Here for some help x

[UnrealRamona]

A great friend of mine found this Assoc for me a wee while back and I am hoping to get some info, insight and advice into what I have been going through for the last 8 years. My stomach/bowel problems started 8 years ago and I have seen so many consultants over the years who couldn't find the cause let alone a way to help with my symptoms. After initial investigations, when they discovered they had no idea what they were dealing with they would quietly drop me off their lists and leave me to fend for myself with continual and worsening symptoms. It has got so bad now that I can no loner eat any solid food and exist on practically fresh air and still they dilly dally and gave me no answers. The same friend who found this website found St. Marks for me and I have a referral in Jan with them,. They are my last hope. If they can't help I wonder what I will do because my life is pure hell. I can't eat, I have bouts of diarrhoea that last for days on end followed by bouts of horrendous constipation that culminate in my vomiting for hours because nothing moves in my stomach and it causes blockages. The vomiting is so severe I purge my system of its electrolytes and this results in me becoming paralysed in the face, hands and legs and hospitalisation. Sorry if this is over sharing but I am hoping that there are some answers for me on here.x

[Bluebell86]

I’m so sorry to hear that you have really been suffering with this disease. I’m on a similar time line with you as I have only just found out about PRDA and I’m 9 years in. Welcome to the group and pleased you’ve shared some of your story with us, hopefully you can take some comfort knowing that we are group of people that are living with similar consequences of the treatment. Please do keep us updated on your upcoming specialist appointment this month. Hopefully the specialist is able to suggest some new things that you are able to try. I’ve found that I’ve had to do most of the research myself then make suggestions to by gastroenterologist. Like you I suffer from obstructions and sickness which is incredibly painful and debilitating and I get very little warning that I’m going to be ill which makes it even harder to manage. I manage by taking stool softeners despite occasional diarrhoea and a prokinetic medication called prucalopride. I find this doesn’t work if I am on a liquid only diet but works well for when I am on solids. Perhaps this is something you could ask about as it doesn’t need to be taken daily and can be taken as and when so may work for you when you are constipated. I was told it was very expensive, prob why it’s taken 9 years for him to prescribe it! I feel it shouldn’t come down to money- I would remortgage my house for a cure from this!

Anyway I hope you were able to make the most of Christmas and wishing you positive outcomes from your upcoming hospital appointment.