Hi all!
Well after another two weeks of continuing on weekly Humira, 40mg Pred and 75mg 6MP, things haven't really improved for me (maybe VERY slightly but if so not significantly). I saw a GI today - not mine, he's on holiday - but I was armed with a page of questions I'd typed up haha, bet she loved me! I had been going over many potential scenarios so nothing she had to say came as a huge shock, but still, some of it wasn't good to hear.
Basically, after a month of 40mg of Pred, it's time to taper. I've been pretty stable for the last week and a half (although I oddly haven't been very symptomatic with this flare anyway, even though the flexi-sig showed nasty inflammation) - averaging 2 b/ms per day, eating fine (anything I want), no pain etc. But STILL passing blood/mucus each time I go.
Anyway, things are surely about to get worse as I bring the Pred down - I think it's what's holding off all the nasty symptoms.
My last chance at a drug saviour is Infliximab, which I will be trying if/when I decline (definitely WHEN!). I am not expecting it to work, however. I used it last year in a bad flare and it worked wonders, but at the time it could only be prescribed here to treat acute symptoms so I was only entitled to the short course of infusions (initial, followed by one 2 weeks later, followed by one 6 weeks later). As I was in remission after this, I had to stop. The stop and start approach is known to have problems; it's very possible I will have an allergic reaction, or that is just plain won't work due to me possibly having developed anti-bodies. I know some people have been fine going back on it after a break, but I refuse to hang all my hopes on it. I don't want to set myself up for a huge disappointment.
If/when Infliximab fails, it looks like surgery is my only option. This was easier to deal with 2 weeks ago when a doctor (again, not MY doctor) told me that the 'worst case scenario' would be a resection to remove the inflamed part (mainly the sigmoid, some of the rectum and descending are inflamed to a lesser degree). He had only done a flexi-sig so he doesn't know if there is inflammation higher up, there was healthy bowel up there but obviously he hasn't seen the transverse, ascending and cecum (and they don't want to do colonoscopy at the moment in case the prep aggravates me and sends me over the edge). And even if there isn't, there was inflammation there last year, so it's possible, likely even, that inflammation will occur there in the future. For these reasons, the doctor I saw today told me that a resection or segmented resection might not be an option - it's very possible my 'worst case scenario' is in fact a complete colon removal, as the surgeon isn't going to want to do an operation that has a high chance of failure. Luckily, because I do my research and am a chronic pessimist, I already suspected this to a degree. But thanks to that previous doctor, this news could easily have knocked me off my chair.
So I'm preparing myself for this worst case scenario and it's pretty ****
I always thought this would happen one day, but kind of hoped I'd be the other side of 50 when that day came lol. I know it can't be easy for anyone to deal with but I think if I could've made it through my youth first, it would be a bit easier to accept? I know, Infliximab could work, but I'm telling myself it won't as a defence mechanism really. I just can't go through having more hopes shattered right now.
She’s arranging an appointment for me with the surgeon (regardless of my health at the time – it’s a conversation I need to have either way). I guess I will be able to fire all my questions at him, and fight tooth and nail for him to do everything in his power to save my colon, even if it’s just to see if I can maintain remission afterwards. I don’t mind ultimately having to have two surgeries, but I guess he’ll mind having to perform two lol. I will also ask about the possibility of a temporary stoma that leaves my bowels in tact to see if they can heal once stool is diverted from them, so that the stoma can later be reversed. But I’m not hopeful; I’m sure the thinking will be that the disease will surely come back, so we may as well just take it all out.
I also mentioned the stem cell transplant trial here in the UK, and to my surprise did not get laughed out of the room. She said she’s look into for me to see if they are still recruiting (I believe they are, not sure though, and don’t know if I’m eligible blah blah). Problem is, if I end up pursuing that avenue, it will be because Infliximab failed, and I’ll be tapering my Pred, so I will be getting sicker by the day. I doubt I’d make it to trial as I’d have to go under the knife before then.
Sorry that was so long, lots to tell I guess. I keep saying to my mum and sister I wish I just didn’t CARE about the prospect of a stoma – then I’d be fine! But I suppose that’s like wishing you didn’t care when someone dies. Unfortunately the grief process is unavoidable. I just don’t want to be miserable about it but it’s hard – I don’t suffer with my CD on a daily basis like some do. When I’m not flaring, I have ZERO symptoms, normal energy, can eat/drink whatever I like. It’s not like a stoma will give me a new lease on life to the same degree it does for others, so it’s hard to see the positive side. I want to though. I really want to not care!
Anyway, I will stop now
Well after another two weeks of continuing on weekly Humira, 40mg Pred and 75mg 6MP, things haven't really improved for me (maybe VERY slightly but if so not significantly). I saw a GI today - not mine, he's on holiday - but I was armed with a page of questions I'd typed up haha, bet she loved me! I had been going over many potential scenarios so nothing she had to say came as a huge shock, but still, some of it wasn't good to hear.
Basically, after a month of 40mg of Pred, it's time to taper. I've been pretty stable for the last week and a half (although I oddly haven't been very symptomatic with this flare anyway, even though the flexi-sig showed nasty inflammation) - averaging 2 b/ms per day, eating fine (anything I want), no pain etc. But STILL passing blood/mucus each time I go.
Anyway, things are surely about to get worse as I bring the Pred down - I think it's what's holding off all the nasty symptoms.
My last chance at a drug saviour is Infliximab, which I will be trying if/when I decline (definitely WHEN!). I am not expecting it to work, however. I used it last year in a bad flare and it worked wonders, but at the time it could only be prescribed here to treat acute symptoms so I was only entitled to the short course of infusions (initial, followed by one 2 weeks later, followed by one 6 weeks later). As I was in remission after this, I had to stop. The stop and start approach is known to have problems; it's very possible I will have an allergic reaction, or that is just plain won't work due to me possibly having developed anti-bodies. I know some people have been fine going back on it after a break, but I refuse to hang all my hopes on it. I don't want to set myself up for a huge disappointment.
If/when Infliximab fails, it looks like surgery is my only option. This was easier to deal with 2 weeks ago when a doctor (again, not MY doctor) told me that the 'worst case scenario' would be a resection to remove the inflamed part (mainly the sigmoid, some of the rectum and descending are inflamed to a lesser degree). He had only done a flexi-sig so he doesn't know if there is inflammation higher up, there was healthy bowel up there but obviously he hasn't seen the transverse, ascending and cecum (and they don't want to do colonoscopy at the moment in case the prep aggravates me and sends me over the edge). And even if there isn't, there was inflammation there last year, so it's possible, likely even, that inflammation will occur there in the future. For these reasons, the doctor I saw today told me that a resection or segmented resection might not be an option - it's very possible my 'worst case scenario' is in fact a complete colon removal, as the surgeon isn't going to want to do an operation that has a high chance of failure. Luckily, because I do my research and am a chronic pessimist, I already suspected this to a degree. But thanks to that previous doctor, this news could easily have knocked me off my chair.
So I'm preparing myself for this worst case scenario and it's pretty ****
I always thought this would happen one day, but kind of hoped I'd be the other side of 50 when that day came lol. I know it can't be easy for anyone to deal with but I think if I could've made it through my youth first, it would be a bit easier to accept? I know, Infliximab could work, but I'm telling myself it won't as a defence mechanism really. I just can't go through having more hopes shattered right now.She’s arranging an appointment for me with the surgeon (regardless of my health at the time – it’s a conversation I need to have either way). I guess I will be able to fire all my questions at him, and fight tooth and nail for him to do everything in his power to save my colon, even if it’s just to see if I can maintain remission afterwards. I don’t mind ultimately having to have two surgeries, but I guess he’ll mind having to perform two lol. I will also ask about the possibility of a temporary stoma that leaves my bowels in tact to see if they can heal once stool is diverted from them, so that the stoma can later be reversed. But I’m not hopeful; I’m sure the thinking will be that the disease will surely come back, so we may as well just take it all out.
I also mentioned the stem cell transplant trial here in the UK, and to my surprise did not get laughed out of the room. She said she’s look into for me to see if they are still recruiting (I believe they are, not sure though, and don’t know if I’m eligible blah blah). Problem is, if I end up pursuing that avenue, it will be because Infliximab failed, and I’ll be tapering my Pred, so I will be getting sicker by the day. I doubt I’d make it to trial as I’d have to go under the knife before then.
Sorry that was so long, lots to tell I guess. I keep saying to my mum and sister I wish I just didn’t CARE about the prospect of a stoma – then I’d be fine! But I suppose that’s like wishing you didn’t care when someone dies. Unfortunately the grief process is unavoidable. I just don’t want to be miserable about it but it’s hard – I don’t suffer with my CD on a daily basis like some do. When I’m not flaring, I have ZERO symptoms, normal energy, can eat/drink whatever I like. It’s not like a stoma will give me a new lease on life to the same degree it does for others, so it’s hard to see the positive side. I want to though. I really want to not care!
Anyway, I will stop now
