Bowel & Bladder
Many of us with Cauda Equina Syndrome have problems with either our bladder or our bowel or sometimes both. A few or our members have generously given us a few tips that have helped them out with cathing.
Hey, I don't write very often but wanted to put in my two cents worth on this one. While I was in the hospital the doctors and nurses said that in order for me to successfully in and out cath myself I would have to be able to look in a mirror to see the opening to my urethra. Because of my size (I am well over 300 lbs) this was not possible nor was getting both hands down there like the nurse said I had to do to be able to accomplish this impossible task.
Needless to say I was devastated. I am 27 years old and had worked in nursing homes for years, I was not happy about having so much, physically, in common with my residents. Well, after 6 months of hauling that damn catheter around, dealing with UTI's that liked to kill me, having to strap the damn leg bag on with nurses tape and ripping it off every evening I WAS FED UP!!!
My friends and family learned to i&o cath me and it was wonderful not having to drag the bag around all the time (those things are not made for active people with small children) but... I felt miserable asking friends and family to do that for me so often and hated being that dependent even on those who loved me so much. SOOO....
I went into the bathroom one day, had my best friend sit on the floor, and I said "how far is the opening from the rough stuff I feel with my finger?" She replied, "the rough stuff is the opening of your vagina, come up just a bit" and you know what happened? I GOT THE CATH IN!!! It was difficult and took lots of practice before I was real comfortable but my life is soooo much better.
I still amaze some of the people in the medical field who said it was impossible to not be able to feel, to have so much weight in the way, and to do it one handed. But it should not be this way. We should be encouraged, I could have been free from that catheter from the first day. Anyway, I am now a volunteer at all the area hospitals available anytime they have a patient who needs to learn to cath and is difficult because of size, or whatever.
I hope this story at least livens someone’s spirits.
Thanks for letting me share.
MARY’S CATHING EXPERIENCE
Lots of posts about bladders etc lately....it seems that people are given different advise about emptying etc....I think that each person has to work out what is best for them once they get used to their new body!!! I was seen by a continence nurse within 3 weeks of my operation and was told about the importance of drinking a lot, cranberry juice, avoiding caffinated coffee and alcohol. I was also told to only catheterize 4/5 times in 24 hours, so that my bladder would not become smaller and smaller. I have made the decision to carry on catheterizing because I can't feel when I have an empty bladder and so have no confidence in pushing .....I think this would make me keep trying to pee more often which would not be convenient at work or at night. At the moment I can go all night without having to get up to pee and don't leak.
I have now ignored all the advise about drinking a lot and avoiding coffee, alcohol etc. because I think that my bladder was used to it before and I can't make myself drink loads...never feel really thirsty. I now catheterize when I would have peed before....about 5 times in 24 hours. I don't leak because I take a drug called Detrusitol (Tolteridine) which stops the bladder from contracting involuntarily (this happens when you have a bladder which does not have normal nerve activity). I tried stopping the drugs recently but started to leak again, so it definitely works. This is the only drug I take.
I don't have infections now because I can tell very early if it is coming....when I sit on the loo and catheterize I can tell by the smell of the urine....I then use a urinalysis dipstick which shows if there is any nitrite in the urine....this means that an infection is beginning. I then take a drug called Trimethoprim which is a urinary antibiotic. It is used daily by many people including children with kidney reflux, to prevent infections. Since I have done this I have not gone on to have proper infections. I don't like cranberry juice so have stopped that but did buy some concentrated tablets ...maybe they work but are expensive.
I don't think that reusable catheters are used much in Britain...I was given a selection of different makes to try by the continence nurse but they were all disposable and you just add water to make them lubricated. I like one called Easicath because it is small, so easy to store loads and I can put it in my pocket when I go to the loo. They cost the NHS about £1 each, so in a year I must use £2190 worth. I just pay £80 a year which covers any medicine or catheters that I need. If I was unemployed or registered disabled it would be completely free. At least we don't have to worry about insurance here as all treatment is free at the point of contact.
I can cath in any position!!!! Standing up is useful in public loos. I am surprised that some of you had Foley catheters in, as it is much better for the chance of recovery to have intermittent.
I feel as if I need to pee and poo all the time.....this is confusing to start with but after a year or so I got used to it...just ignore it now.
When I was in the hospital after my surgery and was wearing the catheter with a bag (isn't this called the Foley Catheter?), this physiatrist came into my room (I thought, what the hell is a physiatrist?) and explained to me that I had less than a 50% chance that the bladder would ever come back. I was shocked and terrified. He then went on to explain that I would just have to learn to do intermittent catheterization. I said, what is that? He explained that I would push this tube (catheter) into my penis 8 or 10 times a day, whenever I had to urinate and that is how I would do it, probably for the rest of my life.
I said, "No Way!" Every time they put a catheter in me at the hospital, the pain was excruciating! I said I would never do that. They had a nurse show me how to do it myself and it hurt like hell. She said I would just have to get used to the pain as I was going to do this the rest of my life. I was devastated.
When I finally returned to Connecticut and met with a Urologist he said he would be willing to change my catheter every few weeks, because he understood how bad the pain was. Do you see the common thinking here? They all agreed it was painful and that I would have to learn to live with it. I finally, through my research, met an old guy from Texas who had CES. I lost track of him. But he was self cathing for over a year. When I told him my concerns, he wrote to me and said, "Richard, if you just relax, it doesn't hurt at all." he said he doesn't mind it at all. I finally decided to get on with it. I went to the urologist and he showed me how to use the lubricant, I used a number 12 (I think) catheter, and pushed it in until the urine started flowing. I pulled it out and it did not hurt at all.
The urologist told me to buy 2-3 of them and to boil them for 3 minutes to sterilize them. I went to a medical supply store and bought 100 of them for about 75 cents each. They also had little lubricant kits and the pads that sterilize the penis area. My wife made up kits in baggies with all the necessary stuff in there and I carried them all over with me. I could do it standing up or sitting on a commode. I did it in airplanes, restaurants, you name it. It became very natural and I thought "I really can live with this."
I then read that intermittent cathing can increase the likelihood that the bladder will come back because it fills and empties on a more or less normal basis. Sure enough, about 4 months later, one day I tried peeing without the catheter and it started to flow. It eventually came back to normal in a matter of days after that. So there is a good ending.
The Internet has a LOT of information on both urinary and fecal incontinence. Here are a few of them.