Okay, I thought I had this problem licked - bowel incontinence. Dh's blowouts have been occurring more frequently again. I know it has something to do with when/what he eats. But, what about when you want to go out with friends and get a bite to eat or go to somebody else's house. I'm getting afraid to do this now. Last week we went for a walk out on a dike - about 1/2 hour after eating lunch - and we weren't out 10 minutes when the dam burst. Then it's such a problem getting him all cleaned up out in public. Today, we took a ferry to have lunch with old friends of dh's and we were planning to walk onboard because it costs so much to take a car. But, something in me told me to drive on AND take a provisional bag. Sure enough, lunch was over and he spent 15 minutes in the bathroom and I thought all was well. We walked a short distance to the car and within 5 minutes, TROUBLE. We spent the next 20 minutes cleaning up again in the men's bathroom. I feel very sorry for him when this happens, and particularly today because all his friends were outside the lav waiting for him to come out - very embarrassing. So, long story, but how do you all manage to go anywhere with this problem looming BIG? Do we eat in from now on?
MOTHERT if he can take immodium prior to outtings it may help. i gave mine 1-2 pills prior to leaving thehouse and ALWAYS carried a big purse with wipes and a depend inside. its the norm now i dont think you can avoid whats happening with him now. his friends need to understand the incontinence issues go with this disease and many of us suffer this. it looks like he has a BM after eating. you could try limiting the lunch to after eating leave. and try to get him back home by the half hr if feasible. knowing he could have a bm right after eating could help you make planning a bit better. or take him to the bathroom soon after eating whether he says he needs it or not. sometimes just sitting down on the commode can trigger a response. :) ha. and put him into those plastic sanipants that go over the depends. it contains a lot better than just the depend alone. as it has good elastic around the legs. you live and learn.if you ;havent already read the incontinence threads. its mindblowing:) divvi
moorsb---look for the family restrooms. Sometimes they're marked with multiple signs--man, woman, wheelchair. Asingle facility with a lock on the door.
Yes, I have noticed many places having family restrooms...sometimes hard to find, so you may need to ask where they are. But travelling was not too bad for us this past summer when we stopped at various rest stops on the NYS thruway...found family rest rooms. I was thrilled to find that many stores and restaurants have them too. Doesn't take much to make me happy!
Did your dh have fecal incontinence on your trip? I cannot imagine anyone enjoying a trip that requires you to clean up a grown man who has runny diarrhea from one end of his body to the other in a public restroom. Peeing his pants is one thing, this is quite another problem. I must find a way to ensure that this isn't going to happen or I will not be taking him out in public anymore.
mothert, worst nightmare for sure, we want them to have dignity, they deserve dignity !!!! Have you looked at if it's any particular food causing the reaction, besides medicines. It may not worth looking at an irritable bowl diet ( if there is one) for when you eat out. And when I travel I look ahead for family bathrooms via the internet. I have actually ask my waiter to stand outside the men's room so I can go in with hubby.
Yeah, I'm about to go on the internet to investigate a new diet for him. For sure, fruit, is off the table. His doctor did say that he has a very rapid digestion process and that we need to wait to go anywhere until after he has disposed of what he has just eaten. However, that isn't possible when you're out and away from your home. So, I'll have to work it out.
I have to admit that I'm feeling very resentful that, once again, I'm having to deal with things that I don't want to deal with. I know, I know, get used to it. Most of the time, I go with the flow and try to be positive; but yesterday was really difficult and I just haven't gotten over it yet. Too much uncertainty in my life these days and I guess it scares me - I have to conjur up too much stregth from somewhere. I just want to run away and then what? I'd feel guilty about leaving this man behind.
We all suffer the same situation and it's so good that we have somewhere to go vent and friends who truly understand. I so appreciate this - thank you all.
Mothert I am so understanding of your stress over this, as I too have that fear, having had to deal with this with his Mom when we took care of her.
Isn't the anger awful, the resentment, and once in awhile I even yell at him oh it is so terrible to see the hurt and fear in his eyes, and even the scary anger.
I have been grabbing out for that strength too, and have been trying to get back to my once strong faith in God. Family and friends can only hear it so much.
My husband has had the problem of a BM within 1/2 hour of eating ever since he had GERDS surgery about 10 years ago. I have been giving him 1 Imodium (generic) a day and that seems to help with it not be runny - got so tired of a messy toilet bowl, under seat, etc. The toilet is now cleaner for longer - hate cleaning toilet. And, he is not having to run for a BM within a 1/2 hour unless he eats fried food. I don't fry stuff but when it is burger and fries/onion rings - they are fried.
mothert: First, I respect all these wonderful caregivers that are giving you information on how to handle this new problem you are facing. However, I for one, already know I could faceit, but I could not handle it. This problem with "it is only poop" doesn't fly for me. I had a difficult time when my kids were little taking care of the messes. Now, it is just not going to happen again. That will be placement time for me. I really feel badly about this, but everyone has their limit. Poop is my limit.
Don't feel badly that you are having a difficult time with this..there are others, includidng myself, that would too.
JudithKB - I am with you: and adult in poopy pants is my limit. And, living in a motorhome there is no way I would have room to clean him up. So, like you, that is when placement would come.
How does that work? My dh is stil "with it" most of the time and he would not go quietly to ASL.
And, I keep trying to envision myself in his position, needing somebody to get me through each and every waking moment and clean me up after uncontrollable moments; how would I feel to be placed in a home where nobody knows me or cares about me because I have no bowel control? Seems too harsh for me. I think I'll have another talk with his doc. I went online to see what foods aggravate this issue. His favorites are at the top of the list - dairy (ice cream and lots of it), caffein, and alcohol. I could probably eliminate the dairy and caffein, but the alcohol would be a problem. Maybe the doctor will have to get tough with him. I hate this miserable disease.
I don't think placement over the "poop issue" probably works for most people. All of this is difficult and some can do things others can't. The last two years I probably have not been gone out of my house alone for a total of 4 hours. My dh panics if I am not in his sight.
Our only daughter who lives close has cancer and works and cannot help and we have no one else. I can tell I am getting very tired and I just know the "poop" thing would put me over the edge. For me...the advantage to my dh would be that I could and would visit him with a happy heart knowing he is cared for by professionals. It would not be worth it to my dh or me for me to go over the edge. That would help no one.
I am only trying to be brave and face facts which may or may not happen. Hope I never have to make that decision. I greatly admire those that can do so much I just know I will not be able to do.
One food you want to "test drive" is that loaded with gluten such as bread, cereal, cake, cookies. More and more people are being diagnosed with gluten intolerance. With some people it is just a sensitivity. I am in that group. When I look back, the dr. tried to tell my mother that her "loose" bm's could be due to gluten. She was a big bread eater. Wouldn't change her ways. I have changed my ways and it isn't easy but it sure helped my bathroom issues. I cheat once in a great while but I notice that I can't cheat repeatedly. Gluten-free bread is very expensive, close to $6 a loaf but there are lots of cereals available. You can go all your life with no trouble and have it hit after age 65. Sometimes it is hereditary.
You know, I was diagnosed with gluten intolerance about 10 years ago; my poor body was in such pain and finally a Naturopath asked me if I had ever been tested for gliadins and I said no. My test results came back positive and I was pretty religious about avoiding gluten for 5-6 years and my constant pain (most doctors tried to tell me that I had fibromyalgia) went mostly away. I was then tested again and the sensitivity had gone and I went to town with pizza and sandwiches, etc. for about 6 months. I'm back to eating it sparingly and all is fine; however, I did see my behind and belly expand when I returned to gluten. Anyway, it never effected my bowels that I know of, but, maybe it does for dh.
I had a talk with him this afternoon after visiting the Mayo clinic about the bowel issue and told him that the 3 top food issues were dairy (he loves ice cream and eats tons of it), coffee (he doesn't do much of that) and alcohol (he'd rather die than give up his wine). But, I told him that these items were probably causing him all this grief and he would have to decide to moderate (not that he will remember and he wasn't liking it when I told him, either). I thought of threatening him with placement if he didn't comply with the diet restrictions, but, then I'd have to follow thru, so I didn't do that (I wanted to, though).
Judith, I don't know what I'd do if I couldn't ever leave the house without dh - I think I might consider suicide. Funny, that seems more doable than just running away. Guess either guilt or death - both are hard to face. How far along is your dh? I'm not sure about my dh as he is okay to live with, his memory is just declining more and more and then, this incontinence issue. I don't have to dress him or bathe him and he still knows all of the family members, although he doesn't remember our neighbor's names most of the time. I'm sure as he progresses, placement will be more acceptable to me. Just have to wait and see what the good Lord brings and when. The "poop" issue is almost more than I can handle, though; it just creeps me out.
He is stage 5 and a little six. The VA classified him moderately severe. He can dress himself but I have to tell him what to put on. He has to be told to bath and shave most of the time. His major problems right now is this sleeping 16 to 20 hours a day and doesn't want to do a thing when he is awake. He looks so tired. Also his languge skills are really getting bad.
Like you said in your post, one of his poop problems was when you were out with friends. My dh probably would not agree to be with people. He knows his speech is bad and even around family he rarely says a word. This has even made it bad when just the two of us go out to eat. He does not say a word unless I start the conversation. This was one of the few pleasures I had left and now it seems to be going.
I need to look into respite care for him. I really need to get away from this for awhile. I would just rent a nice hotel room and sleep and read and eat. To tell you the truth I probably have had even less then the 4 hours away from him in two years that I mentioned in my other post, but I didn't think anyone would believe me.
JudithKB, I totally understand why you can’t leave. I can’t leave my DH alone anymore (that started not quite a year ago). I have been able to leave him with our daughters so that I can get out at least a few hours a week. But the last few times he has stayed with one of them, when I get back I get the “evil” look & then he accuses me of “dumping” him. The last few months I have noticed that he has become increasingly dependent on me & like you said about yours, he almost panics if he can’t find me. (we have a 4 bedroom ranch & he still loses me!) My daughter told me that I still need to go out even if he gets upset when I get back (I left for a few hours today & she said he was fine……….until I came back). I know that I need to get out, but sometimes I don’t know if it’s worth the crap he puts me through when I get back.
my dh does not say anything when I leave hm at ADC-he just follows me to the door and looks out the window as I leave like a lost child. I think he wonders each time if I am coming back.When he goes with me it is a constant worry about bathroom issues .We have had to do several clean-ups in public restrooms and they were not pretty! I do not try to take him to the mens room I just take him to the ladies room after looking in and telling whom ever is there that we are coming in. Most are nice about it,a few have been not so nice- (I wished this disease on them).But it is getting harder to take him places too.
My DH still has control of his bowels and bladder but it's inconvient for us to go places because he always feels like he's got to go. If we're in church, at a restaurant , at a play or anything, I have to go with him and stay outside the door because he can't find his way back. It's like having a toddler who always has to go right in the middle of a meal or during the best part of a play...or during a quiet worship time at church. I can only imagine how bad it would be if they mess their pants during those times.
My h still has control of his bowels and bladder also but same as your dh Dazed, it's inconvenient to take him places because he always has to go to the restroom. I'm wondering if having to go all the time is the start of incontinence, in other words a red flag I need to remember, like a oh yes moment.
I'm not sure that it is the beginning of incontinence. It could be an OCD type of behavior. My husband is not incontinent but he needs to visit any restroom he sees. At home and at family's houses he goes in and out of the bathroom. Sometimes he doesn't do anything but walk in and flush the toilet and leave.
Deb, OCD is definitely the biggest problem here. Like your hb, mine is obsessed with finding a bathroom everywhere we go and he will go again immediately after going the first time , he'll do that all day long. Do you ignore him and just let him do it? I have tried to stop him from going 2 min. after he's already gone but to no avail. I wish it didn't get to me but it's driving me nuts.
cricket, Most times I just let him do it. It can drive you crazy especially if you are out. I've even gotten to the point where I will ask him if he needs to go every time we walk past a bathroom. Sometimes he actually says no :)
I did that the last time we were at the Neurologist, I asked him as we passed the restroom if he had to go, he said no. We go in the waiting room and he sits down saying he has to go NOW! He went to the restroom 4 times before we ever got back to the room. I've tried to take him to the grand-kids soccer games....missed the game ( waiting at the porta pot ). Good thing I'm kind of a homebody but this could possibly turn me into a recluse.
That sounds so familiar. I had to take my husband with me to the hospital when my dad was having knee surgery and we spent most of the time walking back and forth from the waiting room to the bathroom. The only time he finally sat still was when I gave him m&ms. He attends daycare 5 days a week, so that is when I get things done. I know how lucky I am that he goes.