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How much longer can our colon's last?

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Ulcerative Colitis
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Posted 6/25/2008 3:40 PM (GMT 0)
I am sorry to scare you, that wasn't my intent. My intent was to say that if one is living with chronic disease/inflammation that merely staying on meds doesn't guarantee that you will have your colon for life. I imagine in my case my colon would have been headed towards disinegration. I had a 2+ year flare that was often severe. The flare was chronic meaning that I never gained remission. This type of uncontrolled UC and chronic inflammation wears down the colon. Surgeons describe these types of colon like "paper" and they really do fall apart in pieces during surgery. I don't think there is a method to gauge how a UC patient would know when their colon gets this bad but I would say that if a GI ever recommends surgery that one should heed that directive.

Sue
Posted 6/25/2008 3:50 PM (GMT 0)
I personally don't know of anyone who has had it for a long time. How long have you had it? I found out I had it back in 1995. I have had my ups and downs. I am glad I found this site cause most people don't understand what it is like to live with this condition. I think if you take care of yourself you can live without the need for surgery.

Posted 6/25/2008 4:34 PM (GMT 0)
Cajun Cutie,

If you check out the recent post called "Informal Poll", alot of the members here shared the ages they are and the age they were when diagnosed. Some have only been diagnosed for a few years, and so far the longest posted was 46 years! Some can live their whole life with colitis, some suffer complications (perforated intestine, toxic megacolon, cancerous changes, etc) and require emergency surgery, and some just choose not to deal with it anymore. Sometimes no amount of diet, exercise, or medication can help, everyone is different. It's great you're managing well though! :)

I'm glad you found us as well, one of the most important parts of dealing with this disease is having others to talk to who understand what you're going through and realizing you're not alone. Welcome! :)
Posted 6/25/2008 7:46 PM (GMT 0)
Donna

I am 62 and was diagnosed a month after my 16th birthday. My colon has lasted for 46 years.

I started with pancolitis and doctors were pretty sure I would need my colon removed. But they wanted to wait a year. So at 17 I went in and the inflammation had reduced to the left side.
I did not have surgery.

My worst years were between 15 and 35.....flares more often and more intense. I was an angry twentysomething at times, sick of prednisone and quit going to doctors for four years. But when I was about 32 I had a flare so bad, I was sure I was going to die from loss of blood. I found a new GI, he put me on Azulfidine and did a colonscopy. (One of the reasons I stopped going was because in the early years for me, all they ever did was barium enemas and zigmoidscope....painful, embarrassing and miserable for a young woman. My new doctor promised me he would never cause me pain or embarrassment again.

He also gave me Immodium which was prescription at that time. My worst flares were around my period.

I went to college at 17, graduated in four years and became a teacher (probably not the best profession for someone with bathroom issues). But I stuck with it, toughed it out. By my mid 30s the flares were less often and less severe. After menopause even less often and less severe.
At 62, I still take Azulfadine, Folic Acid...I lost my gall bladder in my 20s due to infection probably as a result of the flares......but my flares are less severe, and now with probiotics (Digestive Advantage has helped a lot).....even less often.

Hang in there. It is certainly not an easy disease with which to live. It does not have the glamor of other chronic diseases (ie rarely hear about on medical shows).......and until this board, I spent my entire life not knowing another person with the disease. Now maybe there were some who had it and did not talk about it but who wants to talk about bathroom issues.....so I figure a lot of UC people suffer in silence.
But we have each other now.
And research is getting better......
Posted 6/25/2008 8:07 PM (GMT 0)
Hi,  I'm caring mom, and my son has UC.  My husband has it too, and has for 37 years.  He started on Azulfizide years ago.  His is on the descending colon only. My sons is the whole colon, ilium and rectum. Poor guy.

My husband started on Asacol 25 years ago. Since he retired, 8 years ago, and has less stress, he is doing great. Full remission.  His last colinoscopy looked like a normal large intestine, said his doctor.  He now takes 4 asacol a day and 1 6MP a day.  And,,,he eats a HUGE Bowl of salad every single day. He also takes a ton of vitamins from folic acid to B complex and others.   He is about 70 pounds over weight too.

He loves to eat. :-)  But, the point is, you don't necessary have to lose your large intestine.  Try to keep stress out of your life.   Good luck to all you poor folks putting up with this crappy disease.  I feel for you.

Posted 6/25/2008 8:08 PM (GMT 0)
Cajun,

It doesnt matter how 'well' we take care of ourselves, WHEN the meds/diet/treatments don't work and/or you cannot take them due to the side effects they give you (kidney disease, diabetes, bone loss, cancer etc.) , and you do not get better, surgery is pretty much the only option left for some unless you can 'live' w/an active flare. I don't know how many people could live the rest of their lives going to the bathroom 25+ times a day with blood spurting out of their bums for the next 50 or 60 years, I don't think I would live very long, especially if I get toxic mega colon.

It's not my fault I got this DD and it's not my fault I can't take any 5ASA's due to it giving me kidney disease and it wont be my fault if remicade and humira and any other drugs wont work for me and/or I can't take them if my body has a bad reaction. Those are things we just cannot control, no matter how 'well' we take care of ourselves.

I hope you are part of the percentage that does not have to deal with these issues and do not have to even think about it, but some of us do.
Posted 6/25/2008 8:25 PM (GMT 0)
*hugs to Beth* I'm so glad to have people like you around so I don't feel so much like I'm overly sensitive and pessismistic about this DD.
Posted 6/25/2008 8:33 PM (GMT 0)
When I feel I've had enough, I'll have my colon removed. The thought of managing this disease and being discomfited by it even one more day let along 20 or 30 or 40 years makes me want to call a surgeon tomorrow.  I really do feel at some point I need to get a life beyond UC.

Posted 6/25/2008 9:08 PM (GMT 0)
I don't think the question is necessarily how long our colon's will last, it's how long our minds can deal with it. And bodies too. I don't have any hard #'s, but the majority of surgeries performed for UC are elective. I understand what Sue is talking about re. the "paper" colons. However, if you get a yearly colonoscopy I would think that sort of tissue disintegration would show up. And probably cause major problems with having a scope up there in the first place! It is a tough call- at what point do you say "Enough!". The very fact that we have that option makes it tough. I personally had surgery scheduled twice, have had it recommended by every GI and specialist/surgeon I've met with, & cancelled it both times. And funny enough, I'm doing really well right now. I did say "Enough!" a few times, but then as the date of surgery approached, I honestly couldn't say that my quality of life was bad enough to merit that type of intervention. My GI understands this, & while I think I frustrate him sometimes, he's willing to try every other option there is. He also thinks one of these days I will just up & go through with it. I have missed a big chunk of my daughter's life due to UC- school recitals, birthday parties, holiday gatherings, vacations, going to the beach & playgrounds... all cause I couldn't be away from a bathroom. The guilt involved with that is tremendous. I personally think having a child after surgery would be easier than having one with poorly controlled UC. At least with the surgery, you know it's going to get better with time, each day it get's a little beter. As far as the meds & the potential side effects go, for me, it's like saying "I better not cross the street, I may get hit by a bus." I can look at what the meds are supposed to be doing, & ask myself if I am experiencing bad side effects from them. If they're working alright with no problems, I can't worry about what may or may not happen. Getting a life beyond UC is huge, but you can do that with UC. Obviously while in a major flare it's tough (if not impossible), but day to day... you just have to look beyond it. If you need to wear diapers, then do it. If you need to/want to attend a big event, it's ok to take Immodium once in a while. If you poop your pants while out, hey whatever... get to a restroom, clean yourself up, change into your spare clothes & off you go. You don't get surgery because the timing is right- like, you have insurance, or your folks can watch your kids, or your job ok's your time off request... you get surgery when your life is unbearable with any other option. If dysplasia is found, then you probably get surgery! Obviously it's better to undergo a surgical procedure while fairly healthy, but for me, mentally, that's just not going to happen.
Posted 6/25/2008 10:40 PM (GMT 0)

First off I don't believe it is as simple as how long a colon will last.  There are way too many variables with this disease.  No two people have the same symptoms and same progression of the disease but all too often each person tries to "diagnose" using their own personal understanding and history with the disease.  Statistically only 20% to 30% have there colons removed.  Simple math will tell you that 70% to 80% don't, meaning they live out their lives without surgery (my assumption is their disease does not progress as far as mine did, thank goodness).  Simply, some people's colons make it and some don't, more then likely based on how bad the disease has progressed.

When it comes down to surgery only around 15% to 20% are considered emergency surgery so statistically 80% to 85% are "elective" (I hate that word) because there is no other category.  The only way to be classified as emergency is if they have to go in immediately due to extenuating circumstances (toxic mega colon, perforated bowel and such).  That means almost all cancer surgeries that have time to be "planned" fall into the "elective" category.  Now even though everyone has not been faced with the worst this disease can dish out doesn't mean there isn't a dangerous, fatal side to this disease.  I spent five days inches from dead, immobile and completely incoherent and it is all due to UC and prednisone (I became septic because my adrenal glands shut down because of the steroids).  The possibility of this happening again to me was high considering the only thing that would slow my attacks down was prednisone and it didn't work all that good and only for about two weeks.  Since none of the meds or diets worked in five years the only solutions I had were surgery, or live with it and hope the prednisone didn't kill me.  Not really an "elective" choice if you ask me.  More like choosing the lesser of two evils.

As far as the paper colon, mine was "fragile" by the surgeons standards which accounted for the extra two hours in O.R.  She explained that this was more then likely due to the years of inflammation and steroid use but the steroids can cause this rather quickly, like two weeks I think she said so that would be a few weeks shy of a yearly colonoscopy detecting that.

With the "dealing" with pooping my pants in public, I don't think so, that causes for some serious sanitary and health issues not to mention all of the personal issues.  If my car fails to work when I need it to I take it to a mechanic.  If the mechanic cannot fix it I get a new car or make arrangements to acomplish what I need transportation for.  Same with my colon the mechanics (GI doctors) spent five years trying to fix it with no success so I got rid of it and now use alternate transportation (poop in a bag).  Just because I was not on my death bed at the time of my surgery does not mean that the surgery was "elective", but the best part is after 15 years of symptoms and five years of diagnosis and all kinds of drugs I have my life back and finally have some form of control over my BMs.  If someone wants to say it is elective or I just wasn't able to tough it out and take care of my colon, so be it. I can finally go out without the worry of imminent embarrassment because of this horrible disease.  Also within a month I will be on only one pill a day for my GERD not the 35 a day I was on before.  Elective or not, I am truly cured, no treatment, no symptoms and no risking my life with my medication.  Surgery worked for me and my unique condition, but that doesn't mean it is the cure all for everyone.

John

Posted 6/26/2008 2:13 AM (GMT 0)
Wow guys, you are all so amazing! I am relieved and so thankful to have found this site for support. I guess I'm still trying to learn to cope with this disease even after all these years, but we all are and I know I'm not alone.

Jjc2007- 47 years is quite a while to have this disease, and it sounds like your doing alright. Maybe if you can do it, I can too;) 

I'm just gonna hold on and pray for a cure, or if nothing else....safer meds. I have also learned so much from coming to this forum.

Thanks guys!

Donna

Posted 6/26/2008 2:35 AM (GMT 0)
i think that people look at surgery as giving up, or like it will be the end of the world to wear a bag, but really and truly, i promise you, it is not bad, in fact it's rather convenient!!! i wish i had always had one.
And it's not giving up, i don't want people who choose to have surgery to feel guilty, it's not giving up at all, it's taking control, it's winning, it's literally throwing that nasty old colon in the trash!
Now i am not saying surgery is for everyone and it's not something you should just do immediately after a diagnosis, but i surely would not have gone out pooing in my pants or wearing diapers, that to me is far worse than a bag.
Posted 6/26/2008 5:23 AM (GMT 0)
Sometimes I think back to when I was first diagnosed 12 years ago and wonder how my life would have been different if I'd had surgery back then. Currently I am on 6MP and Humira, meds I had sworn I would not take and I am just praying my rectum does not preforate at the moment. My colon is crystal-clear. I have UC bad enough in my rectum to qualify for surgery. I just am not ready for that big of a step. I am very ill at times, I lose a lot of blood and get weak and feel horrible at least once a week still. Yet somehow I have never missed a single one of my son's Tball games, or any other very important appointment ever in the past 12 years of having this disease. ps- I had two beautiful children while having UC. I have considered surgery but I am frightened that it would turn out bad for me somehow, like I would be some oddity who starts getting fistulas through my remaining intestines or something. I guess that means I am not ready for surgery. If I feel it is necessary then I will do it. Right now I am still hoping a med out there will do the trick and I am willing to wait it out for now.
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