Accidents

Liftmeup

Hi all.  I was diagnosed in Feb of 2013.  Finished all the usual treatments at the end of April 2013.  After 4 months or so, I was doing well.  Totally off Immodium.  Things were going well.  Even able to tolerate an ocassional glass of wine, but only one!  The food was hit and miss, but quickly found my "triggers".  So, when I avoid alcohol, fried foods, buttery sauces and chocolate, I do ok.   Around last July, I started having random "accidents".  Never had them before (with the exception of the time during treatment when things were quite urgent).  Started taking more Immodium, and now advanced to 3 Lomotil a day.  I started keeping a journal, and the majority of my accidents are while sleeping or in the morning.  Needless to say, this has me quite concerned for my future.  Not being comfortable about when and where this might happen.  My doctor has suggested the "Inter-stim".  Has anyone had this?  It is a device implanted under the skin with a wire that delivers a light current to the sacral nerve to help with incontinence.  Studies show it has helped some people.  If this is what happens.... the tissue is changing - still, and has gotten weaker, I don't know what other options I would have but to try this.

 

Any thoughts?

 

PS - I've been a "lurker" for quite some time, but this is my first post!

 

Liftmeup

z

Liftmeup

Welcome, I still have accidents and I completed tx on 6-30-09.  Most the time its because I walk the dog and then I immediatley must go, I suppose due to the exercise.  Your still healing and I know in the beginning I had lots of accidents,  but now as long as I listen to my body I do well.  I think you will get better over time, of course I'm not a dr. I just play one on tv.  (Just Kidding).  I wish you well, Lori.

judyv3

Accidents

I finished treatment in January 2014.  I did not have any accidents during treatment or for quite some time after.  Now, I have had a couple.  Both occurred while I was asleep, waking up with a start to discover this.  I, too, am afraid for what the future holds as I age and things get weaker.  This wasn't happening as of my last exam by the colo-rectal doc, I will talk to him about it when I have my next appointment.  Unfortunately, I just think it is one of those things.

 

Judy

pem

judyv3 said:

Accidents

I finished treatment in January 2014.  I did not have any accidents during treatment or for quite some time after.  Now, I have had a couple.  Both occurred while I was asleep, waking up with a start to discover this.  I, too, am afraid for what the future holds as I age and things get weaker.  This wasn't happening as of my last exam by the colo-rectal doc, I will talk to him about it when I have my next appointment.  Unfortunately, I just think it is one of those things.

 

Judy

Accidents

hello....i will be 2 years out and have had a few accidents as well. first one was during treatment and just didn't make the bathroom and second time was just about 6 months ago. I didn't even know it happened. I was so upset but greatful that I was driving with my sister at the time who was very supportive about the whole ordeal.  Ever since treatment ended I have been doing like kegals in that area. Not sure if spelled that right. I lay on my back , raise my knees up and then lift abdomen up and down and squeeze that area each time I come up. I do about 20 of them every night. I figured if it helps the other end when us women have babies , why not work for that area. When I have urgency I can actually hold it there and I can feel it's just right there And make it to washroom. I just squeeze and pray my clench holds. Sorry for the graphics here , but I'm not very good with words.   God bless you !  Pem

mp327

Accidents

I experienced some during treatment and for a short time after I was out of treatment.  Then I went for years without experiencing any.  I am now almost 6 1/2 years out of treatment and strangely, a few months ago, I had a bout of several accidents.  I have no explanation as to why these happened, but fortunately, they stopped.  They very well could have been diet-related and I feel they most likely were.  Some people have problems with greasy and fried foods going right through them.  It sounds like you have identified some of your trigger foods and are avoiding them.  I have never heard of the device you mentioned, but it sounds like a type of electrical stim, which is used commonly in physical therapy to help with muscle control.  If you decide to try the inter-stim, please let us know about it and if it is helping you.  I wish you all the very best.

Martha

qv62

Liftmeup

I unfortunately have several accidents a week, due to many surgeries I was having them long before treatment. My colo-rectal surgeon recently mentioned something to me saying once I was a year or so out if I wanted she could surgically do an implant to help my sphincter muscles. I actually didn't digest all the info since the thought of another surgery had me peeling myself off the ceiling at the time so I'm not sure if it is the same device you are referencing however when I see her next month I will inquire and pass on any info I get

RoseC

Hi

I was going through a year, about 3 years out from treatment, where I had a LOT of problems with the runs and very urgent bowel movements. Had a couple of small accidents and one very large one. Eeks. Changing to a diet where I ate only soluble fiber first helped a great deal. That and Immodium. I see that you're already on Lomotil, but try the diet with soluble fiber only first at any meal. Might help. Hope it does. There's a book that I've suggested in the past that helped a lot (I'm not a sponsor of it or anything, just that it helped me so much I like to let folks know about it) - Heather Van Vorous' 'The First Year - IBS Diet'. It available on Amazon and probably many other places as well. Wishing you luck. I feel your pain - it's such an awful problem to have.

Ouch_Ouch_Ouch

Three notes.

Liftmeup - I assume that you are talking about stool incontinence, not urinary incontinence. Maybe this story will help you in some way, anyhow. My husband and I were the legal guardians for had a multiply-handicapped young man who was born with spina bifida at a high thorasic level, so had no bowel or bladder control. He functioned at a 5 year old level, but with 30 years of experience. His urologist, a specialist in SB, conducted a clinical trial with a neural root stimulator to see if increased neural stimulation would help his patients stay dry between catheterizations. The poor little guy was scared, but bravely participated. His bladder did retain measureably more urine, but his urinary sphincter was damaged and couldn't establish more tone. This trial took place in an OR with sedation, and didn't hurt Eric in any way. If you try this, but it doesn't work, it can always be removed.

pem -  I took a course of physical rehabilitation for cancer patients. The PTs helped me cut anal pain by about a half by using pelvic floor excercises on a large gym ball. I sit atop the ball and rotate my hips in very small, highly controlled circles, one way then the next. While on the ball, I also do very small moves similar to miniature sit-ups, but with all the muscle movements centered on the peritoneum. I emphasize that the movements are very, very small and well controlled. I'm not very tall, so I have a 55cm diameter ball that cost $20.

RoseC - The FODMAP diet supposedly has excellent results for IBS persons. It's complex and not entirely intuitive, but with planning with a dietician trained on FODMAP, you can go through the initial withdrawal phase and then the secondary phase where you add back foods to discover what's bothering you. The diet was researched and developed by the Monash University in Australia. They have a free smart phone app for download to help you with the food rules. The blog by Kate Scarlata is very helpful as she has a lot of expertise and created charts you can download.
* http://www.med.monash.edu/cecs/gastro/fodmap/
* http://fodmapmonash.blogspot.com.au/search?updated-min=2014-01-01T00:00:00-08:00&updated-max=2015-01-01T00:00:00-08:00&max-results=14
* http://blog.katescarlata.com/