- Joined
- Nov 14, 2011
- Messages
- 950
Hi everyone,
I am Sharon, 37 years old and married with 2 lovely boys, aged 12 & 7.
This may go on so apologies for going on!
My story started last November(2010) when I got flu really bad and this resulted in a trapped nerve in my neck. Went to the docs and they gave me Diclofenic to help reduce the inflamation. Started taking it and a few days later I had really bad pain in my left side. Didnt really think it was connected with the tablets and so carried on taking them.
After a week I was bleeding quite a lot and my bowel habbits had changed quite a lot. Previously I had always been on the constipated side, IBS diagnosis at 15 years old, but started going to the loo about 9 times a day, blood and mucous(sorry if too much info)
Went to the docs and they said it could be piles and gave me some cream to try. Did no good so went back just before xmas. They gave me some pessaries to try. So gave them a good go but no change and the pain was getting worse and the bleeding was not stopping.
I went back to my doctors again and finally saw one who listened to what I had to say, read my notes and got me on the list for a colonoscopy.
Had a colonoscopy appointment through for 1st April!!
I went back and saw my doctor before this as my pain was getting worse, my stomach had bloated and I was so tired and dizzy I didnt know what to do with myself. He then informed me that the gastro team at the hospital had gotten in touch with him and wanted to know why he had requested a colonoscopy for me. Apparantly he was very naughty and was supposed to get me to see a consultant first before I could have any serious tests done in case I was wasting their time. Anyway, I went to see a consultant and he decided to 'let' me have my colonoscopy, how generous!
Went and had the test and the sedation didnt work, really not happy, so was awake through it all. The doc who did it was very nice though. She took lots of biopsies and on the spot told me it looked like distal colitis with a few ulcers. Went back to see the consultant again a few weeks later. Saw a different one this time. He started off by asking me why I was there. I gave him my story and asked if he had had the results of my biopsies yet and my colonoscopy. He said he was sure the results were in my file somewhere but he was not going to go through them as he didnt have time. I was shocked to say the least but I thought ok, give you one more chance. I then asked him what he thought was wrong with me. His answer was 'not much, I think its all in your head'. I am normally quite shy around people I dont know but I couldnt help myself. I stood up and told him if he didnt think there was anything wrong with me then he needed to get his eyes tested and maybe think of a new career. Then I walked out.
Anyway, saw my GP he went mental got on the phone and shouted at someone at the hospital and I went to see another consultant. Very nice man he is as well. I got diagnosed with Ulcerative Colitis and give Pentasa to try.
To condense this down, or I may be here all night, they didnt work, so he upped my dose to 9 tablets a day and added in asacol. That didnt even touch me so they started me on Prednisolone. GRRRRRR. Was put on 40mg a day, reducing down 1 a week each week. It started to help so I was able to go out and about for 2 hours a day. Brill, I thought. Then when I got to 20mg a day all hell broke loose and I was really ill again. Was admitted into hospital where they decided to give me more pred and do a flexible sigmoidoscopy. The amount of pred they gave me did help and the flexi showed I still had ulcers in my decending colon and inflamation. I was discharged 3 days later after being taken off the Pentasa but given mesalazine enemas to try.
Still no good so went back to see consultant. He then had the bright idea of stopping all my meds to see what would happen. What happened was I didnt leave my house for nearly 3 months apart from going to see my consultant so he could see what happened. I will admit I was very emotional and upset when i went to see him and, may i be forgiven, I did shout at him and asked him what the bloody hell did he think would happen. I was worse then than when I got admitted into hospital.
So to wrap up my story, I have had an MRI, that showed inflamation and scarring in my terminal illeum, no where near my colitis and they now think I may have crohns as well. Have tried Azathioprine and 6MP(mercaptopurine) and have had severe allergic reactions to both. Am having another colonoscopy on 8th December and I as really scared as to what they will find. They have told me I will have to have surgery because I am medication resistant but cant say what they will do as they dont know if I have crohns or not. I am now having Infliximab/Remicade infusions to try to help me.
I am really sorry for gong on so much but dont know where else to go as no one understands.
Well done for anyone who has made it this far in reading my story, I wish I could give you a medal!
Many thanks for reading and for any replies.
Sharon xxxxxxx
I am Sharon, 37 years old and married with 2 lovely boys, aged 12 & 7.
This may go on so apologies for going on!
My story started last November(2010) when I got flu really bad and this resulted in a trapped nerve in my neck. Went to the docs and they gave me Diclofenic to help reduce the inflamation. Started taking it and a few days later I had really bad pain in my left side. Didnt really think it was connected with the tablets and so carried on taking them.
After a week I was bleeding quite a lot and my bowel habbits had changed quite a lot. Previously I had always been on the constipated side, IBS diagnosis at 15 years old, but started going to the loo about 9 times a day, blood and mucous(sorry if too much info)
Went to the docs and they said it could be piles and gave me some cream to try. Did no good so went back just before xmas. They gave me some pessaries to try. So gave them a good go but no change and the pain was getting worse and the bleeding was not stopping.
I went back to my doctors again and finally saw one who listened to what I had to say, read my notes and got me on the list for a colonoscopy.
Had a colonoscopy appointment through for 1st April!!
I went back and saw my doctor before this as my pain was getting worse, my stomach had bloated and I was so tired and dizzy I didnt know what to do with myself. He then informed me that the gastro team at the hospital had gotten in touch with him and wanted to know why he had requested a colonoscopy for me. Apparantly he was very naughty and was supposed to get me to see a consultant first before I could have any serious tests done in case I was wasting their time. Anyway, I went to see a consultant and he decided to 'let' me have my colonoscopy, how generous!
Went and had the test and the sedation didnt work, really not happy, so was awake through it all. The doc who did it was very nice though. She took lots of biopsies and on the spot told me it looked like distal colitis with a few ulcers. Went back to see the consultant again a few weeks later. Saw a different one this time. He started off by asking me why I was there. I gave him my story and asked if he had had the results of my biopsies yet and my colonoscopy. He said he was sure the results were in my file somewhere but he was not going to go through them as he didnt have time. I was shocked to say the least but I thought ok, give you one more chance. I then asked him what he thought was wrong with me. His answer was 'not much, I think its all in your head'. I am normally quite shy around people I dont know but I couldnt help myself. I stood up and told him if he didnt think there was anything wrong with me then he needed to get his eyes tested and maybe think of a new career. Then I walked out.
Anyway, saw my GP he went mental got on the phone and shouted at someone at the hospital and I went to see another consultant. Very nice man he is as well. I got diagnosed with Ulcerative Colitis and give Pentasa to try.
To condense this down, or I may be here all night, they didnt work, so he upped my dose to 9 tablets a day and added in asacol. That didnt even touch me so they started me on Prednisolone. GRRRRRR. Was put on 40mg a day, reducing down 1 a week each week. It started to help so I was able to go out and about for 2 hours a day. Brill, I thought. Then when I got to 20mg a day all hell broke loose and I was really ill again. Was admitted into hospital where they decided to give me more pred and do a flexible sigmoidoscopy. The amount of pred they gave me did help and the flexi showed I still had ulcers in my decending colon and inflamation. I was discharged 3 days later after being taken off the Pentasa but given mesalazine enemas to try.
Still no good so went back to see consultant. He then had the bright idea of stopping all my meds to see what would happen. What happened was I didnt leave my house for nearly 3 months apart from going to see my consultant so he could see what happened. I will admit I was very emotional and upset when i went to see him and, may i be forgiven, I did shout at him and asked him what the bloody hell did he think would happen. I was worse then than when I got admitted into hospital.
So to wrap up my story, I have had an MRI, that showed inflamation and scarring in my terminal illeum, no where near my colitis and they now think I may have crohns as well. Have tried Azathioprine and 6MP(mercaptopurine) and have had severe allergic reactions to both. Am having another colonoscopy on 8th December and I as really scared as to what they will find. They have told me I will have to have surgery because I am medication resistant but cant say what they will do as they dont know if I have crohns or not. I am now having Infliximab/Remicade infusions to try to help me.
I am really sorry for gong on so much but dont know where else to go as no one understands.
Well done for anyone who has made it this far in reading my story, I wish I could give you a medal!
Many thanks for reading and for any replies.
Sharon xxxxxxx
