Crohns Disease
Posted , 3 users are following.
I have had crohns disease for over 16 years now. For 12 years, I was pretty much stable, only requiring short bursts of steroids when I experienced any flare ups. I had 6 monthly check ups and never required any in patient treatment.
4 years ago my consultant decided that I should come off all medication as I was not displaying and symptoms? I was not sure that I wanted to do this, but as he was my consultant, I assumed that he knew what was best for me. How wrong was I!! In the last 4 years, i have spent almost a year on the ward in my local hospital. I have been in day medicine trying different treatments, infliximab, humira and vendisolomab, none of which have helped. I have also had colonoscopies, swallowed a camera and walked around for 8 hours whilst it recorded data, swallowed pills then had to go back for scans, to name some of the treatments I have endured. Nothing has helped,but all the time my symptoms are worse. I lost my job,as I was in hospital so much. I have now also been diagnosed with arthritis and fybromyalgia. For the last 2 years my calprotectin level has been in the 1000's, with my consultant having no explanation as to why? My diarrhea is so bad, that I spend the majority of day and night in the toilet, I am also sick almost everyday, so also take anti sickness medication daily. I have no social life anymore as I am not comfortable leaving the house. I have lost all faith in my consultant, as I have done everything that he has asked, but now he is distancing himself from me, which is really hard to take, as I do feel that it is his fault that I am in this position? I am only 48, I cannot believe that I am the only person in this position? Has anyone else had this problem?
0 likes, 2 replies
anna64644 lorraine77933
Posted
Hi Lorraine, I am so sorry to read how poorly you have been. I am wondering whether in his wisdom your GE thought that as your Crohn's was under control a period off meds to see how things went? Did he give any explanation why or maybe being on meds long term has it's own risks? I think maybe you need to start again with a new GE, a fresh approach, if you have lost faith in this one ask for a second opinion. To also have two other conditions to battle must be so hard on you. I sincerely hope you find a more sympathetic GE who can turn things around for you. My Crohn's has never been as bad as yours so perhaps other sufferers on this Forum will have some more experience and wisdom to offer you, best wishes, Anna
lorraine77933 anna64644
Posted
Thanks Anna, I appreciate you taking the time to read and reply to my post.
My GE is "supposed" to be the best in their field. I am so desperate that we looked into going private, but it turns out that they are who I would see. I am not prepared to pay to see someone that I am already seeing on the NHS? I am also being treated for depression, surprise surprise, so am taking anti depressants. I think I am just struggling to come to terms with how different my life has become. I dont think that it is anti depressants I need, I just need help from my GE, to fix what he has broken.