As some may recall I had a gall bladder attack in early December. I was admitted to Southampton General Hospital, apparently with the goal of taking out my gall bladder. That did not happen, due to me. Now jump forward 6 weeks later.
I had an appointment to see the General Surgeon, one Mr Hilal. Is he a good surgeon, I don’t know. I don’t know much about him. I fully understood why I had this appointment, though it was never discussed when I was being discharged — they wanted to book me in for surgery. In early December I said I wouldn’t agree to anything unless a urologist got involved. I have yet to see a urologist so I won’t agree to anything until then. This was made abundantly clear in December, but maybe it was assumed I’d change my mind, but that was what happened today – pressure to sign off on surgery.
I was taken into an examination room by two medical students – I always ask what year they are in as I want to know how much education they’ve had before they try poking me. I gave my medical history. I am not surprised they had never heard of a mitrofanoff but I would have expected them to at least heard a bit about Bladder Exstrophy. Sadly I was asked how often I change my catheter, even though I said I catheterise intermittently. I don’t have an indwelling catheter, and I made that abundantly clear. Sadly I don’t think they were paying much attention to my answers.
Then a General Surgeon came in, don’t remember his name, some young fellow. He took a peek at my abdomen and said oh yes we can do this laparoscopically. I said no, you wont’ be able to, it has been tried before. It was hinted that Canada is a backwards country when it comes to surgical procedures cos they weren’t able to do it with the laparoscope in June. I said it would have to be a full surgery. Oh this doesn’t look too difficult, let’s schedule the surgery. Wait a minute, I refuse to sign my consent until I see a urologist. So then Mr Hilal walked in, after I kept saying I refuse to give consent until I see a urologist.
He said oh we’ll start with the laparoscope first and if that doesn’t work we’ll just enlarge the incision and do a full surgery. Hmmm if I give consent, I think to myself, it would be for the smaller surgery .. just try and slice me while I’m under, without my consent, and there will be a lawsuit. Again, I had to remind him that I told him in December and I’m saying it again – no surgery until I see a urologist.
Because a general surgeon is a one off to me, with regards to developing a relationship with I don’t really care much about them. But for a urologist I need to develop a relationship and make sure they are right for me – as I have to cope with them until I either move, die or they retire. So I need to find the right now. I have an appointment with Mr Birch, but I need to make sure he can take care of my urological issues.
So my question to myself is – are all UK surgeons so slice happy and impatient? Are they so used to pressurising their patients into agreeing to their whims?
Carlene Bonner said:
I have so enjoyed reading your blog, as I have never encountered anyone who has had the same urological procedure as I — and certainly never encountered anyone who has had the issues of staples becoming stones and causing recurring UTI’s. I have found most of the medical community to respond in stunned silence when I explain this strange phenomenon, and I was convinced I was the only person in the universe to have encountered this problem. My procedure, which I know as an “ileovesicostomy” here in the U.S. was done about 7 years ago and has been somewhat of a disaster. While it was designed to allow inermittent catheterization, that turned out to be impossible as the top of the stoma never healed and would grow together each time I took the catheter out. So, we are back to an in dwelling catheter and all the fun that goes along with that. Mostly I struggle with recurring infections – partially due to the staple stones. I would be curious to know why you had your surgery? For me, I was an otherwise healthy woman whose urethra completely scarred through and closed up. Why? Nobody knows. After three years of a SP tube, it was decided that the ileovesicostomy was the best possible solution. This came from the top docs at Duke University and UNC Chapel Hill in North Carolina. They did put an augmentation patch on my bladder which gave me capacity and calmed the horrendous bladder spasms to some extent. I’m extremely impressed that you are comfortable blogging about such intimate matters. What has the outcome been for you with the staples and stones? Does that problem persist? For me, I have now excreted five stones, and I fear there will be many more to come to cause havoc and regular cystoscopies which are done under general anesthesia through the tube since my urethra is, well, unavailable. How often do you have infections? Are you struggling at all with antibiotic resistance? Are there any tips or tricks you have up your sleeve that you have learned over time since your surgery? Yes, I’m being nosey and intrusive. My apologies — it’s just a very comforting feeling to have encountered someone with some of the same issues. I would love to hear from you.
opinionatedbean said:
Hi Carlene,
I was fortunate in that my parents and surgeons (when i was a kid) drummed it into me to never be ashamed of my medical situation – that this is my normal and there is nothing wrong with it. And that’s how I approach it on my blog, my exstrophy is a major part of my life and has helped to shape and define me as a person. Love me, love my stoma
The staples are gone, I believe, but I seem to be one of the lucky few who develops stones easily. It just means I need to flush – by drinking lots of fluids every day (I aim for about 3L) and periodically done a bladder flush with some sterile saline & a syringe, via my catheter. I also get cystoscopies fairly regularly, but the last time I was under a general anaesthetic was when I was a child. My urologist in Canada would just use lidocaine (topical anaesthetic) to freeze the area so I wouldn’t feel the insertion of the cystascope.
Number of infections? I get about one a month, but they tend to be quite minor and I try to ride them out. Ones that require antibiotics? About 6 a year. It used to be much worse for me before the mitrofanoff, I used to get 18 a year. I do find that when I have bladder stones, they soak up the bacteria from the infections and when a piece breaks off I get reinfected – so I try to get the stones under control. Dr Herschorn would use a laser, via the cystascope, and zap the little sucks and then pull the fragments out with what he called a “cage” – basically a three prong grappling thingy.
What sorts of tips and tricks are you looking for? I do find that when my mucous level increases that’s usually an indication that there is an irritant in the bladder, usually an infection. Drinking pop/fizzy drinks causes an increase in mucous and makes the urine more cloudy, so I try to drink water or squash (similar to Crystal Lite). I always pay attention to my kidneys, and try to keep track of how much I’m drinking in relation to my urine output .. if what I drink comes out roughly in the same amount I’m good. Kidneys are a bitch to replace (grin) but as you know it is always possible to augment a bladder to increase its capacity. So blader health is important, but I always focus more on my kidneys .. I tend to get kidney infections, and each one slightly reduces their function .. and a UTI can so easily spread to the kidneys.
I do have some resistances to antibiotics – I tend to take cipro, macrobid and septra, though I have taken levequin and keflex. I’m allergic to penicillan, so those drugs are out. Occassionally I’ll bully my GP into giving me a script for gentamicin – which is an IV medication, but I do a bladder wash with it. I learned the trick when I attended an Open House at the Hospital for Sick Children’s Urology Department. A Dr Khaury suggested bladder washes – they are safe and it doesn’t involve getting drugs into the bloodstream. It goes like this:
-get a vial of some IV antibiotics (he suggested gentamicin) & a small needle
-pour some sterile saline into a basin, about 30-60CC
-take about 1/2CC of the antibiotic with the needle and put it into the basin with sterile saline
-empty your bladder but don’t remove the catheter
-fill your syringe (the big one) with the contents of the basin (saline & antibiotic)
-inject via catheter into the bladder
-do not pull out the contents, leave the solution in the bladder but take out the cathter being careful to not allow any of the fluids out
-when you need to pee just cath as normal
-the solution should be once or twice a day for about 5 days
Carlene Bonner said:
Thanks so much for your comments — I am of like mind when it comes to all my “external plumbing”. Unfortunately, I do have an in dwelling catheter at this point, so infections are my greatest challenge. I have already migrated past the Gent flushes (doing it twice a day for 21 days didn’t touch my last bout with psuedomonas), so I have moved on to IV antibiotics. I am quite certain it is the staples becoming stones that are the villians in my case, and my Uro believes there are many more to come — likely from the bladder augment. I do avoid any type of soda and still struggle with the mucous. I do at least two bladder flushes per day with saline, 60 cc along with a couple tablespoons of good old white vinegar, in the bladder for two hours and then drain and re flush with more saline. Painful, but does the trick for the most part. In any event, I am so happy to have stumbled across your blog — you are clearly living a far more active life than I, and I am certain to draw inspiration from your “musings”.
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