Hi everyone,
I have been dipping into this forum a little over the last few weeks and now things have got so bad I would really appreciate some advice on what to do next please. Sorry for the essay, but its hard to shorten it
Brief history: originally diagnosed with Crohns 2005, after 12 years of undiagnosed symptoms. Hospitalised in 2005 after repeatedly haemorrhaging from back passage, had two emergency colonoscopies first diagnosed ulcerative colitis, second after symptoms continued to worsen diagnosed crohns and I was put on drip feed for 11 days and liquid/bland diet to recover. Treated with anti-inflammatories, steroids and finally immunosuppressant over course of next 5 years till I went into remission.
Fast forward to April of this year and my symptoms have returned with a vengeance, difference is this time I have three young children (1,2 and 5) to care for and am beginning to find it hard to function on a daily basis.
It took a while for my consultants appointment to come through but I have seen him and I am awaiting a colonoscopy on the 23rd Oct. Currently on 2 x 1200mg of mezavant xl (mesalazine) per day.
I started on a low fibre residue diet when symptoms first flared, but this did nothing to stop symptoms, I was prescribed a high dose of steroids from the GP whilst awaiting my consultants appointment, but had a severe reaction to these and had to be taken off them (I was one of the 5% you read about on the side effect leaflet that became disorientated, anxious, unable to think straight etc). When I went to see my consultant and showed him my low fibre/low residue diet he replied that they don't recommend that anymore??? That I was to eat normally, just not eat anything that aggravated me. So this is what I did, avoided the obvious triggers, spicy and fatty foods, alcohol, caffeine, too much milk and so on. Well surprise surprise my symptoms have got far far worse. I am now back to eating low fibre, low residue but am in a worse way than before!
I have an appointment tomorrow with my GP where I am going to ask about a liquid diet and my suitability for that, as now I cannot seem to eat anything with out being in pain and the urgency to go to the toilet frequently throughout the day. I just don't want to eat at all, but need the energy to look after the kids.
I am lucky in that I work from home, as I would not be able to work in a setting outside of the home at the moment as I have too many 'accidents' and need instant, quick access to a toilet. My main difficulty at the moment is the school/nursery run in the morning, I have to drop the children off in 3 different locations and have had to start wearing protection as I frequently have an 'accident' whilst out of the house with them. I get anxious about any car journey over 20 mins as I have had accidents in the car. I have to abandon shopping trolleys in shops, excuse myself from social settings and go home early, divert car journeys to visit pubic toilets. It gets me down so much that I just want to sob about the indignity and anxiety of it all.
Any help and advice would be much appreciated, and thank you for taking the time to read to the end.
I have been dipping into this forum a little over the last few weeks and now things have got so bad I would really appreciate some advice on what to do next please. Sorry for the essay, but its hard to shorten it
Brief history: originally diagnosed with Crohns 2005, after 12 years of undiagnosed symptoms. Hospitalised in 2005 after repeatedly haemorrhaging from back passage, had two emergency colonoscopies first diagnosed ulcerative colitis, second after symptoms continued to worsen diagnosed crohns and I was put on drip feed for 11 days and liquid/bland diet to recover. Treated with anti-inflammatories, steroids and finally immunosuppressant over course of next 5 years till I went into remission.
Fast forward to April of this year and my symptoms have returned with a vengeance, difference is this time I have three young children (1,2 and 5) to care for and am beginning to find it hard to function on a daily basis.
It took a while for my consultants appointment to come through but I have seen him and I am awaiting a colonoscopy on the 23rd Oct. Currently on 2 x 1200mg of mezavant xl (mesalazine) per day.
I started on a low fibre residue diet when symptoms first flared, but this did nothing to stop symptoms, I was prescribed a high dose of steroids from the GP whilst awaiting my consultants appointment, but had a severe reaction to these and had to be taken off them (I was one of the 5% you read about on the side effect leaflet that became disorientated, anxious, unable to think straight etc). When I went to see my consultant and showed him my low fibre/low residue diet he replied that they don't recommend that anymore??? That I was to eat normally, just not eat anything that aggravated me. So this is what I did, avoided the obvious triggers, spicy and fatty foods, alcohol, caffeine, too much milk and so on. Well surprise surprise my symptoms have got far far worse. I am now back to eating low fibre, low residue but am in a worse way than before!
I have an appointment tomorrow with my GP where I am going to ask about a liquid diet and my suitability for that, as now I cannot seem to eat anything with out being in pain and the urgency to go to the toilet frequently throughout the day. I just don't want to eat at all, but need the energy to look after the kids.
I am lucky in that I work from home, as I would not be able to work in a setting outside of the home at the moment as I have too many 'accidents' and need instant, quick access to a toilet. My main difficulty at the moment is the school/nursery run in the morning, I have to drop the children off in 3 different locations and have had to start wearing protection as I frequently have an 'accident' whilst out of the house with them. I get anxious about any car journey over 20 mins as I have had accidents in the car. I have to abandon shopping trolleys in shops, excuse myself from social settings and go home early, divert car journeys to visit pubic toilets. It gets me down so much that I just want to sob about the indignity and anxiety of it all.
Any help and advice would be much appreciated, and thank you for taking the time to read to the end.