My Body Doesn’t Obey Me

Tags

kidneys, mitrofanoff, sepsis, surgery, uti

Ages ago I had a cystoplasy done plus a mitrofanoff to help me with my ongoing issues with my birth defect – bladder exstrophy. The cystoplasty was actually a re-do from my original one in ’83. When I was sliced open my augmented bladder had adhered itself to my uterus and it was much easier to just re-do the cystoplasty, so in essence I’m on my third bladder iteration (or my second neo-bladder). The goal of all of this was to make my life easier, as my urinary sphincter (yes Virginia, there is more than one sphincter in the body) refused to work after multiple surgeries. I was getting a UTI once every 2-3 weeks, and other embarrassing events.

So the goal was to make my life easier. And in some ways it is. For the first time in my life I don’t have to worry about leakage, wearing pads, and have a relatively clean-cathing process. But the downsides have been massive. When I get sick now, it’s major .. no more simple UTIs, oh no. Now it’s things like sepsis, kidney infections, bladder stones, fungal infections of the surgical site, and though not as many UTIs the ones I get are major.

If I could turn back the clock so to speak I truly believe I would get this reversed, if it did any good. Granted I was on Depends and there was the social embarrassement of that, but atleast I was never sent to the hospital nearly dying from an untreated UTI that decided to turn into sepsis. And if I could I would never had made the decision to do the surgery.

But I have also been reading various bladder exstrophy sites, different urological papers and they tend to agree with one thing. Anyone, just about anyone, who catheterises has a greater chance of sepsis than someone who uses their urethra in the regular way. So I could have gotten the sepsis if I hadn’t had the surgery, I don’t know.

All I know is that I am very tired of my body not obeying me. It’s breaking down and there’s nothing I can do about it.

I rushed myself to the ER yesterday cos I had abdominal pain, and it wasn’t the pain I was getting this year associated with gall bladder issues. This was a different kind of pain, with major spasms .. very similar to the spasms I had last year before I vomitted blood, passed out, and got intibated while being rushed to ICU.

I am scared. I cried last night out of frustration and fear.

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Stoma & UTI

Tags

blood, rosebud, stoma, surgery, urology, uti

My little rosebud is hurting, badly.

Went to a walk-in clinic yesterday, cos I couldn’t wait to see my regular GP. The visit was amusing for myself, though I was partially doubled over in pain. Because of my medical history I am not your average everyday patient who can be found sitting in a medical clinic’s waiting room – I don’t go in cos I have a splinter in my finger, a slight cold, or I stubbed my toe whilst vacuuming about the flat. I go in to see a GP cos I need meds, no other reason – and I really hate taking meds, I try to avoid it all costs.

I was amused mostly because of the reaction I got from the doctor. He had this world-weary look on his face, prolly thinking that I was yet another stupid bint coming in to complain about allergies or something equally minor. He asked me what I thought the problem was and I said I am feeling some severe abdominal pain in and around my stoma. As soon as I said “stoma” his ears and eyes perked up — I wasn’t a normal run of the mill patient, I had an interesting history.

He made me take my trousers off and expose rosebud to him – normally one does not need to expose one’s stomach when coming in to get a UTI handled. He just wanted to see rosebud; took off the dressing I normally keep over her so that my underwear doesn’t irritate her… the dressing was soaked in blood, so obviously there was something wrong. He wrote out a script for me and I expressed a desire for a urine culture to be taken – his response being that they do not keep size 14FR catheters at the clinc.. I laughed and asked how he thought I drained during the day, I keep a “pee kit” with me at all times.

So he agreed to the urine test and I was fully prepared to go to the obligatory toilet with little cup but was told to stay still, a nurse would be coming by. I got 2 nurses to “help me” while I cath’d – one was a student nurse who had only ever seen pictures of stomas and another who wanted to bone up on the topic. So while I was draining I was peppered with questions.

I am to go back in for an ultrasound as the doctor was not happy with the abdominal pain and the fact that rosebud is bleeding profusely. There is a fear that I may have bladder stones or some other such nonsense.

I am currently hopped up on codeine and am taking Noroxin at 400mg x2 for 7 days. Hopefully it will work.

I hate taking Noroxin, mostly cos prolonged exposure to the drug can cause kidney damage – or atleast that’s what my urologist tells me. Plus it gives me insominia. The next step up is Levesquin – both are in the “floxin” family of drugs, but Levesquin makes my heart race super quick, which freaks me out.

I am due to see the urologist on April 6th for another of the many endless post-op visits. If I didn’t have a stoma I would be due for my bi-annual cystoscopy and urodynamics – but can’t have that with a sealed off urethra, I believe.. definately not the urodynamics; the cysto I can still see happening as it’s just a scope threaded into the bladder to check in the inner lining, and that can easily be done through the stoma.. I think.. the biggest that rosebud has been exposed to is a size 14FR and I think the scope tends to be more like a size 16FR or 18FR.

Meh. Either way, I am in pain, miserable and want my blankies.

Exstrophy

Tags

bladder, exstrophy, reflux, uti

I nearly fell out of my chair this morning, laughing – and not because something was funny, but because how one person was quite delusional.

I was born with a condition called Bladder Exstrophy. I my case I have the “classic” textbook case of it, that all med students would study. It’s not a condition that goes away. In all my years of living with it and meeting others with it, we do achieve varying degrees of “relief” from the effects of Exstrophy but it never disappears – it’s a life long situation.

On one discussion forum one mother refuses to acknowledge that Exstrophy cannot be cured. It’s not a disease, as you cannot pop a pill and hope for the best. It’s a series of physical malformations which have the side effect of bladder refluxes (urine going back up into the kidneys, which can lead to a higher incidence of Kidney Infections – I have “grade 2” reflux and I do get a few kidney infections a year, not to mention the UTIs), increased chances of UTIs, and other “hardships”. This particular mother believes that if she keeps her son on a purely non-processed food diet and with his upcoming surgery he will be “cured” and he will no longer have exstrophy.

I laughed, because this one is so deluded that she’s doing a disservice to herself and her child. I have never heard of anyone being “cured” of exstrophy, you can’t be cured from a physical malformation. At some point in the near future, when her child has some other complications from his exstrophy she will breakdown.

Blasted Body!

Tags

uti

I really really really want this surgery to happen. I am completely annoyed with this sack of flesh. I have another bloody f*cking UTI. It’s a bad one as well.

Oh yeah! Blood, abdominal pain, back pain, nausea… I think it has progressed very quickly from a UTI a Kidney Infection.

I’m off to the pharamacy to try and get some T1 – can get those over the counter, thankfully.

That’s it! I need a new body!

Tags

uti

It never fricken ends!

I went to the ladies this afternoon, as I usually do so that I can avail myself of the facilities, and lo and behold….blood.

2 days before I wing off for my holidays in the sunny climes of Scotland and I have a bloody f*cking infection.

It never ends. I will state that henceforth I am on the lookout for a new body. Obviously this decrepit excuse for a functioning sack of flesh isn’t working out to expectations.

ack! blood!

Tags

uti

I am tired of my body. Can I please exchange it? I don’t have a problem with its plumpness (well I do, but it’s not a major issue), but with it not behaving like I would like it to.

Blast it all! Another bloody fuckin UTI. It never ends. Thankfully I have my meds for it, but I am still not happy about this.

Can someone please let me know how I can make a body exchange? This body isn’t working out to my requirements. It is defective and I’d like to return it.

It never ends!

Tags

uti

I was good this time. I drank lots of water, took my vitamin C and zinc tablets. Made sure I wasn’t exposed to anything that could potentially contribute towards the development of a UTI. I slept as much as I could, tried not to overtax my immune system.

And the bleep happens? Yup, a bloody frickin UTI again.. 

I hate my body. Most women hate their bodies because of image issues (I’m not thrilled with my own size either) – but I hate mine because it keeps failing me. It isn’t serving my needs and I need a new one.

blast!!

Tags

uti

I don’t know if my having blood in the urine is due to the infection never going away (and I have been seeing specks over the past week or so) or the fact that when the Clinic called yesterday I started thinking that there should be blood.

I have blood – that is a fact.

But how did it get there? Was it always there, or did my mind conjure it up?

Anywho, all I can say is that I am sick and tired of my body failing me like this. I’m old! Decrepid! I need a body transplant!

got a call from the medical clinic

Tags

uti

Got a call from the medical clinic I went to a few weeks ago, with my test results. Seems the meds they gave me are too weak and resistant to the strain of bacteria causing my UTI.

Dah!! At the time I told them that I am not thrilled with the meds they were prescribing me – stuff which is about strong enough to knock out a minor sniffle, but useless for everything else.

So, I’m off to the clinic tomorrow to get a new script. I think I should remind the doctor that according to established findings by urologists & nephrologists (kidney docs) that it takes approximately 10 days for a UTI to spread to the kidneys and cause possible damage to the tissue. The fact that it has taken them over 2 weeks (well past the 10 day mark) definately does not thrill me.

Blasted General Practicioners!

I’m going to to do it….

Tags

uti

I will go to the doctor – for the blasted infection that came roaring back with a vengence.