a question for those diagnosed when young who are now in their 40s or older

Hi all,

I'm curious about what the experience has been for those of us who are older and have had UC for awhile. (I was diagnosed at 28 and am now 44.) Mostly I guess I am curious to what extent this is a "degenerative" condition, as I believe I once read, that is usually bound to get worse over time, even if gradually. Or have people had the opposite experience, as some posts here suggest: you've learned enough about your body that you are now able to head off flares more easily? Have remissions shortened, lengthened, or stayed the same?

I think I was also inspired to ask this by the topic about age and controlling UC. If younger people's more active immune systems can sometimes mean tougher times, do we have anything to look forward to on that front as we age?

Looking forward to seeing these responses, as I'm sure the rest of the younger people in the forum are. We're all different, of course, but I have heard similar things about the disease "calming down" a bit over time.

Why does the colon shrink, old hat?

The longer you have the disease, your chances of getting colon cancer go up... that's why after 8 years or so, you have to get more frequent colonoscopies.

So as you age, this is something not to look forward to.

I was diagnosed at 14 in 1979 and am now 45 and I agree with Sue the variables are massive and no one appears to have the same experience with this ghastly illness.

Personally my Uc has deteriorated over the years from left sided to pancolitis and I've spent a lot of time over the years fighting doctors over surgery and hospital stays. My teenage years were not too awful due in no small part to the support of my wonderful parents. My early twenties saw me in and out of hospital and between 25 and 30 I had 3 healthy babies despite having serious UC flares after having my daughter and whilst pregnant with my first son. For a lot of my 30's I was in remission for which I will be eternally grateful as dealing with UC whilst trying to care for 3 small children would have been impossible for me and had I flared at that point I'm fairly sure I would have opted for surgery. Bizarrely having been pretty much free of it for a few years it came back.....big time and I've struggled with it ever since.

I suspect like Old Hat my colon has shrunk a bit, my doctors describe it as being very scarred and pretty ropey and they can't understand why I won't just get rid of it. I don't want surgery but I know deep down that I may have to some day. Like all of us I put up with an awful lot but I am continually searching for new things to try and gain a lot form the ideas on this forum. I've done scd with success for a few months but then relapsed badly and I'm currently trying to get things back under control with pred, aza, budesonide enemas, salazopyrin etc etc. I won't let it control my life even though I've lived with it for so long and I'm always optimistic that there will something new around the corner that may just see it off once and for all.

My consultant (in the UK) has frequently told me that in patients who develop the disease young it is not unusual for it to burn itself out. I keep hoping that I may be one of those, to be honest after nearly 32 years of it I've pretty much had enough.

This is a good question! I was diagnosed late 20s after the birth of my son. I am 34 now and always wonder how my UC will be at 44, 54. Heck 35..ha ha!

Thanks for posting this!

I was diagnosed when I just turned 20, im now 21 so had it a year and a half and had the worst time ever, flared up constant and been on 9 prednisone cycles, doctors say I can't go on pred again due to the damage it's doing and this is my last run at things.

Pretty pessimistic if I will be honest... if im 21 now, how the hell am I going to get to 40 without flare etc?

I had my first IBD symptoms (pain, blood and mucous but no urgency) in 1999 when I was 27, but it took until 2006 to get officially diagnosed. I had been misdiagnosed with internal hemorrhoids. When finally correctly diagnosed with IBD, it was rated as Ulcerative Proctitis and the GI said it was pretty mild. I continued to have a lot of blood, pain and mucous, but not too many urgent trips to the bathroom. It didn't really affect my life that much at that point. I took all my maintenance meds, but didn't worry much about it. My next scope in 2009 showed it had turned into full blown UC and was working its way up my colon. At this point I did start having issues with urgency along with my usual symptoms. I had short remissions, but felt sick most of the time. Last fall, after a beautiful 4-month remission, I had a severe flare up that was bad enough to warrant surgery. I was 38 years old. My scope at that point showed moderate to severe inflammation as far as my Dr. could safely scope. It had turned to pancolitis that became unresponsive to all my previous meds including Prednisone. Had you asked me last year at this time if I would be colon-less right now, I would have laughed and said no way. If I have learned one thing about UC, it is that seems to be completely unpredictable. I agree with Suebear... it effects everyone differently. At my local ostomy association meetings, there are people young through old who have gotten surgery for UC recently. Some had the disease for a while. Some had only recently been diagnosed.

As with all things, it depends.

I was diagnosed at age 33, and I'm now 44. My sister was diagnosed in her 20s and she's now 55. My brother was diagnosed at about 38 and he's now 41.

Of the three of us, my UC is the least severe, most controlled, and I take the lowest dose of meds. I think my sister's is the worst, but she and my brother sometimes are vying for that title.

I did martial arts for several years, pretty intense FMA stuff, and I ventured back onto a bicycle 3 years ago. Not doing the FMA anymore because that WAS starting to take a toll on me.

Wow, sounds like I wrote this "I was diagnosed at 22 and am now 42, and up until I was 40 my colitis was very mild, with very few flareups. Once I hit the 40year mark I experienced 2 of the worst flares of my life. Both instances was hospitalised and my last flare lasted 7months. Although currently in remission, I'm super scared of relapsing. So even though it sounds hopeful that as we age the disease slows down it seems to be the opposite case for me!"

Now at 42 I am back to "normal" but can not believe the lack of safe drugs for this. I am not a fan of biologics as the side effects vs % success ratio is way to dangerous to consider in my view... Please, some nerd (said with affection), cure us.

Diagnosed at 30....getting ready to turn forty. For me I'm just getting worn out and tired. Meds stop working and I move from one to the other, researching the heck out of them trying to make sure there there's nothing I take or do that I'm supposed to be doing. I have yet to get thru a year with at least one flare up, most of the time it's 2 or 3. My kids are getting older and I struggle with my UC at games, field trips, any school activities or volunteering I do. I push it too the limit sometimes. I would have problems holding down a job right now. I just can't stay in remission long enough. I am really holding out hope the imuran changes things for me and my family. I'm only on my 3rd week and prednisone is what I'm making it on. If you want to call it that! Ugggg! Flares are a little different each time and seems what works once may not work again for me. Like I said it's wearing me down.....I am getting closer to saying goodbye to that diseased colon that is calling the shots!
This is just my story and everyone's is different. What I hate most is to see that there are young children that struggle with this disease. Better me than one of my kids!

By the way, I would agree with the "as you get older theory" that the flares reduce as your immune system loses some of its fire over the years. Although I'm 27, I have noticed that when I get a cold, it doesn't take long before it is followed by a flare up. I guess my immune system goes on red alert and the colon doesn't escape its wrath.