Hello all,
I was diagnosed with Crohns disease after being hospitalised in 2010, I lost 2 stone in a month, was visiting the loo 20 plus times a day easily mostly to pass blood and was vomiting after eating.
Id sufferd with Symptoms since the age of 16 and im now 25, Id visited my gp for years telling him i believed i had crohns or UC but he dismissed it and told me i had piles :/!
Im on the infliximab immuno suppressant and have been in remission until about a month and a half a go, I was going to the toilet as normal but noticed that there was bloods and clots in it and knew straight away it was the crohns rearing its ugly head again. I got intouch with my ibd nurse and a colonoskapy was arranged which showed that as thought the crohns was slightly flare up in the rectum,i was given suppositries and sent on my way.
The suppositries didnt seem to do anything, i tried to go about my life as normal and in the middle of town whilts with my partner got an intense cramp and gurgeling in my stomach and KNEW i needed the loo, unfortuantley we were unable to get to one and i sh*t myself in the middle of town, blood, mucus-the lot.
I rung my ibd nurse who failed to get back to me despite voice messages left for her dailey, I then saw my gp who perscriped a foam this you insert into your bum and steroids.
At the point the crohns is pretty bad, im house bound and off work, a few weeks later it still hasnt cleared up and all my body is covered in a blotchy rash which ive never had before but is apparently linked to crohns. Also when on the loo i get cramps and the intensity is so much that it makes me dry heave like im going to hrow up, sweat and tears steam down my face.
At the hospital they tell me my white blood count is high which is normal in a flare up, they give me more steroids and send me on my way.
2 days later i have my infliximab treatment at the hospital, i tell my ibd burse that ive left her voicemails and whats going on, and shes says 'oh well from your colonsokapy youre crohns isnt active your just bleeding from your bum' to which i respond 'my colonoskapy was over a month ago,as ive said before its got worse since then and if im not bleeding because of my crohns the surley thats even more concerning,whats wrong with me' my ibd nurse was like 'hmm,yeh well i see what you mean' she the went onto say 'well were running out of options' i said 'ive looked into it and there are lots of different options, theres different tablets ive never had before and theres the injections you can do at home yourself??'
she then said she was going to speak to the consultant and said 'Its not active its just bleeding from your rectum' at this point i was infureated and said 'YES! A MONTH AGO IT WAS JUST BLEEDING FROM MY RECTUM WHY IT SO HARD TO COMPREHEND THAT ITS GOTTEN WORSE SINCE THEN,SURLEY YOU HAVE THE KNOWLEGE THE CROHNS CHANGES ' she was very dismissive i was in tears and she just let me leave without comforting me. Very cold lady.
When i got home i had a voicemail from her saying 'ive told the consulatant youre unhappy with the infliximab and hes going to discuss putting you on something else' i rung back no answer and left a voice mail for her saying' im really confused not once have a said im unhappy with the treatment its kept me in remission for 3 years' she left one back saying' i think your missunderstanding youve said the treatment didnt work so i said we will have to look at other options' I left another voicemail saying' NO, you said we were running out of options so i said no there are other options and listed them'
I am at my absolute wits end, My ibd nurse just doenst care, i find her extemley cold and argumentitive,should she be supporting me?
The worst thing you can say to someone who is in pain ans sh*tting blood is 'oh your crohsn isnt active' Based on a colonoskapy from over a month ago.
I feel so incredibly alone,despite support from my family and partner, i just feel like i cant do this anymore and i want to give in.
Im on steroids at the min ive bin told to take 4 everyday but ive been taking six and still theres blood and the cramps are unbearable, my stoamch feels constanly unsettled, ive got a months sick note off worth and the pressure is on to get better and i just cant see how its going to happen.
I feel alone n like i just need to death with it,and im struggeling. Its eating away and me and i just feel so low.
I just want my life back, i want to be back at work i was to be my old self, and i cant.
Im having loads of sleep 12 plus hours a night and when i wake up i need an hours rest in bed just from waking up.
I just really dont know what to do or where to go from here, any advise is much appreciated and ill apologise in advance for the crazy spelling and stuff in this im just really upset and have wrote in quiclky.
thanks xx
I was diagnosed with Crohns disease after being hospitalised in 2010, I lost 2 stone in a month, was visiting the loo 20 plus times a day easily mostly to pass blood and was vomiting after eating.
Id sufferd with Symptoms since the age of 16 and im now 25, Id visited my gp for years telling him i believed i had crohns or UC but he dismissed it and told me i had piles :/!
Im on the infliximab immuno suppressant and have been in remission until about a month and a half a go, I was going to the toilet as normal but noticed that there was bloods and clots in it and knew straight away it was the crohns rearing its ugly head again. I got intouch with my ibd nurse and a colonoskapy was arranged which showed that as thought the crohns was slightly flare up in the rectum,i was given suppositries and sent on my way.
The suppositries didnt seem to do anything, i tried to go about my life as normal and in the middle of town whilts with my partner got an intense cramp and gurgeling in my stomach and KNEW i needed the loo, unfortuantley we were unable to get to one and i sh*t myself in the middle of town, blood, mucus-the lot.
I rung my ibd nurse who failed to get back to me despite voice messages left for her dailey, I then saw my gp who perscriped a foam this you insert into your bum and steroids.
At the point the crohns is pretty bad, im house bound and off work, a few weeks later it still hasnt cleared up and all my body is covered in a blotchy rash which ive never had before but is apparently linked to crohns. Also when on the loo i get cramps and the intensity is so much that it makes me dry heave like im going to hrow up, sweat and tears steam down my face.
At the hospital they tell me my white blood count is high which is normal in a flare up, they give me more steroids and send me on my way.
2 days later i have my infliximab treatment at the hospital, i tell my ibd burse that ive left her voicemails and whats going on, and shes says 'oh well from your colonsokapy youre crohns isnt active your just bleeding from your bum' to which i respond 'my colonoskapy was over a month ago,as ive said before its got worse since then and if im not bleeding because of my crohns the surley thats even more concerning,whats wrong with me' my ibd nurse was like 'hmm,yeh well i see what you mean' she the went onto say 'well were running out of options' i said 'ive looked into it and there are lots of different options, theres different tablets ive never had before and theres the injections you can do at home yourself??'
she then said she was going to speak to the consultant and said 'Its not active its just bleeding from your rectum' at this point i was infureated and said 'YES! A MONTH AGO IT WAS JUST BLEEDING FROM MY RECTUM WHY IT SO HARD TO COMPREHEND THAT ITS GOTTEN WORSE SINCE THEN,SURLEY YOU HAVE THE KNOWLEGE THE CROHNS CHANGES ' she was very dismissive i was in tears and she just let me leave without comforting me. Very cold lady.
When i got home i had a voicemail from her saying 'ive told the consulatant youre unhappy with the infliximab and hes going to discuss putting you on something else' i rung back no answer and left a voice mail for her saying' im really confused not once have a said im unhappy with the treatment its kept me in remission for 3 years' she left one back saying' i think your missunderstanding youve said the treatment didnt work so i said we will have to look at other options' I left another voicemail saying' NO, you said we were running out of options so i said no there are other options and listed them'
I am at my absolute wits end, My ibd nurse just doenst care, i find her extemley cold and argumentitive,should she be supporting me?
The worst thing you can say to someone who is in pain ans sh*tting blood is 'oh your crohsn isnt active' Based on a colonoskapy from over a month ago.
I feel so incredibly alone,despite support from my family and partner, i just feel like i cant do this anymore and i want to give in.
Im on steroids at the min ive bin told to take 4 everyday but ive been taking six and still theres blood and the cramps are unbearable, my stoamch feels constanly unsettled, ive got a months sick note off worth and the pressure is on to get better and i just cant see how its going to happen.
I feel alone n like i just need to death with it,and im struggeling. Its eating away and me and i just feel so low.
I just want my life back, i want to be back at work i was to be my old self, and i cant.
Im having loads of sleep 12 plus hours a night and when i wake up i need an hours rest in bed just from waking up.
I just really dont know what to do or where to go from here, any advise is much appreciated and ill apologise in advance for the crazy spelling and stuff in this im just really upset and have wrote in quiclky.
thanks xx
