Colostomy

[Fuchia]

I have been recommended for colostomy for Scleroderma bowel. Been using Qufora cone toilet system for over 2 years and having PTNS treatment. Now this isn’t enough. Need colostomy for quality of life. Just wondering if anyone on here as a colostomy and have they be it fitted. Thanks so much.,

[Hidden]

I’m following this post because I have such similar issues with similar meds and same self irrigating systems. I also have recently been diagnosed with severe gastroparesis.

I’m so fed up with my life being dominated by my dysfunctional bowels and am also ready to have a conversation with the colorectal surgeon about a colostomy. My rheumatologist seems to be becoming more understanding of this now that my gastric emptying scan has shown the extent of my GI issues so she’s arranged various investigations and has written to the colorectal surgeon I spoke to last year about finally getting motility testing he promised.

Part of my problem is that opinions are divided between my doctors on what’s causing all my problems - Sjögren’s related autonomic dysfunction and dryness or scleroderma fibrotic and vasculitic changes - which I’m antibody positive for but don’t have much sign of on the outside ie Sine.

I’d say I don’t really care which - but I do if it influences how effective my self management is and whether surgery to fit a stoma would be safe.

[Fuchia in reply to Hidden]

Hi there 282523, I to have Sjogrens, Fibromyalgia, OA and a couple of other overlapping conditions. I am under Royal Free, in London. I do have a lot of confidence with them. They have been very good to me. I am not really too hesitant at the actual procedure. More the coping with living and adjusting to life with it. Like yourself, at the moment my bowels dominate my day and restricts me so much. Let alone the discomfort permanently.

[wiggywoo in reply to Fuchia]

My bowel problems due to scleroderma are destroying my life. I have agonising pain from food not passing through my gut for days on end then vomiting then severe diarrhoea for 48 hours. This happens week in week out. I have tried so many ways to try to help myself as I really don’t want to go down the surgery route.I have recently discovered a liquid probiotic called SYMPROVE and after taking it for 2 weeks so far I am starting to feel a little better. I will continue to take it daily and I would recommend fellow sufferers to do the same. Over the past 11 years since diagnosis I have learnt that I have to help myself to cope with the many symptoms.

We know our body better than anyone else.

[Fuchia in reply to wiggywoo]

Thank you for that Wiggywoo. I will google it. Certainly worth a try.

[wiggywoo in reply to Fuchia]

These bowel symptoms are just the worst aren’t they. I don’t have a life. Can’t arrange to go anywhere. You know what it’s like. Sending hugs x

[Fuchia in reply to wiggywoo]

It is awful keep letting people down. Can’t really plan because each day is different. It also gets to me when people say “‘You look well.” Little do they know. Better health as hugs to you too.

[wiggywoo]

Symprove on You tube. Take a look x

[Fuchia in reply to wiggywoo]

Awww 🥰 Thank you xx