds (cortisone enemas) and recovered slowly. Then I had about 12 years of basically irritable bowel, but started occasional flares in around 2000, 2001, triggered by antibiotics. Have been on a bit of a roller coaster since then of flares, diarrhea, periods of calm. Have been on Pentasa since 2002.
23 years of UC which started after quitting smoking. In and out of flares which are usually triggered by antibiotics. Latest issue is endless diarrhea without blood or mucous.

 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30993
   Posted 7/24/2009 1:25 PM (GMT -6)   
Mitzo...you should be on both oral and rectal meds.
*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


rdm
Regular Member


Date Joined Apr 2006
Total Posts : 229
   Posted 7/24/2009 8:19 PM (GMT -6)   
24 years for me. At first mild proctitis within a few years Pan Colitis. My worst years were the early years which were essentially one long flare of varying severity. Once the right combo of meds got it under control there have been periodic flares but nothing like the first years I have not had a bad flare for many years. I consider myself very fortunate in that thus far I can control my UC with 5 ASA meds and probiotics. It has not affected my life style for many years and for me that is a major consideration. When the disease becomes your life and takes most of your attention it controls you. In effect one is living for the disease and not with the disease. I can now live fully with the disease but there is the remembrance of being lived by the disease.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/25/2009 5:15 PM (GMT -6)   
dottiewolf said...
I was also diagnosed in the late 60's.  It started as proctitis and worked its way up to ulcerated colitis through the whole colon.  I was and am very fortunate as i don't have the problems many of you have.  If it was not for some bleeding I wouldn't even know that I have it.  I was lucky also to have it go into remission for over 25 years. 
 
Last year it came out of remission and I am allergic to many of the medications so having trouble getting it to go back into remission.  My doc wants to put me on remicade if this medication does not work which is colazol.  I am not too thrilled about having to go on remicade and would like to hear from some people who are on it and how it has or has not worked for them.
 
Thanks
I am thrilled with how well Remicade has worked for me.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow

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