Living with bladder reconstruction - my story.
Created | Updated Sep 22, 2018
This is a companion to A87708351 Radical cystectomy & bladder reconstruction - my story, which itself is part of my Bladder Cancer story A84415403.
After major surgery on Thurs 1 Sep to remove my bladder and create a replacement out of a piece of intestine, I have to wait for the new plumbing to heal before using it. In the interim I have various drainage tubes & bags attached to me. I go home after a week in hospital. On Tues 13 Sep I visit the hospital for a cystogram, to check for any leaks.
Thurs 15 Sep
Arriving at the ward, I'm sat in the treatment room and a cannula inserted to give me antibiotics. Late morning my surgeon arrives, along with the new female consultant. He goes through his talk about the technique & regime for using the new bladder & leaves me with the lady to check my pelvic floor. She does this via a rectal examination which startles my muscles but I manage to demonstrate an acceptable pelvic floor contraction. Then Sister removes the soft drain & catheter and gives me a large incontinence pad. I'm surprised to find I don't immediately leak. I enjoy lunch while waiting for a bed - I'm given a single room. Daily anti-clotting Clexane injections are restarted (which I will have to do myself for the next 6 weeks) and blood tests are done.
Now the regime starts. I have to attempt to hold urine for two hours, then empty my bladder. All my output has to be measured, so there is a cardboard dish in the toilet to collect urine and my wet pads (I change pad every time I go to the toilet) are weighed. As the bladder fills I experience pain in my abdomen and lower back pain as well as nausea which is dismal - along with leaking involuntarily. I had expected a continual dribble, but it seems to come more in spurts. (I surmise this is due to peristaltic action of the bowel used to form the neo.) I set an alarm clock to get up at 10 pm, midnight, 3 am and 6 am in case the nurses forget to wake me. Not much sleep.
Fri 16 Sep
Grim. Clock watching, enduring each two hours until I can go to the toilet. I try to use pelvic floor muscles to stem the leaks, but it still comes out in spurts. The specialist nurse seems surprised at my extreme discomfort. I retch (into yet another cardboard dish). Voiding is not that easy but I am getting some urine out. In the evening they teach me how to self catheterise - this is done to check how much I'm retaining. Rather a lot! Because of the sickness, I'm put on a drip overnight. This means I soak both pads and the bed overnight and into the next day. They keep asking how much I've drunk - they didn't mention they need to measure input too. Eventually I'm given pencil & paper to record cupfuls consumed.
Sat 17 Sep
Poor appetite but feeling less discomfort. The first half hour or so is comfortable, then the pain builds over the next hour and a half. However, my output is increasing. Once I achieve 170 ml which the consultant says is showing off! Sometimes it's easier than others. I manage to self catheterise - relatively easy and not uncomfortable. They've given me male catheters which are very long. The catheter is coated, with a sterile water sachet at the top of the pack. Squeezing the sachet releases sterile water down to wet the catheter ready for use (after 30 sec). The plastic package tears into sections so there is a holder to avoid needing to touch the catheter itself. Then the whole lot is discarded after use.
The stents continue to leak occasionally - I have to empty the bag into yet another cardboard dish to be measured.
Sun 18 Sep
I discover the pain is less standing, so I do a lot of leaning against the wall, looking out of the window and pacing about. The last half hour is the worst and I'm still getting a lot of lower back pain as well as abdominal. Enormous pad pretty soggy each time. My appetite is picking up again and I have a few walks down the corridor. The nurses arrange a delivery of catheters at home for me.
Mon 19 Sep
Continuing much the same. The consultant says if all the results are good today, I can go home. The daily blood test results are fine - they are checking the pH level. Because the new bladder is made of intestine, it absorbs substances from the urine and this can cause acidosis. I'm taught to give myself the Clexane injections in my abdomen. This time I keep asking for permission to go, I don't want to wait until evening ward rounds. In anticipation, I get dressed. The registrar has to contact the consultant and eventually gets the all clear. I get my Clexane supplies, a plastic measuring jug, paper charts (for intake & output), a bag of pads and final instructions from the specialist nurse. Home I go about 6 pm, leaving a thank you card and box of biscuits for the staff.
I set my jug up in the bidet & put the chart with a pen on the shelf behind.
Wed 21 Sep
First follow up with the specialist nurse - felt quite wobbly and frail. Already continence is improving, managing voids of up to 280 ml with 60 ml residual when self catheterising in the evening. Rather loose bowel movements prevents me measuring every time. I still have to set an alarm twice in the night. Stocking up on loose, elastic waist or drawstring waist easy wash trousers was really useful as I do have a few accidents from over full pads. Having managed to walk up to half a mile in my week at home after the major op, I now have to build up again. Managed first household task - emptying the bedroom waste bins!
Sun 25 Sep
I'm dry for an hour or so after voiding, then leaks start - pelvic floor reduces the speed of flow rather than stopping it. My day revolves around toilet visits - time spent in the toilet, then a dry period when I can be active eg use the computer or have a walk. As I start to fill & leak, I tend to stay sitting until I feel I have to empty. Then a slow mince to the toilet to start again. Meals & snacks fitted in to suit.
I'm fed up with the stents leaking (requiring bag emptying) and the wound getting very sore and mucky. I remove the bag and taped over the stents with elastoplast. This seems to do the trick and the wound starts to dry out. Still quite sore. I'm starting to do a few gentle household tasks and walking further - up to a mile. Weekly blood tests - all still OK. The weather is unusually hot - not so pleasant wearing surgical stockings.
The District Nurse has arranged an order of incontinence pads for me. Two large boxes arrive on Sep 30 - 4 pks of 28 Euron Flex super pads (1800 ml) and 4 x 28 Euron micro super plus (1000 ml). A leaflet gives me instructions about re-ordering and amending the order. The bedroom, bathroom & toilet are now full of assorted supplies.
Wed 28 Sep
Another weekly visit to the nurse - feeling much stronger this week, but still walking slightly bent over, supporting my abdomen. Results erratic, but I can now hold up to 350 ml. I have to change pad every time I void which is now 2 - 4 hours according to time of day. Residual, measured each evening varies from 50 - 200 ml. I have the regular blood tests - venous base excess - to check that I am not getting acidosis.
Wed 6 Oct
Five weeks post op. Doing more household tasks such as the laundry. I have to put up with leaks & discomfort as I fill, in order to achieve stretching of the new pouch. Getting more consistently 350 ml with residual down to 20 ml on occasions & generally less leakage. Managing to stay up a little later so that I only have to get up once at night - a bit of a trial with the light on to do measuring. I investigate getting a night light. I'm using 2 maximum pads (1800 ml) at night & about 4 smaller pads (1000 ml) daytime.
Thurs 13 Oct
A good week - cooked dinner one day and doing some paperwork. Still scheduling activities round toilet visits, but the time between these is extending to 3 - 4 hours, more in the morning. Attended a local coffee morning and chaired a committee meeting. Everyone tells me how well I look. I conclude it's because I am drinking so much more than pre-op. I am to have at least 2 litres each day. Felt good to be doing normal activities again. Can only stand for a short while before abdominal discomfort. Still some twinges with certain movements and tender wound - it's easier turning over in bed now. I tire easily and still have some difficulties concentrating. Allowed to discard the surgical stockings - just as the weather turns colder! Today I reach the 500 ml maximum capacity (after just 4 weeks) and residual down to 30 ml, so I am allowed to drop catheterising to every other evening. I'm also allowed to not measure if I void when out - so far I've always been at home to empty. Bowels pretty much back to normal.
My supplies of pads are not going to last so I call the District Nurse. However, the NHS permits only 4 pads per 24 hours. I search online & find a suitable supplier - I order a few packs of Tender night plus & day plus.
Wed 19 Oct
Now I have reached the magic 500 ml capacity it is difficult not to go further as the sensations of fullness & leakiness vary. I go to the ward again, for stent removal. I feel a bit low after having attended a village event at the weekend and found it very tiring seeing lots of people and slightly upset not being able to join in as I normally would. I'm also taking antibiotics in preparation for the hospital visit, which have given me very loose bowels. They don't have a bed ready, so I sit in the waiting area for a couple of hours. I'm admitted just in time for lunch, a single room in the gynae section. In the afternoon a nurse first cuts the stitches - rather a sore process - then pulls out each stent in turn - a painless procedure.
Then follows a long afternoon and evening having obs at intervals - no visit from doctor other than to take bloods. A very disturbed night as I'm opposite a storeroom which is frequently visited, accompanied by the door banging each time. However, temperature stays normal although bowels still very loose so I'm not able to record urine output properly.
Thurs 20 Oct
I'm disappointed that the morning round is headed by the lady consultant (instead of my surgeon), who gives me the OK to go home. But I have to wait for more blood tests and the specialist nurse. She pops in but goes away again, eventually returning about 1 pm. Home by 2 pm and I manage choir rehearsal that evening - so much more comfortable without the stents, although the wound is still sore. I can wear jeans again.
Fri 21 Oct
Celebrated my son's birthday by having lunch out, which went well.
Mon 24 Oct
Drove the car - short trip with hubby in case of problems. Checked I could do an emergency stop without pain. felt fine.
Thur 27 Oct
In a fragile mood - feeling absurdly upset at not having seen my surgeon last week. I'm keen to be a star patient. A mix up at the GP's surgery about an appt to renew my medical certificate has me in tears - turns out to be productive as the receptionist gets it sorted out quickly. I'm signed off work for another month, which is OK - I don't feel I could cope with going to work in my present state. Fri 28 I see the nurse again. Voided capacity has been getting much worse with residual creeping up. The nurse is reassuring but I'm anxious about over stretching.
Wed 2 Nov
Two months post op. I'm picking up all my leisure activities again, but haven't much stamina. My abdomen is looking much smoother now - the scar measures 9". The nurse repeats advice about technique to void - relaxing pelvic floor, trying different positions. I decide to catheterise in the mornings as well to feel more comfortable, although I got the impression they prefer limited catheterising.
Wed 9 Nov
Have managed a gentle Keep Fit session without any significant leakage - can do fast walking again. Voids now no more than 360 ml & residual catheterised up to 395 ml. A registrar suggests I catheterise midday too. I'm much drier now, using ordinary Tena pads by day (sometimes one lasts all day) and with plenty of stock in hand, order only night pads from the NHS.
Mon 14 Nov
I'm still feeling full nearly all the time. I try voiding more often, when I feel I can, and have a miserable day spending 15 mins every hour or so in the toilet. So I decide to catheterise every void - what relief to be emptying fully each time. Having browsed online, I order the female version of the catheters - just the same, but shorter. They should be easier for taking out & about. I find they're flexible enough to bend in half to fit a small zip bag. However, it's a bit messy opening them as they have the same size water sachet as the longer ones.
The nurse agrees that catheterising each time is sensible but decides I should be seen again by the consultant sooner rather than later. I run to catch the bus without a second thought - very pleasing.
Thurs 24 Nov
Voiding ability has dropped right down to about 100 ml, but I'm managing the intermittent self catheterisation fine. I have a clinic appt booked for 4.15pm but at 5 pm a nurse comes to whisk me off for blood tests before they shut for the day. She tells me both consultants are there which is good news. It's my surgeon who comes in to see me. He's pleased with my recovery and no sign of hernia (& no bag!), so tells me I can start doing more. I tell him I'm very happy that I made the right choice for me. He confirms the clear pathology report and gives me 90-95% chance of being cured, which is the best news possible. The only check I need for 3 months follow up is a renogram, which is already booked. He's not happy with my problems voiding - he asks if I'm taking anything. (Apparently some medicines can cause this, but I'm not taking anything prescribed or otherwise.) I feel he thinks it's my poor technique or some other failing. He suggests a cystoscopy to see if there is any obstruction (obviously thinks this is unlikely) and books me on his list for 23 Dec.
Tues 29 Nov
My first experience of using a public toilet yesterday. A bit messy with these shorter female catheters but I manage OK. Today I make a visit to work (a long train journey) very successfully. Great to be somewhere different, seeing my colleagues again.
Wed 30 Nov
I have the renogram. This involves drinking plenty in advance and a pint immediately before the test. I also have to empty my bladder - catheterising when in a hurry never goes as smoothly of course. Then I lie on a padded table while they give me an injection of radioactive dye. For about 20 mins pictures appear on the screen above my head - the imaging machinery must all be under the table. About part way through they inject a diuretic. Then I have to empty my bladder again - this time in the 'female radioactive toilet'. By the time I get home, an hour or so later, I am bursting to go again and overfull.
Tues 6 Dec
Three months post op. First proper day back at work - feels good to be 'out in the real world' with people who don't all know what's been happening to me. I'm careful not to stand for any length of time and I'm glad to leave earlier than usual. Just doing one short day a week for the moment. A little bit anxious about timing toilet visits but manage OK. Problems sorting out the mandatory referral to occupation health as they don't work the same days as me!
I'm getting fed up with disturbed nights, waking by alarm to void (by catheter) & change pad if necessary, so decide to put up with wet pads and stop setting an alarm. Wonderful to sleep through a few nights. Daytime can still sometimes void a bit - occasionally up to 50%. I'm in a fairly comfortable routine & timetable of voiding associated with keeping up a minimum 2 litre intake each day.
Sat 10 Dec
At lunchtime I get a call from my surgeon offering to bring the date forward to Thurs 15 - actually for his benefit. Doesn't fit so well for me & I still need to see Pre-Assessment as well as being expected in at work, so we stay with the original plan. I go to Pre-Assessment on Fri 16. The nurse thinks I've lost a bit too much weight & suggests a liquid multivitamin as well as more snacking.
Wed 21 Dec
At night, the wet pads are now waking me up - so I go back to getting up at night, but this time rely on waking without setting an alarm. If I go to bed at 10 pm, I usually wake about 3 am and then go through to about 8 am.
It seems I have bacteria in my urine (quite normal for a neobladder) & have to go to my GP to pick up some antibiotics. Fortunately this one does not have any ill effects. I've had a letter from the lady consultant with good results from the renogram and saying she'll see my for the cystoscopy, so I am expecting to see her on Fri, not my surgeon. I have a cold - oddly good to have something normal wrong with me.
Fri 23 Dec
Back to DSU -usual procedure, ready for action by 7.30 am. Aneathetist is happy that my cold is not a problem. I appear to be privileged as it is my surgeon who arrives about 8.15 am, despite a nurse telling another patient that he's 'busy on a big case'. He has disappeared off by the time I'm back on the ward at 9.00am. I have a drip in when I come round, which I haven't usually had - whatever is in it perks me up no end! The lady consultant comes round to say all looked fine - which she says is good news, but I feel it means the problem is me. She says I have a very strong sphincter muscle which keeps me continent, but I need to learn to relax it. So back to clinic in a month. I carry on with my routine, making sure I don't overstretch my new bladder.
Fri 30 Dec
Managed to cook Christmas dinner but had a rough few days with my cold, coughing making my abdomen sore. Post anaesthetic fatigue too.
2012
Mon Jan 6
Four months post op. I order more night pads - usually only use one per night now, so quite a good stock. Using ordinary Tena Lady for daytime, mostly for reassurance. Have managed the 3 long flights of stairs up to the canteen at work.
Mon Jan 23
Clinic appt with my surgeon. As he says he expected, there has been no change in my ability to void - slightly worse if anything. I am to restart weekly visits to the nurse. Consultant wants me to increase vol again and be more consistent. I'm sceptical and feel he regards me as a failure. I also have routine bloods & chest X ray, setting the pattern for follow up. I ask about making a long haul flight in April & he declares me fit to travel. I go home & manage a 50% void!
Fri Feb 3
Five months post op. I feel tired and crabby. Only significant voiding success when vol too high. I keep persevering but it takes about 10 mins to get 30% out. Nurse asks me to measure even when out - which means taking a jug to the toilet when I'm at work. (Now doing my usual two days each week.) Over the next few weeks I am obedient but get fed up - I am fatigued and still very inconsistent in both voiding ability and capacity - detecting fullness. My capacity is back up to 500 ml but sometimes I under or over estimate. Nurse is encouraging that it may just be I am one who has to catheterise though not what was intended. Says surgeon is keen to get me voiding if possible, may want to investigate further. I feel I just want to be left to get on with the catheterising & stop all the measuring. (I have found info on the internet that says up to 40% females have to self cath.)
Fri Feb 17
Nurse suggests I try not catheterising if I get a good void. One lunchtime I manage 300 ml, but all that happens after that is voids of about 200 ml every 1.5 - 2 hours & I give up when I start to feel too full. I'm managing a more consistently high volume but still no improvement on 45% void at best. I'm still going to bed fairly early and wet during the night so managing 5 voids per 24 hours. In between all this, I'm carrying on life OK!
Fri Feb 24
Feeling very fed up & tired, not sleeping well. Capacity creeping up again too high, so percentage voided getting less when trying at low capacity.
I try different catheters as recommended in an online forum - a compact style. Much neater to carry & easy to use, no waiting for lubrication to activate. The longer male ones are easier for when aiming in a jug. Wonder why nurse didn't suggest any alternatives.
Fri Mar 2
Six months post op. Another time wasting visit to the Nurse although we always have a pleasant chat. When I moan that in the last 6 months have only had one 4 week break without some sort of hospital visit, she reminds me of the commitment needed with this surgery. I counter that I have done all that was asked. (Other than drink all the Fortijuice!)She gives me a travel certificate ready for my holiday - but I have to take it to the GP for signing & collect it another day.
Fri Mar 9
I'm sleeping better & feeling fitter. Still a few firsts, such as doing gardening again. Pretty dry by day now - just using mini pads for reassurance for the slight occasional dribble just before voiding. Leaky at night - using up stock of mega pads but I decide not to order any more via NHS. Now I need 6 voids per 24 hours & am managing to keep up a good capacity. Sometimes I void early to fit in with activities, or time activities to suit.
Fri Mar 16
Last visit before my holiday. At last I am to be allowed to stop measuring & recording for a while. This new plumbing is a bit like wearing contact lenses - you get on with doing normal things without thinking about it but you never quite forget. I try smaller pads for night but not always quite sufficient, so I will need to take the larger ones on holiday.
Sun Mar 25 - Sat Apr 14
Off on a long haul flight. Three weeks supply of catheters in my hand luggage plus a few day & night pads. Manage to time voids & cope with airplane toilet without problems.
Interestingly my body clock takes some time to catch up with the time difference. The first few nights I seem to be on daytime production & am rather wet. Mornings I seem to feel I need to empty earlier than usual, but manage to span the day with usual number of voids. Carrying a bag across body seems to make me feel leaky. No better success voiding naturally. Difficult to keep track of intake but seems OK.
Same problem with shifting back in time on return. I resume measuring & find that I get quite uncomfortable going above 400 ml, but feel I must keep capacity up.
Mon 23 April
Clinic appt, I see the lady consultant. At last I am given permission to carry on catheterising and no more visits to the nurse. It looks as if my sphincter muscle is just too strong & things are unlikely to change. I am quite reconciled to this new way of urinating. I ask if things are likely to change, consultant says maybe try voiding again after a break.
I order yet another brand of catheter to try - a ready to use type which proves good for home use. Nights are now sometimes dry enough for a 300 ml pad, but often need 1000 ml - a step down from the large night pads. At least I don't need a light on in the toilet at night now, I can cope with night vision & street or moon light thought the window.
Sat May 5
Eight months post op. Once the jet lagged passed I felt the post op fatigue had finally lifted & I feel pretty fit and well.
I realise that some tight clothing eg thick jeans make me feel leaky (although I do stay dry) & want to empty sooner than I really need, so I stick to wearing what is comfortable, preferably soft fabric with a high waist. Occasional postural tiny leaks when getting full but dry if don't try to put off voiding. I measure occasionally just to keep track of capacity. Keeping to a routine of intake & activity I can predict approx when I will need to void & can feel the fullness. Seem to need to void at a smaller capacity at lunchtime than later in the day. Interestingly when hot & sweaty often void more often - certain foods have a diuretic effect too. Also suffer more flatulence than pre-op. Nights variable - sometimes wake because leaky but don't get up more than once. I can self void a variable amount form nothing to a modest amount - I count while urine flows which gives me a reasonable estimate of ml.
Fri 11 May
Have a whole 4 pks of the most absorbent night pads unused - I deliver these to the local surgery for collection by the District Nurse. I still have a few in hand in case of emergencies/illness.
Tues July 3
Ten months post op. Now just using Tena liners by day - just some dampness or odd drip when nearly full. Nights still variable from dry to slight or occasionally significant leakage. Managing heavy gardening, salsa aerobics without problem. Clinic again - routine clinic, bloods & chest Xray. I mention that there is more resistance to the catheter when I have self voided than when I haven't. It seems to me that the sphincter just shuts involuntarily. I have measured in the past week, but the consultant waves my charts away.
Mon July 23
As I am approaching one year post op I have ultrasound of kidneys & new bladder. They show me the bladder's peristaltic movements & comment on 'debris' - probably mucous. All is well.
I am gratified to be asked to take part in a project to give prospective patients information. I feel that means my surgeon is pleased with me, but ridiculously I wish he would just once say so!
Sat Aug 4
Nights have been poor - start setting alarm again which seems to help me sleep in the first part of the night & stay dry. Tend to wake early in the morning a bit leaky. I'm sure it will improve with time, but really I'm doing fine with my new habits well established. I measure occasionally just to make sure I am keeping up capacity as I still sometimes misjudge how full I am.
Sun 16 Sep
One year since neo went live. Days really very good now, although I may have the odd spot leak so rely on liners. Still able to self void a bit sometimes though I estimate usually no more than 200 ml. Nights are definitely improving. I've gone back to relying on waking to void. On a good night I wake about 2.30 am, then go through to about 7.30 am with only minor leaks if any. Poor nights I leak early - it's a choice of continue to leak and void on time or void early then leak as the morning approaches. I feel well rehabilitated now. Using catheters has become normal; I am organised with stores at work in case I forget to take any with me, but it is automatic to take supplies with me when going out, like picking up keys and money.
Sep 27
The nurse calls to ask me to 'buddy' a fellow patient. I am delighted that I am deemed suitable despite catheterising - it's apparently because I am so positive. She tells me the consultant asked for me specifically.
Tues 9 Oct
Clinic day again. I see a registrar first, who asks some sensible questions but then suggests I void, then they'll do ultrasound to check how empty I am. I explain how there isn't much point as I'm not full enough to self void much and if I catheterise then I will be empty. They just do ultrasound anyway, though I'm not sure what it tells them. My surgeon comes in at the end. I am hoping to get praise for doing well, but he states that I shouldn't need 6 voids per 24 hours, only 4 or 5. I point out that I'm not always full, some are convenience - I'm sent away to keep some charts again to send in. Sympathetic nurse says he's very caring despite making me feel I've been told off. Over the next couple of weeks I make sure I drink plenty to justify voids and pick out the best days to submit. Still misjudge fullness - 400 - 560 ml and self voiding about 25% at best, usually less. No response after I send them in, so I assume acceptable result.
Tues 13 Nov
Annual renogram. Diuretic deemed not necessary as both kidneys appear to take up dye & empty at a reasonable rate. Nights are still improving, can manage with 350 ml pads. If I wake at the first hint of leaking & get up to empty I'm OK. Seem only to hold around 350 ml before night leakage, so length of night & depth of sleep are relevant. Days anything between 350 - 500 or more depending on activity, intake, even type of clothing. Minor sore point in abdomen now.
Dec
Quite a few dry nights now, but inconsistent. Having to get up every night is the worst aspect of this new plumbing, though I also get a little fed up if I can't sit comfortably of an evening, or feel I have to wait (being uncomfortable) until sufficiently full.
2013
Jan
I start measuring again in anticipation of clinic. Aiming for at least 400 ml when I feel full - am usually managing this or more but still variable. Nurse rings, asks me to counsel another patient (requested by both consultants!). I mention I was never called for filming, so she puts my name in again. A couple a weeks later I go to 'tell my story'. I come away after about 40 mins filming feeling I hadn't altogether said all I would have liked. Eventually receive clinic appt in Feb with 3 days notice! First I chat to a medical student, then see the lady consultant & specialist nurse. My charts are approved & we have a pleasant chat.
April
At eighteen months post op days are good provided I don't get too full. May still have a minor leak when full if change position (stand up, bend forward) too quickly, so I still use liners for reassurance. Nights have improved significantly and have had several dry nights. Often still some leakage when full - night capacity less than daytime but normal day pads usually sufficient. I attend a focus group to look at the new website - a lot of info I would have found helpful, but I feel I would make the same decision again. Later I receive a prototype copy of the DVD - lots of me in it! I feel reasonably happy with the editing, but send in a few comments.
June
Intake/output charts approved at clinic appt with registrar. Funnily they don't ask about continence. I think I've reached a plateau now. Days are usually dry but I haven't the courage to go without a liner, as there may still be the odd drip. If I get overfull, I will definitely leak. Sometimes I arrange my timetable around waiting until full to void, other times void early to fit in with activities. Of course I am allowed to void when I want but I don't like to waste resources (catheters) unnecessarily and I need to keep up capacity too. Although it's a significant part of my life and in my thoughts a lot, it's just something I organise into my day, planning drinking and when I'll need to void. I can largely predict this according to intake. I still get on with everything I want to do.
Nights vary - around 20% dry, 60% small leak, 20% more significant leaking. Seems to depend on overall daytime consumption and depth of sleep when full. Trying to get down to mini pads. Have been exercising more & feel very fit.
I'm invited to the launch of the new website & DVD. It turns out to be quite a jolly event, once the speeches are over. An opportunity to talk to some other patients & meet the consultants out of the clinic setting. My surgeon thanks me for my 'sterling work' filming. He still makes me feel ridiculously tongue-tied!
September
Two years post op. It feels more of a milestone than one year - perhaps because I was still improving then, also I now move to 6 months between clinic visits. I feel things are as good as they're going to be.
I'm pleased to see my surgeon who seems happy with my charts & reports of continence (& thanks me again for my input to the DVD). I feel more ownership of my new plumbing now - used to the range of my new normal. Usually I can start to feel I'm filling at about 350 ml; sometimes it's easy to go to 'full', sometimes I'm still a bit prone to leaking earlier. Depends a bit what I'm doing. At night I feel more full lying on my left than right (it's still the left hand side where I sometimes have an interior sensation that's different from before). Getting up at night can be hard - if I wake and it seems to early, or I don't feel so full but have leaked - but I manage. I don't regret my decision at all, but I have my ups & downs - much as anyone might. On I go, hopefully without any metabolic complications.
I find I've changed my wardrobe - leggings or thick tights & sweater dresses, warm and comfortable. Jeans are a bit too stiff for comfort & I feel I want to look smarter too, so I opt for soft stretchy trousers or a good tailored fit.
Spring 2014
Another 6 months has gone by. When I go for my check up I take some surplus high absorbency pads to the hospital - I'm sure they can find a good home for them. I still use liners by day for reassurance, for the odd drop that sometimes escapes when full. My daytime routine works well, I can pretty much predict when I'll need to void & usually have an hour or so warning, feeling the fullness. I have to accept that nights will not get any better. I need pads about 300 ml absorbency - sometimes minimal leak, sometimes a full pad. I wake to void about 3.5 hrs, then find it hard to last another 5 hours to morning. I could get up twice a night but I'd rather not, so I put up with the leaks. I'm also conscious of not using more resources than necessary.
The novelty has worn off now! Having a reconstructed bladder is part of my life now - new habits & routines. Just like being short sighted & wearing contact lenses, not something I think about all the time, but there in the background all the same. When I read of those who are stressed about cystos, or facing advanced cancer, I'm glad I made this choice, although when I hear of post surgery complications I think maybe I should have been a little more apprehensive about it!
Spring 2015
Subtle improvements still - less uncomfortable when full and capacity perhaps a shade more. Nights usually only a small leak, large ones less often now. Recent renogram reveals R kidney down to 39% overall function compared with 46% previously - consultant not unduly concerned but says they'll keep an eye on it.
Autumn 2015
Repeat renogram OK - made sure I had an afternoon appointment when I seem to function better. Now I move to annual follow up. I feel ready for the transition - feeling I'm a person not a patient.
September 2016
Five years - a statistical milestone. Daytime is fine, I'm generally relaxed about when I need to empty & fitting this in with day to day activities. I still wear the thinnest liner available in case of the odd drop escaping when full. Nights I wear 340 ml capacity pads - dryness varies according to intake in the evening, quality & quantity of sleep. Sometimes I wake dry, sometimes I fill the pad but mostly just a small leak. I still dislike getting up at night but overall have never regretted my choice.
September 2018
Annual check up - with the nurse this time. All through the year I just get on with life & integrate my toilet habits OK, even if it's not much fun when I wake up wet. It's being questioned about the details of my function makes me feel that I'm a patient under scrutiny for performance. But overall I think we agree it's successful.
After major surgery on Thurs 1 Sep to remove my bladder and create a replacement out of a piece of intestine, I have to wait for the new plumbing to heal before using it. In the interim I have various drainage tubes & bags attached to me. I go home after a week in hospital. On Tues 13 Sep I visit the hospital for a cystogram, to check for any leaks.
Thurs 15 Sep
Arriving at the ward, I'm sat in the treatment room and a cannula inserted to give me antibiotics. Late morning my surgeon arrives, along with the new female consultant. He goes through his talk about the technique & regime for using the new bladder & leaves me with the lady to check my pelvic floor. She does this via a rectal examination which startles my muscles but I manage to demonstrate an acceptable pelvic floor contraction. Then Sister removes the soft drain & catheter and gives me a large incontinence pad. I'm surprised to find I don't immediately leak. I enjoy lunch while waiting for a bed - I'm given a single room. Daily anti-clotting Clexane injections are restarted (which I will have to do myself for the next 6 weeks) and blood tests are done.
Now the regime starts. I have to attempt to hold urine for two hours, then empty my bladder. All my output has to be measured, so there is a cardboard dish in the toilet to collect urine and my wet pads (I change pad every time I go to the toilet) are weighed. As the bladder fills I experience pain in my abdomen and lower back pain as well as nausea which is dismal - along with leaking involuntarily. I had expected a continual dribble, but it seems to come more in spurts. (I surmise this is due to peristaltic action of the bowel used to form the neo.) I set an alarm clock to get up at 10 pm, midnight, 3 am and 6 am in case the nurses forget to wake me. Not much sleep.
Fri 16 Sep
Grim. Clock watching, enduring each two hours until I can go to the toilet. I try to use pelvic floor muscles to stem the leaks, but it still comes out in spurts. The specialist nurse seems surprised at my extreme discomfort. I retch (into yet another cardboard dish). Voiding is not that easy but I am getting some urine out. In the evening they teach me how to self catheterise - this is done to check how much I'm retaining. Rather a lot! Because of the sickness, I'm put on a drip overnight. This means I soak both pads and the bed overnight and into the next day. They keep asking how much I've drunk - they didn't mention they need to measure input too. Eventually I'm given pencil & paper to record cupfuls consumed.
Sat 17 Sep
Poor appetite but feeling less discomfort. The first half hour or so is comfortable, then the pain builds over the next hour and a half. However, my output is increasing. Once I achieve 170 ml which the consultant says is showing off! Sometimes it's easier than others. I manage to self catheterise - relatively easy and not uncomfortable. They've given me male catheters which are very long. The catheter is coated, with a sterile water sachet at the top of the pack. Squeezing the sachet releases sterile water down to wet the catheter ready for use (after 30 sec). The plastic package tears into sections so there is a holder to avoid needing to touch the catheter itself. Then the whole lot is discarded after use.
The stents continue to leak occasionally - I have to empty the bag into yet another cardboard dish to be measured.
Sun 18 Sep
I discover the pain is less standing, so I do a lot of leaning against the wall, looking out of the window and pacing about. The last half hour is the worst and I'm still getting a lot of lower back pain as well as abdominal. Enormous pad pretty soggy each time. My appetite is picking up again and I have a few walks down the corridor. The nurses arrange a delivery of catheters at home for me.
Mon 19 Sep
Continuing much the same. The consultant says if all the results are good today, I can go home. The daily blood test results are fine - they are checking the pH level. Because the new bladder is made of intestine, it absorbs substances from the urine and this can cause acidosis. I'm taught to give myself the Clexane injections in my abdomen. This time I keep asking for permission to go, I don't want to wait until evening ward rounds. In anticipation, I get dressed. The registrar has to contact the consultant and eventually gets the all clear. I get my Clexane supplies, a plastic measuring jug, paper charts (for intake & output), a bag of pads and final instructions from the specialist nurse. Home I go about 6 pm, leaving a thank you card and box of biscuits for the staff.
I set my jug up in the bidet & put the chart with a pen on the shelf behind.
Wed 21 Sep
First follow up with the specialist nurse - felt quite wobbly and frail. Already continence is improving, managing voids of up to 280 ml with 60 ml residual when self catheterising in the evening. Rather loose bowel movements prevents me measuring every time. I still have to set an alarm twice in the night. Stocking up on loose, elastic waist or drawstring waist easy wash trousers was really useful as I do have a few accidents from over full pads. Having managed to walk up to half a mile in my week at home after the major op, I now have to build up again. Managed first household task - emptying the bedroom waste bins!
Sun 25 Sep
I'm dry for an hour or so after voiding, then leaks start - pelvic floor reduces the speed of flow rather than stopping it. My day revolves around toilet visits - time spent in the toilet, then a dry period when I can be active eg use the computer or have a walk. As I start to fill & leak, I tend to stay sitting until I feel I have to empty. Then a slow mince to the toilet to start again. Meals & snacks fitted in to suit.
I'm fed up with the stents leaking (requiring bag emptying) and the wound getting very sore and mucky. I remove the bag and taped over the stents with elastoplast. This seems to do the trick and the wound starts to dry out. Still quite sore. I'm starting to do a few gentle household tasks and walking further - up to a mile. Weekly blood tests - all still OK. The weather is unusually hot - not so pleasant wearing surgical stockings.
The District Nurse has arranged an order of incontinence pads for me. Two large boxes arrive on Sep 30 - 4 pks of 28 Euron Flex super pads (1800 ml) and 4 x 28 Euron micro super plus (1000 ml). A leaflet gives me instructions about re-ordering and amending the order. The bedroom, bathroom & toilet are now full of assorted supplies.
Wed 28 Sep
Another weekly visit to the nurse - feeling much stronger this week, but still walking slightly bent over, supporting my abdomen. Results erratic, but I can now hold up to 350 ml. I have to change pad every time I void which is now 2 - 4 hours according to time of day. Residual, measured each evening varies from 50 - 200 ml. I have the regular blood tests - venous base excess - to check that I am not getting acidosis.
Wed 6 Oct
Five weeks post op. Doing more household tasks such as the laundry. I have to put up with leaks & discomfort as I fill, in order to achieve stretching of the new pouch. Getting more consistently 350 ml with residual down to 20 ml on occasions & generally less leakage. Managing to stay up a little later so that I only have to get up once at night - a bit of a trial with the light on to do measuring. I investigate getting a night light. I'm using 2 maximum pads (1800 ml) at night & about 4 smaller pads (1000 ml) daytime.
Thurs 13 Oct
A good week - cooked dinner one day and doing some paperwork. Still scheduling activities round toilet visits, but the time between these is extending to 3 - 4 hours, more in the morning. Attended a local coffee morning and chaired a committee meeting. Everyone tells me how well I look. I conclude it's because I am drinking so much more than pre-op. I am to have at least 2 litres each day. Felt good to be doing normal activities again. Can only stand for a short while before abdominal discomfort. Still some twinges with certain movements and tender wound - it's easier turning over in bed now. I tire easily and still have some difficulties concentrating. Allowed to discard the surgical stockings - just as the weather turns colder! Today I reach the 500 ml maximum capacity (after just 4 weeks) and residual down to 30 ml, so I am allowed to drop catheterising to every other evening. I'm also allowed to not measure if I void when out - so far I've always been at home to empty. Bowels pretty much back to normal.
My supplies of pads are not going to last so I call the District Nurse. However, the NHS permits only 4 pads per 24 hours. I search online & find a suitable supplier - I order a few packs of Tender night plus & day plus.
Wed 19 Oct
Now I have reached the magic 500 ml capacity it is difficult not to go further as the sensations of fullness & leakiness vary. I go to the ward again, for stent removal. I feel a bit low after having attended a village event at the weekend and found it very tiring seeing lots of people and slightly upset not being able to join in as I normally would. I'm also taking antibiotics in preparation for the hospital visit, which have given me very loose bowels. They don't have a bed ready, so I sit in the waiting area for a couple of hours. I'm admitted just in time for lunch, a single room in the gynae section. In the afternoon a nurse first cuts the stitches - rather a sore process - then pulls out each stent in turn - a painless procedure.
Then follows a long afternoon and evening having obs at intervals - no visit from doctor other than to take bloods. A very disturbed night as I'm opposite a storeroom which is frequently visited, accompanied by the door banging each time. However, temperature stays normal although bowels still very loose so I'm not able to record urine output properly.
Thurs 20 Oct
I'm disappointed that the morning round is headed by the lady consultant (instead of my surgeon), who gives me the OK to go home. But I have to wait for more blood tests and the specialist nurse. She pops in but goes away again, eventually returning about 1 pm. Home by 2 pm and I manage choir rehearsal that evening - so much more comfortable without the stents, although the wound is still sore. I can wear jeans again.
Fri 21 Oct
Celebrated my son's birthday by having lunch out, which went well.
Mon 24 Oct
Drove the car - short trip with hubby in case of problems. Checked I could do an emergency stop without pain. felt fine.
Thur 27 Oct
In a fragile mood - feeling absurdly upset at not having seen my surgeon last week. I'm keen to be a star patient. A mix up at the GP's surgery about an appt to renew my medical certificate has me in tears - turns out to be productive as the receptionist gets it sorted out quickly. I'm signed off work for another month, which is OK - I don't feel I could cope with going to work in my present state. Fri 28 I see the nurse again. Voided capacity has been getting much worse with residual creeping up. The nurse is reassuring but I'm anxious about over stretching.
Wed 2 Nov
Two months post op. I'm picking up all my leisure activities again, but haven't much stamina. My abdomen is looking much smoother now - the scar measures 9". The nurse repeats advice about technique to void - relaxing pelvic floor, trying different positions. I decide to catheterise in the mornings as well to feel more comfortable, although I got the impression they prefer limited catheterising.
Wed 9 Nov
Have managed a gentle Keep Fit session without any significant leakage - can do fast walking again. Voids now no more than 360 ml & residual catheterised up to 395 ml. A registrar suggests I catheterise midday too. I'm much drier now, using ordinary Tena pads by day (sometimes one lasts all day) and with plenty of stock in hand, order only night pads from the NHS.
Mon 14 Nov
I'm still feeling full nearly all the time. I try voiding more often, when I feel I can, and have a miserable day spending 15 mins every hour or so in the toilet. So I decide to catheterise every void - what relief to be emptying fully each time. Having browsed online, I order the female version of the catheters - just the same, but shorter. They should be easier for taking out & about. I find they're flexible enough to bend in half to fit a small zip bag. However, it's a bit messy opening them as they have the same size water sachet as the longer ones.
The nurse agrees that catheterising each time is sensible but decides I should be seen again by the consultant sooner rather than later. I run to catch the bus without a second thought - very pleasing.
Thurs 24 Nov
Voiding ability has dropped right down to about 100 ml, but I'm managing the intermittent self catheterisation fine. I have a clinic appt booked for 4.15pm but at 5 pm a nurse comes to whisk me off for blood tests before they shut for the day. She tells me both consultants are there which is good news. It's my surgeon who comes in to see me. He's pleased with my recovery and no sign of hernia (& no bag!), so tells me I can start doing more. I tell him I'm very happy that I made the right choice for me. He confirms the clear pathology report and gives me 90-95% chance of being cured, which is the best news possible. The only check I need for 3 months follow up is a renogram, which is already booked. He's not happy with my problems voiding - he asks if I'm taking anything. (Apparently some medicines can cause this, but I'm not taking anything prescribed or otherwise.) I feel he thinks it's my poor technique or some other failing. He suggests a cystoscopy to see if there is any obstruction (obviously thinks this is unlikely) and books me on his list for 23 Dec.
Tues 29 Nov
My first experience of using a public toilet yesterday. A bit messy with these shorter female catheters but I manage OK. Today I make a visit to work (a long train journey) very successfully. Great to be somewhere different, seeing my colleagues again.
Wed 30 Nov
I have the renogram. This involves drinking plenty in advance and a pint immediately before the test. I also have to empty my bladder - catheterising when in a hurry never goes as smoothly of course. Then I lie on a padded table while they give me an injection of radioactive dye. For about 20 mins pictures appear on the screen above my head - the imaging machinery must all be under the table. About part way through they inject a diuretic. Then I have to empty my bladder again - this time in the 'female radioactive toilet'. By the time I get home, an hour or so later, I am bursting to go again and overfull.
Tues 6 Dec
Three months post op. First proper day back at work - feels good to be 'out in the real world' with people who don't all know what's been happening to me. I'm careful not to stand for any length of time and I'm glad to leave earlier than usual. Just doing one short day a week for the moment. A little bit anxious about timing toilet visits but manage OK. Problems sorting out the mandatory referral to occupation health as they don't work the same days as me!
I'm getting fed up with disturbed nights, waking by alarm to void (by catheter) & change pad if necessary, so decide to put up with wet pads and stop setting an alarm. Wonderful to sleep through a few nights. Daytime can still sometimes void a bit - occasionally up to 50%. I'm in a fairly comfortable routine & timetable of voiding associated with keeping up a minimum 2 litre intake each day.
Sat 10 Dec
At lunchtime I get a call from my surgeon offering to bring the date forward to Thurs 15 - actually for his benefit. Doesn't fit so well for me & I still need to see Pre-Assessment as well as being expected in at work, so we stay with the original plan. I go to Pre-Assessment on Fri 16. The nurse thinks I've lost a bit too much weight & suggests a liquid multivitamin as well as more snacking.
Wed 21 Dec
At night, the wet pads are now waking me up - so I go back to getting up at night, but this time rely on waking without setting an alarm. If I go to bed at 10 pm, I usually wake about 3 am and then go through to about 8 am.
It seems I have bacteria in my urine (quite normal for a neobladder) & have to go to my GP to pick up some antibiotics. Fortunately this one does not have any ill effects. I've had a letter from the lady consultant with good results from the renogram and saying she'll see my for the cystoscopy, so I am expecting to see her on Fri, not my surgeon. I have a cold - oddly good to have something normal wrong with me.
Fri 23 Dec
Back to DSU -usual procedure, ready for action by 7.30 am. Aneathetist is happy that my cold is not a problem. I appear to be privileged as it is my surgeon who arrives about 8.15 am, despite a nurse telling another patient that he's 'busy on a big case'. He has disappeared off by the time I'm back on the ward at 9.00am. I have a drip in when I come round, which I haven't usually had - whatever is in it perks me up no end! The lady consultant comes round to say all looked fine - which she says is good news, but I feel it means the problem is me. She says I have a very strong sphincter muscle which keeps me continent, but I need to learn to relax it. So back to clinic in a month. I carry on with my routine, making sure I don't overstretch my new bladder.
Fri 30 Dec
Managed to cook Christmas dinner but had a rough few days with my cold, coughing making my abdomen sore. Post anaesthetic fatigue too.
2012
Mon Jan 6
Four months post op. I order more night pads - usually only use one per night now, so quite a good stock. Using ordinary Tena Lady for daytime, mostly for reassurance. Have managed the 3 long flights of stairs up to the canteen at work.
Mon Jan 23
Clinic appt with my surgeon. As he says he expected, there has been no change in my ability to void - slightly worse if anything. I am to restart weekly visits to the nurse. Consultant wants me to increase vol again and be more consistent. I'm sceptical and feel he regards me as a failure. I also have routine bloods & chest X ray, setting the pattern for follow up. I ask about making a long haul flight in April & he declares me fit to travel. I go home & manage a 50% void!
Fri Feb 3
Five months post op. I feel tired and crabby. Only significant voiding success when vol too high. I keep persevering but it takes about 10 mins to get 30% out. Nurse asks me to measure even when out - which means taking a jug to the toilet when I'm at work. (Now doing my usual two days each week.) Over the next few weeks I am obedient but get fed up - I am fatigued and still very inconsistent in both voiding ability and capacity - detecting fullness. My capacity is back up to 500 ml but sometimes I under or over estimate. Nurse is encouraging that it may just be I am one who has to catheterise though not what was intended. Says surgeon is keen to get me voiding if possible, may want to investigate further. I feel I just want to be left to get on with the catheterising & stop all the measuring. (I have found info on the internet that says up to 40% females have to self cath.)
Fri Feb 17
Nurse suggests I try not catheterising if I get a good void. One lunchtime I manage 300 ml, but all that happens after that is voids of about 200 ml every 1.5 - 2 hours & I give up when I start to feel too full. I'm managing a more consistently high volume but still no improvement on 45% void at best. I'm still going to bed fairly early and wet during the night so managing 5 voids per 24 hours. In between all this, I'm carrying on life OK!
Fri Feb 24
Feeling very fed up & tired, not sleeping well. Capacity creeping up again too high, so percentage voided getting less when trying at low capacity.
I try different catheters as recommended in an online forum - a compact style. Much neater to carry & easy to use, no waiting for lubrication to activate. The longer male ones are easier for when aiming in a jug. Wonder why nurse didn't suggest any alternatives.
Fri Mar 2
Six months post op. Another time wasting visit to the Nurse although we always have a pleasant chat. When I moan that in the last 6 months have only had one 4 week break without some sort of hospital visit, she reminds me of the commitment needed with this surgery. I counter that I have done all that was asked. (Other than drink all the Fortijuice!)She gives me a travel certificate ready for my holiday - but I have to take it to the GP for signing & collect it another day.
Fri Mar 9
I'm sleeping better & feeling fitter. Still a few firsts, such as doing gardening again. Pretty dry by day now - just using mini pads for reassurance for the slight occasional dribble just before voiding. Leaky at night - using up stock of mega pads but I decide not to order any more via NHS. Now I need 6 voids per 24 hours & am managing to keep up a good capacity. Sometimes I void early to fit in with activities, or time activities to suit.
Fri Mar 16
Last visit before my holiday. At last I am to be allowed to stop measuring & recording for a while. This new plumbing is a bit like wearing contact lenses - you get on with doing normal things without thinking about it but you never quite forget. I try smaller pads for night but not always quite sufficient, so I will need to take the larger ones on holiday.
Sun Mar 25 - Sat Apr 14
Off on a long haul flight. Three weeks supply of catheters in my hand luggage plus a few day & night pads. Manage to time voids & cope with airplane toilet without problems.
Interestingly my body clock takes some time to catch up with the time difference. The first few nights I seem to be on daytime production & am rather wet. Mornings I seem to feel I need to empty earlier than usual, but manage to span the day with usual number of voids. Carrying a bag across body seems to make me feel leaky. No better success voiding naturally. Difficult to keep track of intake but seems OK.
Same problem with shifting back in time on return. I resume measuring & find that I get quite uncomfortable going above 400 ml, but feel I must keep capacity up.
Mon 23 April
Clinic appt, I see the lady consultant. At last I am given permission to carry on catheterising and no more visits to the nurse. It looks as if my sphincter muscle is just too strong & things are unlikely to change. I am quite reconciled to this new way of urinating. I ask if things are likely to change, consultant says maybe try voiding again after a break.
I order yet another brand of catheter to try - a ready to use type which proves good for home use. Nights are now sometimes dry enough for a 300 ml pad, but often need 1000 ml - a step down from the large night pads. At least I don't need a light on in the toilet at night now, I can cope with night vision & street or moon light thought the window.
Sat May 5
Eight months post op. Once the jet lagged passed I felt the post op fatigue had finally lifted & I feel pretty fit and well.
I realise that some tight clothing eg thick jeans make me feel leaky (although I do stay dry) & want to empty sooner than I really need, so I stick to wearing what is comfortable, preferably soft fabric with a high waist. Occasional postural tiny leaks when getting full but dry if don't try to put off voiding. I measure occasionally just to keep track of capacity. Keeping to a routine of intake & activity I can predict approx when I will need to void & can feel the fullness. Seem to need to void at a smaller capacity at lunchtime than later in the day. Interestingly when hot & sweaty often void more often - certain foods have a diuretic effect too. Also suffer more flatulence than pre-op. Nights variable - sometimes wake because leaky but don't get up more than once. I can self void a variable amount form nothing to a modest amount - I count while urine flows which gives me a reasonable estimate of ml.
Fri 11 May
Have a whole 4 pks of the most absorbent night pads unused - I deliver these to the local surgery for collection by the District Nurse. I still have a few in hand in case of emergencies/illness.
Tues July 3
Ten months post op. Now just using Tena liners by day - just some dampness or odd drip when nearly full. Nights still variable from dry to slight or occasionally significant leakage. Managing heavy gardening, salsa aerobics without problem. Clinic again - routine clinic, bloods & chest Xray. I mention that there is more resistance to the catheter when I have self voided than when I haven't. It seems to me that the sphincter just shuts involuntarily. I have measured in the past week, but the consultant waves my charts away.
Mon July 23
As I am approaching one year post op I have ultrasound of kidneys & new bladder. They show me the bladder's peristaltic movements & comment on 'debris' - probably mucous. All is well.
I am gratified to be asked to take part in a project to give prospective patients information. I feel that means my surgeon is pleased with me, but ridiculously I wish he would just once say so!
Sat Aug 4
Nights have been poor - start setting alarm again which seems to help me sleep in the first part of the night & stay dry. Tend to wake early in the morning a bit leaky. I'm sure it will improve with time, but really I'm doing fine with my new habits well established. I measure occasionally just to make sure I am keeping up capacity as I still sometimes misjudge how full I am.
Sun 16 Sep
One year since neo went live. Days really very good now, although I may have the odd spot leak so rely on liners. Still able to self void a bit sometimes though I estimate usually no more than 200 ml. Nights are definitely improving. I've gone back to relying on waking to void. On a good night I wake about 2.30 am, then go through to about 7.30 am with only minor leaks if any. Poor nights I leak early - it's a choice of continue to leak and void on time or void early then leak as the morning approaches. I feel well rehabilitated now. Using catheters has become normal; I am organised with stores at work in case I forget to take any with me, but it is automatic to take supplies with me when going out, like picking up keys and money.
Sep 27
The nurse calls to ask me to 'buddy' a fellow patient. I am delighted that I am deemed suitable despite catheterising - it's apparently because I am so positive. She tells me the consultant asked for me specifically.
Tues 9 Oct
Clinic day again. I see a registrar first, who asks some sensible questions but then suggests I void, then they'll do ultrasound to check how empty I am. I explain how there isn't much point as I'm not full enough to self void much and if I catheterise then I will be empty. They just do ultrasound anyway, though I'm not sure what it tells them. My surgeon comes in at the end. I am hoping to get praise for doing well, but he states that I shouldn't need 6 voids per 24 hours, only 4 or 5. I point out that I'm not always full, some are convenience - I'm sent away to keep some charts again to send in. Sympathetic nurse says he's very caring despite making me feel I've been told off. Over the next couple of weeks I make sure I drink plenty to justify voids and pick out the best days to submit. Still misjudge fullness - 400 - 560 ml and self voiding about 25% at best, usually less. No response after I send them in, so I assume acceptable result.
Tues 13 Nov
Annual renogram. Diuretic deemed not necessary as both kidneys appear to take up dye & empty at a reasonable rate. Nights are still improving, can manage with 350 ml pads. If I wake at the first hint of leaking & get up to empty I'm OK. Seem only to hold around 350 ml before night leakage, so length of night & depth of sleep are relevant. Days anything between 350 - 500 or more depending on activity, intake, even type of clothing. Minor sore point in abdomen now.
Dec
Quite a few dry nights now, but inconsistent. Having to get up every night is the worst aspect of this new plumbing, though I also get a little fed up if I can't sit comfortably of an evening, or feel I have to wait (being uncomfortable) until sufficiently full.
2013
Jan
I start measuring again in anticipation of clinic. Aiming for at least 400 ml when I feel full - am usually managing this or more but still variable. Nurse rings, asks me to counsel another patient (requested by both consultants!). I mention I was never called for filming, so she puts my name in again. A couple a weeks later I go to 'tell my story'. I come away after about 40 mins filming feeling I hadn't altogether said all I would have liked. Eventually receive clinic appt in Feb with 3 days notice! First I chat to a medical student, then see the lady consultant & specialist nurse. My charts are approved & we have a pleasant chat.
April
At eighteen months post op days are good provided I don't get too full. May still have a minor leak when full if change position (stand up, bend forward) too quickly, so I still use liners for reassurance. Nights have improved significantly and have had several dry nights. Often still some leakage when full - night capacity less than daytime but normal day pads usually sufficient. I attend a focus group to look at the new website - a lot of info I would have found helpful, but I feel I would make the same decision again. Later I receive a prototype copy of the DVD - lots of me in it! I feel reasonably happy with the editing, but send in a few comments.
June
Intake/output charts approved at clinic appt with registrar. Funnily they don't ask about continence. I think I've reached a plateau now. Days are usually dry but I haven't the courage to go without a liner, as there may still be the odd drip. If I get overfull, I will definitely leak. Sometimes I arrange my timetable around waiting until full to void, other times void early to fit in with activities. Of course I am allowed to void when I want but I don't like to waste resources (catheters) unnecessarily and I need to keep up capacity too. Although it's a significant part of my life and in my thoughts a lot, it's just something I organise into my day, planning drinking and when I'll need to void. I can largely predict this according to intake. I still get on with everything I want to do.
Nights vary - around 20% dry, 60% small leak, 20% more significant leaking. Seems to depend on overall daytime consumption and depth of sleep when full. Trying to get down to mini pads. Have been exercising more & feel very fit.
I'm invited to the launch of the new website & DVD. It turns out to be quite a jolly event, once the speeches are over. An opportunity to talk to some other patients & meet the consultants out of the clinic setting. My surgeon thanks me for my 'sterling work' filming. He still makes me feel ridiculously tongue-tied!
September
Two years post op. It feels more of a milestone than one year - perhaps because I was still improving then, also I now move to 6 months between clinic visits. I feel things are as good as they're going to be.
I'm pleased to see my surgeon who seems happy with my charts & reports of continence (& thanks me again for my input to the DVD). I feel more ownership of my new plumbing now - used to the range of my new normal. Usually I can start to feel I'm filling at about 350 ml; sometimes it's easy to go to 'full', sometimes I'm still a bit prone to leaking earlier. Depends a bit what I'm doing. At night I feel more full lying on my left than right (it's still the left hand side where I sometimes have an interior sensation that's different from before). Getting up at night can be hard - if I wake and it seems to early, or I don't feel so full but have leaked - but I manage. I don't regret my decision at all, but I have my ups & downs - much as anyone might. On I go, hopefully without any metabolic complications.
I find I've changed my wardrobe - leggings or thick tights & sweater dresses, warm and comfortable. Jeans are a bit too stiff for comfort & I feel I want to look smarter too, so I opt for soft stretchy trousers or a good tailored fit.
Spring 2014
Another 6 months has gone by. When I go for my check up I take some surplus high absorbency pads to the hospital - I'm sure they can find a good home for them. I still use liners by day for reassurance, for the odd drop that sometimes escapes when full. My daytime routine works well, I can pretty much predict when I'll need to void & usually have an hour or so warning, feeling the fullness. I have to accept that nights will not get any better. I need pads about 300 ml absorbency - sometimes minimal leak, sometimes a full pad. I wake to void about 3.5 hrs, then find it hard to last another 5 hours to morning. I could get up twice a night but I'd rather not, so I put up with the leaks. I'm also conscious of not using more resources than necessary.
The novelty has worn off now! Having a reconstructed bladder is part of my life now - new habits & routines. Just like being short sighted & wearing contact lenses, not something I think about all the time, but there in the background all the same. When I read of those who are stressed about cystos, or facing advanced cancer, I'm glad I made this choice, although when I hear of post surgery complications I think maybe I should have been a little more apprehensive about it!
Spring 2015
Subtle improvements still - less uncomfortable when full and capacity perhaps a shade more. Nights usually only a small leak, large ones less often now. Recent renogram reveals R kidney down to 39% overall function compared with 46% previously - consultant not unduly concerned but says they'll keep an eye on it.
Autumn 2015
Repeat renogram OK - made sure I had an afternoon appointment when I seem to function better. Now I move to annual follow up. I feel ready for the transition - feeling I'm a person not a patient.
September 2016
Five years - a statistical milestone. Daytime is fine, I'm generally relaxed about when I need to empty & fitting this in with day to day activities. I still wear the thinnest liner available in case of the odd drop escaping when full. Nights I wear 340 ml capacity pads - dryness varies according to intake in the evening, quality & quantity of sleep. Sometimes I wake dry, sometimes I fill the pad but mostly just a small leak. I still dislike getting up at night but overall have never regretted my choice.
September 2018
Annual check up - with the nurse this time. All through the year I just get on with life & integrate my toilet habits OK, even if it's not much fun when I wake up wet. It's being questioned about the details of my function makes me feel that I'm a patient under scrutiny for performance. But overall I think we agree it's successful.
