Hey,
im new here but thought id share my story so far too.
I was dignosed with Crohns earlier this year...eventually! I suffered in silence for a while as I was really quite embarrased by some of my symptoms and kinda just hoped it would go away on its own (HA!). However, as christmas approached I noticed the pain I was getting was becoming more severe and alot more frequent and I made an appointment to see my GP in January. He told me I had 'a touch of IBS' and sent me away with some buscopan. After 4 weeks of getting so much worse I went back to him crying and practically begging him to make it stop and give me some kind of answer. He suggested doing some blood tests, but to be honest he seemed reluctant to do them! He honestly gave the impression that he thought i was faking!! Even though he is our family GP and has treated my mum who has had Crohns since she was 16!! You would think he might put 2 n 2 together eh?? I was devasted!
Anyway, after my results flagged up some abnormality and showed i was quite anemic he referred me to the hospital to see a Gastroenterologist who is amazing, he listens to me!! Yay!! He immediately got me an appointment for a colonoscopy (horrific btw!!) Which showed severe inflammation at the start of the small intestine but he couldnt see how far the inflammation continued on. I was put straight on budesonide and iron tablets, and after nearly 3 months... I was worse. The steroids had made no difference whatsoever, oh except I now have a worse moustache than my husband and bigger side burns than elvis! Hehe!
I was struggling to eat, eating makes the pain worse. I went from a healthy 10st 6lbs to 8st12lbs very quickly.
The iron tablets were actually doing more harm than good as they made me soooooooo constipated! So I went for intervenous iron therapy instead, it made a huge difference, I found I was a little more awake and alert, not quite the zombie my workmates have come to recognise me as!
Also, I had to go for a MRI scan which revealed that the inflamed part of my small intestine was just over 30cm. So Doc changed my med to Predisolone, 40mg a day for the first 2weeks and reduce by 5mg each week after that. Im now on week four of this medication and all Ive done is eat eat eat! However the pain is still the same, if not getting worse. It keeps me up during the night and on the evenings when i do manage to sleep a little im woken up dripping in sweat (apparantly its a side affect of the steroid), i mean really dripping! my hair and my pillow are soaking!
Im feeling sick all the time now too and im constantly trying not to vomit on people.
My weight has started to pick up a little, im at 9st 3lbs now and maintaining it ok. But im feeling a little depressed that nothing seems to be working, the pain completely floors me every time now and im sick of getting strange looks from customers at work.
Most people at work have been very supportive and are trying to understand, but there have a few incidents with my boss, one where i was in extreme pain but i wouldnt let myself make a scene infront of the customers, so i said to my boss 'im just nipping to the loo' i tried to keep it casual but she could quite clearly see the pain in my face and the tears starting to stream down my cheeks and yet she said ' you'll get your break soon, you need to see to this customer first' There were atleast 4 other members of staff all free to deal with this customer and she couldnt even give me the 2mins i needed to let this pain pass. I could understand why she would do this if she didnt know my situation but I had a meeting with her 2days after i was diagnosed and poured my heart out to her and explained it all. Thats what devastated me, its hard enough trying to explain Crohns to someone, but for them to brush it off like its nothing is so infuriating!:ymad:
Anyway, im seeing my consultant again on wed for a follow up about the steroids. So wish me luck that whatever path he puts me on next will be the one that puts this into remission. Because, emotionally, Im not sure how much more I can take. Its so draining being ok one minute then doubled over in pain the next. Not being able to sleep, eat or go to the toilet properly. Making plans and cancelling them last minute cause your ill.
Any ideas what my doc might try next? To be honest im kinda hoping he suggests surgery as all the meds arent working and the side affects are just awful.
Sorry for rambling on, its just nice to have somewhere i can vent about this without feeling judged or beeing told to 'change the record'.
Thanks
im new here but thought id share my story so far too.
I was dignosed with Crohns earlier this year...eventually! I suffered in silence for a while as I was really quite embarrased by some of my symptoms and kinda just hoped it would go away on its own (HA!). However, as christmas approached I noticed the pain I was getting was becoming more severe and alot more frequent and I made an appointment to see my GP in January. He told me I had 'a touch of IBS' and sent me away with some buscopan. After 4 weeks of getting so much worse I went back to him crying and practically begging him to make it stop and give me some kind of answer. He suggested doing some blood tests, but to be honest he seemed reluctant to do them! He honestly gave the impression that he thought i was faking!! Even though he is our family GP and has treated my mum who has had Crohns since she was 16!! You would think he might put 2 n 2 together eh?? I was devasted!
Anyway, after my results flagged up some abnormality and showed i was quite anemic he referred me to the hospital to see a Gastroenterologist who is amazing, he listens to me!! Yay!! He immediately got me an appointment for a colonoscopy (horrific btw!!) Which showed severe inflammation at the start of the small intestine but he couldnt see how far the inflammation continued on. I was put straight on budesonide and iron tablets, and after nearly 3 months... I was worse. The steroids had made no difference whatsoever, oh except I now have a worse moustache than my husband and bigger side burns than elvis! Hehe!
I was struggling to eat, eating makes the pain worse. I went from a healthy 10st 6lbs to 8st12lbs very quickly.
The iron tablets were actually doing more harm than good as they made me soooooooo constipated! So I went for intervenous iron therapy instead, it made a huge difference, I found I was a little more awake and alert, not quite the zombie my workmates have come to recognise me as!
Also, I had to go for a MRI scan which revealed that the inflamed part of my small intestine was just over 30cm. So Doc changed my med to Predisolone, 40mg a day for the first 2weeks and reduce by 5mg each week after that. Im now on week four of this medication and all Ive done is eat eat eat! However the pain is still the same, if not getting worse. It keeps me up during the night and on the evenings when i do manage to sleep a little im woken up dripping in sweat (apparantly its a side affect of the steroid), i mean really dripping! my hair and my pillow are soaking!
Im feeling sick all the time now too and im constantly trying not to vomit on people.
My weight has started to pick up a little, im at 9st 3lbs now and maintaining it ok. But im feeling a little depressed that nothing seems to be working, the pain completely floors me every time now and im sick of getting strange looks from customers at work.
Most people at work have been very supportive and are trying to understand, but there have a few incidents with my boss, one where i was in extreme pain but i wouldnt let myself make a scene infront of the customers, so i said to my boss 'im just nipping to the loo' i tried to keep it casual but she could quite clearly see the pain in my face and the tears starting to stream down my cheeks and yet she said ' you'll get your break soon, you need to see to this customer first' There were atleast 4 other members of staff all free to deal with this customer and she couldnt even give me the 2mins i needed to let this pain pass. I could understand why she would do this if she didnt know my situation but I had a meeting with her 2days after i was diagnosed and poured my heart out to her and explained it all. Thats what devastated me, its hard enough trying to explain Crohns to someone, but for them to brush it off like its nothing is so infuriating!:ymad:
Anyway, im seeing my consultant again on wed for a follow up about the steroids. So wish me luck that whatever path he puts me on next will be the one that puts this into remission. Because, emotionally, Im not sure how much more I can take. Its so draining being ok one minute then doubled over in pain the next. Not being able to sleep, eat or go to the toilet properly. Making plans and cancelling them last minute cause your ill.
Any ideas what my doc might try next? To be honest im kinda hoping he suggests surgery as all the meds arent working and the side affects are just awful.
Sorry for rambling on, its just nice to have somewhere i can vent about this without feeling judged or beeing told to 'change the record'.
Thanks
