No, not at all. I probably structured my sentence improperly. 🧐

I have had stool leakage for about a year, some weeks better than others. Physical therapy helped for a bit, but now it’s worse again. I have a referral to gastrointestinal at Mayo, but of course they don’t have any openings until the new schedule in 2020. But I do have the option of calling in every Monday to see if there is an opening. It sucks!

Yes, I am lactose intolerant and drink almond milk and stay off other dairy, sometimes when the Celiac is under control you can tolerate lactose, but not me. Up until now I have only had one very small incident with my bowels, so I am amazed. Time will tell if it stays that way. I have a lot of exercises to do and I’m sure that must be helping, besides eating high fiber foods I am going to introduce……slowly, flax meal, per PT. I’m just waiting until I get back from NY visiting family, in case it upsets the apple cart.
I also visited my Psychiatrist for Med update and he said “ you do not have dementia “. I do forget a lot of things but I think I need to 1- get more sleep, and 2- try to be more organized and have less fires in the oven.
It’s good to know about the Digestive Advantage, hadn’t heard of it.
Emy

@emyliander Lactose can be sneaky, there are things that have lactose in them that you would never expect. That’s why if I go out to dinner I will often take 2 digestive advantage pills, just to be on the safe side. It does seem odd that on vacation you would have no problems since you do have some at home. I know someone who actually has problems with some water! They purchase certain brands of bottled water that they know are not a problem.

I’m glad your psychiatrist reassured you that you don’t have dementia. That’s such a scary diagnosis. I too tend to be forgetful about certain things, and I also do not get nearly enough sleep due to having about six bathroom calls a night, plus some nights I have anxiety producing things on my mind. Last night I lay awake for about three hours. 🥺

I am sure if you keep up the good work of doing the exercises and eating high fiber foods you will be fine, at least most of the time. I will be interested in hearing if things continue to go well, I hope they do.
JK

@kzsolheid I am sure if you do call on Mondays you will get in sooner. I always have them put me on a wait list and almost always do get in sooner.

Having gone through stool leakage myself I know very well the difficulties it can cause. I did have pelvic floor PT but what helped the most was discovering that I had become lactose intolerant. My anal sphincter is very weak and was severely damaged during the birth of my first child. He was big and should have been caesarean but the doctor substituting for mine was idiot. So it is still damaged but now that I stay away from lactose the very soft stools are not nearly as much of a problem.

I will be very interested in hearing what the doctor at Mayo says.
JK

@kzsolheid I get Harvard Health newsletter and they just had an article about this. I'm not sure what type of physical therapy you had, but a pelvic floor specialist might help. Also, in the newsletter they referenced various treatments including electrical stimulation, etc., which may increase muscle tone or somehow help. Keep trying – maybe it can be made better. Have you seen a neurologist, too, or the gastroenterologist, etc.? Just some questions for you to think about.

Well today I had my last PFPT and it has gone well. In the past 4 weeks I have had 2 very small bowel incidents, rather than daily. I am so pleased I can hardly believe it. There is so much information included with the therapy, I would recommend it for anyone with bowel incontinence. I’m going to make sure my doctors know about it so they will suggest it to other patients. Thank you for the help you give us. Emy.

This was for JK also. Thanks.

@emyliander My PFPT told me to not skip more than two days or it will really set you back. I have to admit I have skipped much more than that because for some of the exercises I have to be on my side and after fracturing my femur I couldn't lie on my side. I do see that I have had a setback but it's not total. I have been resuming the exercises now.
I know, I could have done some of the exercises but I was in so much overall discomfort that I did not.
JK

Sorry to hear about your fracture, I can see that would set you back. One of the exercises was for relaxation, as she said being tense could make things worse. I had long suspected that. Also having a lot of fiber in your food is recommended, it seemed to help me to switch from cold cereal to gluten free oatmeal, with fruit and nuts in it. I’m sure I will continue to learn about other foods that will benefit me. It is important to keep up the exercises, and also easy to let it slide for various reasons, I do it myself.
Thanks for writing. Emy.

Reply was for JK.

@emyliander I generally have oatmeal about three or four times a week, with some nuts and some berries, generally blueberries.
Relaxing is definitely helpful too. Soft bowel movements do make it worse but occasionally even when not soft a very small “marble” will leak out.
JK