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4 years after reversal and still can't control my bowel movements successfully.

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Posted 1/11/2012 11:33 PM (GMT 0)
Hope some body out there can at least put my mind to rest please....I had a stage 4 colon cancer four years ago, had the bag for 3 months then a reversal.....I really breezed through the operations and feel really blessed and pain free,  BUT 4 years later I still have either constipation or very loose and many times a day motions which leaves me totally drained and feeling weak.   By the following day I have bounced back and feel on top of the world again.  But I can't help worrying that everything is still ok.   I had my 3 year colonoscopy check up and came through with flying colours so could it may be something that I eat or drink that triggers the  "running" side of things.

Thank you everyone for this wonderful column, it has given me so much help and taken a lot of the worry away over the past years.

Life Scar

Posted 1/11/2012 11:41 PM (GMT 0)
Do you keep a food log? That might help you figure out if a food seems to be triggering your issues. How often does the "running" happen?

Some common food culprits are issues w/dairy and fructose. The lactose intolerance is well known, the fructose less so (and it's complicated, because the issue is food that has more fructose than glucose, so things like apples and pears are worse than say berries.... not obvious at all). Of course, things like onions and beans can also be a problem....

Have you talked to a gi doctor about the problems you're having? Do you have IBS?

Hope you figure it out!
Posted 1/12/2012 6:50 PM (GMT 0)
My ostomy was taken down in November. Sometimes with constipation it helps to use the warm water spray that a bidet seat can provide. In Korea, since they eat more rice, it's a common solution to use a bidet seat to loosen things up. I'm in the US, and notice it's helpful too for my standard American diet. It's a little strange to me now to go from emptying a bag every so often, to now using my "natural" plumbing. I had the ostomy for twenty months while they decided what to do with me.

Post Edited (Terry5683) : 1/12/2012 11:54:55 AM (GMT-7)

Posted 1/13/2012 2:53 AM (GMT 0)
Thank you Terry...it's always good to hear other members remedies. I can imagine how hard it must have been for you to adjust to "normal" after 20 months. How is it all going now with Diarrehea, or are you lucky enough not to get it?
Posted 1/13/2012 2:56 AM (GMT 0)
Thanks Bluegrass, I try to keep a log on what I consume but don't always remember to. It could have been Lemon Merangue pie that I just love.
Dr just says that with a big op like that you can't expect everything to work normally again. ;(
Posted 1/13/2012 1:20 PM (GMT 0)
Well, maybe you won't be normal again, but you can still try to work with what you've got to improve quality of life.

I can see where the sugar in the pie might have been an issue....the rest of it would seem OK (or is there dairy?) I forgot to ask about artificial sweeteners, did you eat any of those? They can be awful.
Posted 1/13/2012 11:25 PM (GMT 0)
Yes, I tend to agree that the sugar pie was the culprit there! I have been working with the changes by taking a laxative (prune Juice) when constipated and "Gastro Stop" when I'm running ;) ......".Grateful" is one of my favourite words to be given a 2nd chance at life and I never complain about the changes is my bowel habits but curious to see if it is a "normal" part of ostomey recovery. Artificial sweeteners are not included in my diet and dairy only with my cereal in the mornings.
Once again thank you for your advice and so good to hear that you are fit and healthy after all you have been through, although I really feel it changes our outlook on life to feel much more appreciation for what we have.
Posted 1/14/2012 12:25 AM (GMT 0)

lifescar said...

although I really feel it changes our outlook on life to feel much more appreciation for what we have.

I don't really like this way of thinking. People always have this approach, well it could be worse, or this could have happened. You can't always think this way, this is short changing yourself.

It's like, if someone loses an arm....oh well, at least I have the other one.

Or, someone in a wheelchair. .....oh well, at least I can move around.

someone in a wheelchair and mentally handicapped, oh well, at least I can still breathe.

The point of all this, is this disease sucks, the fact that you had to lose your colon to this sucks, your situation however improved SUCKS (compared to before you were sick).

How you were when you were healthy before was beautiful, now it sucks.

I tend to be more realist than positive or negative.

disclaimer: please don't take offense at this post. This is just an opinion.

Post Edited (Somedude) : 1/13/2012 6:17:36 PM (GMT-7)

Posted 1/14/2012 9:03 AM (GMT 0)
No offence taken Somedude, BUT....this is the way I feel, I even notice that I do things totally different than I used to, like enjoying simple pleasures that were once taken for granted.........such as my children, grandchildren, outings, laughing because I WANT to laugh and not because it is expected that I should laugh. My other point being that I was NEVER in pain or sick before having part of my colon removed, it was the inconvenience of too many bowel motions at unconvenient times. Now when I realise just how close to death I could have been it makes me so very grateful that I decided to go to the Dr and get his opinion on what was happening to my body.
I have always been a very positive person and still am.

Good luck with your issues.
Posted 1/14/2012 11:22 PM (GMT 0)
Somedude, I think both can be true -- the disease totally sucks, having an ostomy was not my first choice, and I am very grateful.

For me the issue is entitlement .... I don't actually think I am inherently entitled to two arms or a working colon or the ability to walk.... these are things that most people have, but usually take for granted.... so yes, if you lose something in there, well it can make you aware of the things you still have.

I know that at most times in history and in plenty of places in the world today, I would have died from my disease..... whole lot of people have died from fevers, diarrhea, infections, etc..... so what I'm grateful for is all the people who came before me and figured out how to do these surgeries and such so that not only am I not dead, but I have quality of life back.... so yes, a lot of thing suck, but a lot of people are on the side of trying to make them suck less for others.... and I think that's worth my gratitude.

What bothers me is when people say they are grateful for their illness.... I am never grateful for that, although I am grateful for the perspective it's given me (but I would have preferred to get that perspective in another way and would have politely declined had I had a choice on whether to have ibd in the first place).

There are some very big questions about how to make sense of an illness that all of us have to grapple with -- why me? why is life so unfair and how am I going to deal with it? It's very hard, and what I wrote here is just how I'm dealing these days..... you have to figure out what works for you; I don't think there's one right way...
Posted 1/14/2012 11:52 PM (GMT 0)

blueglass said...
. I don't actually think I am inherently entitled to two arms or a working colon or the ability to walk....



What bothers me is when people say they are grateful for their illness.... I am never grateful for that,.


Yes you are. you were conceived like that.

Oh man, I know what you mean. Didn't I see a sticky post from admin about reasons to be grateful for their illness..... f'ing disgusting.

Oh oh, there's another good one, the latest one... 3 sacrifices you refuse to make for your illness, it's on the front page. The dude talks about his love for mountain biking... He had to give that up because of his problem......but hey, he can still be a dad to his kid. WELL of course he can still be a dad, HE WAS ONE BEFORE THE F.... illness.

You know why those posts exist bluegrass? Because people always try to downplay or go around their disease, trying to see the positive aspects of what is left of their life.

If people were angry and depressed etc, there would be much more pressure on the media on the world for developing more effective treatments or cure. People view these illnesses as part of life and we go on with what we can like sheeps. Oh in 50 years a cure comes along for something.

How fast they developed a vaccine for H1N1 when it was a pandemic. Too bad IBD is not contagious, we would have a cure already. But we won't because people sit quietly, taking their asacol and predinsone like a good little human, and make up posts like grateful for their diseases....lunatics man, lunatics.
Posted 1/15/2012 12:28 AM (GMT 0)
Sorry bluegrass, seems like I've stirred some sort of hornets nest here. It wasn't my intention but I think sometimes certain people need to vent off some anger that they carry and maybe this forum is helping in some way.
Posted 1/15/2012 12:33 AM (GMT 0)

lifescar said...
Sorry bluegrass, seems like I've stirred some sort of hornets nest here. It wasn't my intention but I think sometimes certain people need to vent off some anger that they carry and maybe this forum is helping in some way.

Lol sorry for hijacking your thread, and actually, you may be right, it does help to vent anger related to my UC disease. smilewinkgrin
Posted 1/15/2012 12:49 AM (GMT 0)
:) You are more than welcome Somedude....I know how it feels after you "vent" we all need to sometime or other.

Enjoy the rest of your life!!!

Cheers
lifescar
Posted 1/15/2012 3:03 AM (GMT 0)
Lifescar, no apologies necessary, this is interesting.

Somedude, going to go out on a limb here and guess that you are a lot younger than me. I'm not saying that to do one of those annoying older people thing and claim greater experience etc.... and if I'm wrong, well, reflects on me....

But our contexts may be different, in that a lot of my peers have worse things than I have, and some have died.... I really feel for the younger people who have these awful diseases when all their peers seem so healthy, and don't know how to deal w/a sick person.

It's hard for me to say everyone is entitled to working organs all the time..... for how long? Does that mean we should all live forever? I've watched my best friend from h.s. become paralyzed from MS, seen cancer take down other friends, know people w/Alzheimers, etc....

But there's a whole lot to be angry about in terms of health care, research, etc on all these diseases, and you remind me of good points.....
Posted 1/15/2012 3:08 AM (GMT 0)

blueglass said...
Lifescar, no apologies necessary, this is interesting.

Somedude, going to go out on a limb here and guess that you are a lot younger than me. I'm not saying that to do one of those annoying older people thing and claim greater experience etc.... and if I'm wrong, well, reflects on me....

But our contexts may be different, in that a lot of my peers have worse things than I have, and some have died.... I really feel for the younger people who have these awful diseases when all their peers seem so healthy, and don't know how to deal w/a sick person.

It's hard for me to say everyone is entitled to working organs all the time..... for how long? Does that mean we should all live forever? I've watched my best friend from h.s. become paralyzed from MS, seen cancer take down other friends, know people w/Alzheimers, etc....

But there's a whole lot to be angry about in terms of health care, research, etc on all these diseases, and you remind me of good points.....

Yeah, I'm 31 years old. I'm angry because this impacts my career, my social life, my fitness life, my general well being. And the health care gives asacol and remicade, then tells me to run along now.

Post Edited (Somedude) : 1/14/2012 8:52:41 PM (GMT-7)

Posted 1/15/2012 3:50 AM (GMT 0)
Well bluegrass I'm a very young 67 years old and feel like I have really been blessed with a 2nd go at life so am fitting as much in as possible!! No good complaining about what you can't do anymore but make the most of what you can do.......One really helpful tip is to be as positive as possible and try not to let those "negative" thoughts creep in as our life is as good as we are prepared to let it. Anger on the other hand is just like a cancer, it just eats away at you.
Posted 1/15/2012 11:50 AM (GMT 0)
such an interesting thread by the way
somedude how old are you, you seem to be around my generation era :) that suxs that you have cancer thats the most unfair ilness in the world but you cant let it ruin your life. When i had my surgery it COMPLETLY CHANGED my view on life i learned toembrace every little thing some people (friends) are annoyed by it my ex-boyfriend today told me how he's gonna by mea diamond braclet because he may possibly be on the ellen show for biusness puropuses but any way i said to him what am i gonna do with a diamond i dont want that i told hime i want a regina spektor table (regina spektor is a russian singer BEAUTIFUL) but anyway he was like you need to be shot and blah blah blah im thinking beacuse i dont want a diamond i use to be very material listic kinda am still but not to the extent i enjoy so many small things now! like snow animals ,moving on my own idkwheni had an epidural and couldnt move from my chest down like my boobs down for 2 days lifebecame so real to even think this could be permanate but im also a female and we are very emotional ...i made a website and you should read it or look at it whatever its called www.myostomyconfidence.webs.com
things in ife affect certian people in life do you havecolon cancer ...well whatever it is i think its affected you in a negitive way somewhat dont get me wrong YOUR SUPPER FUNNY on some of the things you post it makes me laugh but when it comes to stuff like this it seems as if you have anger which is ok. imjust rambling my intention is NOT to offend you because i think your funny :) -JACKIE <333
Posted 1/15/2012 2:23 PM (GMT 0)
Another thing I didn't say -- I don't necessarily think people are entitled to health, but I do think people are entitled to things that promote health -- e.g good health care, clean air/water, healthy food, safe neighborhoods, etc. I try to reserve my anger to those things, because those are things that humans can control (although it's very hard for one person to make a difference alone there...). It's just not my doctors fault that I am sick.... they are trying to help me, and they are frustrated by this disease too.

IBD is a very complex disease, and finding treatments is not at all like finding flu vaccines.... the cause of the flu is clear -- a virus invades cells. With IBD, there are all kinds of genes and environmental factors to sort out. My anger about IBD is that so much of the research is funded by drug companies, and so we get drugs. Things like fecal transplants or dietary changes won't make any money for anyone, so it's hard to get funding to study them.

But the "it's not fair that I have this" line just doesn't stick for me.... just look at the world....you have people dying in wars, dying of starvation, not having access to schools to even learn to read and write, etc..... when I look at what's not fair, well, I come out pretty well on a lot of measures. Widen the circle of who you compare yourself to, and things might look different....

Another thing that's helped me is to let myself feel grief for my losses..... this has sometimes been hard. I am more comfortable with anger than with grief (suspect that might be true for you too, Somedude....). But grief is connecting, makes me more compassionate, whereas anger (aimed incorrectly) does not improve my situation and just makes me feel worse (although when there's a specific target, as when I complained to patient advocacy about something that should not have happened, then my anger was appropriate and helpful).
Posted 1/15/2012 4:09 PM (GMT 0)

Jackie_0mg said...
such an interesting thread by the way
somedude how old are you, you seem to be around my generation era :) that suxs that you have cancer thats the most unfair ilness in the world but you cant let it ruin your life. When i had my surgery it COMPLETLY CHANGED my view on life i learned toembrace every little thing some people (friends) are annoyed by it my ex-boyfriend today told me how he's gonna by mea diamond braclet because he may possibly be on the ellen show for biusness puropuses but any way i said to him what am i gonna do with a diamond i dont want that i told hime i want a regina spektor table (regina spektor is a russian singer BEAUTIFUL) but anyway he was like you need to be shot and blah blah blah im thinking beacuse i dont want a diamond i use to be very material listic kinda am still but not to the extent i enjoy so many small things now! like snow animals ,moving on my own idkwheni had an epidural and couldnt move from my chest down like my boobs down for 2 days lifebecame so real to even think this could be permanate but im also a female and we are very emotional ...i made a website and you should read it or look at it whatever its called www.myostomyconfidence.webs.com
things in ife affect certian people in life do you havecolon cancer ...well whatever it is i think its affected you in a negitive way somewhat dont get me wrong YOUR SUPPER FUNNY on some of the things you post it makes me laugh but when it comes to stuff like this it seems as if you have anger which is ok. imjust rambling my intention is NOT to offend you because i think your funny :) -JACKIE <333

Heh, I don't have cancer, I have ulcerative colitis.
Posted 1/16/2012 2:29 AM (GMT 0)
I had my colon cancer operation two years ago. The surgeon removed about 3 inches of the colon just above the colon. In April I had the illeostomy reversed. I had the usual problems of diarrhea and constipation, but I also had to pee whenever I stood up. A pair of diaper type underwear solved the messy problem. I still wear the underwear every day.

I could not readily shut off a bowel movement because the pucker string nerve did not work. I started to take Vesicare for the incontinence problem but it caused constipation. I then started to take a heaping tablespoon of Metamucil type (I use the WalMart brand) of fiber every night. This has stabilized my bowel movement problems pretty good. It is still nice to always be close to a toilet. I have gone out fishing for up to 4 hours without problems. Everything works pretty good.

Last December I had my second post-op colonoscopy and when I got home the pee problem was back. He must have moved my bladder close to the rectum or something. The results of the colonoscopy were however, good.

I recommend a tablespoon of Metamucil or the WalMart or Walgreen equivalents before bedtime. I don't think when you take it is important. You will still have diarrhea once in a while and a badly soiled underwear or worse, but for me it is acceptable and doesn't slow down my activities very much. I do not watch what I eat and eat about anything.

Wayne
Posted 1/16/2012 7:16 AM (GMT 0)
Hi Wayne, thanks for all your info it is always good to hear what others are going through after their ops. I'll get some Metamucil and give it a go. I'm pretty good on the peeing side thankfully but with the BMs, like you I always make sure I know where the toilets are when going out because sometimes you only have a matter of a few seconds before it just releases and can prove quite a problem if you aren't prepared. As for the constipation, I've found over the past few days that a full glass of Prune juice works wonders. :) I find it really hard to watch everything I eat but try to steer clear of sugars when possible.

Cheers and good health!
lifescar
Posted 1/16/2012 12:48 PM (GMT 0)
It appears to me that the fiber helps to control both constipation and diarrhea. I have to watch the sugar for diabetic reasons as well as weight gain.
Posted 1/16/2012 1:54 PM (GMT 0)

lifescar said...
Hi Wayne, thanks for all your info it is always good to hear what others are going through after their ops. I'll get some Metamucil and give it a go. I'm pretty good on the peeing side thankfully but with the BMs, like you I always make sure I know where the toilets are when going out because sometimes you only have a matter of a few seconds before it just releases and can prove quite a problem if you aren't prepared. As for the constipation, I've found over the past few days that a full glass of Prune juice works wonders. :) I find it really hard to watch everything I eat but try to steer clear of sugars when possible.

Cheers and good health!
lifescar

 

I think you should inquire about having the whole operation to have a J pouch. You shouldn't have to deal with urgencies and such. The point of the J pouch operation is to eradicate urgency along with the other UC issues.

 

People don't have J pouch operations to continue running to the washroom like they did in their sick UC days.

Posted 1/16/2012 2:11 PM (GMT 0)
Somedude, they had cancer not UC.

But I have to say, lifescar and judway, that what you have now sounds a lot like what those of us who have Crohn's and Ulcerative colitis lived with with our diseases. I had an ostomy to stop running to the bathroom all the time (along w/a host of other symptoms I had).... so, I think Somedude has a point, in that there are also surgeries that can give you relief from these symptoms. But I can also see where you might prefer the status quo to more surgery.

Wayne, the peeing thing sounds awful. I hope it's only temporary after the colonoscopy.
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