Elimination Issues

[Joc-42]

I am a 74 yr old female diagnosed in 2011. This is my first post. My biggest issue with MS now is bowel incontinence. It sometimes is associated with diet and stress but other times not. I do have nerve damage in my spine that affects this. I will go for weeks between episodes without problems. But, it reoccurs and may be everyday for weeks. Some doctors say this is a part of MS for some. Little is written about it. I don't really like to post something of this nature, but I am a nurse and thankfully that helps. My issues are usually in the night and early mornings. Any help would be appreciated.

[Jesmcd2 CommunityAmbassador]

Hi Joc-42 welcome to our forum ☺ l just want to say hello as l don't have this issue as of yet. But l do know that others do and will pass you off to their very capable hands.😊 Always remember tho we are not your Drs.

As you can tell we post pretty much about anything and everything here. Our main objective here is to give each other support! And that takes everyone☺

~Helpfull Hint~ If you put an @ in front of the person who your addressing they will get a notice from you. IE.... @ jesmcd2 * With No Spaces*

Jes🌠

[agate]

@joc-42, without getting too specific, I've had bowel problems for years. I've had MS since 1978-80. I live a fairly isolated life, living alone and not going out much, and that helps, but that's not possible or easy for many people, who want to keep up a social life. My episodes are definitely worse when I'm under stress. I should mention that I've been a vegetarian for 30 years, and eat a fairly high-fiber diet. I sometimes move my bowels 6-8 times a day but see no cause for concern because I've been that way for years, and I'm just glad not to suffer from constipation. Soap and water will clean up just about anything. I clean up and try to forget about it and am just glad nobody has ever had to witness one of my "problems." Or if they've been aware of any leakage I was having, they very kindly didn't mention it. I wear pads all the time, and those do help.

[erash]

starlight5 i think Joc-42 is having bowel/fecal incontinence? Perhaps u were thinking urinary (certainly more common with MS).

@joc-42 have they ruled our other possible causes? Inflammatory bowel diseases, celiac, directly due to a spinal issue? Have you had a work up by GI ?

Have u been able to correlate with any dietary intake or meds that might cause?

The timing (night) makes me wonder about the cause. I assume it's unexpected episodes but wonder what treatment has been recommended? I'm thinking an AT HOUR OF SLEEP Imodium could lead to constipation problems...or if there already is constipation, is this an overflow problem?

[Joc-42 in reply to erash]

I have had the testing and have control issues impart because of damage in child birth in addition to lower spin nerve endings.

[Hidden]

Joc-42 et al. Cleanser: Aloe Vesta cleansing foam is great. As an athlete I always ate well, so when MS hit my digestive system/bowels, I knew it had to be MS. The Docs have not been helpful at all for me. I even went the hospital after 2 weeks with no evacuation. I now use Polethene Glycol for constipation, play with the amounts. I use I 1/2 T one day and then nothing the next, if this stopped working and I had to try another dosage. Then when it started to be the 'other' I had to skip. You may write me at [e-mail] for privacy purposes.

[goatgal]

Joc-42 I am an almost 77 year old female, also living alone. My diet is much the same as yours. I also occasionally suffer from bowel incontinence and in the last six months have seen a change in the previous pattern of my bowel movements. It began with an inability to recognize the signal for a movement, evolved into a very slow, sluggish pattern of several small movements during the day (although sometimes I would wake at night with the need to evacuate my bowel), and for the last two months or so has become a signal of urgency: NOW or else. Fortunately, when I don't make it in time, every thing is washable. My old normal has apparently changed, after a transitional period, to a new normal. My neurologist told me this is a combination of age and MS.

I too always wear a pad, but on the occasions when I go out, I am always aware that humiliation awaits me. I talked about it with my neurologist and have kept notes for her so we can talk again in April when I see her next. Since I eat a high fiber diet, that isn't the solution, and constipation is certainly not my problem. I have just begun an eleven week course (Optimal Living with MS), four hours each session. We are scheduled to have one session on bowel, bladder and sexual dysfunction. I will share my learnings with the group.

[Joc-42]

Thank you so much for your response. To me, the note keeping is a good idea. And, I have a good disinfectant that I can use in the wash and bathroom clean up. Sorry, but I do not live alone, and my husband is a huge help.

[WAshingtongirl]

Joc-42 , I am late reading and responding to this. You've gotten great replies and recommendations here. I also have bowel and bladder issues associated with MS. My neuro (at the MS Clinic here) is working with my gastroenterologist to help with what she calls an IBS-type of condition due to a neurogenic bowel/bladder system. She even recommended the type of medication she preferred my gastro try.

I rarely have full-on fecal incontinence, though I did soil myself (my pad) when I met a friend for lunch two months ago-and I had NO clue I'd done so.. 😔 I also have intermittent problems when the constipation gets really bad and the 'oily liquid' from my 3 stool softeners and Amitiza (I take 2-24mcg daily) seems to slip around the stools and drips out. (I'm sorry if I just grossed everyone out!) I've also been awakened at night for bowel movements, and quite often poop when I think I am on the toilet to urinate. I have no idea/sensation when that happens.

I've been on the Amatiza for a year now and use MiraLax along with the daily stool softeners. The Amatiza has helped, but I've still had problems and the chronic constipation has somehow affected my bladder stimulator during those bouts. My gastro wants to try Linzess now and see if that works better than the Amatiza.

I carry individually wrapped antiseptic towelettes (like what you use for a clean-catch urinalysis) with me always (purse, pockets) and I have them in a basket on the back of my toilet. I order them online by the case. Bowel leakage can also lead to UTIs. So I am extremely careful.

I hope your neuro or gastro are able to help with your particular problem. 💕Dawn

[Amore55]

I do not suffer from your problems, in fact, just the opposite, insane constipation. So, I can't offer any advice but I can offer support. I will be praying that you find a resolution to your difficulties. Kelly xx

[Fancy1959]

Joc-42, it's Fancy19599. I would count as a blessing to start with that your incontinence is just at night or first thing in the morning. If it was unpredictable it would be a lot more to have it happen midday when you are out and about. When I'm having bladder and bowel issues I fall back to my Depends. They do a good job containing bladder and bowel issues.

Learn to listen to your body. When I have to have a bowel minutes prior I would start with the series of passing gas small farts ( for lack of a more precise term). I also would have some slight pressure start to build and as soon as that started plus the other I would make a beeline to the bathroom. Learn again to listen to your body and see what happens to you and your body just before before your bowel movement hits.

When it hits me it is also pretty much inspells. I understand your embarrassment and dilemma. The adult disposable underwear are no fun to wear day in and day out because they're so hot and no matter what they say they are bulky and show anger bit. I use regular underwear until it starts to hit and then you're usually embarrassed at this point. I buy only a certain brand of underwar, one that has passed the test so to speak, I think you understand what I mean here.

I guess by now you have figured out that you can ask pretty much any question in this chat room and you will get replies to it. This chat room is for some of the kindest, most caring, and compassionate people you have ever met. I hope you become an active part of this chat room. As a nurse I believe you and have a lot to offer this chat room. You are part of our extended family now. Please take care of yourself and I hope to hear from you soon. Until then I would like you to remember that together we are stronger! Fancy 1959.

[Joc-42 in reply to Fancy1959]

Fancy1959. Thanks so much for your insights. It does not just happen at night, but when we are out to the grocery or other shopping, in the car etc.. you get my point. I have Depends, extra underwear, pads, gloves, disposable bags,and gloves available in the car, purse or a special carrying bag to put all these items in if I go out with my girlfriends.. they understand! We have three couple friends and two of the men and me in Depends. At this age(70’s) most people have something. We are very close and have been friends since 1982. What a blessing. Have a good day, and could you tell me what brand underwear that you have found.

[alliepoirier]

@Joc-42-Hi Joc, it's Alliepoirier, I read your posts and all of the great responses and suggestions from 'the family' .... you are not alone with this. I went to my neuro last week, and he asked me how I was doing with my incontinence, and although I have been having issues with it .. I said, "oh no problem" ... I wanted to talk to him about my increasing bowel incontinence, which is very similar to what you described. It is something I find very difficult to talk about, which is so ridiculous ... but, in the past months I have been having some very strange numb/tingly feeling in my very lower back going down my thighs, it doesnt hurt, or cramp, it is just the strangest odd feeling. I was diagnosed in 2009. I suspect I have some nerve MS things going on causing the odd sensations in my spine. Anyways, in the past months, I have been having the bowel thing. It does come in cycles, and I have suffered some embarrassing moments. I get no 'notice' or signal that I need to run for the bathroom, until it is too late, or close to being too late. I noticed that this happens mostly in the early morning, for a couple of hours. It comes and goes. I can be fine for weeks, and then it comes back. I try to plan accordingly, pads, and always know where the nearest rest rooms are. I have learned that all major stores, grocery, department, etc., have public restrooms ... I can tell you where every public restroom is, anywhere, anytime :). I do not let it interfere with my life. I guess I am too stubborn to stop doing what I love, to give in over that. One thing I have noticed, is the bowel thing happens, if I happen to have ice cream....go figure, I love ice cream, but I really think it is a contributor, oh, and chocolate .... that seems cruel to me, that ice cream and chocolate would be my enemy .... I love them both. I keep a gallon of bleach at the ready, and lots of lysol, to be sure everything is really clean. My husband is a huge help, he is someone I can actually talk to about all of this, he is not judgemental, and I dont get embarrassed so I feel blessed about that. I work full time, thank god, I am able to work from home now. One of the reasons I dont go into the office anymore, is this exact issue. Bowel incontence at work was terribly embarrassing, and I knew it was time to either go out on disability or request a reasonable accomodation to be able to continue to do the work I not only love, but am very good at. The stress is a contributor too. If I have a tough couple days at work, I do see the bowel incontenance increase ... I have no advice, except this ... live your life, and continue to do all of the things you love. I have become somewhat isolated, but I do make sure to get outside everyday, no matter what the weather is like. As you can see from all of the posts from our group, you can talk about anything safely with us. Although I have no advice to offer, I can offer you support and hope you have a very good day, and if you dont have Netflix, get it. You can always watch a good movie, and forget about MS for a while ....

[Gemmasully]

I didn't realize this is a MS sign I have always has issues with bowels of having to use a laxative on some days. But today is my 4th day of not having a bowel movement but I do not have any pain or bloating....the amount of food I have consumed I curious to ware it all went as I am not bloated or have pain 🤔

[Joc-42]

Now I use a low dose of Miralax but that’s not fool proof. Constipation and lack of control seems to come and go intermittently.