www.incontinentsupport.org

Hi,

This might be TMI, but I'm not sure what counts as TMI on an incontinence forum. As I'm new to this whole thing, my standards are obviously not calibrated as of yet. Also, sorry if this is the wrong forum. This didn't seem to fit anywhere specifically.

So, to start off with my situation before getting into the questions part of this. I'm 24, male, and have two disabilities that combine to be a really awful combination. First and most unrelated to this forum, I'm blind. In addition, I have what appears to be a combination of ulcerative colitis and IBS-D as of the last diagnosis. I am otherwise in average health.

My symptoms manifest as abdominal pain and diarrhea/urgency. I can go from feeling perfectly fine to urgently needing a bathroom in under 30 seconds, and there are no warning signs. It used to mostly be mornings and I could mostly schedule around it, but I lost that part of it some time ago and now it's just unpredictable. When a flare starts, I will need a bathroom anywhere from once an hour to once every 10-20 minutes for an in determinant period and with little to almost no warning. I have tried most of the medication options available to me. The only thing that seems to be a sure-fire guarantee is doing a completely liquid diet 2 or 3 days in advance of any important life events I absolutely can't miss.

Manageable? Yes, by itself, sort of. But the blindness means no quick ways to find a bathroom, as well as no quick ways to navigate a bathroom. Holding it for any period is painful. It is the nature of blindness that I am at the mercy of the U.S.'s very poor public transit system.

I finally admitted to myself that something more needed to be done. The only reason I haven't had an incident is because I have been staying at home and we have two bathrooms, so typically one is always available. I don't want to travel and as soon as anyone starts telling me we need to drive for more than 10 or 15 minutes, I start getting nervous. Why I didn't see this sooner is beyond me: it just sort of snuck up on me. Given that my symptoms are within about 6 inches of fecal incontinence, I finally decided that it was time to try diapers. My plan is to wear them out of the house, as it's pretty well-handled at home. The purpose of this thread is to generally get any advice anyone has. The internet is full of information on blindness, but not so full of information on how to deal with fecal incontinence. Everything but this forum assumes I have a caretaker. I don't need one at all, thank you very much. SO here I am.

Anyway, to get to the point. I know that I need fitted briefs and I've ordered samples already. This is by no means leaking; when I have an incident it will be, well, a full load. I know about and received Nullo today and plan to begin taking it shortly. I know that only plastic backed is going to provide good odor containment and that I should add plastic pants for better odor control on top of that. I think that all the supplies I need are coming with my samples. I've read the diaper primer on this site. I'm pretty sure my samples include all the brands that are good for fecal: dry 24/7, Wellness Superio, Abena. Beyond that, I don't know anything much. Specific questions follow, but anything anyone can suggest generally is appreciated. If it seems like I have a handle on what I'm doing, telling me that is also helpful. I'm one of those people who goes way overboard in preparing for disaster, and this situation is basically the perfect one to trigger that.

Anyway:

What about wetting? I'm obviously going to have a 4-tape diaper and plastic pants on and it's obviously going to be hard to get them off and such. Is it a necessarily bad idea to just wet? My philosophy is that this is about making my life more convenient and that feces is way grosser. But I'm curious how people deal with this or if it's a bad idea for some reason I haven't thought of.

Are there products I can take and/or insert into the diaper to deal with fecal enzymes? It seems like this should exist, but I haven't been able to find anything.

What do I need for a diaper rash? Any specific products? Can anyone tell me which active ingredients are important so I can comparison shop?

How do diapers compare to a colostomy? I don't think that's an option in my case, but it may be.

What about changing in public? Any tips for this?

And now for the most TMI part of this post, and the one which I could find no answers for at all, anywhere: what about multiple bowel movements into one diaper and/or wearing for an hour or so after defecation? I want to do things like attend meetings, the public transits can take an hour if you're in a very good location for it, and I'm going every 10-20 minutes. Unpleasant, but I figure I can get over the psychological part of it pretty quickly, assuming Nullo works out.

Anyway, thanks for your help in advance, and sorry that this turned out to be a wall of text.

Valthrin, not tmi at all. And let ke say you read and write perfectly for being blind! I've only ever used a colostomy bag once, and the adhesive/seal was less than tolerable for me. Premium plastic diapers have always been my preference (though I may be somewhat biased for them too).

It seems like you already have a good grasp of the basics. Finding the exact right diaper for you is a bunch if trial and error, and practice too. Just try them all, and try them again.

You are also right about needing plastic diapers, and a diaper cover. Plastic or vinal covers are best for smells for sure, but you could also consider PUL which does a decent enough job, and lasts a lot longer (plus in my opinion is much more comfortable to wear).

As for wetting, most all diapers can handle wetting better than fecal containment. It will add a factor for getting your skin to adapt to the new ph..., and could make you develop a few more rashes than otherwise- at least until your skin adapts at least. (This can take a year or more).

There really isn't anything fir the enzymes since everyone's will be different. But, I've found that "triple diaper cream" can help the most for healing a rash. It is a prescription med though. Short of that, any other kind of "cream" will help to heal rashes. On the other hand, it is also best to prevent rashes too. Any good "ointment" will work good for this. Note the differences here. (Ie, such as desitin original ointment versus desitin creamy). Apply the cream first and get it to absorb into the skin, next apply the ointment to create a protective barrier.

For changing in public, just find a decent handicap stall and change as needed. Bring a backpack or bag of some sort to carry a couple of spare diapers in, as well as any other supplies, wipes, etc. If there is no bathroom trash can then you can put your used diaper in a ziploc bag until you do find a trash can later.

As for waiting an hour after a bowel movement to change, this shouldn't be too big of a problem so long as you are using the nullo. That might be pushing it a bit and inviting rashes for you at first though. As long as the bm isn't too big or you're messy for too long, your diaper should be able to handle a couple of them no problem.

Again though, this will all involve a lot of trial and error for you. Just be ready to deal with the error part. And good luck.

Thanks. Suffice it to say that I will be doing the error part at home. Also getting over the psychological effects of this decision. Fortunately, everyone in the family is supportive.
I'm actually a programmer with a CS degree and spent most of the time getting it living completely alone, believe it or not. I'm not willing to link to projects yet as I'm trying to keep this anonymous. I haven't yet decided if I'm going to tell everyone, but I have considered doing so just to get over the psychological issues quickly. Twitter is a great way to make sure everyone knows, and then you're over the whole hiding it aspect (yes, I know that that counts as TMI in that context. But I'm not sure I care). But for now I'm trying to keep this separate enough that someone who Googles me isn't going to just find it, though I've probably already said enough that someone who happens to know me and also happens to be here could identify me. I don't consider that likely. Everyone I know knows I have these problems. Easiest to tell people why you might cancel on them before you cancel on them, or so I figure it.

I consider blindness to be just about nothing, and the only reason I'm even bringing it up here is that it's the combination that causes this to be an issue that's bad enough that I'm turning to trying diapers. In truth, I could see me trying them even if I were sighted. But it probably would have taken me 4 or 5 more years to admit to myself that I should look into it.

Basically, when I'm feeling great this seems like the worst idea ever. That will last a week or two, interspersed with bad days. Then I get a flare-up, it lasts for a few days or a week or two, I can't leave the house, and I start looking up diapers. Having something like 3 people all mention it to me over the last few months coupled with my mom the hospital nurse thinking I should when I brought it up finally tipped the balance during my last flare.

My hope here is that it can reliably buy me an hour of uninterrupted time if needed. Anything beyond that is a bonus. I want to live alone and work non-remotely, and an hour is kind of the minimum requirement. I've become pretty isolated. Even reliably doing stuff like being on a voice chat channel with friends is difficult.

I shut down because of it over the last year. None of the medical options save an ostomy have worked. I haven't tried an ostomy because it's extreme and irreversible and the doctors (both of them) are reluctant at best. If diapers work well, I may take it as a positive in favor of going to the ostomy, but I don't know. I'm hoping someone can chime in on that aspect of it.

If it appears that diapers are going to work, then I'll mention it to my doctors. I already have a dermatologist because I'm at somewhat increased risk of skin cancer from some of the colitis meds; my gastroenterologist wants me to get yearly screenings because I can't see them, and better safe than sorry. Or dead. But the point is that I can get prescription stuff if needed, and I'm sure the awkwardness of it fades quickly after the first couple times you have that conversation.

I'm not normally this forthcoming, but talking about this stuff here is getting rid of a lot of nervous energy, so I'm choosing not to trim these down as much as I should. I've spent the last week obsessively researching and planning for every contingency, and I don't have anyone outside my family that I'm close enough to to discuss this with. I'm eager to get the package of samples just so I can get over the first hurdle of starting this, and then maybe I'll be able to concentrate on other things again. I appreciate everyone dealing with my walls of text, and I'm not usually this bad about it. Bad, but not this bad.

Hello, valthrin, and welcome to the forum. May I ask how long you have been dealing with UC? What has been your course of treatment? I had a sudden and severe onset of UC in 1991 at age 40. I have been managing well on Sulfasalazine since then. At first, however, Sulfaslazine didn't address my symptoms at all, and so my gastroenterologist prescribed prednesone on a short-term basis. Nasty side effects for a woman, but the operative word is temporary, and it turned me around right away. I almost never have a flare, and when it happens, it's minor and short-lived.

Has your medical team done all they can to get and keep you in remission? It would seem that remission would do away with your need for diapers and the learning curve that goes with them, since it appears that you're not urinary incontinent.

btw, as to the need to urinate when one is wearing a diaper, it's my understanding that it's possible to pull a taped diaper down and up without unfastening/refastening the tapes. It's a learned technique, however. Also, at least one guy here has talked about pulling his penis through a leg band on his diaper.

W.

I haven't worked out how to do quoting yet, sorry. I'll look at it next time.

The problem is that this seems to be remission. Without the medication, words like incapacitated start applying. The worst summer of my life was 8-hour flare-ups every day, cold sweats, chills, and no appetite for about 2 months. I came within 5 days of the start of the college semester and we all thought I was going to drop out, and then it went away as quickly as it came for a couple glorious months. I made it through because it was still happening in the mornings, so I could reliably get up 6 hours before class every day in case I had a flare. Also everything was recorded because it was the CS program, and they gave me excused absences. Now if only the rest of life were recorded and came with excused absences. Then I'd be set.

My current regimen is the maximum dose of Lialda (I think it's about 5 grams but would have to check, active ingredient mesalamine), emodium twice daily, and 40 MG of Humira twice monthly. I've done Prednisone and Uceris. I've done the mesalamine enemas.

And none of it helps reliably. I was on all this during and well before my summer of hell. The prednisone is probably the best. But it takes something like 2 weeks for me to see any effect, and there is at least one case in which it basically didn't do anything, even coupled with the mesalamine enemas. Most of the medications I've tried have worked fully for a few months before losing some of their effectiveness. As I understand it, this is normal for some people. No one seemed surprised by it, at least.

I was diagnosed with IBS-D something like 15 years ago without proper testing for anything else. We were told that it was completely psychological and that I'd probably grow out of it. We accepted this answer for a good while for lots of reasons beyond my control and also because it wasn't so bad back then. In high school, I'd miss a day or two a month. In college, I went back because it went from a minor nuisance to a real problem, and they did the colonoscopy and biopsies and all. This moved the diagnosis to UC. But the problem is that the severity of the UC doesn't match my symptoms (queue another colonoscopy), and I'm responding to emodium as though I have IBS-D.

So the running theory is that I have both, as I said above. Adding to that evidence is that I seem to have two types of flares. One is painful and short-lasting (I think the colitis). The other is not painful but goes forever(I think the IBS). Me and my doctors think that what is happening is that they sometimes flare at the same time, and then feed on each other in a feedback loop. Sometimes, taking the maximum dose of emodium will shut it down, but not immediately. I have to wait a couple hours to a day for that to do any good if it's going to.

My gastroenterologist is currently through Cleveland Clinic Florida and is my second in about 4 years. I'm not sure where to find anyone better in my area and me and my mom both like him. I consider my mom's opinion on this to be more important than my own as she's a nurse in a position to hear about the reputations of doctors in our area. We have investigated gluton and lactose intolerance (respectively no and a bit). I have been to an allergist to check for food allergies, nothing. I can eat bland stuff like mashed potatoes with no seasoning and feel awful; I can eat a massive amount of fried stuff with gravy and whatnot and feel great. SO it doesn't look like diet helps (and, yes, a statement like that applies to way more foods than those two).

To be clear, the medications are working. This is me with the medications working. Compared to me without the medications, this is the best health ever. I will keep trying for better and would love to be surprised, but I do not realistically expect it barring new research.

trust me, diapers are not my first choice. But I don't have a life. I perceive people with fecal incontinence as having lives, but maybe that's not as true as I think. Until my samples show up, I don't know which of my preconceptions are wrong and which aren't. So...maybe.

Anyway, a couple more specific questions.

First, is "triple diaper cream" actually "triple paste"? This is what I get when I Google it, and it appears that it's now over the counter.

Second, I've been ordering through XP Medical. They sell a zinc oxide barrier cream and something for skin repair called Olivamine. Is anyone familiar with Olivamine and does it work? Their options in this department are limited, but I would rather just order through one supplier, especially since XP does free shipping on orders over $50.

Hello valthrin. You seem to managing your symptoms intelligently and aggressively. Congratulations on that. And do not ever worry here about the "TMI" business. The whole purpose of this forum is to meet for candid, informative discussions concerning a sensitive topic that relatively few people need to discuss. You are well on your way.

My experience with fecal incontinence is much more limited than yours. I have chronic, nonbacterial prostatitis, and this has a close correlation with IBS. Maybe once a month, I will have out-of-nowhere bowel urgency. It can be a serious problem if I am in the wrong place at the wrong time. In my experience, diapers are of pretty limited utility for fecal incontinence because I have always found it necessary to change ASAP. Depending on the exact circumstances of what happens, you might get the extra hour you are hoping for, but you also might not.

Noe

Triple diaper cream is definitively a prescription. Any dermatologist will know about it too. If I recall correctly it has a hydrocortisone steroid in it, an antifungal of some kind, and zinc all mixed in together along with some sort of base cream. The triple diaper paste you've found online is more of an over the counter version of this. It is not as effective, but not bad either.

As for the xp medicals barrier ointment, they all work on everyone a little different. As long as it has the zinc in it it's probably ok to try out and see if it works on you. I myself have not used theirs though.

Right. So. Time for my first issue.

I just got the samples and put one on. But I don't think it's fitting right. How tight should it be around the waist? How about around the legs?

I was expecting something approximating a watertight seal around the legs, which I've got. But around the waist, I can fit my whole hand in the back especially when sitting. The medium didn't seem large enough to tape though. This is Confidry 24/7, if that helps, but I've got a bunch more samples coming tomorrow.

It doesn't help that I seem to be right on the edge between medium and large. And of course googling this gives me a bunch of visual (and thus useless) resources.

I'm having a similar issue with the plastic pants. If they were any tighter around the leg then I'd not have circulation, but they're loose enough around the waist that I can get my whole hand in, and they don't seem quite big enough to go over the diaper vertically.
What does a good fit actually mean in this context, without referring to a picture?

Also, I appreciate the help so far. The responses here have been much better than I was expecting. I've encountered issues with just saying I'm blind before, let alone going into my other stuff. Usually it's along the lines of disbelief, and I was expecting that here for no good reason I can articulate. Probably just the nerves plus bad experiences in the past.

There is a trick to getting the tapes right at the waist. Some diapers' instructions say to make a vertical crease or pleat, gathering excess material together on each side, and then taping the upper tapes over the pleats. That usually works for me. Sometimes fastening the upper tapes so that they slant downward can help to achieve a tighter fit. Personally, I tried different things when I first began wearing adult diapers. Some worked, some did not. After a couple of weeks, you will have a very clear idea of what works for you.

valthrin,

Add my welcome to those above. I am double incontinent, urinary incontinent because of a genetic disease; fecal incontinent because of a paralyzed GI system.

Congratulations on managing your situation so well. In my experience, not all disposable diapers are the same. You will need to experiment with different sizes and manufacturers. Several of us have found that shaving our diaper area reduces the incidence of rash; you might consider that. Different creams work differently and need to be considered. Nullo works well for me; I take 1/2 tablet with every meal.

Keep up the good work. You are an example for the rest of us, myself included.