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How much longer can our colon's last?

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Posted 6/24/2008 3:26 PM (GMT 0)
Hey guys, just feeling a bit depressed lately and if anyone understands, its you all... I have had left sided UC for many years and I do get frequent flares. The disease has progressed through the years and now I am on Imuran, and will probably have to up the dose I'm taking. Looks like many of us have had this disease for quite a while. I am thinking that this just can't go on for many more years like this. Are we all destined for surgery if there is no cure? Do any of you know anyone that has lived a long life with this disease? I think the recent poll that was asking when we were all dx'd brought these thoughts to the surface. Just wondering what you think.

Donna

Posted 6/24/2008 3:30 PM (GMT 0)
I think the majority of people can live normal lives. I hope so. I read that 20% eventually get the surgery. (I think) It sure is scary at times and not easy. Talking about it helps. I hope you can reach remission soon. I am newly diagnosed, but glad I have you all to talk to and learn from. Hang in there and Take Care, Bellski
Posted 6/24/2008 3:43 PM (GMT 0)
I haven't really read up on too many of the long term stats....The way I see it is there are many people out there that live with worse/conditions and diseases and live long full lives...If they can do it...we can do it! I have been flaring for four months now and that has made my preganncy a bit difficult but I realize it will only get worse if I stress about it. Just remember you are not alone and even though it's hard, try and stay positive. I hope you feel better soon and celebrate the good days!
Posted 6/24/2008 3:58 PM (GMT 0)
Between 70-80% of people with UC will not have to resort to surgery. They will live with minor or moderate disease their entire lives. Most of those people aren't on boards like this; their fluctations in disease are minor or non-existent. The remaining 20-30% will lose their colons due to either refractive disease, findings of dysplasia or cancer, or due to emergency situations. For those with refractive disease my guess is that the majority of us choose surgery to get quality of life back. That is what I chose to do after battling a 2+ year flare.

I think research shows that the increased frequency of flares does contribute to the possibility of having surgery one day. But so little is known about the disease that I'm not sure if that's correct. I had 10 years of remission and lost my colon. I know someone else who had 25 years of disease and lost her colon.

Sue
Posted 6/24/2008 4:12 PM (GMT 0)
I hear ya Donna, don't know if I am buying time or what???

I am going to go get a comprehensive 2nd opinion, somewhere!!!! who knows maybe i'll get 4 or 5 of them.
Posted 6/24/2008 4:43 PM (GMT 0)
Mark posted a great webcast about surgery and UC, I actually downloaded it and put it on my mp3 player so I could listen to it again since I missed a few parts. It's really informative and she talks about a lot of issues and statistics, and gives you a lot of great things to think about in regards to surgery- not saying we should all have surgery, just saying what everyone with UC should know and consider.
Here's a link to that post: https://www.healingwell.com/community/default.aspx?f=38&m=1162775

They say 20-40% of all patients end up having surgery at some point, but it's not all necessarily required- a lot of people just decide they WANT to have surgery because they are sick of the meds and having this disease.

There certainly are people out there who live long lives and never have surgery, but most of the time they have very mild disease and spend a lot of time in remission. Apparantly, the more frequently you have flares the more likely you are to have surgery because prolonged inflammation causes vascular changes, intestinal scarring and damage, and can also lead to dysplasia. But it's never a definite thing.
Posted 6/24/2008 4:50 PM (GMT 0)

Thanks for the responses guys. You are the best. 

Ya know Sue- you said that you had your colon out at 10yrs and the person you know had it out at 25yrs. Beth made the statement about buying time. That is a big concern. Am I just buying time? Am I going to loose or have to give up my colon at some pt? Will I wait so long that the J-pouch won't even be an option? Will the meds make my overall health diminish quicker over time, how long can our bodies take these kind of meds?

Lily, you are so right....many people live long lives with disease worse than ours. I feel very guilty feeling sorry for myself when I know that so many people have it so much worse. Sometimes the depression creeps up on me and I hate it and don't usually vent about it but I am thankful for your thoughts on this. I am so glad I found this site because I do realize you guys understand and that I'm not alone.

Donna

Posted 6/24/2008 5:26 PM (GMT 0)
some things I am really thinking about right now in regard to my time statement

1. Is it better to have the surery now while I am relatively young rather than when I get older where it may not be an option for the jpouch or healing could take much longer/not heal as well b/c of older age

2. I want a family and 2 aspects to this, I ask myself is it better to stay on drugs w/possible side effects to my unborn children or would it be better for me to take the chance of becoming infertile and not be on any drugs while pg. and the second part, it would be easier for me to have surgery now w/out any kids than having the surgery w/little ones to take care of.

also a side note to my #2, I am only pointing out how I feel, I know this is a real touchy subject and I'm not up to debating this, just wanted to put my feelings out there, not saying anyone can't comment but it's really sensitive to me and I debated not putting that out there, but just in case anyone feels the same way I do, at least you wont feel alone.
Posted 6/24/2008 5:26 PM (GMT 0)
Here is a recent post we did about the % of people who will need to have surgery and reasons why. There are different numbers so professionals say 20% will others leave it between 20-40%. I think whats more important than how long will your colon last is to ask yourself, "Do I have the quality of life I deserve?"

http://ucstory.wordpress.com/2008/06/16/of-uc-patients-have-surgery/

Take care,
Mark & Megan
My uc to jpouch surgery photo blog, and blog with UC related info: http://ucstory.wordpress.com
Posted 6/24/2008 5:35 PM (GMT 0)

Beth75 said...
also a side note to my #2, I am only pointing out how I feel, I know this is a real touchy subject and I'm not up to debating this, just wanted to put my feelings out there, not saying anyone can't comment but it's really sensitive to me and I debated not putting that out there, but just in case anyone feels the same way I do, at least you wont feel alone.

I agree with you 100% on this!! I don't have kids but I used to be a camp counselor for years and I know the little ones are tiring enough on their own as it is! A few ladies on j-pouch.org had young children when they had surgery and they said one of the hardest parts was not even being able to hold them afterwards since you really can't lift anything. And I've seen firsthand how cranky a baby can get when their mommy won't hold them :P
Posted 6/24/2008 7:24 PM (GMT 0)
I don't think that you can cover all your bases. Your UC is what it is, if you feel good and can use the meds effectively to control symptoms...that's great. You're living with your disease.

Putting it as buying time...Beth is in a different situation than many of us are....she's considering surgery and planning her future. I'm deeply impressed. It's an option that's possible for many of us with excellent outcome. Having to have our colons out due to emergency is another matter...the decision is forced with little or no options.

Regarding others worse off....we may get there one day because most of us don't have only UC.

Pity parties are fine.....allow them, but limit the time and then do something else.  

I would probably give up my colon rather than be on big gun meds for any extended period of time.....some of those meds scare me more than having my colon out.....but ultimately it would depend on what side effects I was having from the meds.

I'm happy that I've maintained the status quo for as long as I have....the meds and I are compatible and I intend to continue until all hell breaks loose. I'd be less tolerant of symptoms as I age than when I was first diagnosed.... plus, I know there are endless resources of support from those who have had removal surgery. I'm less afraid because of their experiences.

Life is short....I do fear for my future, but since I've never felt perfect...I like feeling as good as I'm able. That includes dealing with my depression and anxiety. Therapy helped immensely, and the meds for depression allow me to want to get on with living.

Try to think about what you can do, what you'd like to do rather than all the things you can't. There are always options and it's OK to change directions if one isn't working. It's much better than always having disappointment.

Living with UC isn't a walk in the park....but the point of it all is to find the best case scenario for the situation we're in. Adjustments will be necessary....there are consequences for everything. If you want to have a job that doesn't coincide with UC...change jobs...etc. If friends or family negate our situation...limit time with them.
As soon as we've isolated ourselves and retreated into our own suffering, we lose hope to regain freedom. All is subjective.....but if goals are unattainable, then we set ourselves up for potential failure.

May tomorrow be a feeling better day in whatever way possible!

quincy

Posted 6/24/2008 7:47 PM (GMT 0)

When Bratcat got sick for the first time 1-1/2 years ago we (as were most of you) pretty unprepared for UC. We learned that it is a lifelong disease with possible chances of remission, even long-term. I remember thinking that she would need about 2 weeks or so to get better (similar to when you are on antibiotics--the strongest stuff any of us had ever been on). Big reality check. At first asacol and the enemas (along with prednisone) worked. Then another flare and they didn't do their job so it was on to 6-mp (which a year earlier we swore she would never take). Around that time we decided that in the spring (when she was supposed to be healthy), we would speak to a surgeon to be prepared. Then a 3rd flare this past March. Added remicade. Through all this, the GI saw dysplasia (but pathologists feel it is the inflammation). We saw 2 surgeons.

It is not an easy decision to make. Especially because she is pretty much in remission again. But she hasn't really responded that well to the drugs (except prednisone and even that seems to be taking longer and longer). She is young, healthy, and doesn't want to always worry about when she will flare again and how much school she will miss (9 weeks last year, 16 weeks this year). She will be a senior in September. Surgery will bring a whole new set of issues but hopefully they will be simple to deal with. She is still under our insurance. What happens if she doesn't have surgery and gets sick later? Will she have good insurance? Will she have to worry about keeping her job? If they see dysplasia at all, she would be sent to a surgeon immediately anyway. Better to have the surgery when she is in remission rather than in a flare (although it is hard to accept surgery when she is feeling good). The risk of colon cancer increases dramatically the longer you have UC.

Bratcat is scheduled to have step 1 of the j-pouch on July 3 (next Thursday). It is scary and exciting at the same time. We chose to do it early in the summer to give her time to recuperate and adjust before school starts right after Labor Day.

Posted 6/24/2008 7:55 PM (GMT 0)

Beth, I totally agree with how you are feeling as well regarding time.... j pouch now or will it be too late someday and I'm not getting younger. When I was at the age to have children, I also considered all my options at the time, Unfortunately, after much trying, childbirth wasn't in the cards for me. I wish you so much luck and health.

 Quincy, My pity parties don't last long and this one probably won't either. I am a big worrier and this is one more worry for me to conquer. I have other health issues that are scary as well. I will get a grip, I always do. Thank you for your thoughts.    

Just haven't been feeling well. Thanks for all your responses and encouragement.

Posted 6/24/2008 8:01 PM (GMT 0)
How long can our colon's last? Well, the answer to that can vary so widely, just like the symptons of this DD. I guess it depends on the severity of our UC. I have had it for 27 years now, I'm in remission and doing so well I often feel guilty to see what alot of you are going through. My last flare went on for over 2 long years and there were times I would say to "I can't keep going on like this". The "big guns" meds really scare the crap out of me. I cried like a baby when my GI talked about putting me on 6mp. I read this forum all the time and so many people are suffering the way I was during my 2 year flare, or worse, but for much, much longer than 2 years. You are all sooooooo brave. I would have to agree with quincy on the "big guns" meds. I would probably opt for removal, being too afraid of the possible side effects of the other meds. But, that is easy for me to say now, I'm not currently "walking in your shoes" or should I say "sitting on your toilets". This disease can be so debilitating, people who haven't experienced it, well, they could never imagine what we go through. I hope my colon will be with me for awhile. I don't know what I'd do if they stopped making my meds. I honestly don't think much about my UC. Ya, I think about it momentarily when I take my pills, or when I have the occasional salad, I think "ok, am I going to have to pay for this" But, other than that I am lucky enough to not be experiencing daily problems with it at this time, and pretty much eat and drink anything that I want. So, I really, really, really hope that all of you can soon see some improvement and possibly remission......

It still amazes me that they haven't found a cure for this other than removing the colon.
Posted 6/24/2008 9:58 PM (GMT 0)
I had the same line of thought not too long ago Donna (pupluv). I was getting depressed and wondered why was I poisoning my body to keep a colon that is never going to work properly anyway? In fact, I'm still in the same mindset just not depressed anymore :) I have always flared to some degree and I have never really had it under complete control. So I am one of the people that may end up having it removed. It's a scary thought and a major step so I have to be sure that I am in the right frame of mind and investigated all my options before I think I would be ready to take that plunge.

Donna (munchkindd), you gotta admit though that they may be getting closer to a cure. You've had this a long time and just look at the advances they have made since the time you were diagnosed. I know that when I was diagnosed they didn't even have all these meds that people are using nowadays - I think all they had at the time was Asacol, Sulfasalazine, Rowasa and steroids. Now they have Colazal, Lialda and easier form of steroids. So at least they're trying. :) I don't think that we will see a cure in our lifetime but I am hoping that they find one for the future generations.
Posted 6/24/2008 10:06 PM (GMT 0)
"why was I poisoning my body to keep a colon that is never going to work properly anyway"
I think that's an excellent question and perspective on it. To be perfectly honest, no matter how we look at it and no matter how many medications we take, it's never going to be like someone who has a healthy colon. :-/
Posted 6/25/2008 1:06 AM (GMT 0)
I understand what you mean pupluv. I worry about my colon. How long will it be before Remicade fails? If there's a good chance of having surgery down the road, should I just use the Remicade to get healthy enough to have surgery while I'm young? And I'm still having doubts about Remicade--I know that side effects like lymphoma are rare but it's still scary! Part of me is really hoping that the Remicade will work well until there is a cure, so I can have it all--no disease and a healthy colon. And I'm also worried about how UC/surgery would affect me having children. I've always wanted to have children but what if I can't once I get surgery? Or what if I hold off on surgery until after I have children but never find the right person to have them with? Then I would have wasted so many years waiting when I could have been healthy. It's so complicated!

Bennie--I hope bratcat's surgery goes well and keep us updated!
Posted 6/25/2008 1:23 AM (GMT 0)
"why was I poisoning my body to keep a colon that is never going to work properly anyway"
It's so depressing to know that we'll never have non-UC colons! I really really really hope there is a cure soon.
Posted 6/25/2008 1:39 AM (GMT 0)
in regards to child rearing, it will be harder on you to have a child and take care of it when you still have UC or are recovering from surgery.  One of the things that bothers me most about NOT getting surgery sooner is that i missed out on alot of the first two years of my son's life.  I was so tired the whole time i couldnt' take go places with him, i even missed going out to the ocean with him.  First time things that i will never get back.  Then, when he was almost two i had surgey and it was really really hard, because you aren't supposed to lift things and you can't take care of a two year old without lifting them, also he is rather wild, lol.  So for the six weeks after my surgery he lived at my grandmas.  My husband had to work, and also, if DS had been here he would have been wanting to sleep with me and for me to play with him.  It broke my heart to not have him here.  After surgery, it is so much easier to take care of him!  I take him places all the time now, i play with him, i chase him around the yard, he still wears me out, lol, but that is what kids do! 

As for how long your colon can last, i suppose it can last forever, if you stay on the strong drugs, or are willing to be in a constant flare after the drugs quit working.  I think it is just up to the person to decide if their colon is "gone"

i thought about the fact that i was treating a colon that was pretty much useless and didn't want to be there anyway, one that was literally turning against me.  And i thought that was crazy, why not get rid of the thing, and be cured, completly.  It was a hard decision, the second hardest i ever made, but i am sooo glad i did it, every day i think of a little something that makes me glad i did it.

There are lots of new drugs, some that have come out even since i had my surgery, and it is possible there will be a cure one day. I hope that there is, so that people won't have to have surgery.

Posted 6/25/2008 10:16 AM (GMT 0)
I feel the same way as many of you, but am determined to hang onto my colon for as long as possible. there are some very exiting advances in stem cell treatments and drugs being trailed like Prochymal (which seems to be our best hope at the moment). It's in FDA stage 3 trials and has had a 100% success rate as far as I can tell.
Posted 6/25/2008 10:38 AM (GMT 0)
I think sometimes it depends on your current profession. When I went into remission on Remicade a couple of years ago, I took advantage and made a complete career change because of an opportunity I had. It's been great ever since, the problem is should I ever flare again, I'll be in very big trouble. I went from a very friendly UC job to a complete 180 UC is out of the question job. So I may have no choice, should I flare again, just to save my job.
Posted 6/25/2008 2:17 PM (GMT 0)

Ugh, career/profession is another problem. I don't know what career to choose b/c all of the ones I'm considering require grad school, most are competitive, and I don't know if I'd be able to do any of them if I was in a flare. mad

I looked up Prochymal and it looks promising. So, since it's in a FDA trial, does that mean it could be approved if all the trials go well? But how long would that take?

Posted 6/25/2008 2:28 PM (GMT 0)
Well if everything goes well in the stage 3 trails then it could be approved for Chronies within a couple of years. As for UC, it could either be used off label of we will have to wait 3-4 years I'd imagine.

It really does look like it will be the main treatment option for Chrones if approved. Very promising indeed.
Posted 6/25/2008 2:38 PM (GMT 0)
Another aspect to how long the colon will last isn't necessarily dependent on just managing flares with drugs. Many who have had surgery discovered that their colon's fell apart in the surgeon's hands. This is not uncommon. Chronic inflammation takes a toll on tissue and it disenegrates. You can have chronic disease and choose to stay on medication and "live with it" only to ultimately lose your colon due to it falling apart.

Sue
Posted 6/25/2008 2:55 PM (GMT 0)
SueBear, what do you mean falling apart? and wouldn't managing your flares manage your inflamation? Please be a little more specific b/c you totally confused me hear and kind of scared me. how can a colon fall apart during surgery when colons are put under stress and pressure everyday..

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