Any advice?

[gemaidie]

any advice?

Hi
Im Gemma im 30 and i have a little boy who is 2 and a half i was diagnosed with crohns years ago after a colonoscopy i started with the consultant at my local hospital he placed me on steriods and asacol which i took although i was ill the whole time with constant vomiting i finished my corse of steriods and the consultant though the vomiting would stop but it continued getting steadly worse i spoke to my gp and he thought i should stop with the asacol and go back to hospital which i did but the consultant told me asacol was the only thing he was prepared to prescibe to me i found this odd and upsetting but my gp just refered me to the next closes hospital. where i was put on pentasa and told its not out of the ordinary to have such a reaction but i have struggled with pentasa still getting bouts of extreme sickness and they only reduce my bowel movements im still in a great deal of pain a lot of the time and as i said i know have a little boy and i feel his life is being affected so much my mum has been a god send but she has just been diagnosed with bowel cancer and i cant keep being ill like this does anyone have any suggestions on how to speak to my consultant about this as i have always felt very fobbed off by them
Thank you Gemma

 

[Guest]

hi Gemma, welcome to the forum. really sorry to hear about your struggles right now, and your mum's diagnosis.

it must be really difficult when you go to the right people asking for help, and end up feeling they've not really tried to help that much

couple of thoughts here... how long is it since your colonoscopy? if it's a few years, then it might be an idea to suggest to your consultant that you need another one.. Crohn's can change, it may not be the same picture as the first scope portrayed.

you may have read a few threads on here and found that there are many other meds available for Crohn's apart from steroids & asacol.. maybe you could print out some info on some of the standard ones and take the info to your consultant.. ask him to peruse them and then let you know if you're a candidate for any of the meds.

sometimes we really have to stand up and be heard when it comes to our health. i know it shouldn't be that way, but i've certainly had to battle for things for myself and my family in the past, so sometimes it's called for.

you could also keep a daily diary of how your symptoms are, from now until you next see your consultant, and give him it to read through - he may not realise how much you're suffering. and stress how hard you're finding life right now.

i know what it's like in a clinic appointment environment.. we store up all these questions and worries, but end up not voicing most of them because we feel rushed. BUT - you need some proper time with your consultant, and you're entitled to it.. so make sure you don't leave next time until you've got everything out you want to say.

good luck Gemma, keep us posted.