I have had MS for 23 years and have experienced urinary incontinence from the first, sometimes bowel as well. For the purpose of this discussion, I will stick with urinary incontinence and what I have done to win that battle. I will also explain the next step I am willing to take.
After 11 years of fighting incontinence, and losing, it was determined that, because of the very small volume of liquids I was drinking was causing damage to all the organs in my body because of excessive dryness. My neurologist suggested I should get a catheter.
I chose the supra-pubic catheter for many reasons. The primary reasons were that it would not have to be managed through my urethra, it wouldn’t interfere with sexual intercourse and I would be able to drink as many fluids as I wanted.
I was informed the catheter could be expected to work for 5 to 20 years. Twelve years later, I would do anything to keep it, including BOTOX injections into my bladder.
Why would I take what seems like such a drastic measure? Or is it outrageous at all?
About a year ago, I began to leak from my stoma. The stoma is the place in my lower abdomen where the catheter was surgically implanted in 2001. After much frustration and serious contemplation, I have decided to do as the doctor recommends and undergo the BOTOX procedure, which is very likely to fix my leaking.
In order to be sure Medicare and my insurance would cover the high cost of this procedure, I had to undergo a urodynamic study. This is not a dignified experience, but I felt no pain and the results revealed troubling problems.
My bladder is very spastic: no surprise there. Additionally, its pressure is extremely, and even dangerously high. This combination, especially the high pressure could do severe damage to my kidneys if allowed to continue. I am not willing to keep leaking or damage or lose a kidney.
The benefits of using BOTOX to eliminate these potential problems, are that it should fix the problem for six months to a year, at which time it will need to be repeated. The active action of this treatment is to paralyze my bladder, which is a muscle, so it will eliminate the spasms and high pressure and leakage.
The process will involve having my bladder filled with a numbing agent for about half an hour. My catheter tubing will be clamped so the anesthetic agent will not leak out. Once I am sufficiently numb, the same kind of tubing, with a camera on the end will be inserted through my stoma in the same way they use for performing a cystoscopy, which is for me an annual test to ensure my bladder is healthy.
Using this device the doctor will be able to inject 20 shots in various muscles throughout my bladder. I should not feel pain during the procedure or afterwards. The entire process takes about an hour: half hour for the numbing and another half hour to get the shots.
Am I afraid of this? Absolutely not! I have nothing to lose and potentially a lot to gain. I trust my doctor implicitly and know he would never suggest anything that could harm me. He has done this more times than he can count.
I cannot be any worse for the effort and I expect to be much improved. I will submit another article after I have undergone this treatment to let everyone know of my experience.