Bladder and bowel issue

[Christie22]

My father has CMT and manages well bless him has recently experienced over activity with bowel and bladder excessively so at times then over to inactivity at others . Has anyone else had these issues he’s waiting to speak to the consultant I feel sure there is another piece of medication that might help . Thank you

[REGreen]

Dear Christie,

My sister and I have type 2 CMT with an, as yet, unidentified mutation. In the last few years we have both developed bowel problems, which add to the problems of getting out and about. Nothing severe or impossibke to cope with, just a need to stay near the loo for the first part of the day. We haven't had any trouble with under activity. It does sound a little like some symptoms of irritable bowel syndrome so he needs to be checked for that We have both had investigations which reveal nothing but a pair of healthy large bowels, so no obvious cause. We had been inclined to dismiss it as "just the way things were", but are now wondering whether our sympathetic nervous system could be involved. This is not something for which we have been any medication, so I cannot offer any help there, but I shall ask my neurologist when, if , I see her again.

Good luck to your father getting the problem looked at and treated. I shall be interested to hear if he finds it is a part of CMT.

RE Green

[Christie22 in reply to REGreen]

Thank you I’ll certainly let you know of any news have you had any issue with the bladder ? Frequency etc

[REGreen in reply to Christie22]

Thanks for getting . No, no bladder problems for either of us.

[Ladywonder in reply to REGreen]

My mother had surgery years ago for her bladder when they got in to do surgery they found her bladder and bowel were affect by CMT they did a very extensive surgery she has problems since but copes with it 25 years later . They told her back then child birth and CMT played a key role in her problems. I so worry about this now I'm the age she was and am now seeing issues.

[Wobble13]

I am male with type 1 a CMT , I have had constant problems in the way you have described in your father. I have had numerous scans a colonoscopy and test for my bladder function. With me its entirely down to my nervous system. The drugs offered just made things worse as they seem to try to suppress the bladder function. Be VERY careful with specialists on the NHS as the many I have met have very little idea outside the normal problems and what there doing as regard to CMT . This despite constant reminders of how it affects the nervous system.To keep it short this is one example: A Urologist decided without testing that I required an operation on the neck of my bladder to improve the urine flow. I challenged this and successfully managed to have flow test with a specialist centre. The nurse confirmed straight away I was right in looking at my nervous system. The head of Urology who I met later confirmed this operation would have been quote " a disaster".

I would advise avoid medication as far as possible due to side affects.

The treatment that worked for me is acupuncture. Also avoiding caffeine helps.

He needs to look at his diet for triggers as well and avoid processed food as much as possible. It always worries me when people say thing like "another piece of medication".

[Christie22 in reply to Wobble13]

Thank you for such a frank and open response it’s appreciated . My father has discovered withdrawal of caffeine has certainly helped . My father was given a medication for the prostrate that made him quite unwell and as you rightly said made things worse he quickly stopped using this . I’d be interested to know how often you receive acupuncture and will most certainly convey this to my father . He has been as you say working through the things that simply aggravate the situation did you find anything in particular affected you ?

[Wobble13 in reply to Christie22]

HiI have two acupuncture sessions a month. Please be aware if after the first two sessions there is not any improvement in anyway then it might not be for him ( it does not work for everyone and a good acupuncturist should tell you this) or you have to find another acupuncturist I felt an increase in energy and muscle strength almost straight away but the bladder improvement took longer.

I find in general keeping your weight down helps, I try to avoid anything processed, refined sugar is poison and very inflammatory,I struggle constantly with this as it medically is more addictive than cocaine and have ended up not buying and storing anything in the house like biscuits. I found adding plenty of natural fat like butter to your diet helps stop cravings as it stops the bowels for demand for food as sugar does the opposite.

If your concerned about fat: I am 53 and on no medication, my blood pressure and colesterol are well within limits. I could just be lucky.

youtube.com/watch?v=dBnniua...(Not working as expected?)

Intermittent fasting produces some good results. Try stop eating at 7pm and not eating until 11am the next day. There is plenty of information on the web and clinical papers have been written following trails confirming it helps CMT due to strengthening the myelin sheaf round the nerves.

If your father experiences acid reflux try apple cider vinegar in water ( must be organic

and with mother). I use Biona. 1 tbsp in water 10 minutes before food once a day to start.

It is a lot of work to narrow things down and you have to remember that you have a flawed nervous system. I went from desperate to coping and some very good weeks.

I tend to find when my bowel plays up my bladder follows very quickly.

I also found avoiding cold food also helps your bowel has a temperature ideal for digestion and cold food stops that. I avoid in general salads and uncooked food.

I hope this this is helpful.

[Christie22 in reply to Wobble13]

Thank you yes it could be I have a condition which is aggravated by sugars so I am well aware of the inflammatory affects . I will share all your considerations with my father much appreciated .