Urinary Incontinence and Suprapubic Catheter

Written by Helen Eckman

I have struggled with urinary incontinence and urinary tract infections since 1984, 6 years before I even knew I had MS, so I was more than ready for a solution to this embarrassing and tedious problem once I knew the cause.

The doctors advised me to wait as long as possible for a permanent catheter and in the next breath they told me to drink plenty of fluids. They performed their tests. My bladder is so spastic that it can hold only 3 oz of liquid before emptying spontaneously. That left me afraid to drink too much for fear of the consequences. I wore the thickest pads I could buy, but it just wasn’t a good solution.

My kidney tests began to show an overall dryness throughout my body tissues due to my curtailing of liquid consumption. My neurologist informed me it was time for some sort of catheter so I could drink enough to be properly hydrated. I had waited 11 years before taking the plunge. Decision made, I went to my urologist’s office and announced that I was ready for a suprapubic catheter.

The surgical insertion required a general anesthetic and I went home the same day with little or no information on how to take care of my new apparatus. The insertion point is just above my pubic bone. The catheter has to be connected to a piece of extension tubing which fits onto the leg bag which I strap around my shin and ankle.

Because the catheter is not in my urethra, it does not interfere with sexual intimacy.

It is marvelous to be able to drink as much water as I can hold and not have to worry about accidents. The catheter balloon has deflated and has come out of my stomach which requires a trip to the ER to get one re-inserted, but 3 times in 10 years isn’t much.

I still use pads and depends to protect from the little amount of leakage that can occur around the stoma (insertion site). Primarily, the extra protection is for occasional bowel incontinence. I prefer to be prepared.

When I got the catheter they told me it would last for5 to 20 years. After 10, everything is still going well except for the ever present UTI that is generally a bi-product of using a catheter. The doctor rarely treats the infection to avoid causing me to become resistant to the medicines they use to treat UTI’s. If I experience symptoms, then we treat the infection.

The catheter needs to be changed once a month or thereabouts. I get this done at the doctor’s office because my blindness does not allow me to see well enough to follow the sanitary process used to exchange the old catheter with a fresh one successfully, but many people have a family member trained in how to change it out or may be trained to do it themselves. This is not a difficult process.

Once a year, my urologist takes a quick look around inside my bladder to make sure everything is ok. He also performs a renal ultrasound and a complete metabolic panel (CMP). That is the extent of regular testing except for when an infection gets too symptomatic and I require antibiotics for a time. Usually, remembering to drink lots of clear liquids keeps the flares at a minimum. I do take one medication called Uroquid to acidify my urine. I tried high doses of Vitamin C but that upset my stomach too much.

You must be able to bend to unhook the elastic straps to empty the bag. Assembling the bags and tubing takes dexterity and some strength of the hands to get everything properly fitted together tightly. Of course, if you have help from a caregiver, you may have the assistance available to allow you to manage the care of the catheter. It is easier to drain a bag than it is to have to endure the exercise of dressing from the skin out when your pad or depends or whatever protection you have used, fails to keep you dry.

I have Medicare and private insurance which covers the cost of the supplies needed to maintain a suprapubic catheter. Some people wash and reuse bags and extension tubing. I do not because my insurance coverage is so good and because I lack the stamina to undergo such a rigorous process that must be done very carefully in order not to introduce contamination which could worsen the likelihood of infection. I will not bore you with the list of items needed for the care and keeping of the catheter. Some items sit on the shelf in case they are needed to flush the tubing and are rarely used. Others are staples that I go through on a regular basis.

I would be happy to answer any more specific questions if anyone has them, leave a question in the CONTACT tab at the top of this blog and Linda will pass it along to me.

After 10 full years with the suprapubic catheter, I fully intend to maintain it for another 10 or more if possible. It has given me a freedom I did not have when I had to carry a truckload of extra protection and an extra set of clothes everywhere I went. I would recommend it to anyone whose incontinence is out of control. ~Helen

Linda

About our Co-Founder: With a bachelors in Social Work, Linda is 53 years old, happily married with eight children and 17 grandchildren. Diagnosed with MS in 1995 and now having accepted and truly embraced her new reality, Linda has created MSrelief.com. She is dedicated to proving that joy can be chosen while living with Multiple Sclerosis. Linda specializes in helping others, especially those with MS attain the lifestyle, independence and happiness amid living with MS.

17 Comments:

  1. My mom is 69 yrs old and has suffered with MS for over 40 yrs. She has severe osteoporosis which prevents her from sitting up straight along with her MS which prevents her from walking without help. She also suffers from major cognitive problems the worst being her memory loss which almost mirrors Alzheimer’s. My dad and I care for her with some help from a CNA that comes 3 times a week for a few hours. She has been suffering from constant UTI’s which now will require self catheterization and she is not able to do that because of her osteoporosis. My dad suffers from severe arthritis and will never be able to do this for her. I’m a full time working mother of 2 girls 8 and 10. I was hoping we could get some kind of permenant catheter for my mom but doctors are telling us they WON’T do this due to the risk of infection. I am baffled with this because she has had ongoing UTI’s for months now and I dont see how those infections are any different. Caring for my mom has been so challenging because so many doctors just dont seem to know enough about the disease and also dont seem to care. She was hospitalized for a stage 3 bed sore that we had taken her to the doctor for THREE times and he kept sending her home saying it wasnt that bad. Im frustrated with the lack of care and knowledge doctors seem to have when it comes to MS. It is very hard and all I want is to be a strong advocate for my mom and make her quality of life better than it is. Shari

    • Dear Shari,
      Your mother’s situation sounds very difficult and quite frustrating. Certainly, she cannot care for a suprapubic catheter on her own. It involves emptying a bag that is either attached to the calf with cloth/elastic straps or she could use what is called a night bag, but that is only useful if she is truly bedridden as it has a larger bag and a long tube which is meant to drape over the side of a bed to empty when one is not active.

      I am concerned that her memory problems might make her confused by the tube coming out of her abdomen. A lot would depend on how docile she is or whether she is strong enough to pull and fuss at it, which could cause problems.

      Another thing to keep in mind is that the suprpubic catheter keeps the bladder mostly empty all of the time, yet a small amount of urine remains and that little bit is usually infected. The urologist rarely treats my ongoing infection unless I have troublesome symptoms. I can help to keep it at a minimum by drinking a LOT of fluids, at least a half gallon a day and often twice that much. Otherwise, the little residual urine that is infected also colonizes which can produce worse infections.

      At 48 I can still stand and bend to unhook my own bag to empty it and assemble new bags and extension tubing. I do go to the doctor’s office monthly to have the nurse put in a fresh catheter. If you have a home health program, a nurse could come to do that at home for her in all likelihood.

      I know that when I’ve been in the hospital with an exacerbation, the nurses have loved that I have the SP catheter because it just hangs on the side of the hospital bed and is easy for them to empty.

      I had a great urologist who encouraged me to wait a little before getting my SP catheter but that was because the technology was so new back then. Once it became evident that I couldn’t or wouldn’t drink enough fluids to be healthy, they were all for it and gave me noh= hassles at all.

      Prior to the SP tube I took Macrodantin every day tohelp keep the UTI’s at a less frequent number. I don’t know if that would help your mom or be an option for her, but, if she is primarily bedridden a good urologist might be persuaded to try the SP catheter. I have to remind you that every situation is different and I am not a physician. Do as Linda suggested and make sure you are liking your mom’s doctors and that they are giving you satisfactory, valid reasons for all her treatment options. Hers is a complicated case and I feel unequipped to say the professionals are wrong, only to say that you should have solid answers to your questions.

      I hope this has helped a little in a situation that clearly has few easy answers. I wish you success in finding the right solution for your mom and dad.

      All the Best,
      Helen

  2. This comment has been enormously helpful.
    I am due to have a SPC next week. Phew!
    I have had MS for 15 years and am a wheelchair user.
    Hopefully, I will keep you informed as to my progress.
    Warm wishes.

    • Yes Julia! Please keep us informed! For me, incontinence is the most embarrassing (and stinky) part of this MS experience! I think it’s important to have someone to talk to and feel the support! You can also join us on Facebook if you’d like! http://fb.com/msrelief

  3. It is the worst problem for the people who have unitary problem. I am one of the victim of these problems. There are so many people are victimized with such phenomenon. I am really surprising with such kind of behaviors.

  4. yeah, worse problem about urinary infections.
    more care about that isue and use wise treatments.
    thanks. also please visit me and give a little comment. 🙂

  5. I think you have suffered a lot with urinary incontinence. Since 1984 you are suffering from this it was quite embarrassing at that very time. Now days it is easier to handle incontinence. You have shared your experience and it can be helpful and motivational for the patient of incontinence.

    • Jack,
      Yes it is a very difficult condition to deal with! I hope that sharing these stories that Helen and I have shared helps people feel ‘normal’! I know I didn’t at such a young age using products that are typically used by senior citizens!
      Linda

  6. I also wanna mention that it took me 10 days to know that I am sick, 2 weeks of having the Bacteria developing in my body through weird feelings that I am just not me, losing appetite, you just witness that u are being different then 3 to 4 days of chills-fever, then the real UTI of frequent washroom visits and fever for no reason. In short. It was the most difficult 2 weeks I ever had in my life and thx goodness I was back on track with my Dr. prescription to Cipro Xl 500mg and using diapers. Thanks!

    • Rachel,
      Thank you for sharing! Urinary tract infections can be so difficult!!! I have to say that I like to refer to “adult diapers” as disposable underpants ~ sounds a little more dignified to me!
      Linda

  7. Dear Helen,
    I am facing the decision of getting a suprapubic catheter. My problem is that I am a high functioning quadraplegic due from polio in the ’50s. As the years have passed, I am unable to transfer to void from my wheelchair which for several years has me more and more staying in bed to utilize a bedpan, unable to stay alone ever or being assisted by others around the clock.
    I am not quite sure how to address this with a urologist with no bedsore issues. I am a morbidly obese diabetic with Post Polio Syndrome and COPD.

    Any suggestions on the approach needed to get this done?
    Wanting my life back,
    Cat

    • Catherine,
      I’m so sorry that I didn’t see your comment until yesterday! I’ve contacted Helen and she will reply as soon as she has time~

    • Dear Catherine,
      Your situation is most interesting and a little difficult for me to make strong recommendations about. Because I am ambulatory, I know very little of how the suprapubic catheter (SPC) works for people who are wheelchair or bed bound most of the time. I know that when I’ve been in the hospital, medical professionals have loved working with it because they don’t have to deal with bed pans or manual catheterization.

      If you are in a wheelchair and have an SPC, you could wear a leg bag which would have straps just beneath your knee and around your ankle. The larger leg bag holds about one liter so you can go quite a while without needing to empty. Your personal care attendant should be able to assist you with that process. When you are confined to be, a night drainage bag can be used and this is very easy for the PCA to empty. It is important to drink plenty of fluids if you get an SPC to avoid infection.

      I certainly wish you the very best in whatever path you choose.
      Helen

  8. I am 71 and have been dealing with MS for 30 plus years. Bladder related problems have become severe in the last few years. I’ve done some research and I think a supra catheter my be a good solution. However, my urologist says that you can expect to be ‘wet’ even with the catheter. Do you often experience leakage from the uretha?

    Thank you.

    • Lois,
      I don’t know an answer to your question. All I know is that Helen is very happy with her Suprapubic Catheter. Is the catheter your urologist suggests a Suprapubic Catheter? I will ask Helen your question and I’ll get back with you as soon as she answers me!
      ~Linda

      • Lois,
        Helen’s response to your comment was answered in an email so even though my picture shows up on the reply it is really Helen’s answer.
        ~Linda

        Dear Lois,
        It is true that, even with the suprapubic (SP) catheter, you can still leak a little from a couple of places. One is the urethra but I don’t usually find this a problem unless I have a UTI (Urinary Tract Infection) or my catheter is crimped or blocked, which I can easily fix by adjusting the tubing. The other spot that it can leak a little is around the stoma (the insertion spot in my abdomen). To catch this minuscule amount, I use a sterile gauze pad around the tubing at the stoma. As for the other, I stay protected with a pad, like Poise or Serenity, just in case. I rarely need it but I’d rather be safe than sorry. Even with the occasional leakage, I still so appreciate the ability to drink my two liters of liquid each day and not have to worry about accidents. I’m much healthier with the catheter than without it.
        Best of luck to you.
        ~Helen

  9. this is uncomfortable if you have uti but there are some incontinence product that can help in a little way.

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