Incontinence 81 Responses

After reading all these comments with the surveys over the past few days and noting all the drugs mentioned, I've started to create a data base on Drugs.com of my drugs and drug suggestions I want to research up on. for instance, Tysabri is bloody scary and I don't think I'll go anywhere near it.

I have also requested Drugs.com adds the condition Pouchitus to their ailments so  the data base includes 'us'. I am also going to ask them to include J Pouch as well. I picked this one as it seemed to be pretty straightforward in setting up an account for my needs when I decided to do this on the spur of the moment. We need somewhere a repository/data base on drugs for our problems and reference requirements. I have also noted this morning that any drugs I have listed that have contra-indications, there is a warning sign placed against it and when clicking on it, it gives you a complete run down. For instance, I should not be taking Cipro with my calcium tablet on a morning.

Oh, and  Spunkcat, I've started to follow you because you've been asking good questions and providing good feedback that suits my circumstances. I'm about to do the same with NMGuy

Regarding the Nortriptyline…, if anyone is going to try it—which I highly recommend and urge you to do—would you mind posting here about it….I'm extremely interested and anxious to find out whether anyone else sees such life-changing results as both my docs' patients [he used the word "DRASTIC" to describe how well it worked for them] and I have seen.  I will try again to search online when I have more time than I  did the other day and, if I'm lucky,  will share anything [or post the link] of anything  pertinent that might help to understand the Why's and How's of it.  If I'm really lucky, I might even find some reviews besides!

 

I'm not sure of the actual pharmacology of Nortriptyline but based on the answer my doc gave me is that it's similar to the way an opiate works..., I  was diagnosed with ulcerative colitis some time in the 70s. I'm a recovering drug addict—specifically Opiates, which inevitably cause constipation—there's no way around it..., it's a well-known fact:  'Opiates Do Cause Constipation." that is, unless you have IBS, colitis, a pouch, etc.  Before I was diagnosed, it happened to me.  After the diagnosis, it never happened again— as a matter of fact, I don't know anybody else other than me, who could take it without that side-effect.   Before I became an addict, my doc would prescribe it once in awhile when my arthritis flared up, but would always give me an argument of some sort about side effects or whatever.  I finally told him that the opiates actually put my UC in check—as though I was in remission whenever I'd take them—it was amazing!!  The Nortriptyline works the same way— in fact, I think it works a lot better!  I usually have only 1 bowel movement during the day and 1 immediately before bed.  I no longer have problems during the night where I'd sleep thru and wake up in the morning greeted with an accident.  I never go at night any more.  I still have loose stools, but I never have to sit in the bathroom for hours, until I feel empty, anymore..., now I'm in and out of there quickly!
Hope this gives you the answer you want even though it's not technical.  BTW,  I looked online last night in hopes of giving you a better answer but got too tired to read, however, I did find that, along with its antidepressant-type uses, it's also prescribed for bed wetting and also for smoking cessation.  I do know for a fact that it's a derivative of Amitriptyline, which I was prescribed many years ago for the treatment of pain I had from 2 bulging discs in my upper spine.  I don't remember if it worked though.  Hopefully, anyone who does try the Nortriptyline, will post—I'd love to hear what y'all think.

I have an odd (but effective) process to help empty my pouch.  And my dr has okay'd it.  While on the toilet, after I empty everything in the normal fashion, I put my fist on my belly button and push into my gut.  I'll even use my other hand to push harder.  My visualization is my pouch is like an icing bag that I need to push into in order to empty it.  I keep doing it until I feel completely empty.  And I made sure to tell my Cholerectal surgeon and she said it was fine.

What is the method in which nortriptaline works? How does it help the incontinence?

What is the method in which nortriptaline works? How does it help the incontinence?

I've ALWAYS experienced fecal leakage since surgery (2006)—worse at night. A few times it's happened while around friends..., no warning or urge…,never aware it had even happened until I either caught a 'whiff' or skin burning, or went to urinate and found a "surprise" waiting.  Recently, 3 of my best friends ganged up on me..., trying to talk me into getting out of the house to perhaps meet men my age, who, like me, were widowed or divorced, or to maybe have a similar problem—(they didn't realize that I had no desire to wake up next to a poopy partner any more than I'm sure my partner would)!!  Next thing I know, no thanks to them, I found myself creating a profile on a free, online dating site they wouldn't stop nagging me about!  Anyway, when I told my shrink about it I also told him about my pouch.  He said he wished I had told him about it a long time ago—he claimed he had a few other patients who also had one—going on to say he could help me too since the others saw DRASTDRASTIC results!  He prescribed Nortriptyline, to be taken at bedtime, 25mgs to start.  OMG!  I saw results immediately!  The following month he put me on 50mgs— I can honestly say that it has completely changed my life. I still wear the pad since, although rare, I have had a few very minor accidents.  After another poucher on this site posted about having a bidet, I did a lot  of research on it and purchased one a few months back. That, along with the nortriptyline, have given my life a whole new meaning.   I had every intention of posting about the nortriptyline, but somehow kept getting distracted. Shame on me..., this could have helped some of you not suffer a couple months ago.  BTW, Nortriptyline is actually a derivative of Amitriptyline, another antidepressant (I've experienced no side effects).  It doesn't even  come close to comparing to any results from taking an  antidiarrheal (which has never helped me).  I just hope this can now help others.

I have found some good information on another survey yesterday and I also added several replies of my own with information and assistance. The link is below but if you have problem, click on my name and you should be taken to my profile where it shows the comments I have made.

The other alternative is find the survey email and complete the survey so you get immediate access.

The sacral nerve implant is what I am now researching as it sounds perfect for us.

 

https://www.j-pouch.org/surveys...2#457716058471309402

 I flush my pouch every night before I go to bed.  I fill a 4oz enema bottle with warm water and flush.  I also take 3 Lomotil tablets every night before I go to bed..

Both activities help tremendously.

There is a procedure that might be able to help.  They can implant a sacral nerve stimulator.  It is similar in size and technology to a cardiac pacemaker.  The generator is implanted under the skin on the hip and has wires that run to the nerves that control the anal sphincter.  The electricity supplied to these nerves causes them to clamp down and can help reduce the amount of accidental discharge.  This technology can work for both urine and fecal incontinence.  I have had the device for about 9 months and it has cut my accidents by about 50%.  Definitely ask your doctor about it. 

I suffer from fecal incontinence. Worse at night. Wear pads. Daytime seepage has gotten worse ,j pouch for 23 years. Use pads and barrier creams. I too am frustrated. I feel like I cannot fully evacuate which may contribute to problem.