Having a problem

RoseC

Hello friends,

I don't post much any more but was a frequent poster a few years ago.

I've run into a problem and am hoping you have some suggestions. For info, I had chemo and radiation back in 2008. Have been having off and on problems with the runs since then, mostly off except for one year where it was very bad. Just tonight with no warning, I had what I thought was gas and it turned out to be a very different thing all together. Runny, runs down my leg. No warning.

Has anyone had this type of thing happen so far out from treatment? I'm a bit concerned.

No doctor appointments coming up in the near future. I most probably will schedule one. This is quite disconcerting. Nothing I ate recently should have done this. I'm quite concerned. Will follow up with the doctor and let you know what happens.

Thanks for any input,

RoseC

 

Lorikat

Rose - I'm not as far out as

Rose - I'm not as far out as you are, but going on four years.  I will do great for months and then "SURPRISE"....  happened a couple of days ago!  I think maybe I eat something that irritates my well radiated bowels!  Let me know if you find out different,,,

 

Phoebesnow

Lorikat said:

Rose - I'm not as far out as

Rose - I'm not as far out as you are, but going on four years.  I will do great for months and then "SURPRISE"....  happened a couple of days ago!  I think maybe I eat something that irritates my well radiated bowels!  Let me know if you find out different,,,

 

Suprises

About once a year.  Horrible usually at work!

sephie

happens to me

rose....i was treated in 2009....it still happens to me.... i always carry extra underwear in case this happens..... exercise does increase the possibility.....no treatment that i know of....just have to handle it among other side effects......sephie

mp327

Rose

You and I were both treated in 2008.  I have had a few episode such as this, usually brought on by eating foods that are high in fat or after vigorous exercise (which can be a real problem since I am a runner).  Radiation proctitis or enteritis can be the cause of this.  This condition actually has two variations.  The first will occur shortly after treatment.  Unfortunately, the other kind does not present itself until years after treatment.  I've experienced both.  Last fall, I had several accidents and got quite frustrated.  These days, I am managing okay.  I just know now that at the slightest urge, I need to bolt to the nearest bathroom and never, ever trust that the urge is just gas.

I have searched this topic often and have yet to find any type of successful treatment or cure, I'm sorry to say.  Talk to your doctor and see what he/she says.  If you come away with any good information, I would appreciate knowing.  Thanks!

Martha 

RoseC

sephie said:

happens to me

rose....i was treated in 2009....it still happens to me.... i always carry extra underwear in case this happens..... exercise does increase the possibility.....no treatment that i know of....just have to handle it among other side effects......sephie

Thanks

Thanks everyone,

I've had several accidents in the past but they've always had at least some kind of advance warning, like I knew something was wrong and then bam. But this time, no warning at all. Kinda scary.

Phoebe, what do you do when it happens at work? That's something that makes me so anxious. The folks at work are really nice but I dread having that kind of episode at work. Well, life is life I guess and we do what we have to do. No more problems since last night.

Thanks very much to all for your support. I don't post much anymore but I'm on every day reading and hoping for the best for everyone. I really really really really am so very glad for this forum.

 

Rose

 

jcruz

Rose

This happened to me over 2 days last summer.  Horrifying.  I was so glad I was at home.  There was no way to predict it.  I was doing a lot of washing.  I was then just under 2 years out.  I took immodium on the second day and it tapered off.  I thought I must have had a bug because I hadn't eaten anything different.   I think it's a good thing to talk about with your Dr. although I didn't think of doing that.

Good luck to you

Janet

RoseC

jcruz said:

Rose

This happened to me over 2 days last summer.  Horrifying.  I was so glad I was at home.  There was no way to predict it.  I was doing a lot of washing.  I was then just under 2 years out.  I took immodium on the second day and it tapered off.  I thought I must have had a bug because I hadn't eaten anything different.   I think it's a good thing to talk about with your Dr. although I didn't think of doing that.

Good luck to you

Janet

Thanks Janet

It's so disconcerting! (to say the least)   I take one immodium every day and for the most part, that controls things. Not last night - but usually, haha.

I'm glad we're here for each other to understand the things others can't.

On another note, I was visiting with my mom today, who's in a rehab. 81 years old. Lovely lady. And she had much the same issue today. Doesn't matter who you are or what age you are, this kind of thing is very much 'not so nice' (can't think of exactly the right word, but you get my drift - as you put it, 'horrifying', sounds just about right).

Thanks Janet.

Phoebesnow

RoseC said:

Thanks Janet

It's so disconcerting! (to say the least)   I take one immodium every day and for the most part, that controls things. Not last night - but usually, haha.

I'm glad we're here for each other to understand the things others can't.

On another note, I was visiting with my mom today, who's in a rehab. 81 years old. Lovely lady. And she had much the same issue today. Doesn't matter who you are or what age you are, this kind of thing is very much 'not so nice' (can't think of exactly the right word, but you get my drift - as you put it, 'horrifying', sounds just about right).

Thanks Janet.

Suprises

LOL!  I go home.  There is no way I could unravel that mess  in anyplace but my own home.  I have 2 big black plastic bags that I put over my car seat.  I grit my teeth and drive. 

RoseC

Phoebesnow said:

Suprises

LOL!  I go home.  There is no way I could unravel that mess  in anyplace but my own home.  I have 2 big black plastic bags that I put over my car seat.  I grit my teeth and drive. 

Good idea about the garbage

Good idea about the plastic bags for the car seat! Think I'll put a couple in my car.

judyv3

Nasty Surprises!

It has been 16 months since I finished treatment.  For about 8 months post treatment, things were fine for me.  I am constipated so I have to take Miralax everyday in order to go.  Since things were going well, I started introducing different foods and that's when issues began.  

I've had a couple of accidents, two at night which woke me up from a sound sleep, stood up and yuk.  Then, once thinking I had gas (as Martha said - never think it's just gas!).  I have a "potty bag" that comes to work with me.  It has toilet paper, aquaphor and my trick (that I'm sure people would think I'm crazy) cloth baby diapers.  I always wear a folded up diaper inside my underwear.  My skin is so sensitive that it just helps, and kept the mess of the accident contained.  I don't wear tightfitting clothes so no one can see any lumps or bumps and personally, after what I've been through, I simply don't care.

I have a cousin who has IBS and she has had accidents too, so we are not alone.  The only time it really upsets me is when I think about getting older (I'm 54) and think this will likely get worse and harder to deal with, but I try not to think too far ahead.  My colorectal doc asks at every visit if I've had accidents.  This last visit was the first time I had to say yes and he said "well it happens".  So there you go.

Good luck!

Judy 

Ouch_Ouch_Ouch

judyv3 said:

Nasty Surprises!

It has been 16 months since I finished treatment.  For about 8 months post treatment, things were fine for me.  I am constipated so I have to take Miralax everyday in order to go.  Since things were going well, I started introducing different foods and that's when issues began.  

I've had a couple of accidents, two at night which woke me up from a sound sleep, stood up and yuk.  Then, once thinking I had gas (as Martha said - never think it's just gas!).  I have a "potty bag" that comes to work with me.  It has toilet paper, aquaphor and my trick (that I'm sure people would think I'm crazy) cloth baby diapers.  I always wear a folded up diaper inside my underwear.  My skin is so sensitive that it just helps, and kept the mess of the accident contained.  I don't wear tightfitting clothes so no one can see any lumps or bumps and personally, after what I've been through, I simply don't care.

I have a cousin who has IBS and she has had accidents too, so we are not alone.  The only time it really upsets me is when I think about getting older (I'm 54) and think this will likely get worse and harder to deal with, but I try not to think too far ahead.  My colorectal doc asks at every visit if I've had accidents.  This last visit was the first time I had to say yes and he said "well it happens".  So there you go.

Good luck!

Judy 

An alternative.

At my last colo-rectal visit when I told him that BM and urine accidents are becoming more frequent rather than less (scar tissue forming on the inner sphincter making it weaker), he gave me literature about the implantation of a neural stimulator. It's like a TENS unit, only on the inside. The signals stimulate the inner sphincter muscle to increase its tone and keep stuff in place. The wireless control (like a little air conditioner control) relaxes the tone when it's time to expell. Battery changes for the implant are every 10 years. It is supposedly easy to extract without complications if need be.

I am not emthusiastic about a surgery (same-day, I believe), but I'm not wild about incontinence, either. Maybe I'll think about it for the not-to-distant future. The brand my CR doc uses is made by Medtronic.

(No word on what happens if one looses the wireless control like I am apt to do. Maybe I'd blow up!)

Ouch_Ouch_Ouch

judyv3 said:

Nasty Surprises!

It has been 16 months since I finished treatment.  For about 8 months post treatment, things were fine for me.  I am constipated so I have to take Miralax everyday in order to go.  Since things were going well, I started introducing different foods and that's when issues began.  

I've had a couple of accidents, two at night which woke me up from a sound sleep, stood up and yuk.  Then, once thinking I had gas (as Martha said - never think it's just gas!).  I have a "potty bag" that comes to work with me.  It has toilet paper, aquaphor and my trick (that I'm sure people would think I'm crazy) cloth baby diapers.  I always wear a folded up diaper inside my underwear.  My skin is so sensitive that it just helps, and kept the mess of the accident contained.  I don't wear tightfitting clothes so no one can see any lumps or bumps and personally, after what I've been through, I simply don't care.

I have a cousin who has IBS and she has had accidents too, so we are not alone.  The only time it really upsets me is when I think about getting older (I'm 54) and think this will likely get worse and harder to deal with, but I try not to think too far ahead.  My colorectal doc asks at every visit if I've had accidents.  This last visit was the first time I had to say yes and he said "well it happens".  So there you go.

Good luck!

Judy 

Motility problems discussed.

This page on the California Pacific Medical Center site discusses various GI motility issues, including incontinence. Various therapies are outlined about which I will ask my C-R surgeon. There's only a brief paragraph about the Medtronic neural stimulator - apparently still under research when this was written. The impotant take-away thought from is this:

"It is important that patients understand that fecal incontinence is not a normal aspect of aging."

http://www.cpmc.org/services/gi/services/lowergut.html

jcruz

Ouch_Ouch_Ouch said:

An alternative.

At my last colo-rectal visit when I told him that BM and urine accidents are becoming more frequent rather than less (scar tissue forming on the inner sphincter making it weaker), he gave me literature about the implantation of a neural stimulator. It's like a TENS unit, only on the inside. The signals stimulate the inner sphincter muscle to increase its tone and keep stuff in place. The wireless control (like a little air conditioner control) relaxes the tone when it's time to expell. Battery changes for the implant are every 10 years. It is supposedly easy to extract without complications if need be.

I am not emthusiastic about a surgery (same-day, I believe), but I'm not wild about incontinence, either. Maybe I'll think about it for the not-to-distant future. The brand my CR doc uses is made by Medtronic.

(No word on what happens if one looses the wireless control like I am apt to do. Maybe I'd blow up!)

an alternative

I know about someone (friend of a friend) who has Chron's disease and was at the point of considering a colostomy.  She chose this implant to try and has been really happy with it.  It was a success for her.