Trudy Triumph's Neurogenic Bladder Blog

A Flacid Bladder Question for Trudy

Question for Trudy:

Hi! First I want to say thanks for being brave and speaking out about this problem.

I have small, flaccid neurogenic bladder. My question is should I wear diapers? I do wear menstrual pads, but sometimes they are not strong enough to keep the fluid in, so I must change them from time to time. I do not have incontinence, but I cannot pee right, it always stays in my bladder, so I relieve myself in the pad. I cannot live in lady room, right? (Sometimes it feels like I should.)

How do you step out of your comfort zone?  Going out is really a problem for me. I am always afraid I will leak in public as I have small bladder I cannot hold too much, my urgency is at 180 ml. My max. is 200 ml. I am a 26 year old women. I been having problems since I was 10 years old. I did not have any medications for it, nor catheter. I do not know why, I am also afraid it will get worse since I did not have any treatment. Tina

Trudy’s Answer:

Hi Tina,

Thank you for your question.

I step out of my comfort zone because I want to live my life.  I get into trouble now and then, I admit, but at this point in my life I am not ready to stay housebound and you shouldn’t either.

You say you do not have an urologist that you are working with? Finding a good urologist is key.  You need to see a doctor because your health depends on it.  Perhaps he or she could answer some of your very important questions.   Please write me back and tell me that you will do this.

There are several organizations that can help you. To find a urologist and perhaps help with product choices.

I use an intermittent catheter.  I do not leak, but many do, so finding help, for the products you need,  is what you need to do. For years my attitude was exactly like yours.  I thought that this was what I was chosen to live with and I needed to just live with it.  What I did not understand is that I was not doing my body a favor by ignoring symptoms of an underactive bladder.  There are other body parts you can hurt by trying to be stoic.

Here are some contacts you can make: A quote from Beyond Embarrassment, JoAnne Lake with Julia Parker

Page 219

Society of Urologic Nurses SUNA Headquarters East Holy Ave. Box 56 Pitman, NJ 08071-0056

Underactive Bladder Foundation, PO Box 5080 6360 Broad Street Pittsburgh, PA 15206-9998

Start with the above contacts.  There are many more in the book.  I do not know where you live but if you have a teaching hospital nearby perhaps that would be a good place to start as well.

Here is another idea to help you find the products you need.

Quotes from Beyond Embarrassment, JoAnne Lake with Julia Parker

Page 76

Incontinence Pads and Diapers One of the most obvious issues people with Neurogenic Bladder deal with — and unfortunately, one of the greatest sources of frustration — is finding the best bowel- and bladder-accident protection for their needs. No two people are exactly alike, so we can’t use one-size-fits-all devices and aids. What’s best for leakage will not work for a full-on flood. So for “the rest of the story,” I interviewed Scott Beckert, RN, an expert in the field of incontinence products, having worked with patients living with all types of urinary incontinence. He explained that, by default, many of us go to the grocery store and buy an adult brand of protection from stocking clerks who have no idea what we need. They sell us their own brand suited to a woman who dribbles, not a full drencher. The diapers in the store may be geared to light incontinence. What if a person needs help for overnight incontinence? Then a person should use a product that can contain the amount of urine that is expelled overnight. Buying an inferior product can cause frustration and perhaps disaster. The search for the perfect adult diaper or pad is daunting because there are so many products available and so many factors to consider. It is important to be well informed of your options. Scott recommends that first we look for gender-appropriate supplies. Men and women are different, and it matters. How and where the urine enters the product makes a difference in how efficiently it is absorbed.

 Then further down, on page 78 is:

I have found that talking to an online salesperson about my needs is most helpful. He or she is an expert in the field, and there is the added bonus of much-needed privacy. Make sure that the product you order online or over the phone includes discreet packaging. No need for your neighbors or the mailman to know your business.

 I hope this helps you.  Please keep in touch.

5 Responses to “A Flacid Bladder Question for Trudy”

  1. Reply Tina

    Hi ,it is Tina again ,thank you for answering me . I did go to urologist but he did not gave me any meds nor anything else.I Will go to my family doctor to see if she could give me anything. I live in Croatia (Europe).We do have special stores for that kind of medical things, and we also have online sites we can order the products like Tena and Always

    • Reply Trudy Triumph

      Even in America this condition is difficult to get answers for. Another thought is to try different types of products because the absorbency quality is different in each one. Once you find a favorite buy a few extra.

      I have always wanted to visit Croatia many people say it is a beautiful country with beautiful people. Take care and again thank you for your question.

  2. Reply Ana

    Dear Trudy,
    Hello. First i do not know where to post this question, so far i leave in comments. Hope you can post then as a question. My name is Ana, and I have already be in contacted with you about my current and chronic problem, i have neurological bladder. I am doing catheter at home, six times a day. Two days ago happened something that make me worry. I introduced the catheter in the say i used to do, but this time the but the urine did not go out as it usually does. I was in shock. Tried with a new catheter and it did. At the following day I was doing okey, but at a moment again this event took place. That time i was under the doubt if I have drink enough, i was confused and frighten. So I drank a lot, and I was wrong because then, of course, the retention was enormeous. To be frighteen in front of new results or facts is very negative to me. I simple can not handle. So, I have this curious question: can be something wrong that make me not to be able to make a good catheter? or just a simple question: what can lead a problem like the one i described? Why the orine did not get our with a catheter?
    Oh, thank you Trudy and friends of this marvelous blog if any can help me at least to be quit and keep going right as i was some days ago….

  3. Reply Monica black

    Like Ana I recently ran into the same problem. I was still under nursing care. The nurse put in the catheter and got a dribble. Attached a leg bag. I had been drinking and felt bloated but after an hr only 1/4 of a bag. Went back to the nurse and she was able to flush the line. Desperate I asked for a new catheter. Just a few drops this time then nothing. She was at a loss and sent me to hospital. Bladder scan showed zero which didn’t coincide with my symptoms. 6 hrs later it suddenly filled and they sent me home. Drinking the whole time. My Dr did find a bladder infection the next day. Have you heard of the bladder shutting down like this? Could it be the infection? Of note my bladder usually holds 1.5 L

  4. Reply Ana

    Dear Monica, this is Ana again. Sorry to listen you had got such a problem. After that event, I began to be conscious that we got to understand how our body works when we drink liquids and how much it take until each of us can do a good catheter. To me, i have to catheter 400 cc each time. Less would be a problem, because immediately i will need the following one. It is not easy to get your time. But first i followed the instructions of my urolog and i did before i could Before I urinate, because I can do it. The idea is that when I can do it is that the bladder is already very full. But I discovered that this is not always the case. Sometimes when I did it before, the catheterization was very small, and after an hour I had to do it again. Now I have found the solution and i always take the same amount of water between catheterizations, and at the slightest sensation I do the catheter. This happens every four hours. And the result is that the catheter is almost the same, that is, I think that I got a good rhythm. I do not know if this is the right thing to do. I’m waiting for the next urolog appointment to ask. Otherwise, the chaos was total. In relation to the infections, i have got klepsiella for more than 7 months. But to my surprise, the Klepsiella does not bother me. I do not fell anything, and I checked every other day if i have temperature and everything is okey. The urolog decided not to give me antibiotics because first my prior urolog gave me during almost one year antibiotics until i got to the horrible situation that the klepsiella got stronger and always was there. So i changed the urolog and the new one was absolutely againts to keep with the same method, and i was agree with him. I do not know if it is okey but here, in Israel where i lived, the urologs do not want to medicate if there is not fever, pain or symptoms that could led you to a kidness problem. Thanks God I am doing quite well. Hope i do not confuse you. Each person has her own way and urologs have to work on it. But this is my story.

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