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Support for dealing with incontinence
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PostPosted: Thu Jul 12, 2018 4:44 pm 
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Location: Dallas, Tx
Hey All,

It has been a little while since my last post (school, life, work, etc. have been crazy), but I would like to try and be more active on the boards. A little while back I was diagnosed with dumping syndrome (aka rapid gastric emptying) following the removal of my gallbladder. Originally I knew I was in for a rocky road until I figured out what foods I could and could not tolerate with no gallbladder, but when things got to a point that no matter what I ate (even very bland foods like crackers) I would be in a lot of pain and I needed to find a bathroom within seconds or I was going to have an accident (which I unfortunately have had happen on multiple occasions) I knew I needed to go back to the doctor. In addition to the dumping syndrome, I have had (and continue to struggle with) a bad history of gastrointestinal ailments. I have had IBS for many years (since about 10 I believe, I am 29 now) and I believe it has only gotten worse since I had my gallbladder removed. I also have acid reflux and GERDS. Needless to say, stomach troubles and I have a long and not so great relationship haha. :roll:

In addition to my stomach issues, I also suffer from urinary incontinence. I have been to a number of urologists and had the gamut of tests run, none of which were very pleasant as many of you know. While I have never been given a clear diagnosis, I assume I suffer from a mix of OAB and incomplete emptying. One doctor suggested she thought it could be neurogenic bladder, but never confirmed the diagnosis. I have had 6 (known) pretty significant concussions so I have always wondered if that had something to do with my bladder problems, but who knows? Sometimes I'll leak a little and other times the floodgates will open. There is a history of bladder problems on both sides of my family (my father has pretty bad OAB and his dad passed away from bladder cancer). I myself have suffered symptoms for quite a while (bedwetting as a child/teen, significant post-void dribbling, and accidents during the day) but they got worse about high school. It has been a long road, but I have managed (originally chained to the bathroom and eventually with disposable pads/underwear). Unfortunately, with the addition of the increasing fecal incontinence from the dumping syndrome and the worsening urinary problems, I have had to make the switch to briefs. It is difficult for me (embarrassment, shame, fear that someone will find out). I am blessed to say that I have a very loving and understanding wife that knows most of the extent of my difficulties (so far I have been able to hide the fecal accidents from her) :oops: , but other than that no one knows. I want to tell friends and family because I think it would ease some stress/anxiety and allow me to get back to living my life how I want to, but it is a tall order :( . I feel like I constantly have this knot in the pit of my stomach. I also suffer from major depression, anxiety, and insomnia (they are all interrelated I am convinced). This post is way longer than I intended it to be, but I just needed to get some things off my chest among similarly afflicted and understanding folks, so thank you in advance for the indulgence.

I do have one question for those of you who deal with gastrointestinal issues, what do you do for stomach pain? The doctor has prescribed me an anti-spasmatic called dicyclomine which I take a few times a day usually. I also go through a ton of Pepto-bismol caplets (can't stand the taste of the liquid stuff :| ) and I take Imodium when needed. Despite all this, I still deal with almost constant stomach pain. There are times when it isn't as bad, but it seems to be a persistent thing in one form or another. All that said, I was wondering what you all do for any pain you may experience? I know peppermint and ginger are good and I do consume tea with those ingredients sometimes. I am also going to give Nullo a try for the bowel accidents, but I heard it has the side effect of constipation which may not be a bad thing sometimes in my case. Anyways, I have written a novel and I apologize. I appreciate everyone here and all the support and advice you all provide. I hope everyone has a great rest of their week and enjoys the WC finals! :)

_________________
"It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.”
- Rose Kennedy


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PostPosted: Thu Jul 12, 2018 6:38 pm 
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You have been through the medical mill. I would say welcome, but you need and deserve more than that. My GI issue is different than yours, which may make my advice useless. But here goes anyway. I have gastroparesis; my GI system is partially paralyzed. I live on a rather strict diet, a list of medications, and suppositories and enemas. Have any of your doctors discussed your diet with you? High-fat foods, such as French fries, may be forbidden. Without competent medical advice, deciding what foods to avoid is like shooting in the dark. To deal with the incontinence, you might consider gradually developing an inventory of washable, cloth diapers and plastic pants. Good luck and keep us informed.


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PostPosted: Thu Jul 12, 2018 6:44 pm 
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I neglected to mention GI pain. The common analgesics for pain, especially the opiates, all cause constipation. If you must deal with GI dumping syndrome, you might welcome this. Opiates, however, in my case, actually cause pain and can aggravate my situation. My guess is that if you get your diet in order, the pain should (I hope) subside.


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PostPosted: Thu Jul 12, 2018 8:25 pm 
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Location: Dallas, Tx
Patrick wrote:
You have been through the medical mill. I would say welcome, but you need and deserve more than that. My GI issue is different than yours, which may make my advice useless. But here goes anyway. I have gastroparesis; my GI system is partially paralyzed. I live on a rather strict diet, a list of medications, and suppositories and enemas. Have any of your doctors discussed your diet with you? High-fat foods, such as French fries, may be forbidden. Without competent medical advice, deciding what foods to avoid is like shooting in the dark. To deal with the incontinence, you might consider gradually developing an inventory of washable, cloth diapers and plastic pants. Good luck and keep us informed.


Hey Patrick,

Thank you for your reply and your advice. I have read your posts and your issues don't sound like a picnic either, although your posts seems like you handle it well and your encouragement and advice to others is admirable. I truly can't wait for a day when medical science has an answer to all of this stuff and we don't have to live with it. Until then it is nice to have sites like this to come to and get advice and encouragement. To your point about diet, you are absolutely right! It took me a little while to figure out my "trigger" foods, but I think I have pinpointed most of them at this point. It is usually the typical suspects (e.g. milk, super greasy foods, salads, and roughage type fruits and vegetables). Surprisingly, what seems to give me the most trouble is irregular eating. If I go a while without eating (i.e. skip a meal) then as soon as I eat ANYTHING (even super bland foods like a cracker) I am usually going to have a bad time (stomach cramps, urgency, nausea, etc.). I try to stay on top of eating at regular intervals, but I could definitely be better about it. I am a college instructor and I am finishing up work on my PhD so I am bad about getting so busy that I forget to eat something. The doctor did give me this medicine that I mix with water and drink before I eat breakfast. It is supposed to help bind things, but sometimes even it will make me sick :roll:

As per the pain killers, I have definitely tried them in the past. I have had a number of really painful kidney stones that required ER visits where they gave me pain medication (opiates) to deal with the pain while the little sucker moved its way through my urethra. Also, when I went in for pain related to my gallbladder it took them 5 days to figure out what was wrong so I was subjected to a number of tests and on a number of pain medication through that. All that being said, I have never tried them as a regular treatment option. Your advice on starting an inventory of diapers and plastic pants is a good call. I have tried a number of briefs trying to find which one works best for me. Unfortunately I seem to be in between a size Medium and size Large at the moment. The mediums don't quite fit right in most briefs, but the larges engulf me (it comes up almost between my belly button and my pecs :lol: ) so I am still trying to find something that works. The large size is good for sleeping though as it provides enough protection and I don't have to be as discrete. I have been wanting to try cloth diapers but I honestly don't know where to start, and I know this sounds very dumb but part of me is worried about what my wife would think about cloth diapers. She has been fantastic and very supportive but I still try to handle things as discretely as I can. With cloth I just have this (probably unfounded) fear and embarrassment that it would be too much what with the laundry and what not. Maybe I am wrong in that regard. I know many people have a lot of success with cloth diapers, especially at night since I tend to sleep on my side. I do have two pairs of GaryWear active briefs that I wear over my disposables as an extra layer of protection, but I don't own any true plastic pants. Perhaps I should look into getting some, I hear they are particularly good at controlling fecal odor in the case of an accident. Anyways, thank you again for taking the time to reply. As I mentioned in my original post, I hope to be more active around here. Maybe I can even help out someone else in a similar situation. Take care, Patrick!

_________________
"It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.”
- Rose Kennedy


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PostPosted: Thu Jul 12, 2018 11:25 pm 
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Posts: 103
northshore has a great line of both pull ups and briefs or diapers what ever you want to call them they also are great about helping with guideing a person to what they need and sending out samples they have their own brand line i dont want to over step on this one but i think you should tell your wife about whats going on for one if you dont take a med that helps with the smell she will smell any accidents you have while you are out or even at home reason 2 if you ever needed clean up help she would know and you could have a plan for team work during any outings that you needed to leave in a hurry


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PostPosted: Thu Jul 12, 2018 11:33 pm 
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Location: Ohio
Sorry to hear about all your issues @ dallasinc. It sounds like you have been run through the wringer, so to speak. In addition to my urinary incontinence, I have recently developed fecal incontinence (from once every few weeks to daily in a matter of a few months). Fortunately for me, it almost always happens first thing in the morning, so it doesn't usually affect my later-in-the-day activities.

As it appears this is something that you will be dealing with a while (if not forever) I would suggest confiding in your wife. Eventually, she will find out anyway, and maybe she will be very supportive and understanding, which will make it easier for you to deal with. While I don't share all the gory details with my wife, she does know that I have fecal incon issues and is very empathetic about it. I do try to be discrete when dealing with it, changing, cleaning up, etc, but don't try to hide the fact. You may be pleasantly surprised... I've found also that Nullo, while not completely removing the odor, does seem to reduce it and make clean up a little less "pungent." I usually wear a Crinklz with a cloth contour diaper over it and plastic pants to bed, so mornings are relatively odor free.

Have you tried the ConfiDry 24/7s yet? I am in the same boat as you, in that I'm between a M & L in most brands. The Dry 24/7 Medium is sized a bit larger than most - kind of midway between M & L and fits me well. I default to large NS Supremes or BetterDry/Crinklz for overnight and at times when discretion is not important to me, but like the Dry 24/7s when I want to be a little more discrete or am concerned about a more snug fit.

Hope this helps!

_________________
"When you die, on your deathbed, you will receive total consciousness. So I got that goin' for me, which is nice."


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PostPosted: Fri Jul 13, 2018 8:16 am 
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On really bad days, when my wife is home, she will assist me with my washing and changing and laundry. When she is unable to assist me, we hire a caregiver for a day or two. She agrees that a wet diaper is preferable to a wet bed, so there's no problem with that issue. She has seen me doubled over in pain, helpless to do anything for myself, and she has watched urologists and physical therapists work on me, so she understands what is needed. I hope your wife/partner is as understanding.


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PostPosted: Fri Jul 13, 2018 2:04 pm 
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Location: Dallas, Tx
mattwp wrote:
northshore has a great line of both pull ups and briefs or diapers what ever you want to call them they also are great about helping with guideing a person to what they need and sending out samples they have their own brand line i dont want to over step on this one but i think you should tell your wife about whats going on for one if you dont take a med that helps with the smell she will smell any accidents you have while you are out or even at home reason 2 if you ever needed clean up help she would know and you could have a plan for team work during any outings that you needed to leave in a hurry


Hey Matt,

Thank you for your reply and your counsel. I am very familiar with Northshore (don't remember where I originally heard about them, maybe here?) as that is where I get most of my supplies now. Their staff has always been great about suggesting products and sending samples when they can. Unfortunately, as many of us know, choosing the correct diaper can be quite the "trial and error" process, particularly as needs channge. As per your advice on letting my wife know about my bowel issues, I appreciate the counsel and I don't think you are overstepping at all. You make great points and you are probably correct on both counts. I know I should probably tell her, but I am just very embarrassed :oops: I know that is my own hang up, and ultimately I think she would be understanding, it's just something I am going to have to come to terms with first. Hopefully this happens before an accident forces my hand. I did order some Nullo tablets and I am going to give them a try so hopefully they help with any odor from accidents. I am just trying to take things day by day. Going through a bit of a rough patch lately concerning my depression and so I am trying not to let the incontinence pile on. I appreciate your advice and I hope you have a great weekend!

Best,

Dallas

_________________
"It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.”
- Rose Kennedy


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PostPosted: Fri Jul 13, 2018 2:33 pm 
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Location: Dallas, Tx
5bugles wrote:
Sorry to hear about all your issues @ dallasinc. It sounds like you have been run through the wringer, so to speak. In addition to my urinary incontinence, I have recently developed fecal incontinence (from once every few weeks to daily in a matter of a few months). Fortunately for me, it almost always happens first thing in the morning, so it doesn't usually affect my later-in-the-day activities.

As it appears this is something that you will be dealing with a while (if not forever) I would suggest confiding in your wife. Eventually, she will find out anyway, and maybe she will be very supportive and understanding, which will make it easier for you to deal with. While I don't share all the gory details with my wife, she does know that I have fecal incon issues and is very empathetic about it. I do try to be discrete when dealing with it, changing, cleaning up, etc, but don't try to hide the fact. You may be pleasantly surprised... I've found also that Nullo, while not completely removing the odor, does seem to reduce it and make clean up a little less "pungent." I usually wear a Crinklz with a cloth contour diaper over it and plastic pants to bed, so mornings are relatively odor free.

Have you tried the ConfiDry 24/7s yet? I am in the same boat as you, in that I'm between a M & L in most brands. The Dry 24/7 Medium is sized a bit larger than most - kind of midway between M & L and fits me well. I default to large NS Supremes or BetterDry/Crinklz for overnight and at times when discretion is not important to me, but like the Dry 24/7s when I want to be a little more discrete or am concerned about a more snug fit.

Hope this helps!


Hey Bugles,

Thank you for reaching out. I am sorry to hear that it sounds like we are in similar situations. I can empathize with your morning bowel issues. I definitely have morning urgency as well, particularly after breakfast. Sometimes I have enough time to get to a bathroom and undress, but other times I do not. I barely made it this morning before I had an accident :o Cleaning up after a bowel accident is no fun at all (as I am sure you are aware) so I am always happy when I can make it to a toilet first #winning! :lol: As I mentioned to Matt up above, you are both probably on point in terms of me needing to tell my wife about my bowel issues. She obviously knows about all of my stomach problems, but I haven't shared my bowel incontinence with anyone except my gastroenterologist so far. I have managed to take care of my accidents either when she wasn't around (accident at work; Not fun) or discretely enough that she either doesn't know or hasn't said anything. Something about talking about bowel incontinence is just so much more difficult for me than my urinary incontinence :( I know I need to get over that embarrassment and tell her, so all I can say is I am working on it. Hopefully I can have that conversation with her before an accident forces my hand :oops:

As per the Dry 24/7, I have tried them and I really liked how they work. I received a size small as a sample and they were just a bit too small so I am wondering if the medium would be perfect? The medicine that the doctor had me on for my depression caused me to gain some weight (I am historically a pretty skinny guy and I have had trouble putting on weight in the past) so my sizing is all off now. Mediums used to be perfect in almost all briefs, but now I am getting to where they don't tape right and I barely have any protection above my anatomy. This usually means a leak at night. In fact, I wore a medium northshore supreme lite brief to bed last night and I woke up this morning about 4AM soaked! :roll: Luckily, I was sleeping on a bed mat just in case, but I still need to find a better solution to the size problem. Perhaps the Medium Dry 24/7 is the answer! I have also used the BetterDry and I like them as well, very absorbent and seem to work well at night, although they swell a good amount so daytime use can be tricky. I believe there was a thread on just this issue the other day. I have also wanted to look into cloth diapers but I don't really know where to start and as mentioned above, there are some other personal considerations there. The plastic pants are also a good suggestion as I hear they really help with concealing some of the odor of a bowel accident, at least until you can get somewhere to change. I will look into where to find a good set of those. Is there some that you suggest? I have two pairs of GaryWear active briefs that I will wear over my diaper now, but they are not the best with odor. They are more or less a last line of defense between an accident (urine or bowel) and my clothes. Anyways, thank you again for your advice and encouragement. I hope you have a great weekend!

Best,

Dallas

_________________
"It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.”
- Rose Kennedy


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PostPosted: Fri Jul 13, 2018 2:40 pm 
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Patrick wrote:
On really bad days, when my wife is home, she will assist me with my washing and changing and laundry. When she is unable to assist me, we hire a caregiver for a day or two. She agrees that a wet diaper is preferable to a wet bed, so there's no problem with that issue. She has seen me doubled over in pain, helpless to do anything for myself, and she has watched urologists and physical therapists work on me, so she understands what is needed. I hope your wife/partner is as understanding.


Hey Patrick,

It's fantastic to hear that your wife is so supportive and helpful, we truly don't deserve them do we? :) My wife has been excellent and very understanding with my urinary incontinence. She even offered to go into Walgreens and buy me some briefs when were on vacation in Austin and I didn't have any diapers with me (dumb I know). I had an accident and I was kind of desperate, definitely not the highlight of the trip :lol: While I do try to keep things mostly to myself, I think ultimately she would be very understanding if I told her of the bowel issues. She definitely has seen me in similar situations to the one you described above, doubling over in pain and not knowing what to do :( As I mentioned to Matt and Bugles above, I am working on getting over the embarrassment and telling her. I know it seems silly but I am working on it. I hope you are having a good Friday and that you have a great weekend!

Best,

Dallas

_________________
"It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.”
- Rose Kennedy


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