sarahjane

It's not fair to make innocent bystanders uncomfortable like that. You say you're a DL--and therefore you don't need diapers--so why do you wear them in public where you will be seen like that? How would you like it if someone who was into "water sports" stood up and urinated on his boyfriend in the gym shower? Would you find that appropriate? You're making us look bad...

Yes, it sounds to me like something at or above the sacrum. I would look for damage at S2-S4 in particular given the symptoms. But that's just me.

Gads, that does not sound good. Did you have any damage at all to your lower back/pelvic area? It sounds like you're in desperate need of an MRI.

You normally would, yes. But not always...and online it can be hard to tell what could be an infection, and what is just some muscle spasm. That's why in situations like that I encourage folks to see their doctor. The cure to the problem might be as simple as an antispasmotic (including cheap simple drugs like anticholinergics), or it might be a bacterial or fungal infection. The worry is, when one does not know for certain, little problems can become big problems. It's not a bad idea to get a simple test like a clean catch UA to rule that out. You also want to rule out things like bladder cancer, which can be easily treated if caught early. Once you know what is causing it (or at least what's not causing it), you can decide how (and if) you want to treat it. That's my take on it, at least.

Many doctors don't really know the difference, either. But most of those won't admit it. That being said, many folks with IBD (inflammatory bowel disease) also have motility problems, which is called IBS (Irritable Bowel Syndrome). So some physicians say "of course you have some motility issues, you've got diseased bowel full of bile acid", and others say "You've got both IBD and IBS". It's a mess for everyone concerned. Welcome to the club of confusion.

IBS is not related to Crohn's Disease or Ulcerative colitis. IBS is a motility disorder, where the fecal material moves through the bowel too slowly/quickly. CD and UC are conditions where the intestine becomes inflamed. Crohn's can occur anywhere in the GI tract, while Ulcerative Colitis is restricted to the colon. Your problem--whatever it is--sounds like a motility problem at the moment.

You could have a lot of things, including an infection that could become serious. See a doctor and get it dealt with. Don't mess with something that could damage your kidneys.

Though I think it would be wrong of them to refuse to admit people who have incontinence and truly need diapers, I think it would be equally wrong for someone to claim they are incontinent just so they can (1) be seen in their diapers or (2) see others nude and not be seen. This is what I have complained about before...people who want to force their fetish-hobby upon others really make everyone (both AB/DL and incontinent) look bad. They really make themselves look bad. As for me, I could handle going to a nudist camp if I was in remission and diaper-free, but in diapers? Ugh. Talk about sticking out like a sore thumb!

I spend probably an hour a day. Some days are only 20 minutes, but others are longer and I have to take whole days off for medical procedures. Price per day....say $2-$6 for diapers, $270 for medication (though a lot is paid by insurance. My out-of-pocket daily is about $10 for medication). Then there are all the other supplies. Out of pocket charge: about $15 per day Total expense per day: about $320.

I use the traditional Tena pull-ons all the time, and I really like them. They work well and have fecal barriers. I don' t like the "tena discrete" at all.

Yeah, I know it's a bit off-topic. But then most of this thread has been off-topic, so at least we're consistent. Re-reading my posts, I might come off wrong to some people on some things. I don't want to be mean about the AB/DL crowds. Nothing against anyone, and if people get off on the "surrendering control" issue that's their business. There's nothing wrong with that! Where I have a problem is when they act this out in real life with unwitting subjects. I've mentioned this here before...but this is done by a small minority of the AB/DL crowd, I'm sure. However, a lot more come here to post their fantasies--again this is fine--except when they come into the incontinence folders and post their fantasies as fact. It gives a lot of people the wrong idea. Over time, I've learned to spot these posts. Sometimes I am fooled, but not often anymore. But a lot of people take them seriously, and then this causes rumors and stories to build. I had doctors tell me for years that it was all in my head. One without even examining me. Had he checked, he would have found some obvious damage that would have been specific to this diagnosis. Instead, by the time a doctor did check the damage had healed and it added years of suffering for me. Ugh. There were times when I was so sick that I really needed a rectal exam, but was too ashamed to ask for one. Now that I've been diagnosed, I do my best to avoid that sort of thing. The colonoscopies are bad enough. I don't need anything else in my rear. Thankfully I've been lucky enough to have usually had good nurses when I've been dealing with incontinence. I've had bad experiences with x-ray techs and doctors more often.

One of the problems with online sites like this is that you get: A lot of people telling stories that they claim to be true, but are actually their fantasies. Many people here don't actually have a lot of medical experience, so they base their statements on assumptions and television shows. For some, being mistreated or bullied by people in control (mothers, babysitters, nurses) is part of that fantasy. They want to be ashamed and dressed-down in front of others. So when they post, they discuss such experiences. There is the "online effect", where people jump to conclusions and go off half-cocked. Plus, I know from experience when I was a health-care-provider that there are some folks who go into a medical facility and claim medical problems in order to be embarrassed or "caught". We had a woman who came in complaining that she had fallen and was in pelvic pain. She was acting a bit odd, and when the pelvis x-rayed we discovered that she had a penis. She really wanted a pelvic exam so she could be "found out" and "caught". I suspect some people here may have been trying to get a thrill out of it all, and that is part of the problem. Also, sadly, some medical staff suffer from the "you don't look sick" problem, and may not treat patients properly when they truly do not understand what is going on. This is often made worse by poor communication from the patient. Here catheters are usually inserted by a nurse, though in patients with urological or anatomical problems I think they are often inserted by physicians. Most nurses are great. A good nurse is worth her weight in gold. A poor nurse can be a pain. I've only had a couple bad nurses, but a bad nurse is even worse than a bad doctor (a good nurse can save you from a bad doctor, but who saves you from a bad nurse?). I had one that was the worst IV stick I've ever had, and she must have done me 20 times. And I am the world's easiest patient to stick...I have fantastic veins. She was an older nurse as well; I'll forgive people who are still learning. One nurse I worked with was so bad that I would find another nurse on the floor and ask her to keep an eye on certain patients belonging to bad-nurse. I was worried she would mess them up. But most bad nurses are not mean, just not very skilled. Like bad doctors. I had one really bad "nurse" chew me out in front of a room full of patients. Without going into details (because I don't want to relive it), it would have been the fantasy of a lot of people here. She was not aware of the full-details of incontinence, but I had gone in to pick up some records (my doctor had suddenly left) and she decided to tell me that it was all in my head and I had been wasting their time, including revealing some very personal details about my illness. Imagine being in the middle of a room full of people with a nurse yelling about your diarrhea, and telling you that everyone has accidents with diarrhea sometimes, and I was wasting her time by coming in and allowing a doctor to order a colonoscopy. But when she was about done, I realized she was not even a nurse, but a medical assistant with less training than me. She was also younger, and (at the time I had just finished pre-med) I realized she could not have had as much experience as I had either. I filed complaints all the way up to the very person in charge of the hospital chain, and have not been back to any of their facilities since. I used to have the apology letter pinned to my wall. So, it's also possible that some of these "problem nurses" are not even nurses....

I should add that I was never an AB/DL type at all. When, at about age 23, I realized things were spinning out of control badly, but I had gotten frustrated and given up on seeing physicians about my then-undiagnosed condition. I realized that if I wanted to stop soiling my sheets (try having nightly accidents in student housing), the most logical thing was to wear diapers. But they had not been ordered by my doctor, so when I went to buy some not only was I incredibly embarrassed to need them, but I felt like perhaps I was doing something wrong. After all, no medical professional had told me that my symptoms were because of the same medical conditions I had as a small child, and I was told then it was somehow my fault. So I felt like I was "stressing myself out" and giving myself this disease. When I did finally manage to buy a bag of adult diapers--many times I gave up and left the store without them--I got a real adrenaline rush as my feeling of utter shame and panic collapsed once in the safety of my car. But that, along with feeling like I was doing something wrong, did give me a bit of a sexual "dirty" feeling for a while. That's how I found out about the whole AB/DL thing--this was in the early days of the WWW. Now, it's just day-to-day living. I sometimes get a bit of a tingle, but much more of the time I get depressed dealing with the problems. I think a lot of the "wannabe incontinent" folks here would lose interest once they discovered what a pain it can be dealing with incontinence on a daily basis.

I have bowel incontinence due to a chronic intestinal condition. I am on a medication that helps a lot, but I have some incontinence weekly, and sometimes significant incontinence of fecal material, mucus, oil and blood. I had it as a child, then I seemed to get better until I was in my mid-20s.

That is common here as well, for patients in ICU. But an indwelling catheter can be dangerous and lead to infection. "Nursing staff convenience is not a reason for catheterization". Normally diapers are only used in long-term care facilities. Weighing a known sample diaper against a used diaper is a common way to measure output in pediatrics floors. And it may be an excuse to use the hospital-issued diapers at some facilities...I don't know about that. But I do know there are reasons to use catheters, and reasons to use diapers. It depends on the patient and the condition. Sadly, it also depends on the hospital. And, sometimes patients are cath'd just to keep nurses from having to empty bedpans. I think with proper communication, this would never be a problem. The problem was probably getting them in the emergency room, which is how this thread was started. Most hospitals in the US don't have things like adult diapers just sitting on a shelf in the floor stockroom. They are ordered out of the main hospital stockroom by the bag as needed and billed to the appropriate patient account...the same way you would with a catheter tray or a leg splint. I suspect that was the problem in this case. An MD needed to write an order and get the system in-gear. I would take my own anyway. My insurance does not provide them, though I can purchase them tax-free. I could probably fight to get them paid for by my health insurance, but as they already pay over $60K for my treatments every year, I'm not going to make a fuss.

Diaperdragon, your blue sig made me laugh out loud!

I've seen people here and on other boards talking about "changing diapers at the gym". Why would you do that in public? Not only for your own sense, but for that of the other people. If someone was next to me changing a diaper, I'd not only be offended but grossed-out. I would not want some stranger to change a tampon or maxi-pad in front of me either, to refer to your analogy (not to mention wiping themselves, either front or back). I don't mean this to sound like a flame, but would it be that much trouble to go into a restroom stall? Both for your own privacy and so as not to turn the stomach of other people? I do know what I'm talking about here; I've been in diapers or at least protective underwear most of the time now for 10 years. But there are normal rules of decorum in society; I'm not ashamed that I have to use incontinence products, but I don't shake them in peoples faces either. If I had an ostomy, I would not go around with my lower abdomen exposed either. It's just polite behavior. When my medication is working (like now) I can go to the gym and even go swimming. But I always wear a swim diaper under my suit just in case (and of course pullups under my regular clothing as well), and I carefully selected a facility that has a unisex handicapped changing room, and also some private changing/shower areas in the mens & womens changing rooms so that I can handle all this without involving others. I looked around carefully so I could find one. I would expect others to do the same for me. Anyone who sits in the middle of a room changing their diaper would appear (to me, at least) to either care little for other people, or to have some desire to be seen in that condition...