3 years post radical cystectomy

Hi Dewdrop,I’m so sorry you are not feeling good.It does sound like you need some more tests to find a cause for your symptoms.Have you had your magnesium levels checked ? I would want to know if the diarrhoea is anything to do with the surgery.Have they taken any stool samples ? I feel like you should be seeing an empathetic gp and explaining how this is affecting you mentally and physically.After all you have been through you should be enjoying life.I hope you can see someone who will help you.Love Jane xx

Hi Dewdrop,

I'm about the same time after the operation as you and thought I needed Vit B too, despite my results being midway along the results bar. In my case it seems that my problems with exhaustion were being caused by medication for Atrial Fibrillation (diagnosed in the run-up to the operation and possibly caused by Chemo or Covid). I'm much livelier now.

I can't offer much re diarrhea but I know a bit about back and hip problems as I have suffered those for almost 50  years and tried lots of things to solve them, some of which worked eg good supportive mattress and pillow, proper supportive back chairs and physiotherapy, Alexander Technique (for posture) and Pilates for core strength plus daily walks.

I no longer take painkillers (which can affect your stomach, by the way) because when I start limping, or get cramp in bed I return to my daily exercises, which I sadly do forget when things get busy. Even though back pain is truly awful.

But what has really helped me is that I have learnt that our core muscles are damaged during the cystectomy and it is hard to get the strength back into them. Especially as we are all told to be careful not to get a hernia. Those muscles are the ones that support the spine so we do need them to be as strong as possible.

This week I had my first proper Pilates lesson in a while (I've been doing it for 25 years) and it was great. I'm not in as much pain, the muscles in the core have perked up and I'm standing much better. And the best thing is I've cut right back on the rubbish I've been eating as comfort food so my digestion and sleep have improved a lot. I'm going back again next week and practicing during the week.

I know the above has helped me with post operative problems but everyone is different. I also know that most doctors (even orthopaedic specialists) know very little about how exercise can help with eg back pain and general misery.

If you would like to know more, there is someone called Sarah Russell who is a qualified coach online for those of us who have stomas, hers is a colostomy I think.

She has just produced material for others eg stoma nurses, physios, and pilates teachers, giving them a programme to help people like us recover. I came across her when I Googled stomas and exercise. On her website you can find lots of information and details of classes you can do with her from home. She did a webinar for the Urostomy Association that you can find on their website. Plus there was a free class on U Tube that I did. (I'm not paid to say this by the way and I'm doing my classes face to face.)

I hope this is helpful. It has certainly saved me a lot of pain and problems over the years, and especially since my operation, even if I took my time getting back to it.

All the best,

Latestart

Wow you are a star Latestart! Respect to you rebuilding yourself post-operative. My bc was treated by BCG but I had a hip replacement (small op by comparison) and my word it has been like climbing a mountain to regain my fitness. Plates exercises and lifting weights absolutely has helped. I loathe doing them but I have a charming pt who makes me laugh as I struggle. 

Hey Dewdrop, no way are you a nuisance! The whole point of the national health service is to offer help at the point of need. Do you have a nurse contact like the CNS ones? My CNS was there at my diagnosis 8 years ago and I am long over treatment but I can still phone her at the Urology dept for advice. Otherwise maybe contact Macmillan and see if they can help. In the meanwhile I can't offer medical help but on this site there are many of us who will listen and share our experiences. We know how it feels to recover from cancer. With love Hx

Hi, thanks for the messages I really appreciate your responses. I’ve reached out to my GP again today and I have a face to face appointment on Monday xx

That’s good.I really hope you get somewhere and can start enjoying life more.love Jane xx

Hi Herothedog,

Thank you for the compliment but not sure I deserve it. In fact I had a hip replaced too 10 years ago so I know that's not such a small op. Mine was a spontaneous hip fracture (I was walking along the street took a step and it broke). I was in a lot of pain - had thought it was sciatica so was fortunately holding husband's arm when I realised my left leg was swinging in the wind. That was osteoporosis, though they were worried about bone cancer for a few days, because I didn't fall,  while they gave me MRIs etc and found a surgeon (tip never break a hip on Valentines weekend during half term). I was on morphine for 5 days.

So I learnt about rehab with that op and have repeated it with the cancer I did get later!

I'm glad you have rebuilt your fitness too, sadly so many don't. I was determined to keep getting fitter and it became second nature.

All the best,

Latestart x

Just wondering, is it diarrhoea that persists for some time, or is it more frequent looseness? I’m asking because I’m 14 years on with neo and still careful about certain foods. Not necessarily a foodstuff as such, but perhaps one ingredient or means of cooking. I think it’s certainly cooking oil/fats that rush through. That makes me careful what I order in restaurants. Occasionally I’ve had a wet fart (sorry if TMI) which I put down to excess oil in cooking. 
Does sound miserable for you. I also sympathise about poor sleep and having to get up when you’ve just dropped off. Hope you get some resolution soon. 

Hi teasswill

its frequent looseness that I can’t hold it’s like water. I’ve tried to pin it down to certain foods and cooking oil/fats but is unpredictable as some times it goes straight through me and other times is absolutely fine. So going out to  enjoy food is no more unless it’s something really bland as I don’t want to chance it. Kinda ruling my life. If I have to go out in the morning I won’t eat till I get back home or if I eat at home I won’t go out till I’ve been or think I’m going to be ok. 
Im gong to see my GP on Monday to discuss all my other symptoms too. Insomnia, restless legs, back and hip pain, pins and needles in my feet and calves at night, sore soles on my feet, dizziness, headaches, exhaustion and no concentration. I can be mid sentence and forget what I was on about so I need to write everything down. 
thanks for your reply 

Hi Dewdrop,

I haven't had the looseness but some of your other symptoms are familiar the pins and needles may respond to vitamin B complex supplements - that's what my oncologist told me to take. And I recognise the brain fog. In my case I blamed the chemo and the long operation and over time things improved. I  still find myself half-way through sentences without an end sometimes  and now I'm in my seventies there may be other reasons for that. Being tired makes it worse though.

I hope the GP can help or maybe the consultants or nurses at the hospital as they will see many more bladder cancer patients.

All the best,

Latestart