Has anyone had Bio feed back training... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Has anyone had Bio feed back training for chronic constipation?

wartsandall profile image
8 Replies

I have raynauds and scleroderma.......I have been struggling with gastro problems for a long time....I have gross reflux, nocturnal vomiting, gastritis, uncomfortable abdominal bloating and chronic constipation..........I am on maximum PPI's, motility drugs and medication to help relieve my symptoms and the constipation.....I also have the added embarrassment of mucus discharge and unfortunately I have recently started to have stool leakage......My gastroenterologist is aware of my problems and has arranged for me to start a session of Bio feed back training to help improve the pelvic floor muscles and assist with regular bowel movements....................Has anyone had this procedure and would they recommend the treatment.....I would be grateful for any information on this embarrassing problem.... as the procedure is very invasive and I really don't want to go ahead with the treatment if it is of no benefit to my condition...........X

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wartsandall
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8 Replies

Hi WartsAndAll. I have been referred to see someone as in my case once a fortnight I have a bowel movement - have been like this for years and years. My Rheumy has done the referral so at this stage still only at the referral stage....

wartsandall profile image
wartsandall in reply to

Thank you for your reply.....I hope the medical staff find something that will help you with your problem.........take care X

Jensue profile image
Jensue

I have Raynauds & scleroderma & went through Biofeedback about 4 years ago. I was suffering with bowel leakage & needed to be near a toilet, going out was quite hard because of always worrying about wether I could get to the toilet in time. I know this works for some but I had some nerve damage & so had little feeling & I was offered a nerve stimulator implant which has worked for me.

wartsandall profile image
wartsandall in reply to Jensue

Thank you for sharing your experiences......I have recently started to have similar problems to you.....I will open my bowels then shortly after I will have mucus discharge.....sometimes if I bend over or for example if I crouch down to light the fire, I will have stool leakage.............it is a very worrying and embarrassing problem. so I have decided to grit my teeth and go ahead and have the bio feed back treatment... if I can have had two children by normal delivery,.......... I'm sure I can endure the treatment that may improve my symptoms.....take care X

Pipsmum profile image
Pipsmum

Yes, I just finished my course last week! I have chronic constipation and have had lots of pelvic floor and bowel surgery. My problem is failure of the pubo-rectalis muscle, which causes obstructed defecation. However, the bio-feedback is not a solution for me - probably because, like Jensue, I also have nerve damage. The physio is going to recommend I continue with the botox injections every 6 to 9 months as a solution.

Although the bio-feedback sounds invasive, it's no more so than having an internal - and they will do everything possible to preserve your dignity.

BTW I have Raynauds and Sjogren's Syndrome but not Scleroderma.

Good luck

Kathyx

wartsandall profile image
wartsandall in reply to Pipsmum

Thank you for your advice..........I have decided to go ahead and attend my appointment next week.....I'm sure the nursing staff will make sure that they will maintain my dignity throughout the procedure......take care X

Jensue profile image
Jensue

I found them to be excellent & very caring while doing the biofeedback and like Kathy said they do all they can to preserve your dignity.

My life has become so much better for having the implant & I would recommend that if you are offered it to give it a go.

AHM42 profile image
AHM42

I have tried this for other aspects of the condition but it didn't really suit my lifestyle because it was time consuming. However, it is painless and won't do any harm so probably worth a try.

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