www.incontinentsupport.org

As above last tuesday I had my specialist appointment with another Uro who deals with spine trauma related incontinence. It was very cut and dry, and by the end the two options presented were I could use a drug to stop me dumping my bladder and intermittant cath or to continue using diapers. ( he actually called them diapers, a first for any medical person so far in my own experience, it threw me...) Thats me, 30 years old, for the rest of my life.........

Charlie, Being back in diapers at 56 was a mind blower for me. If it had happened at 30 I am not sure how I could of handled it. I (we) are here for you to talk (rage, cry, discuss, etc.) to. Other than incontinence are you okay physically? I hope so.

I understand your experience with the doctor. I had a kidney stone a few weeks ago and after getting pain meds and flomax at the emergency room and spending time with a CT scan it was a few hours and i was soaked. I had a great doctor and nurse. When I was ready to leave (obviously they all knew i was in diapers) the doctor asked if i needed a dry diaper. I had brought a bag with spares with me, but his blunt, but polite, question, also threw me.

It was on the way home (i was driven there and back by a friend (female) that it hit me that he called them diapers because....well, they are diapers.
"A rose by any other name..." I understand what you were saying. Papa

I've never heard of a urologist that specialized in spine truma incontinece,....it makes sense that there is such a doc. Nerve damage to the spine can cause a lot of problems and in the big picture being incon is really very minor compared to all the other problems tht can be caused by some type of spine injury. The VA provides all my medical needs and I know they don't have this type of urologist where I'm located. Last Oct I spent 10 days in the VA regional spinal cord center in San Diego, and the urologist at that hospital called diapers "pads". I don't think there are very many medical people that call "pads" diapers. It doesn't bother me what people call them,...... but I guess some people must be sensitve to it.

I've been "back in diapers" for a large portion of my life, and I'm in my late 20s.

It used to be depressing, but ya' just get to a point where you have to decide that this isn't going to keep you down.

If you really must consider it from a medical disability standpoint... there are a lot worse conditions that you could end up with. So we have to wear diapers, big deal. That hasn't prevented me from doing everything I ever wanted to do. You can still be active, healthy, successful, etc. So it requires a little protection and some lifestyle adjustments. But all in all the inconvenience is really relatively minor compared to how things could be.

My advice... don't focus on what you've lost. Don't get down thinking that you are going to be dealing with this for the rest of your life. Find inspiration in all the things that you CAN do.

The initial adjustments can be quite a shock, don't get me wrong. But remember, life goes on. You WILL get through it and the less you think about it as something being wrong, the better things will be.

_________________
~~PuddleGuy

CharlieP,

What type of spinal cord trauma caused your incontinence?

Do you have other spinal cord issues?

If you don't have nerve damage maybe meds will work. It might be worth a try just to find out. However, if the cause of your incon is nerve damage I'm ceratin meds will not help. I would "think" your doc would have told you this. They can treat the symptom but not the cause when it comes to spinal cord nerve damage.

The medical people at the VA hospital I go to also call them diapers. The uro doc I see calls them pads as does my personal doctor. It doesn't bother me. I call them diapers. I have been in diapers for the past 3 years. I have been hospitalized like 10x in the past three years and most of the nursing staff and doctors call them briefs or pads. Not many call them diapers. But its no big deal to me if they do because I do it.

I have physical therapy starting tomorrow for my knee. I'll have to tell the staff there that I wear diapers. But oh well. Its really not that big a deal. Diapers to me, are just another type of underwear. I don't let them get me down. They help me live an active life without embarassing myself.

I have nerve damage in my lower spine. It was from an accident in the airforce 3 years ago. I never needed any meds up until last year when I started getting alot of pain after some awkward physical work. Or the nail in the coffin as I now call it. ever since im on several painkillers a day. Im on max dose of Tridural, I use Lyrica max dose, and now apo naproxin twice a day too. it keeps the pain down for sure but I just, more than anything want the pain to stop. diapers I can deal with but my whole family suffer as Im like" the lion with a thorn in his foot " and get pretty grumpy sometimes and the stupidest of things....its really realy depressing, but im not on meds for that...i just cry on the inside all the time.

My incontinence is from spinal injuries suffered in a car-semi accident back in 1998. I've seen neurologists, urologists as well as my primary doctor and physical therapists but I've never heard of a urologist that specializes in incontinence caused by back injuries. I've got an annual check up coming up in September so I'll make certain I bring this up with my doctor. I've been told that it is a permanent situation. The suggested options given to me were a cath and "absorbant products". I was in my early 40's when the accident took place. It took me a long time to accept it all and I still get angry occasionally but it is just something I know I'll need to deal with for the rest of my days. Lots of great support here.

CharlieP,

Wow,......I have a LOT to share with you. Has your doc told you that you have a condition known as "Cauda Equina Syndrome", CES? If not, ask the next time you see your doc. There are a few vets in this forum that have spinal cord injuries, and CES seems to be very common because it is a condition if damaged spinal cord nerves. Nerve damage is only one of many reason why people become incon, but having nerve damage neck, and/or spinal cord is very common

One of the first things you should know is EVERY VA hospital in the country has what is known as a "Spinal Cord Injury (SCI) Unit". If your primary care is not already assigned to the SCI unit/clinic at your local VA hospital, I highly recommend that you ask that you be transfered to this clinic for primary care ASAP!. I don't know if you need the use of a wheelchair or not, that part doesn't make any difference. I'm not in a chair and I receive all of my care from the SCI clinic. In short, the main difference in being assigned to the SCI clinic is all of your medical needs are streamlined so you don't have to wait an extended period period of time for anything. The medical needs for those people that have suffered neck, and/or spinal cord injuries are often very time sensitive in nature (pain), and the VA knows this. As such the VA have a SCI unit at EVERY VA hospital in the country that is designed to provided top notch care for ONLY vets with neck, and/or spinal cord injuries. You MUST have a spinal cord, and/or a neck injury to "qualify" for care in this unit/clinic. The health care team in each SCI unit ONLY provides care to those within the clinic so there is no long waiting periods before you seen by the health care team. If I have a need, I can be seen the same day if needed. There is NO ER waiting,......everything is steamlined once your peimary care is assigned to the SCI unit of your local VA hospital. Many of my appt's are with other depts within the VA and even those appts are streamlined.

Based upon your description of pain, it sould like you could benefit from the use of the pain clinic. Pain meds only mask the pain so it it far more effective to treat the cause, or source of the problem. Are you taking any meds that treat the nerves such as Gabapentin? Another teatment that is very effective in treating nerve pain is acupuncture. I never experienced acupuncture until last Feb. Wow,.....what a differnce this treatment makes. If someone would have told me what I should expect before I started treatments I never would have believed them. It was not 100% effective, but it did reduce my pain by about 50%.

I assume you probably receive your diapers from the VA. Are you satisfied with the quality of diapers you receive? If you are fine,......if not, let me know and I will send you a private msg and tell you how to obtain "quality" diapers. The VA send me Abena, but if you ask your local VA pharmacy for that brand they will tell you those diapers are not available. There is one other person in this forum that I know of that also receives Abena brand diapers from the VA so it is possible, you just need to know how to obtain something better than the junk diapers they would like you to accept.

The last thing I will tell you about will exceed every possible expectation you may have regarding health care from the VA but in order to receive this level of care you MUST fisrt be assigned to a SCI unit/clinic at your local VA hospital. So,....let's take things one step at a time. I would recommend that you call your local VA hospital and ask to be connected to the "Spinal Cord Injury Clinic". Once you have a someone on the telephone, ask that person if your primary health care can be assigned to the SCI unit and wait for their answer. Let me know what they tell you. Also, let me know if you what the VA to provide you with a better quality diaper. If so, do you want any special brand? You can get almost anything you want........I happen to think the Abena disposables are the best on the market. I'm currently using a combination of the Abena M3, and M4 diapers.

Like I mentioned, most vets assigned to the SCI clinic are in chairs, that part doesn't make any difference, but it is kinda depressing to see that when you have an appt. Maybe your in a chair now so seeing other with the same type of injuries won't bother you, but it does bother me a little sometimes. The other thing you will notice is most use a cath, some use diapers, but being mobile and wearing diapers is something others wish they could do. That seems to be a reminder that there is always someone else worse off compared to your medical need. The good news is there is no "severe" pain associated with being incon.

Charlie,
I am the other user John speaks of when it comes to getting quality diapers from the VA. I too get Abena brand. John and I can tell you the process to take to get quality diapers from the VA. It just takes time. But it is worth it. I am service connected for urinary incontinence. I get 2 cases of xplus and 2 cases of extra. And its easy. So give it some thought. If you need anything, just send me or Johnstone a msg.