I can't believe it's been almost a year. I'm starting to get back to normal. I can go out on my own. I've started volunteering. We bought a camper van so we could go away on short trips, as the amount of kit I have to take with me would fill a suitcase on it's own! I feel a lot more positive.
I've struggled with infections since the op, averaging two a month, although I went 6 weeks infection free until last week.
Overall I'd say the pain is 85-90% gone. The remaining 10-15% can usually be controlled with Gabapentin and Amitriptyline, although I have the odd day or so that's painful. Still, nothing like before. I'm struggling with fatigue but I think that's the infections. My consultant has started me on a course of low dose anti-biotics over several months to see if that improves.
When I get an infection, the first sign is tiredness and I notice more mucus coming out when I self catheterise. After a day or so, it gets to the point where I have to use a 50ml bladder syringe to draw out all the gunk so the pouch will empty. Then comes the fatigue. I feel like such a pansy but I cannot stay awake. I'll sleep for hours during the day. Then comes the pain, not unbearable, just sharp jabs in the pouch and kidneys.
Very rarely I'll feel queasy and have flu-like symptoms, but my new GP is good at getting me on a course of anti-biotics quickly. I try to get rid off it myself by drinking lots of water for a few days, but once there is blood in the mucus I get a course from the doctors.
BUT, the most amazing thing is, something most people take for granted, now I can SLEEP! I sleep 8 hours uninterrupted. I had to set an alarm the first few months to wake me up at 2am to remind me get up and go to the toilet. But the pouch holds a lot more now. I can't tell you how much that has made a difference. I'd not slept properly and fully for 15 years.
The surgery last December was a success, it's just getting on top of these infections now. I've been looking for part time work for six months but it's so difficult when I've been out of work for two an a half years. It's starting to really get me down. The area where I live has a high rate of unemployment which makes it all the more difficult.
I had a scan last month which showed a few mucus balls that needed flushing out of the pouch but no stones. My consultant is concerned that some of the mucus might develop into stones so he's reviewing me in four months. The radiology nurse also found a 2cm cyst on my right overy which wasn't there six months ago. I had noticed a dull pain on my right side but thought nothing of it. They review it at the next scan.
So, all in all, I'm getting there! Finally!
Thursday 1 November 2012
Monday 11 June 2012
Six months on from Mitrofanoff Op
I'd almost forgotten about this blog! It's been six months and I'm doing okay. I've struggled with several infections, which knock me down hard, but once on the right antibiotics I bounce back in two or three days. I'm keeping up with the Amitriptyline and Gabapentin for pain, multivitamins to stop me feeling so tired and cranberry tablets which help with preventing infections. I'm not doing as many saline flushes as I should as I'm terrified of getting an infection. I think the last once was because I went in the sea, despite all my precautions of water proof dressings and rinsing the stoma before catheterising. I did get a telling of for not flushing out the pouch from my consultant.
My main problem now is back pain. Now I don't have the Tramadol and Morpine masking it, I realise how bad it had gotten. I saw a Chiropractor two weeks ago who turned out to be a quack and made it worse, charging me £55 for the privilege. So I'm going to ask my GP to refer me to a physiotherapist.
The other problem is fatigue. Some days I fine, and others I'm shattered. I can sleep all afternoon sometimes. People keep telling me it's still early days, but I feel like a bit of a pansy for it. I just want to get on with my life now. We moved house two months ago, which I never would have though possible for me four months after the operation! It was quite stressful, and I did sleep a lot after.
Pain wise, I've been so much better. Occasionally, usually when I've been sleeping on my back I find, I get phantom pain where my urethra and trigone used to be, but if I get up and have a walk around it goes quickly. Other than that my bladder pain has gone. I still get some pelvic pain, but with Amitriptyline and Gabapentin, it's not a major issue. Compared to what it was like before it's nothing! I suspect once my back is put right and I get stronger, the pain will lessen.
That's all I have for now. I'm going to have to go lie down as my back is killing me, and I'm waiting for the GP to phone back. Just taken a Tramadol from my dwindling supply so hopefully it will ease up soon.
My main problem now is back pain. Now I don't have the Tramadol and Morpine masking it, I realise how bad it had gotten. I saw a Chiropractor two weeks ago who turned out to be a quack and made it worse, charging me £55 for the privilege. So I'm going to ask my GP to refer me to a physiotherapist.
The other problem is fatigue. Some days I fine, and others I'm shattered. I can sleep all afternoon sometimes. People keep telling me it's still early days, but I feel like a bit of a pansy for it. I just want to get on with my life now. We moved house two months ago, which I never would have though possible for me four months after the operation! It was quite stressful, and I did sleep a lot after.
Pain wise, I've been so much better. Occasionally, usually when I've been sleeping on my back I find, I get phantom pain where my urethra and trigone used to be, but if I get up and have a walk around it goes quickly. Other than that my bladder pain has gone. I still get some pelvic pain, but with Amitriptyline and Gabapentin, it's not a major issue. Compared to what it was like before it's nothing! I suspect once my back is put right and I get stronger, the pain will lessen.
That's all I have for now. I'm going to have to go lie down as my back is killing me, and I'm waiting for the GP to phone back. Just taken a Tramadol from my dwindling supply so hopefully it will ease up soon.
Thursday 9 February 2012
Mirtofanoff Operation
Hi,
I'm sorry I haven't posted for a while. It's been hectic.
I had my Mitrofanoff operation before Christmas. The surgeon took the trigone and the entire urethra out. The operation was 10 and a half hours long. It over-ran by three hours as the trigone was very difficult to get out, and they had to cut through the vaginal wall to remove it (shudder). I won't lie, it was incredibly difficult. Harder than having the Neobladder. The morphine I'd been taking for the last nine months had made me very constipated and I "was full of rocks" as my surgeon bluntly put it! This made the pain so much worse, and nothing seemed to work for it except the PCA which I was given on day five.
I had problems with my epidural again, I don't think I mentioned it on my Neobladder op blog, but it only works on the left side of my body.
I was in for nine days and made it home for Christmas. I just had a quiet one at home with my other half. Unfortunately I was re-admitted over new year due to a severe infection. I was in for four days and on a drip and IV antibiotics, as I couldn't keep anything down, not even sips of water.
It's now been two months since the operation. At first I was see-sawing between diarrhoea and constipation. I couldn't eat a lot, I was living off soups and smoothies. I've been taking cranberry and multivitamin supplements which help a lot. I was very weak and tired so I slept a lot. Even now, I end up taking an afternoon nap occasionally, but I'm getting stronger. I can walk to town and back (although that's not far - a five minute walk), but I need a rest afterwards.
I came off all my pain meds, which was fine at first, but then some of my pelvic pain returned so I'm back on Gabapentin and occasionally Tramadol. Now I can see how the pelvic pain and bladder pain interacted in a positive feedback loop, now that I experience the pelvic pain on it's own. But it's a definite improvement, and now the bladder pain has gone and the pelvic pain is isolated it is much easier to deal with. Breathing exercises also help (like in Thai Chi and Qi-gong).
The indwelling catheter caused me problems as due to the bacteria in the urine, the pouch produced more mucus which constantly blocked the catheter, even when the bag was replaced with a flip-flo valve. I had to use saline flushes and syringes every time I voided my bladder. This was removed last week and I was taught how to self catheterise through the new stoma which is in my navel. I picked it up in about 10 minutes, it was fairly easy once I knew what angle to put it in.
The new catheters are huge; well over a foot long, but they need to be to reach the new pouch. They have a little ball shape on the end and the eyelets are lower down. The ball pushes through the internal valve (which keeps me continent) and I feel a little 'pop' and it goes in. There is a lot less mucus now, so I only need to flush saline twice a day. Even then nothing much comes out.
I get a lot of bloating, even when I haven't eaten, and my tummy feels like jelly. I've invested in a Wii Fit (my family clubbed together and bought us a Wii for Christmas) which is great. I'm hoping to go swimming at the weekend, just need to pick up some waterproof dressings as part of the wound is still healing. But I'm most looking forward to getting back to work! I've been a prisoner in my house for nearly two years so it will be good to get out there again! It won't be easy, the economic climate being as it is. I want to do an Open University part time masters course, if I can afford it.
So all in all - although I never want a repeat of that experience again - so far it's worth it. There's not much to be done about the remaining 10% of pelvic pain, other than experimenting with certain medications with a pain specialist. There is still the option of sacral nerve therapy, but unless the situation becomes unbearable, I don't want to undergo any more surgery in the near future. But there is no denying that my quality of life has improved. I'm sure the weakness and fatigue will improve over time, although it will never fully go away.
Thank-you to those who have followed this blog and stuck with me, and for your messages of support. It's sad that there are so many of us with this condition, but comforting that there are those who understand, and support each other, and I couldn't have got through this without you. Thank you to the people from COB, and it's members. I owe a big thank you to a certain individual - she knows who she is - without whom I wouldn't be sat here writing this.
And most of all, THANK YOU the health professionals who have treated me, especially the team who did my Mitrofanoff. They were amazing.
I'm sorry I haven't posted for a while. It's been hectic.
I had my Mitrofanoff operation before Christmas. The surgeon took the trigone and the entire urethra out. The operation was 10 and a half hours long. It over-ran by three hours as the trigone was very difficult to get out, and they had to cut through the vaginal wall to remove it (shudder). I won't lie, it was incredibly difficult. Harder than having the Neobladder. The morphine I'd been taking for the last nine months had made me very constipated and I "was full of rocks" as my surgeon bluntly put it! This made the pain so much worse, and nothing seemed to work for it except the PCA which I was given on day five.
I had problems with my epidural again, I don't think I mentioned it on my Neobladder op blog, but it only works on the left side of my body.
I was in for nine days and made it home for Christmas. I just had a quiet one at home with my other half. Unfortunately I was re-admitted over new year due to a severe infection. I was in for four days and on a drip and IV antibiotics, as I couldn't keep anything down, not even sips of water.
It's now been two months since the operation. At first I was see-sawing between diarrhoea and constipation. I couldn't eat a lot, I was living off soups and smoothies. I've been taking cranberry and multivitamin supplements which help a lot. I was very weak and tired so I slept a lot. Even now, I end up taking an afternoon nap occasionally, but I'm getting stronger. I can walk to town and back (although that's not far - a five minute walk), but I need a rest afterwards.
I came off all my pain meds, which was fine at first, but then some of my pelvic pain returned so I'm back on Gabapentin and occasionally Tramadol. Now I can see how the pelvic pain and bladder pain interacted in a positive feedback loop, now that I experience the pelvic pain on it's own. But it's a definite improvement, and now the bladder pain has gone and the pelvic pain is isolated it is much easier to deal with. Breathing exercises also help (like in Thai Chi and Qi-gong).
The indwelling catheter caused me problems as due to the bacteria in the urine, the pouch produced more mucus which constantly blocked the catheter, even when the bag was replaced with a flip-flo valve. I had to use saline flushes and syringes every time I voided my bladder. This was removed last week and I was taught how to self catheterise through the new stoma which is in my navel. I picked it up in about 10 minutes, it was fairly easy once I knew what angle to put it in.
The new catheters are huge; well over a foot long, but they need to be to reach the new pouch. They have a little ball shape on the end and the eyelets are lower down. The ball pushes through the internal valve (which keeps me continent) and I feel a little 'pop' and it goes in. There is a lot less mucus now, so I only need to flush saline twice a day. Even then nothing much comes out.
I get a lot of bloating, even when I haven't eaten, and my tummy feels like jelly. I've invested in a Wii Fit (my family clubbed together and bought us a Wii for Christmas) which is great. I'm hoping to go swimming at the weekend, just need to pick up some waterproof dressings as part of the wound is still healing. But I'm most looking forward to getting back to work! I've been a prisoner in my house for nearly two years so it will be good to get out there again! It won't be easy, the economic climate being as it is. I want to do an Open University part time masters course, if I can afford it.
So all in all - although I never want a repeat of that experience again - so far it's worth it. There's not much to be done about the remaining 10% of pelvic pain, other than experimenting with certain medications with a pain specialist. There is still the option of sacral nerve therapy, but unless the situation becomes unbearable, I don't want to undergo any more surgery in the near future. But there is no denying that my quality of life has improved. I'm sure the weakness and fatigue will improve over time, although it will never fully go away.
Thank-you to those who have followed this blog and stuck with me, and for your messages of support. It's sad that there are so many of us with this condition, but comforting that there are those who understand, and support each other, and I couldn't have got through this without you. Thank you to the people from COB, and it's members. I owe a big thank you to a certain individual - she knows who she is - without whom I wouldn't be sat here writing this.
And most of all, THANK YOU the health professionals who have treated me, especially the team who did my Mitrofanoff. They were amazing.
Tuesday 27 September 2011
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.
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.
Monday 12 September 2011
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.
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.
Saturday 4 June 2011
Sunday 8 May 2011
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).
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).
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