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Posted 6/10/2015 6:27 PM (GMT 0)
Do you ever worry what life will be like when you're 65+ and flare ups hit? Or if you're retired and you want to do things like, go on a cruise or travel, and you can't plan ahead because you're worried about a flare up? I feel like now it's not that bad because I am always working, but when I am older, i don't want to have UC in the back of my mind. I also know surgery isn't a perfect cure. I was reading something the other day where someone said, "surgery is trading one big set of issues for a much smaller, more manageable set of issues" and I think that sums it up pretty well. The problem is that some people have more issues and others have none and you don't know which you will be until after it's done. Really terrible illness. I would love to be free of it, free of medication and free of having worries about it resurfacing over and over throughout my life.
Posted 6/10/2015 6:47 PM (GMT 0)
I don't obsess about it but I'm doing pretty darn good right now and I am terrified about having to go to the hospital for something else (like a heart attack) or getting old and senile. I manage my own condition through a combination of alternatives and meds but if I were to go to the hospital or can't think for myself anymore there is no doubt in my mind that my regimen would not be followed and I would get worse.
Posted 6/10/2015 6:53 PM (GMT 0)
I'm banking on the anecdote a couple of people have heard from their GIs that UC tends to 'burn itself out' in old age.

But seriously, I'm a constant worrier and in my attempts to de-stress I've been trying to take things day to day and not borrow trouble for months and years ahead. At this point I'll be happy to make it to old age with my mind perfectly in tact and my body more or less so. I worry about getting in new jobs at work, keeping my disease tamped down, the world economy, a Grexit, the porch that needs painting, the leaky roof etc. etc. etc. It is very hard (for me) but living in the moment is so freeing.

I'm trying to have more of a memento mori outlook on life, sort of like this quote:

"You who say, “Today or tomorrow we will go into such and such a town and spend a year there and trade and make a profit”—yet you do not know what tomorrow will bring. What is your life? For you are a mist that appears for a little time and then vanishes."

And anyway, Canada Mark, Old Mike, et. al. will have this figured out long before then :)

Post Edited (Levi) : 6/10/2015 12:56:41 PM (GMT-6)

Posted 6/10/2015 6:54 PM (GMT 0)
I cant worry about in 45 years because im only 20 and than i would get depressed
i think being elderly is really scary any ways (though it sure as heck beats the alternative)
I want to take life now and enjoy it
obviously i need to make choices that will help me be healthy in the future
but its possible after I have kids and raise a family i will opt for surgery so i can have UC behind me (no pun intended)
but even now i want to take vacations and im scared of the plane- 2 nasty bathrooms for the whole plane plus the recycled air and all of the immuno-suppressants im on.....
i try not to think about it too much
Posted 6/10/2015 6:56 PM (GMT 0)
I just didn't want the ups and downs of UC flares anymore. I wasn't thinking about later on in life, it was more about right now and I didn't want to get older (if i'm that lucky) and regret not having surgery sooner.

Living with a Pouchitis is totally different than UC flares; I have cronic pouchitis and I treat it with antibiotics; I don't even notice it. I empty my pouch 3-5 times a day and don't have to wake up to empty it at night.
Posted 6/10/2015 7:03 PM (GMT 0)
thanks you guys. You help put things in perspective. I am a worrier and I don't think I will ever be able to do normal things with this illness. I worry that if I lost my job, I couldn't get another. Things are always up and down. Even if I was up and got a job, there would come a time where I would become the unpredictable employee with illness that everyone probably wants to fire... Doesn't seem like a great way to move forward for the long-term future.
Posted 6/10/2015 7:04 PM (GMT 0)

ks1905 said...
I just didn't want the ups and downs of UC flares anymore. I wasn't thinking about later on in life, it was more about right now and I didn't want to get older (if i'm that lucky) and regret not having surgery sooner.

Living with a Pouchitis is totally different than UC flares; I have cronic pouchitis and I treat it with antibiotics; I don't even notice it. I empty my pouch 3-5 times a day and don't have to wake up to empty it at night.

at least antibiotics are cheap and easily accessible. I have seen some stories out there where people are leaking and going 15x a day after surgery. Those are the stories that scare me. People who have BMs in their sleep accidentally.
Posted 6/10/2015 7:06 PM (GMT 0)
Look at where technology has come in the last 10, 20, even 50 years. Who knows what is around the corner? There's always something under development that seemed impossible just a few years prior. New drugs are being tested all the time. We may stumble across something that works for UC in our search for cancer (or other) treatments. I think a better question is: what's the next-generation treatment plan for UC going to look like? We may not have to worry as much about it in the coming decades.
Posted 6/10/2015 7:10 PM (GMT 0)
The main reason I had surgery was because I was getting sicker and sicker and none of the meds worked. I needed relief at that point In time and I never really thought about the future. So now that it's all behind me the future aspect of it is a bonus. I don't have to worry about UC ever again. People have to get off this notion that everyone has issues after surgery. The fact is most don't. I still don't think a cure or a decent drug that works well (for all people) is coming anytime soon.
Posted 6/10/2015 7:15 PM (GMT 0)

ki-wi said...
Look at where technology has come in the last 10, 20, even 50 years. Who knows what is around the corner? There's always something under development that seemed impossible just a few years prior. New drugs are being tested all the time. We may stumble across something that works for UC in our search for cancer (or other) treatments. I think a better question is: what's the next-generation treatment plan for UC going to look like? We may not have to worry as much about it in the coming decades.

I think about that too but the reality is that this illness has been around for a very long time and we still don't even know what causes it. we also know that different people respond to different treatments - we don't know why that's the case. I have a feeling we are very far from finding a great solution. I used to think like that, "maybe there will be a cure in 10 years"... now not so much.
Posted 6/10/2015 7:23 PM (GMT 0)

ByeByeUC said...
The main reason I had surgery was because I was getting sicker and sicker and none of the meds worked. I needed relief at that point In time and I never really thought about the future. So now that it's all behind me the future aspect of it is a bonus. I don't have to worry about UC ever again. People have to get off this notion that everyone has issues after surgery. The fact is most don't. I still don't think a cure or a decent drug that works well (for all people) is coming anytime soon.

I was reading this recently:
www.ucsfhealth.org/education/special_concerns_for_people_with_j-pouches/
and it seems to be based on actual statistics and it sounds like there is a good percent of people who have night time leaks and 13+ BMs a day...
Posted 6/10/2015 7:51 PM (GMT 0)

ki-wi said...
Look at where technology has come in the last 10, 20, even 50 years. Who knows what is around the corner? There's always something under development that seemed impossible just a few years prior. New drugs are being tested all the time. We may stumble across something that works for UC in our search for cancer (or other) treatments. I think a better question is: what's the next-generation treatment plan for UC going to look like? We may not have to worry as much about it in the coming decades.

I agree with this. I try to look at it optimistically that every day that goes by is a day closer to new treatments becoming available. Things will continue to improve and in time they will develop new drugs and ways of managing this disease. I am particularly excited by the research being conducted by Qu Biologics right now.

That's also one of the reasons, if possible, I would never want to have surgery. I can't imagine anything more upsetting that biting the bullet and having surgery, then in the following years new and better treatments become available. I would not cope well with that at all.
Posted 6/10/2015 8:13 PM (GMT 0)

notsosicklygirl said...

ByeByeUC said...
The main reason I had surgery was because I was getting sicker and sicker and none of the meds worked. I needed relief at that point In time and I never really thought about the future. So now that it's all behind me the future aspect of it is a bonus. I don't have to worry about UC ever again. People have to get off this notion that everyone has issues after surgery. The fact is most don't. I still don't think a cure or a decent drug that works well (for all people) is coming anytime soon.

I was reading this recently:
www.ucsfhealth.org/education/special_concerns_for_people_with_j-pouches/
and it seems to be based on actual statistics and it sounds like there is a good percent of people who have night time leaks and 13+ BMs a day...

Night time leaks are common at first; as your body learns and adjust, most of the night-time leakages stop. I never had that issue but I was prepared for it; I actually bought Depends prior to my take-down and never need them.

I'm not surprised by that number of 9% of the patients have over 9 stools a day; I would say that a good amount of those patients have structural issues with their J-pouches. Some surgeons are better at building J-pouches than others, that's why people recommend finding the best surgeon available.

Don't conflate a Colon BM to a J-pouch BM; they are totally different. J-Pouch BMs do not take as long and are less "exhausting".
Posted 6/10/2015 8:30 PM (GMT 0)
Got UC at 46 while working full-time, am now 60 and retired. UC has gotten easier over the years, partly due to having the time to really figure out what causes my symptoms and deal with it without stress.

No advances from the medical community in the past 14 years have been helpful, achieved remission on my own with help from this forum (also some non-help due to failed supplements but had to give them a try).

Don't borrow trouble and worry about "what-if" in the future. Being older has some advantages, no one cares if you can't do something or don't show up, lots of other people have worse problems. Travel insurance is available for people worried about health problems canceling their expensive trip. Better yet get an RV and travel the US with a bathroom nearby.

I am looking forward to being 65, signing up for Medicare and saving thousands of dollars on health insurance. What will I spend all that freed-up money on?
Posted 6/10/2015 8:46 PM (GMT 0)
Right after my sons colectomy, I said not for me,no way ain't gonna happen.
Since my son got UC I worry more about the grandchildren, then myself.
OM
The moneys gone, the colons shot, but the liquor we've still got.
Adaptation from the movie Cocktails.
Posted 6/10/2015 9:37 PM (GMT 0)

notsosicklygirl said...

ByeByeUC said...
The main reason I had surgery was because I was getting sicker and sicker and none of the meds worked. I needed relief at that point In time and I never really thought about the future. So now that it's all behind me the future aspect of it is a bonus. I don't have to worry about UC ever again. People have to get off this notion that everyone has issues after surgery. The fact is most don't. I still don't think a cure or a decent drug that works well (for all people) is coming anytime soon.

I was reading this recently:
www.ucsfhealth.org/education/special_concerns_for_people_with_j-pouches/
and it seems to be based on actual statistics and it sounds like there is a good percent of people who have night time leaks and 13+ BMs a day...

That write up is directed at people immediately post op. All those things are common right after. I was going about 13x a day for the first two or three weeks. Then is quickly slowed to 6x. Now my average day is 3 or 4x. I don't need to get up at night anymore but that's a recent thing....took almost five years. You have to be realistic and realize that it takes some time for your body to adjust to such a huge procedure. For whatever reason it takes some folks longer than others to adjust. I was very fortunate (and I had an excellent surgeon). My uncle had a horrible first year with his j pouch. But after that year, he was fine and he's still doing great 18 yrs. later. My sister too....her j pouch is 23.
Posted 6/10/2015 10:46 PM (GMT 0)
I was diagnosed with UC at age 63, after 3 years of untreated symptoms--when I finally quit smoking. I'm happy I took early retirement at 62. I feel better daily and live in the moment by habit. If it's not right here right now there's no need to worry. And if it is right here and right now just be with it--tough to do but possible. I'd like to believe UC burns out by the time one is elderly but in my case I wonder (not worry) would that still be true?
Posted 6/10/2015 11:03 PM (GMT 0)
I retired in 2008. I've had far less problem with my colon since then, possibly due to the complete disappearance of stress from my life. And it's wonderful to be able to just stay home and rest all day if I'm especially tired. Exhaustion was always one of my most troubling symptoms.
Posted 6/10/2015 11:49 PM (GMT 0)
I too worry about the future, but not so far in the future as retirement. I'm busy worrying about getting to retirement, after that I feel like the pressure, stress and worry will ease. I worry about being able to work long enough to save enough for retirement, be well enough to have kids, live life etc etc. I look forward to retirement. I think not having to go to work every day would be freeing. I wouldn't really need to be constantly worrying about limping my colon along long enough to make it through that next meeting or that next business trip. In retirement I could come and go as I feel. I wouldn't have to juggle work and all those doctors appointments. I think old people are supposed to have lots of ailments and doctors, it will be like the rest of our peers will finally have caught up to us, medically, and we'd be on a level playing field! Lol! Don't fear retirement! Also, once I'm old, I figure I can fake senility in any situation, like if I have an accident, lol! I think being old is gonna be great!!!

(Ps, cruising is one of the BEST travel options for poopers like us, there's bathrooms everywhere!!!)
Posted 6/11/2015 12:06 AM (GMT 0)
Well I'm now 45 and I'm not really worry about aging with UC. I'm lucky cause I will be able to retire at 60. I could wait for 65 and have more money when I do. But I value quality of life over the $.

All I hope for is that conditions does not worsen until then. I'm sure that at 60 I will be better and wiser as now I'm better and wiser than when I was 30 :). As I age I seem to find more happiness in the simple things of life. I fell UC is also very connected to our emotions. So hopefully I'm right and when aging my UC won't get worse and maybe improve.

So, if I stay fine until 60 I'm sure all will be ok.
Posted 6/11/2015 12:11 AM (GMT 0)
I'm in agreement with Jonny_Murry, for the time being. I am trying to tough it out until they figure this out. I believe my UC is actually caused by dysbiosis, so I'm looking forward to the day where custom crops of gut flora can be cultivated.

I do worry about work, since I do have well over 20 years to go before I can retire. I figure if it gets too bad, well, other people have received disability for far less than we suffer through. It would be extremely helpful if I had access to a bathroom that was nearer than a block away in our office building. mad
Posted 6/11/2015 2:45 AM (GMT 0)
65 will suck whether i have UC or not !



smilewinkgrin
Posted 6/11/2015 11:21 AM (GMT 0)
I worry about getting run down as I enter the golden years of my life. UC always rears it's head when we are at our most vulnerable and becoming old qualifies. It's a scary thought.
Posted 6/11/2015 2:55 PM (GMT 0)

juststud said...
65 will suck whether i have UC or not !



smilewinkgrin

I don't know, my parents are older and they live very nice lives. They travel a lot and they don't work tons. I think it seems like a better lifestyle than what I've got - especially with UC, haha. My grandma is in her 80s and she's really healthy and active. tongue
Posted 6/11/2015 3:25 PM (GMT 0)
it's really sucks when our old parents are in better health than us !

not that i want anyone to be unhealthy, but geez, really !
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