Side effects from medication.

I've been on the highest possible doses of very hefty pain medication, and I've developed some adverse side effects over time. The medication doesn't take the pain away, it just allows me to get some sleep at night. Even then I'm still self cath-ing 30 (yes, 30!) times a day.

The main problem is amnesia. I'm forgetting peoples names who I've known for years, I can't remember what I did in my previous jobs or uni. I'll be talking to Tim and then forget what he's said and what we were talking about. My head feels like a fuzzy mess, it takes a long time to do things that used to come naturally.

I've fainted a few times lately. I know when it's going to happen because my tinnitus becomes really loud, with a loud hissing noise like letting the air out of a tire. I know then I've got about five seconds to get on the floor/bed/couch before I drop. I was out for about an hour the other day, then it took another 40mins to move - sleep paralysis. Luckily my cat came in and jumped on me and that snapped me out of it. But still, it's scary stuff.

Still, there is the old saying "if everyone wanted put their problems out to swap, we'd soon grab ours back."

Right, that's it for now, I'm too doped to write any more.

Neobladder conversion to Indiana pouch and Mitrofanoff

I went to see a fellow sufferer's consultant (Dr. Y) for a second opinion on my case. He basically trashed everything my current consultant (Dr. X) said. I am now on his NHS list. It only took three weeks compared to 6 months from my old hospital referral to Dr X!

Dr. Y told me that an Indiana & Mitrofanoff IS possible, it's just a bit fiddly.  This is because they have to undo everything from my first operation, so it takes great surgical skill to do so. (Perhaps my old consultant doesn't have the experience of this but you think he would have referred me to someone who does, instead of trying his best to force me into the Ileal Conduit!) Thankfully, Dr. Y specialises in bladder reconstructions.

Dr. Y also said not only IS it possible to remove the trigone and top part of urethra, it's also considered a STANDARD procedure with IC patients undergoing cystectomies. This is because the trigone and the upper part of the urethra seems to be a point of ongoing pain and discomfort for most patients.

He was also very informative. I should expect some leakage - should only be a few teaspoons full per day. The corrective post op surgery rate for this type of reconstruction is 20%. He said if the pain is caused by pressure within the pelvis as the bladder fills then I wouldn't be a candidate for a conversion. But as he noted my pain is lessened with having an indwelling catheter (before the inevitable infections begin), he thinks he should at least be able to improve upon my current pain levels with this type of surgery and at best all but cure it.

I stated that I'm not expecting a cure, just an improvement of my pain and therefore quality of life.

He still wants me to undergo the sacral nerve stimulation trial at my old hospital. Although he thinks my bladder pain should be improved after the conversion, he thinks it may be beneficial for my general pelvic pain (lower pelvis and groin), as it should hopefully stop the positive feedback loop of muscle tension.

I cannot pass urine without a catheter as my muscles cannot relax enough to relax the sphincter and pass urine normally.

Dr Y has penciled in for late November for the reconstruction.  I wished I'd transferred to him years ago, but hindsight is a wonderful thing. I'll post again nearer the time when everything is confirmed.

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.