- Location
- London, UK
Hi all,
I don’t know if anyone here will remember me, I’ve only made the odd sporadic post over the last year or so and therefore don’t know who today’s current crop of regulars are!
Anyway, I was particularly active in 2011 when I was experiencing a severe flare, had exhausted all meds (I was on the highest possible doses of Humira and 6MP at the time, along with Prednisolone), and was facing surgery (a situation made all the worse by an indeterminate diagnosis – just look at my sig haha). Anyone who does remember me might also recall that I didn’t handle this well at all – faced with a permanent stoma as my only surgical option (due to a Crohns colitis dx at the time), the risk of this not even being curative, and having had to drop out of University, I fell into a deep pit of depression, experienced suicide ideation, became disillusioned about my illness (I didn’t actually realise I had been getting better for a couple of months because I was such a mess mentally and was convinced my insides were falling apart), had to see a psychologist etc. Not a pleasant time for anyone, including some wonderfully supportive people on this board who somehow managed to put up with me and my dark posts.
I ended up going into remission around May of that year (I guess the Humira FINALLY kicked in, I’d been on it, weekly, for 5 months). As I had deferred the final year of my University degree (in Scriptwriting for Film & TV), I agreed to complete the final year remotely from home. I then, as a result of having done work experience there, got offered the chance to interview for a job as a script researcher for a medical drama at the BBC and got it. Unfortunately my remission only lasted for about 4 months – by October, when I started the job, I was flaring again and struggled through for the next 9 months on the same max doses of medication, again, including varying doses of Prednisolone for the majority of that time (sometimes without my consultant’s knowledge – I know, not a recommended move, but I was desperate and couldn’t function at work without having it take the edge off). On top of my full time job I had to write a 10,000 word dissertation and a 110 page feature film script. Somehow I managed this and graduated officially in November of last year - 1.38% away from getting a 1st overall, which I’d been on track for until dropping out – but I’m over that now
.
Around May/June of 2011, things started to improve, and I slowly tapered off the Prednisolone successfully. I had been dragging my feet the whole 10 months I was at work due to illness and as a result when my contract came up for a renewal, it didn’t get one because of poor performance – my own fault for hiding my illness from everyone (in retrospect I don’t know why I did this but I know I had my reasons at the time). I was pretty upset, but this ended up being fantastic for me in the end. I didn’t get another job for 4 months, but rather than wallow I took advantage of my good health and living at my mum’s house (rent free, bless her) and got into healthy eating and some fitness. Being off Pred long term for the first time in 2 ½ years, I finally got my face/jaw line back and the healthy regime meant I also lost a stone and felt amazing. In December I was offered a job in London (in drama development at a TV production company) and moved down on New Year’s Day 2013 to start a new life.
Something I had never mentioned on here, or to my doctors, is that I’m gay – this wasn’t out of shame, more out of it being irrelevant. I was very overweight as a teenager and developed IBD when I was 19 – I lost 3 stone after getting ill, not through the disease (it wasn’t severe enough to cause weight loss at the time), but through the vein hope that healthier living would make the symptoms abate (it didn’t). But I never quite got to the weight I wanted to be because of regular bursts of Pred. I have always been deeply self-conscious about my appearance/body and never got any attention from anyone when I looked like crap. Add to that that I was often feeling like crap too, I have always pulled away from acting on my sexuality. There just didn’t seem to be any point. Therefore, there seemed no need to mention it, although plenty of people have guessed, I think it’s quite obvious honestly lol. I have never spoken about it with family, although I assume they have at least a clue. My move to London coincided with me looking and feeling the best I ever have in my whole life, and with there being a lot more opportunity here, I have started to identify with being gay and have acted on it to a degree. It’s been a pretty exciting time (and long over-due!). I’ve developed a lot of confidence in myself, I get noticed/hit one when I go out to bars etc, it’s like a whole new world (however pathetic that might sound!). Add to that an interesting/exciting (albeit horribly paid!) job and making loads of great new friends, I’ve been having the time of my life. All of this has been thanks to a blissful 13 month remission since July 2012; something I never thought possible. I don’t even know how it happened – no changes were made to my meds, there was nothing else I could take, and I had already relapsed once on maximum therapy. It felt like a miracle.
Sadly, I think I started to flare again around the weekend just gone. The symptoms are mild at the moment, but the emotional hit is not. I always knew if I let myself build/improve my life I’d have further to fall if/WHEN I flared again and that it would hurt even more.
My life is so full of opportunity now when it wasn’t before. I pitched a TV series idea to my boss which he took to the head of commissions at ITV – he liked it, so now I’m developing it on my own (!). I look and feel (or felt, until several days ago) so well and in shape (not exactly got a gym bod but I was slowly on the way!) which means I can finally dress how I want and take pride in my appearance (finally have healthy hair again too after Pred made it dull and brittle). Most importantly, to me anyway, I have been meeting guys and contemplating maybe ending up in some kind of relationship at some point (I’m meant to have a date with a cute doctor next week – a paediatrician no less – isn’t that like every woman’s fantasy boyfriend? Haha).
I know I’m jumping the gun, but all I can think about is how all of this is going to be jeopardised by ill health. If I am indeed beginning a proper flare (I’ve never once developed mild symptoms that didn’t quickly get much worse), the short term fix will likely be Prednisolone, which will mean kissing goodbye to my face for a few months at least (not to mention all the worries about it affecting mu bones, eyes etc, as I’ve used it many times already). They will then probably put me back up to weekly Humira, but I don’t expect this to help seeing as how I seem to have relapsed and remitted regardless of this drug. After being so well for so long, I was starting to think the landscape of medicinal treatment might have changed by the time I needed something. Say, if I could have remained well until I turned 30 (I turned 27 in June), one of these new biologics might have been available by then. Alas, it looks like I’m going to be stuck in the same old boat I was in 2 years ago.
If it comes to surgery, things are at least, potentially, a little brighter on this front. With the ‘likely ulcerative colits’ diagnosis I was given at my last appointment in July, along with a glowing report of my good health and colonoscopy (which was perfect bar the irreparable reticular scarring and pseudopolyps I’ve sustained from the battle), it looks like a j-pouch would now be a likely option for me when it wasn’t before, and this is the surgery I would choose for me personally. However, with me now embracing my sexuality, I have new concerns about how this will affect me.
ANYWAY, to anyone who managed to read this far (well done!), I’m aware that the previous paragraph is my mind projecting way too far ahead to be justifiable for my currently mild situation. I think it’s a coping mechanism of mine – think of the worst case scenarios so I’m prepared and not surprised. But MAN is it distracting! I really need to learn to stop doing it. And as much as these losses, should they happen, will devastate me, I have a lot more self worth now and feel pretty confident that this would spur me on to handle everything better than I did two years ago. So this is not me wallowing in self-pity, it’s just me sharing the thoughts going through my over-active mind.
And the purpose of this post as a whole was also to share my story, which has, in the long run, been massively positive until a few days ago! I so nearly posted in the ‘success stories’ forum many times, but always refrained because I didn’t want to jinx it. I guess now that it’s probably already been jinxed, it’s safe to tell everyone!
Ian
I don’t know if anyone here will remember me, I’ve only made the odd sporadic post over the last year or so and therefore don’t know who today’s current crop of regulars are!
Anyway, I was particularly active in 2011 when I was experiencing a severe flare, had exhausted all meds (I was on the highest possible doses of Humira and 6MP at the time, along with Prednisolone), and was facing surgery (a situation made all the worse by an indeterminate diagnosis – just look at my sig haha). Anyone who does remember me might also recall that I didn’t handle this well at all – faced with a permanent stoma as my only surgical option (due to a Crohns colitis dx at the time), the risk of this not even being curative, and having had to drop out of University, I fell into a deep pit of depression, experienced suicide ideation, became disillusioned about my illness (I didn’t actually realise I had been getting better for a couple of months because I was such a mess mentally and was convinced my insides were falling apart), had to see a psychologist etc. Not a pleasant time for anyone, including some wonderfully supportive people on this board who somehow managed to put up with me and my dark posts.
I ended up going into remission around May of that year (I guess the Humira FINALLY kicked in, I’d been on it, weekly, for 5 months). As I had deferred the final year of my University degree (in Scriptwriting for Film & TV), I agreed to complete the final year remotely from home. I then, as a result of having done work experience there, got offered the chance to interview for a job as a script researcher for a medical drama at the BBC and got it. Unfortunately my remission only lasted for about 4 months – by October, when I started the job, I was flaring again and struggled through for the next 9 months on the same max doses of medication, again, including varying doses of Prednisolone for the majority of that time (sometimes without my consultant’s knowledge – I know, not a recommended move, but I was desperate and couldn’t function at work without having it take the edge off). On top of my full time job I had to write a 10,000 word dissertation and a 110 page feature film script. Somehow I managed this and graduated officially in November of last year - 1.38% away from getting a 1st overall, which I’d been on track for until dropping out – but I’m over that now
.Around May/June of 2011, things started to improve, and I slowly tapered off the Prednisolone successfully. I had been dragging my feet the whole 10 months I was at work due to illness and as a result when my contract came up for a renewal, it didn’t get one because of poor performance – my own fault for hiding my illness from everyone (in retrospect I don’t know why I did this but I know I had my reasons at the time). I was pretty upset, but this ended up being fantastic for me in the end. I didn’t get another job for 4 months, but rather than wallow I took advantage of my good health and living at my mum’s house (rent free, bless her) and got into healthy eating and some fitness. Being off Pred long term for the first time in 2 ½ years, I finally got my face/jaw line back and the healthy regime meant I also lost a stone and felt amazing. In December I was offered a job in London (in drama development at a TV production company) and moved down on New Year’s Day 2013 to start a new life.
Something I had never mentioned on here, or to my doctors, is that I’m gay – this wasn’t out of shame, more out of it being irrelevant. I was very overweight as a teenager and developed IBD when I was 19 – I lost 3 stone after getting ill, not through the disease (it wasn’t severe enough to cause weight loss at the time), but through the vein hope that healthier living would make the symptoms abate (it didn’t). But I never quite got to the weight I wanted to be because of regular bursts of Pred. I have always been deeply self-conscious about my appearance/body and never got any attention from anyone when I looked like crap. Add to that that I was often feeling like crap too, I have always pulled away from acting on my sexuality. There just didn’t seem to be any point. Therefore, there seemed no need to mention it, although plenty of people have guessed, I think it’s quite obvious honestly lol. I have never spoken about it with family, although I assume they have at least a clue. My move to London coincided with me looking and feeling the best I ever have in my whole life, and with there being a lot more opportunity here, I have started to identify with being gay and have acted on it to a degree. It’s been a pretty exciting time (and long over-due!). I’ve developed a lot of confidence in myself, I get noticed/hit one when I go out to bars etc, it’s like a whole new world (however pathetic that might sound!). Add to that an interesting/exciting (albeit horribly paid!) job and making loads of great new friends, I’ve been having the time of my life. All of this has been thanks to a blissful 13 month remission since July 2012; something I never thought possible. I don’t even know how it happened – no changes were made to my meds, there was nothing else I could take, and I had already relapsed once on maximum therapy. It felt like a miracle.
Sadly, I think I started to flare again around the weekend just gone. The symptoms are mild at the moment, but the emotional hit is not. I always knew if I let myself build/improve my life I’d have further to fall if/WHEN I flared again and that it would hurt even more.
My life is so full of opportunity now when it wasn’t before. I pitched a TV series idea to my boss which he took to the head of commissions at ITV – he liked it, so now I’m developing it on my own (!). I look and feel (or felt, until several days ago) so well and in shape (not exactly got a gym bod but I was slowly on the way!) which means I can finally dress how I want and take pride in my appearance (finally have healthy hair again too after Pred made it dull and brittle). Most importantly, to me anyway, I have been meeting guys and contemplating maybe ending up in some kind of relationship at some point (I’m meant to have a date with a cute doctor next week – a paediatrician no less – isn’t that like every woman’s fantasy boyfriend? Haha).
I know I’m jumping the gun, but all I can think about is how all of this is going to be jeopardised by ill health. If I am indeed beginning a proper flare (I’ve never once developed mild symptoms that didn’t quickly get much worse), the short term fix will likely be Prednisolone, which will mean kissing goodbye to my face for a few months at least (not to mention all the worries about it affecting mu bones, eyes etc, as I’ve used it many times already). They will then probably put me back up to weekly Humira, but I don’t expect this to help seeing as how I seem to have relapsed and remitted regardless of this drug. After being so well for so long, I was starting to think the landscape of medicinal treatment might have changed by the time I needed something. Say, if I could have remained well until I turned 30 (I turned 27 in June), one of these new biologics might have been available by then. Alas, it looks like I’m going to be stuck in the same old boat I was in 2 years ago.
If it comes to surgery, things are at least, potentially, a little brighter on this front. With the ‘likely ulcerative colits’ diagnosis I was given at my last appointment in July, along with a glowing report of my good health and colonoscopy (which was perfect bar the irreparable reticular scarring and pseudopolyps I’ve sustained from the battle), it looks like a j-pouch would now be a likely option for me when it wasn’t before, and this is the surgery I would choose for me personally. However, with me now embracing my sexuality, I have new concerns about how this will affect me.
ANYWAY, to anyone who managed to read this far (well done!), I’m aware that the previous paragraph is my mind projecting way too far ahead to be justifiable for my currently mild situation. I think it’s a coping mechanism of mine – think of the worst case scenarios so I’m prepared and not surprised. But MAN is it distracting! I really need to learn to stop doing it. And as much as these losses, should they happen, will devastate me, I have a lot more self worth now and feel pretty confident that this would spur me on to handle everything better than I did two years ago. So this is not me wallowing in self-pity, it’s just me sharing the thoughts going through my over-active mind.
And the purpose of this post as a whole was also to share my story, which has, in the long run, been massively positive until a few days ago! I so nearly posted in the ‘success stories’ forum many times, but always refrained because I didn’t want to jinx it. I guess now that it’s probably already been jinxed, it’s safe to tell everyone!
Ian
