Hello,
I've had Crohn's symptoms for about 18 months, finally got a 'strongly suspected' Crohn's diagnosis at Christmas. In the past few months everything became become quite bad - I wasn't hospitalised, but had to stop work due to tiredness/pain/nausea, spent days unable to get out of bed, completely dependent on my partner to bring me tiny little meals, etc. I lost 11 pounds in a month and was so exhausted all the time I could barely move.
So a week ago my gastroenterologist decided that, even though he didn't have the CT scan results yet that would provide a certain diagnosis, he would start treating me. I was given Prednisolone, 30mg to start with, tapering off by 5mg a week for six weeks. Also calcium tablets (two a day) and I'm taking Feroglobin too for slight anaemia.
Yesterday I went back to see him. He had the CT results and told me I was one of the more severe cases he had seen. The report showed thickening of the bowel wall by 8mm and lymph nodes of 6mm - I don't know whether that's particularly bad? I have been put on Azathioprine from today onwards, which he warned me might take up to 18 weeks to work. If I don't get on with the Aza he said he would put me straight on Infliximab. I have an abscess/fistula (not shown by the CT, but I know it's there, and he takes my word for it), which I've been given Flagyl for, to start taking in a week's time once I've been taking Aza for a week.
There were a few things that I'm wondering about. Firstly, is it normal to be put straight on Infliximab in the event of Aza not working? Secondly, I was told that I would 'probably' need surgery soon, and certainly in the next five years - he was speaking as if it was almost a certainty, but don't doctors usually prefer to make surgery a last resort? I am a 23-year-old woman and don't especially want it any sooner than necessary. Thirdly, he told me that he hadn't said this before as he didn't want to scare me, but if it weren't for the fact that I was feeling better on the Prednisolone he was intending to have me admitted to hospital yesterday. But I don't feel THAT bad! I mean, I felt awful before, but since I've started the Pred I've been a bundle of joy and energy. Is it possible/usual to be much more ill than you feel?
Lastly, he told me (sympathetically but rather matter-of-factly) that as I taper off the Prednisolone and the Aza takes a while to kick in, all the Crohn's pain and exhaustion will come back for a while. That's my biggest concern, really. The symptoms were really beginning to ruin my career, relationship and general life before, and I can't deal with the idea that this improvement won't last. Do you think he's really just intending to have me taper off and feel terrible, or is it more likely that if I feel ill again he will put me back on the Pred just to relieve the symptoms?
Any advice/experiences are welcome. I'm feeling quite oddly calm about everything (maybe due to the steroids, or perhaps I've just reached the point where nothing can bother me!) so don't feel too anxious, more curious - I'm quite new to this, so I'd just like to hear from others who have been here and know what's 'normal' for a newly-diagnosed Crohnie, really.
I've had Crohn's symptoms for about 18 months, finally got a 'strongly suspected' Crohn's diagnosis at Christmas. In the past few months everything became become quite bad - I wasn't hospitalised, but had to stop work due to tiredness/pain/nausea, spent days unable to get out of bed, completely dependent on my partner to bring me tiny little meals, etc. I lost 11 pounds in a month and was so exhausted all the time I could barely move.
So a week ago my gastroenterologist decided that, even though he didn't have the CT scan results yet that would provide a certain diagnosis, he would start treating me. I was given Prednisolone, 30mg to start with, tapering off by 5mg a week for six weeks. Also calcium tablets (two a day) and I'm taking Feroglobin too for slight anaemia.
Yesterday I went back to see him. He had the CT results and told me I was one of the more severe cases he had seen. The report showed thickening of the bowel wall by 8mm and lymph nodes of 6mm - I don't know whether that's particularly bad? I have been put on Azathioprine from today onwards, which he warned me might take up to 18 weeks to work. If I don't get on with the Aza he said he would put me straight on Infliximab. I have an abscess/fistula (not shown by the CT, but I know it's there, and he takes my word for it), which I've been given Flagyl for, to start taking in a week's time once I've been taking Aza for a week.
There were a few things that I'm wondering about. Firstly, is it normal to be put straight on Infliximab in the event of Aza not working? Secondly, I was told that I would 'probably' need surgery soon, and certainly in the next five years - he was speaking as if it was almost a certainty, but don't doctors usually prefer to make surgery a last resort? I am a 23-year-old woman and don't especially want it any sooner than necessary. Thirdly, he told me that he hadn't said this before as he didn't want to scare me, but if it weren't for the fact that I was feeling better on the Prednisolone he was intending to have me admitted to hospital yesterday. But I don't feel THAT bad! I mean, I felt awful before, but since I've started the Pred I've been a bundle of joy and energy. Is it possible/usual to be much more ill than you feel?
Lastly, he told me (sympathetically but rather matter-of-factly) that as I taper off the Prednisolone and the Aza takes a while to kick in, all the Crohn's pain and exhaustion will come back for a while. That's my biggest concern, really. The symptoms were really beginning to ruin my career, relationship and general life before, and I can't deal with the idea that this improvement won't last. Do you think he's really just intending to have me taper off and feel terrible, or is it more likely that if I feel ill again he will put me back on the Pred just to relieve the symptoms?
Any advice/experiences are welcome. I'm feeling quite oddly calm about everything (maybe due to the steroids, or perhaps I've just reached the point where nothing can bother me!) so don't feel too anxious, more curious - I'm quite new to this, so I'd just like to hear from others who have been here and know what's 'normal' for a newly-diagnosed Crohnie, really.
