Meeting with consultant results in impasse

Had my appointment yesterday. Consultant said only option is an Ileal Conduit. I said no. 

I wanted a Mitrofanoff made, consultant said no. 

He said that I need to stop focussing on having the trigone and top of urethra removed and thinking this is the problem. He also said that in any cystectomy, the trigone is usually left in as it is too difficult to remove. Yet again, he says I need to be flexible, regardless of him being totally inflexible and ignoring my wishes right from the start.

In the end, we came to a compromise of Sacral Nerve Therapy, to see if that works first.
I am getting a second opinion from a fellow sufferer's consultant who has removed the trigone, and converted a Neobladder to a Mitrofanoff. If I do end up needing a second round of surgery, it won't be with my current consultant.

Botox treatment failed

The benefits of the Botox injections I had last month only lasted 11 days, after three days of being sore after the procedure. So that's another fail to add to the list. I really am going to push for the Mitrofanoff when I see my consultant at the end of the month. 

From my own research on the net, talking to people who have had cystectomies due to IC, the Neobladder never works in removing the source of the pain, and these ladies have had to go back to have it converted into a Mitrofanoff although my consultant says otherwise. I really have had more grief than I can tolerate, and although I am thankful to him for everything he's done for me, it's time he respected my wishes. This is what I asked for to start with, and it's my body after all. With all his concerns about my age and being able to have children,I can't have children in my current state.

I don't expect the removal for the trigone and top of urethra to remove all the pain, it maybe that I end up needing sacral nerve therapy in addition to having a Mitrofanoff to help reduce the pain (if the trust funds it).

Nine days on...

It's been nine days since the Botox injections into my bladder, and it has made a difference. I'd say it has reduced the pain about 20%. I'm a lot more mobile, I can walk short distances without too much pain, and it doesn't hurt as much after I've been moving around a bit. I don't have to spend the rest of the day in bed taking painkillers, and having a TENS and a hot water bottle permanently attached to me, after attempting a short walk. I even managed to walk to a park near where we live for a BBQ on Monday, and only had to pop back to use the toilet once!

However I still feel pain as the bladder fills, and my pelvic floor is still always tensed up because of the pain. I can relax it temporarily when I do some Qigong (a version of Thai Chi), as you have to focus on movement and breathing at the same time. I do the exercises that benefit the kidneys and bladder, and fatigue. I'm glad I gave it a go and went to classes last year. I'm usually very critical of a lot of new age healing stuff, most of it is utter bullshit. But it really made a difference. Even when I forced myself to go after a bad pain day, it would take about 10-15 minutes in, and I'd forget about the pain, it eases off the more you do. But obviously I can't spend all day long doing Thai Chi.

I won't see my consultant for a couple of weeks yet, but he said before that if the Botox didn't have the desired effect, then he might consider nerve blocks. Still, I'm glad I had it done. I just hope it lasts. Although if I have it done again, I hope they leave me under anaesthetic a bit longer, I don't want to wake up in that much pain again!

But just side-tracking for a moment, I got my rescue cat from Cat's protection on Easter Sunday, and she's absolutely gorgeous. She was treated badly and came to them in poor condition, and was there for two months as no-one wanted to take her on. She's very skittish, but very loving. The first day she was with us, she spent 10 hours under the bed until she'd come out. Then when we went to bed, she got in with us! Spend all night snuggled into the pillows between us. It's very satisfying watching her trust us more and more, and she's a welcome distraction from all our troubles.

I'll post again when I hear from the consultant. Hope you are all having a good day. X

Botox injections

Yesterday, I went to hospital for day surgery and had Botox injected into the Trigone. And what a surprise, me being trouble, it hurt like hell when I woke up! I knew all the nurses and doctors there, and that was the only thing stopping me punching one of them for being so bloody patronising. Luckily, one nurse who has treated me in recovery three times now and knows me well, clocked me, gace me some morphine She administered triple my usual dose. Why do these things always happen to me?

After 10 agonising minutes, and lots of painkillers, it finally started to ease off, and I was sent back to the ward after about an hour under observations.  But then the indwelling catheter they had put in blocked. The Sister wouldn’t believe me, saying no, it’s draining and it’s clear. I had brought my saline and syringes with me, and thought sod you then, I’ll do it myself! I asked her to get me a sterile plastic bowl, and laid it all out. It wasn’t in particularly sterile conditions but I did the best I could, soaking my hands and table in alcohol gel. And yes it was blocked. I pulled out a whole syringe full of mucus.

The Sister was astonished, saying she’d never seen or heard of that before (despite me telling her several times I had a NEO-bladder, NOT a normal one and how it worked). This has happened before and should have been in my notes but wasn’t. To give her credit she did write this in my notes so (hopefully) next time I have surgery that they are to do regular saline flushes, even if it appears to be clear and draining. I have a max capacity under anesthesia of 400ml, 200ml when conscious. I don’t want it to rupture!!!

My discharge note said the procedure had gone without incident. Did it fuck!!! I had my anaesthetist and one of the Urology surgeons come back in to check on me after all my shouting and thrashing when I woke up.

Anyway, a day later and I’m sore, and my tummy is swollen but otherwise okay. I can’t really tell if it’s worked yet, I was told it could take up to two weeks, if at all. So I’ll have to wait. I should be seen in outpatients in 4 to 6 weeks time. Hmm. I’ll take that with a bucket of salt. I took the indwelling catheter out when I got home last night. I didn’t want any bugs to take hold after my less than sterile saline flush. I’ve been drinking lots of water and the evil cranberry juice. The stuff still irritates me. I was a bit antsy last night and couldn’t settle – the drugs wearing off I guess – and went on a cleaning spree of the house. Today I’ve been snoozing all day. In fact my other half has been asleep on the sofa for the last 20 minutes so I’d better sign off and go to bed. I’ll update you if there are any changes. Hope you are all as well as you can be. X

Summary of Neobladder fail

As some of you are aware from the message boards, I’ve not had a good time of it. The operation was a success in regards to removing the diseased bladder tissue (which was scarred, thick & ridged, with a 50ml capacity) and therefore the cause of the burning and stinging pain, like lemon juice on hundreds of cuts; but has caused other problems. I have very painful muscle spasms, intense pressure pain in my pelvis, and I still have pain on the bladder filling, although it is pressure pain rather than the stinging. I still have pelvic pain.

So in my case it seems the main problem is nerve damage. I have a very tight pelvic floor, as when I am in pain, everything tenses up. I can’t consciously relax it, I have to take Diazepan to help, and a hot bath helps too. My nerves seem to fire excessively, as the level of pain I experience is out of proportion to the cause. I’ve been reading up on this, but it’s quite complex.

My consultant has suggested injecting the trigone with Botox, but he had to apply for funding from the committee. I got an appointment in the post on Tuesday to say I have to attend a pre-op assessment, so I’m assuming the funding has gone through. Depending on the results of that he may also try sacral nerve therapy. He doesn’t want to do any more surgery until I’ve gone down this route first, which is logical, but when I am the one suffering every day, I just want them to take the top of the urethra and trigone and be done with it!

Of all the 10 people I’ve spoken to online, who’ve suffered IC, and then had a cystectomy and Neobladder reconstruction; 9 have had problems and are considering or have had it converted to a Mitrofanoff pouch or an Ileal Conduit.  That is not to say that it might not work for you if you are considering this option, I’m no doctor, but you need to do your research, and make sure that your consultant knows your wishes. I wish I had been more forthright with mine, as I said repeatedly that I thought a Mitrofanoff would work better for me than a Neobladder, but he did what seemed logical as a doctor, which was to do the least drastic option first.

I am on Morphine and Diazepan daily now, but it is having less and less of an effect. I’ve become very depressed lately, although my GP increased my dose of Amitriptyline from 50mg to 150mg to help cope with the pain and the depression. I feel awful because the stress is taking its toll on my other half; he’s really tired all the time lately which is very unlike him. He usually has oodles of energy. We just want the nightmare to be over with. I want to be fit enough to go back to work. I want to be well enough to plan and enjoy my wedding (we've been together for over 11 years, we need to do it soon!) I’ve realised I’ve been off work for about a year now. I’ve been trying to make use of the time by doing some studying. Sometimes it distracts me from the pain a little, but most of the time it hurts too much to study, and the painkillers make it hard to concentrate on anything for long.

Six months on from Neobladder Op

It's been 6 months since my Cystectomy and Neobladder reconstruction, and it's been an utter nightmare. I would never have believed it possible, but I'm in more pain now than I was before. I requested a Mitrofanoff primarily, as I wasn't convinced that a Neobladder wouldn't work. When I expressed my concerns to the consultant, he said the pain that I feel at the bladder base (which is where it was worse) would be referred pain from the rest of my bladder. He came to a compromise that it when he did a cystoscopy before commencing the surgery, if that trigone looked intact, he's save it. If not he'd remove it. As nothing was visibly wrong with it, which I found hard to believe given the amount of trauma from catheter damage, he left it in. I wish he'd listened to me.

I contacted E-Coli in hospital. I had 3 months of constant infections. My stents were forgotten about and were left in for 3 months. The Superpubic catheter was constantly blocking due to all the gunk from the infections, and unblocking it was very painful. Although the burning and stinging pain has gone, the pressure pain has doubled, and I am still aware of every drop of urine in my bladder. I'm using 30 catheters a day, and my urethra is understandably, red raw. Oh, and I had to call an ambulance when my Superpubic catheter split and urine started leaking from the site on my belly.

I had another cystoscopy in January this year, which showed everything looked fine, and there was no visible damage from the infections. My consultant then wrote to me suggesting, with my permission, injecting Botox into the trigone. But after over a month of waiting for a letter confirming a date, and then 3 unanswered messages, I was finally informed that the Urology department doesn't have the funding for it.

His secretary (whom I have nicknamed Miss Snooty, as she is the rudest and most uncaring person I've ever had the displeasure to speak to), told me it was being taken to the committee, but there's no guarantees and I'll have a long time to wait.

My GP, by contrast, has been absolutely wonderful. She's prescribed me Oramorph and Diazepan (oral morphine and Valium), although they are not having much effect now I've taken them for a period of time.

Personally, I think I need a Mitrofanoff made, the trigone and top of urethra completely removed, and maybe a nerve block for the pelvic pain. I've been housebound for nearly a year now. Despite losing two stone after the op & infections, I've put it back on again, because I can't move far due to the pain. To top it off, the DWP booked me an appointment at a centre 30 miles away to have a medical assessment (by a nurse!!!) to have my ESA benefit reviewed. This despite me informing them I was housebound, and can't be away from a toilet for more than 10 minutes, can't tolerate the jolting of a car, and can't travel on my own. They are also refusing to admit they have received faxes from my GP and consultant confirming this. Apparently, our benefits agency, dealing with health assessments for the whole of the UK only has the one fax machine.

I am absolutely exhausted and in so much pain, I'm on the verge of giving up entirely.

I've had another Cystscopy last week and it was all okay, nothing suspect was found. My consultant said he'll think of options for plan B.

Not sure if Urology can do much more for me in respect to the pain and spasms. I'm wondering if I'll be referred to a pain clinic. I'm waiting for a letter from the consultant as to what to do next.

Post Operation – 3 weeks

I have had a Neobladder made and have been home for 12 days. I’m doing okay. So this is how it all went:

Day before surgery

I was admitted at 5pm on Sunday 12^th September. I was not allowed to eat from then on, I could only drink water. I had two enemas, one the night before, and one at 6am on the day of the op. They weren’t as bad as you think. It was a little uncomfortable but not painful. I had to hold it in as long as I could, and then go to the loo. And it does make you go. A lot. The anaesthetist came to see me in the evening to explain what would happen the next day. I was going to have an epidural as well as the anaesthetic so I would feel no pain. I would keep the epidural for two days after surgery.

Day of surgery

I was sent down to pre-op at 9.30am. The nurses there recognised me from last year, so I had a bit of a giggle with them and teasing the porters. I went into the anaesthetists’ room, and recognised a nurse that helped me last November when a procedure went wrong – so was chatting to her as they got on with things. I had a Cannula fitted in my left arm. I then had to sit up side on to the bed. I had a stool to put my legs on, and had to lean forward, arms folded on my knees with my head resting on my arms. They felt for the right place in my spine, and put a local anaesthetic in first to numb the area, and then put the catheter tube for the epidural into my spine. There was no pain; I could just feel the tube being pushed in. By this time it was 10am. I was then lay back down and given something to make me woozy, and then the anaesthetic was given, and I was asleep.

I remember being quite grumpy at being woken up (as my fiancée joked with the nurse later, there was no change there!), all I wanted to do more than anything was to go to sleep, but I was being poked at and talked too. I was then taken to the intensive care unit, as the high dependency surgical unit had no beds. I was in no pain; I couldn’t feel anything below my chest. My fiancée came in once I’d come round and stayed for a few hours. Then my consultant came in at 8pm to tell me that my urethra and trigone were "pristine", so he saw no need to remove them, and had made a Neobladder.

After my other half left, the nurses came to move me on the bed to prevent bed sores. When they asked me to shift over, I realised I couldn’t move at all. The epidural had paralysed me from the waist down! The downside of this was that they had to stop the epidural, because they needed to know if it was just that, or whether there was bleeding in my spine which is quite dangerous. It turned out it was just the epidural, but as that was my only pain relief, and they’d taken it away, I felt far, far much more then I ever wanted to. My memory of that night is fuzzy now, I think my brain has blocked it out. It was the longest night of my life. Once I could wiggle my toes, the epidural was started again, but not as high so I could still feel the pain in the operation site, but not my legs, which was not useful. It was fully topped up again by the next morning, when I told someone that I’d like to drag myself off the floor of the building. I remember whoever it was (I think it was the consultant, but I’m a bit fuzzy on the details) being quite condescending when I told them I was in pain. The answer being, “of course you’re in pain, you’ve just had surgery”, until I said my epidural had been stopped. It got turned back on promptly after that.

NB. Don’t let my episode with the epidural put you off having this op, as I say, it is really rare for an epidural to paralyse you – I just get all the luck. It wasn’t pleasant, but I’d do it again if I had too.

After surgery

I was in ICU for 2 days. I wasn’t allowed food or water, but could suck on a water soaked sponge when my mouth got dry. I had to be shifted every 4 hours to stop bed sores and was constantly monitored. The staff there was brilliant. You have to have a sense of humour to be a nurse, and this lot had oodles. I got along with one nurse in particular; she was really sweet and went out of her way to make me comfortable. I slept for 2 hours in 48. There was far too much beeping and monitoring going on to get any rest. I had a central line in my neck with three needles, a cannula in my arm, an oxygen tube round my nose, a stomach drain on my right side, a superpubic catheter on my left side and a urethral catheter. These were draining blood and urine for 3 days. I had stents from my kidneys into the new bladder.  I had regular bladder flushes with saline through both catheters as the piece of bowel the doctors used to make the Neobladder will continue to make mucus. It’s important that it is cleared do the catheters do not block.

I was then moved to Surgical HDU for a day and a half. I managed to sit up in my chair for when my family came to visit. I was given a morphine pump, so I could get enough morphine in my system to cope when the epidural was taken away. Again, I didn’t sleep for several days because I couldn’t push the morphine button when I was asleep so could only sleep 2 hours at a time before the pain woke me. My stomach drain was taken out, I was allowed to drink and I had my first meal that day – Shepherds Pie. I also had my first coffee in over 6 years!

On day four I was moved to the ward. I was doing quite well. I was walking around with my morphine pump, so much so that the Sister put leg bags on me instead of the big ones attached to the bed, as she was getting panicky that I would pull something out. I think this was the day I had my first bowel movement. It was loose, and smelt toxic! It was quite gross, but a good sign that things were working again. The second and third ones were very painful, I think I’d overdone it with the eating! I remember thinking; “if this is what labour feels like, I’m never having children!”

All was well until day 7 when I got a bladder infection and had a high fever. One minute, a medical student was taking my temperature, the next minute I had 8 doctors round my bed. I later found out that I'd contracted E. Coli. My temp went up to 39.5 (Normal is 36.1 to 37). I was extremely weak, I couldn’t move. That was the only time I felt really frightened – like I might be in serious trouble. I was given two IV antibiotics and a fluids drip. I had to have a chest X-ray, which was difficult as I had to stand and I was so weak. I then had a CT scan, which was a scary experience. Normally I would have been curious, but I felt weak and upset. The noise that thing makes is unnerving. It’s like a power plant starting up!

All scans were clear though, no chest infection and no leaks from the new bladder. I was nearly back to my old self after 2 days. The nurses said they were shocked how quickly I went down, and surprised at how quickly I bounced back. I was kept in for another 4 days. I had some problems with both catheters blocking, which was painful, and one of the doctors had to sort out. They taught me how to do it myself, and then I was sent home on the Friday, 12 days after the op, with a bag full of catheter bags, valves, syringes and saline.

At Home

I’ve been home for 12 days and I’ve been getting on okay. I’ve been catching up on a lot of sleep. I didn’t realise how tired I was until I got home.  I’m still uncomfortable and in some pain, but it’s not unmanageable. I’m on the same painkillers as I was before I went in. The district nurse came to visit, and a big box of supplies arrived that the hospital had ordered for me. The catheters have blocked several times, but I can sort that out myself. I developed an infection 2 days ago. My GP was coming out to see me anyway, and prescribed some antibiotics which seem to be working. I’m not as ill as I was in hospital when I had E. Coli in my system. I’ve asked my consultant if the district nurse can take the urethral catheter out, as I always get infections with them. Especially as I’m detaching it every 4 hours to flush it. He agreed. I’ve ordered some single use catheters as a backup in case my Superpubic gets blocked. I don’t want to end up flushing saline through a full bladder and risk bursting something.

I can have showers but not baths. I did keep a dressing around the Superpubic site, but I’ve stopped that now to get some air to it. I do have to keep it clean with saline though.

So that’s it. I’m moving about okay, I’ve started to do some light housework, and some cooking. I do get a lot of pain and have blood come out into the bag if I move around too much, so I just do a little bit every day. It’s important to keep active. I have a follow up appointment in a few weeks.

Sicknote.