Hello all
I am fairly new to the site and have not posted before so here is a little about me. Firstly Crohn's aside I am in my mid thirties, living with my boyfriend working as a solicitor.
I was diagnosed with Crohn's in June this year. Had been suffering from abdominal disconfort moving more to pain since I guess about October last year. Hard to be sure as in the August had my gall bladder removed after problems of and on for several years so previous periods of abdominal pain may have been caused by crohn's but attributed by me to my gall bladder. Tended to avoid doctors if I coudl so only had the gall bladder sorted when in so much pain taken to A & E.
Anyway eventually went to my GP in about Feb of this year when symptoms just gettign worse. I was getting more and more tired and more regulatr abdominal pain. Unlike many sufferers I have read about I was not losing weight and was getting more constipation that the other. First my GP jsut told me that most complaints he sees are fatigue and thought maybe I had IBS and gave me tablets and sent me for blood tests. A month later he told me I was anaemic and that the test results were a bit odd so told me to have another set. A few weeks later went back for results ( saw a different doctor this time) and was referred to a consultant.
I finally saw the registrar on behalf of the consultant in early May. She didnt really say or do much except get more blood tests adn refer me for a CT and colonoscopy but no treatment or relief given. Got a call later that day saying must come in immediately for A blood transfusion as had a haemaglobin level of under 5. 24hours and four bags of blood later I was released but with no real follow up set up. Kept calling the consultant office to chase up next appointment and also to try and get my blood levels checked again as still feeling exhausted and getting paler by the day!
Eventually managed to get through to someone and got admitted to hospital. Had another four bags of blood and put on drugs as they thought it may well be crohn's. By this stage I had a swelling in my abdomen about the size of a rugby ball.
To start I was put on 60mg Prednisone, 4 sachets of Pentasa, Lansaprozole, Calcichews and finally some pain relief. It was amazing as within 24 hours almost all pain had gone, BMs were normal and swelling in stomach had gone down massively.
I remained in hospital for about a week during which time I had a colonoscopy which was a horrendous experience. Can't imagine how it would have been if I hadnt started the steroids etc. They finally decided that it was probably crohn's and discharged me with a view to getting a barium meal and follow through.
On release I was told to taper down teh Prednisone by 5mg per week and on 100 mg azathiropine and 1000 mg Pentasa.
Since then I have got slightly worse as I have tapered down the Prednisone, exacerbated by Iron tablets prescribed by GP which I will never take again!. Have since changed GPs after earlier experiences and long saga of B12 injectiosn which wont go into here.
For the last few months have had to up th esteriods and then drop back to try to keep it under control.
At my last consultant appointment he announced that as the meds arent keeping it under control I woudl be more suited to surgery as he suspects it is in a distinct area adn has referred me to a surgeon. Since then I have had the barium follow through and await the results.
NO surgeon appointment yet but I have to say I am very reluctant at this stage to go for that as feel that 4 months after diagnosis is too soon to go for that. The thought of risking having a bag, even temporarily, just is not an option fo rme. I know many reading this site have gone through this and deal with this daily but I just feel like the doctor shoudl explore more optiosn first.
For example I have heard that the recommended dose of Azathiropine is 2mg pre kilo of body weight and if so I am on just under half the dosage so is it any wonder it is not working.
Also I would have thought it would be worth trying Infliximab or one of the other biologics (can't remember the name).
Also I am fairly new to all this and wonder how those of you feel when in remission - do you have any symptoms or are they just much more bearable. What sort of pain relief do people use - my consultant jsut says use Paracetamol but that is useless. What i find hard is lack of sleep as I wake up about half three with abdominal pain. Not horrendous but enough to keep me from sleeping properly.
Any advice or info woudl be much appreciated. In particular I am interested to hear from those whose crohn's does not give them regular diarheoa but more constipation. I have fairly regular BMs but always seems a bit of a struggle and always feel like I could go more.
Sorry to ramble on so long
Thanks for any help
SAM
Current meds
15mg Prednisone per day
100mg Azathiropine
I am fairly new to the site and have not posted before so here is a little about me. Firstly Crohn's aside I am in my mid thirties, living with my boyfriend working as a solicitor.
I was diagnosed with Crohn's in June this year. Had been suffering from abdominal disconfort moving more to pain since I guess about October last year. Hard to be sure as in the August had my gall bladder removed after problems of and on for several years so previous periods of abdominal pain may have been caused by crohn's but attributed by me to my gall bladder. Tended to avoid doctors if I coudl so only had the gall bladder sorted when in so much pain taken to A & E.
Anyway eventually went to my GP in about Feb of this year when symptoms just gettign worse. I was getting more and more tired and more regulatr abdominal pain. Unlike many sufferers I have read about I was not losing weight and was getting more constipation that the other. First my GP jsut told me that most complaints he sees are fatigue and thought maybe I had IBS and gave me tablets and sent me for blood tests. A month later he told me I was anaemic and that the test results were a bit odd so told me to have another set. A few weeks later went back for results ( saw a different doctor this time) and was referred to a consultant.
I finally saw the registrar on behalf of the consultant in early May. She didnt really say or do much except get more blood tests adn refer me for a CT and colonoscopy but no treatment or relief given. Got a call later that day saying must come in immediately for A blood transfusion as had a haemaglobin level of under 5. 24hours and four bags of blood later I was released but with no real follow up set up. Kept calling the consultant office to chase up next appointment and also to try and get my blood levels checked again as still feeling exhausted and getting paler by the day!
Eventually managed to get through to someone and got admitted to hospital. Had another four bags of blood and put on drugs as they thought it may well be crohn's. By this stage I had a swelling in my abdomen about the size of a rugby ball.
To start I was put on 60mg Prednisone, 4 sachets of Pentasa, Lansaprozole, Calcichews and finally some pain relief. It was amazing as within 24 hours almost all pain had gone, BMs were normal and swelling in stomach had gone down massively.
I remained in hospital for about a week during which time I had a colonoscopy which was a horrendous experience. Can't imagine how it would have been if I hadnt started the steroids etc. They finally decided that it was probably crohn's and discharged me with a view to getting a barium meal and follow through.
On release I was told to taper down teh Prednisone by 5mg per week and on 100 mg azathiropine and 1000 mg Pentasa.
Since then I have got slightly worse as I have tapered down the Prednisone, exacerbated by Iron tablets prescribed by GP which I will never take again!. Have since changed GPs after earlier experiences and long saga of B12 injectiosn which wont go into here.
For the last few months have had to up th esteriods and then drop back to try to keep it under control.
At my last consultant appointment he announced that as the meds arent keeping it under control I woudl be more suited to surgery as he suspects it is in a distinct area adn has referred me to a surgeon. Since then I have had the barium follow through and await the results.
NO surgeon appointment yet but I have to say I am very reluctant at this stage to go for that as feel that 4 months after diagnosis is too soon to go for that. The thought of risking having a bag, even temporarily, just is not an option fo rme. I know many reading this site have gone through this and deal with this daily but I just feel like the doctor shoudl explore more optiosn first.
For example I have heard that the recommended dose of Azathiropine is 2mg pre kilo of body weight and if so I am on just under half the dosage so is it any wonder it is not working.
Also I would have thought it would be worth trying Infliximab or one of the other biologics (can't remember the name).
Also I am fairly new to all this and wonder how those of you feel when in remission - do you have any symptoms or are they just much more bearable. What sort of pain relief do people use - my consultant jsut says use Paracetamol but that is useless. What i find hard is lack of sleep as I wake up about half three with abdominal pain. Not horrendous but enough to keep me from sleeping properly.
Any advice or info woudl be much appreciated. In particular I am interested to hear from those whose crohn's does not give them regular diarheoa but more constipation. I have fairly regular BMs but always seems a bit of a struggle and always feel like I could go more.
Sorry to ramble on so long
Thanks for any help
SAM
Current meds
15mg Prednisone per day
100mg Azathiropine
