I am 18, and was diagnosed at age 9, but showed symptoms for years prior. Basically, I've been sick with the disease for 10 years, basically half my life.
Over the years I have spent A LOT of time in hospital, as most of us do.
I'm up for my second surgery in 3 days time and am just so anxious right now…but not about the surgery…
I am anxious because I feel like I've become "dependent" on hospital, I wouldn't say "addicted", but more so, gotten SO used to being in there, that when my mum says "okay I think we'll take you to hospital today" during a flare, I don't even bother to argue…I get straight in the car and go because I know I need to be there. I have been at a children's hospital for years, so obviously the environment is very different to what it is for adults, so obviously a lot less boring and drab. The nurses are lovely, you have all the time in the world to do arts and crafts, and overall, you obviously get to get the health treatment that you need. I have severe anxiety, and a LOT of intrusive thoughts because of it, and right now cannot stop ruminating and feeling guilty for the intrusive thoughts. Obviously my thoughts are just my anxiety, and I KNOW they are entirely unrealistic, but it really has got me thinking.
It's like I've been in the "patient" and "sick person" role for so long, that I'm scared of what life will be like when I am in remission once again. Us Chronic Illness sufferers do experience a lot, and do have a lot to deal with mentally so i suppose it's understandable that I feel this way.
I spent the past year in remission apart from 1 minor flare that I spent a week in hospital for but eventually recovered from very quickly. It was the surgery that put me into remission.
Anyway, because I have been dealing with Crohn's for basically half of my life, I am VERY tolerant to pain and it's symptoms. My pain can get VERY bad, but even still, I'd only consider it a 4-5/10, whereas a normal person would consider it a 9/10…so usually when the nurses ask, I tell them it's a 7-8/10 because otherwise they wont get the doctors to order me pain relief as it's not really "that bad". But the pain IS bad and I shouldn't have to deal with it. It's just that I can very easily distract myself from it and it doesn't effect me to the extent it does a normal person. I mean, I did my first bowel operation with 1 press of my fentanyl PCA, and tramadol occasionally. I was on a normal diet within 4 days, and jumping off 10 metre bridges (for fun!) at 3-4 weeks after my operation. So basically, my tolerance is very high.
My recent MRE showed a LOT of narrowing, which is likely scarring as my CRP and calprotectin levels are all fairly normal. Hence why I really pushed for the surgery to be done as it gave me basically a year of relief last time (was strictureplasty) so a resection this time might put me into a very long remission! I'm very weak at the moment, got out of hospital 2 weeks ago…but I'm still quite undernourished. I know this is probably why I'm feeling so anxious and depressed. But what REALLY is getting to me, is that I feel as though I've become SO used to being a patient, being sick and being in hospital, that it's now something that is NORMAL for me and I actually enjoy. I'll need to rephrase that as I do not ENJOY those things as such, but I find ways to make hospital admissions "fun", and ways to make my illness tolerable (such as doing arts and crafts in hospital, making friends with the nurses, decorating my room etc.) and hence, I am worried that once I am in remission for a long time, I will not know what to do with myself.
Obviously my anxiety and intrusive thoughts are VERY debilitating at the moment. As I literally cant function. I'm not sure if many others are aware of these types of thoughts and what they're like, but I'm sure those with depression, anxiety and OCD would understand. The thoughts are basically like "what if this was all in my head? what if i faked this whole chronic illness thing? what if i did it for attention? what if i actually ENJOY hospital and being sick?" Now like I said, if you don't understand the above mentioned mental illnesses, it's hard to understand the thoughts I just wrote. And I try my best to reassure myself that the proof of my illness is in EVERY test I have done. I AM sick, it's not like I've done this to myself. I was just unlucky like most of the people on this forum. It's almost like I'm in denial of the fact I'm sick, but not because I don't believe it, but because my intrusive thoughts say otherwise.
Basically, I KNOW I am sick, and my mental health isn't great right now, probably as a result of being unwell. BUT what I'm wondering, is have any of you ever been sick for so long that you begin to get so used to it that you are actually scared of feeling normal again? My thoughts make me want to completely call off my surgery, so I don't have to ever enter a hospital again. Not because I hate the hospital, but because it's become to close to home for me, it's become something that I am dependent on because I feel as though I can get the help I need for my health when I go there, but it's also a place where I feel comfortable, sometimes TOO comfortable. Hence why I'm so nervous right now.
I'm worried that when I'm healthy again, I wont be able to get the idea of being "sick" and a "patient" out of my head. That I'll miss my days of being unwell because I'm completely not used to feeling normal. I know that for the time while I WAS in remission, I did feel great, I got to enjoy life, got to go out and socialise and do things that I'd never done before. I got to enjoy life so so much. And that's what I'm holding onto at the moment. But yeah, I think it's mainly the anxiety/OCD self-doubt I'm experiencing at the moment. Basically questioning myself so so much, questioning the amount of time I've spent in hospital. Thankfully I'm moving to the adult hospital after this surgery, so I'm sure the nature of the hospital will be a lot less umm "enjoyable" than the children's hospital. Not that it's genuinely enjoyable at the children's, it's just that they staff there and the facilities they offer make it a slightly more enjoyable experience. So at the adults hospital I wont feel as though hospital is a place I'll ever miss or enjoy, because it genuinely wont be. It'll be a place I'll go when I desperately need to, but will avoid like the plague until it's necessary to be there.
I'm sorry I've rambled on. I'm just so anxious right now, I've spent the past 2 days crying hysterically over these thoughts. I'm sure it's because I'm still malnourished, so it's aggravating my mental health. But I'm definitely going to have a discussion with my GI and see if he can't prescribe me some medication for what is going on, as I've never felt this guilty in my life. Again, I KNOW i shouldn't feel guilty because I haven't done anything wrong, I can't help my intrusive thoughts and anxiety that are causing me to feel this way and over think to this extent, but I also don't know how to change these thoughts. Usually they fade away on their own with time. But yeah, sorry for the rant. I just hope someone here can relate.
Over the years I have spent A LOT of time in hospital, as most of us do.
I'm up for my second surgery in 3 days time and am just so anxious right now…but not about the surgery…
I am anxious because I feel like I've become "dependent" on hospital, I wouldn't say "addicted", but more so, gotten SO used to being in there, that when my mum says "okay I think we'll take you to hospital today" during a flare, I don't even bother to argue…I get straight in the car and go because I know I need to be there. I have been at a children's hospital for years, so obviously the environment is very different to what it is for adults, so obviously a lot less boring and drab. The nurses are lovely, you have all the time in the world to do arts and crafts, and overall, you obviously get to get the health treatment that you need. I have severe anxiety, and a LOT of intrusive thoughts because of it, and right now cannot stop ruminating and feeling guilty for the intrusive thoughts. Obviously my thoughts are just my anxiety, and I KNOW they are entirely unrealistic, but it really has got me thinking.
It's like I've been in the "patient" and "sick person" role for so long, that I'm scared of what life will be like when I am in remission once again. Us Chronic Illness sufferers do experience a lot, and do have a lot to deal with mentally so i suppose it's understandable that I feel this way.
I spent the past year in remission apart from 1 minor flare that I spent a week in hospital for but eventually recovered from very quickly. It was the surgery that put me into remission.
Anyway, because I have been dealing with Crohn's for basically half of my life, I am VERY tolerant to pain and it's symptoms. My pain can get VERY bad, but even still, I'd only consider it a 4-5/10, whereas a normal person would consider it a 9/10…so usually when the nurses ask, I tell them it's a 7-8/10 because otherwise they wont get the doctors to order me pain relief as it's not really "that bad". But the pain IS bad and I shouldn't have to deal with it. It's just that I can very easily distract myself from it and it doesn't effect me to the extent it does a normal person. I mean, I did my first bowel operation with 1 press of my fentanyl PCA, and tramadol occasionally. I was on a normal diet within 4 days, and jumping off 10 metre bridges (for fun!) at 3-4 weeks after my operation. So basically, my tolerance is very high.
My recent MRE showed a LOT of narrowing, which is likely scarring as my CRP and calprotectin levels are all fairly normal. Hence why I really pushed for the surgery to be done as it gave me basically a year of relief last time (was strictureplasty) so a resection this time might put me into a very long remission! I'm very weak at the moment, got out of hospital 2 weeks ago…but I'm still quite undernourished. I know this is probably why I'm feeling so anxious and depressed. But what REALLY is getting to me, is that I feel as though I've become SO used to being a patient, being sick and being in hospital, that it's now something that is NORMAL for me and I actually enjoy. I'll need to rephrase that as I do not ENJOY those things as such, but I find ways to make hospital admissions "fun", and ways to make my illness tolerable (such as doing arts and crafts in hospital, making friends with the nurses, decorating my room etc.) and hence, I am worried that once I am in remission for a long time, I will not know what to do with myself.
Obviously my anxiety and intrusive thoughts are VERY debilitating at the moment. As I literally cant function. I'm not sure if many others are aware of these types of thoughts and what they're like, but I'm sure those with depression, anxiety and OCD would understand. The thoughts are basically like "what if this was all in my head? what if i faked this whole chronic illness thing? what if i did it for attention? what if i actually ENJOY hospital and being sick?" Now like I said, if you don't understand the above mentioned mental illnesses, it's hard to understand the thoughts I just wrote. And I try my best to reassure myself that the proof of my illness is in EVERY test I have done. I AM sick, it's not like I've done this to myself. I was just unlucky like most of the people on this forum. It's almost like I'm in denial of the fact I'm sick, but not because I don't believe it, but because my intrusive thoughts say otherwise.
Basically, I KNOW I am sick, and my mental health isn't great right now, probably as a result of being unwell. BUT what I'm wondering, is have any of you ever been sick for so long that you begin to get so used to it that you are actually scared of feeling normal again? My thoughts make me want to completely call off my surgery, so I don't have to ever enter a hospital again. Not because I hate the hospital, but because it's become to close to home for me, it's become something that I am dependent on because I feel as though I can get the help I need for my health when I go there, but it's also a place where I feel comfortable, sometimes TOO comfortable. Hence why I'm so nervous right now.
I'm worried that when I'm healthy again, I wont be able to get the idea of being "sick" and a "patient" out of my head. That I'll miss my days of being unwell because I'm completely not used to feeling normal. I know that for the time while I WAS in remission, I did feel great, I got to enjoy life, got to go out and socialise and do things that I'd never done before. I got to enjoy life so so much. And that's what I'm holding onto at the moment. But yeah, I think it's mainly the anxiety/OCD self-doubt I'm experiencing at the moment. Basically questioning myself so so much, questioning the amount of time I've spent in hospital. Thankfully I'm moving to the adult hospital after this surgery, so I'm sure the nature of the hospital will be a lot less umm "enjoyable" than the children's hospital. Not that it's genuinely enjoyable at the children's, it's just that they staff there and the facilities they offer make it a slightly more enjoyable experience. So at the adults hospital I wont feel as though hospital is a place I'll ever miss or enjoy, because it genuinely wont be. It'll be a place I'll go when I desperately need to, but will avoid like the plague until it's necessary to be there.
I'm sorry I've rambled on. I'm just so anxious right now, I've spent the past 2 days crying hysterically over these thoughts. I'm sure it's because I'm still malnourished, so it's aggravating my mental health. But I'm definitely going to have a discussion with my GI and see if he can't prescribe me some medication for what is going on, as I've never felt this guilty in my life. Again, I KNOW i shouldn't feel guilty because I haven't done anything wrong, I can't help my intrusive thoughts and anxiety that are causing me to feel this way and over think to this extent, but I also don't know how to change these thoughts. Usually they fade away on their own with time. But yeah, sorry for the rant. I just hope someone here can relate.
