Hi 'Crohn's forumers' I'm new here and have never been in any kind of crohns support group or even really talked to people with crohn's so I thought it may be a good idea (at least for my mental health) to join you guys here. My story is fairly long so I won't hold it against you if you don't finish it.
Firstly, I apparently have quite an aggressive form of crohn's and it's particularly resistant to medication, I also used to have rectal fistula which were a permanent fixture during the first 13yrs of my disease. I also suffer from depression which I'm sure some of you can relate to as well (not the best combo in the world, crohn's being as never ending as it is).
So if you have been recently diagnosed please don't let my story scare you as it is very possible that yours won't be as serious (not that there is a 'better' type of crohn's to have, it all sucks I know)
So, lets start at the beginning...
I was fairly ill from the age of 6 onwards and then at 7 was diagnosed with crohn's by a children's IBD specialist. I remember having a birthday party & wondering why i was feeling so tired and sick all the time and why my friends weren't, I guess, as a child, it was hard to grasp the concept of being chronically ill.
It went on like this through most of my time at primary school, where I had my first course of steroids over the summer holidays, unfortunately it quickly made me gain weight and my face swell and...well you know, kids are cruel, but i don't hold it against them. I won't go into detail about all the constant symptoms as I'm sure most of us know what they are, acute pain/nausea etc...
On to Secondary school and by this point i had tried quite a few meds, most of which hadn't helped as much as me and my family had wanted. So in my second year of school (I was 12 at this point) I went on my first liquid diet drinking plain old complan that you mix up from powder for a total of 4 months which I think you'll agree even a healthy adult would struggle with. But, I got through it with my families support and I am thankful because it gave me the longest period of remission I've ever had, 1 whole year of pretty much no crohn's symptoms, I know it sounds like heaven, lol :ytongue:.
Unfortunately the disease then came back with avengeance and I also got some aggressive fistulas (sp?) which obv made any bowl movement extremely painful. I was put on a number of new meds(sorry i can never keep track of all the names). I can't say i didn't struggle through school, where a few teachers even had the gall to drag me (a 12/13yr old child) into their office to yell at me and accuse me of faking to get out of school work, but, in the end I managed to complete my secondary education up to the age of 18. Meds wise I had now tried courses of infliximab and a cocktail of pills, the steroids seeming to be the only this that really kept me above water but as they have so many bad side effects no one ever wanted me to stay on them for too long.
I left school and managed to get a college diploma in art and design, despite being ill quite often and being as thin as a twig, by this age I managed to not let it affect my schooling/social life too much, some of my friends knew I had crohn's but the most anyone really knew was that I felt sick every now and then.
Next I was out of education and work for about a year with more of the same old, jumping between meds none of which did very much. Some did, mainly after the first course, but my body seems to build up tolerance to these meds v quickly.
In 2007 I finally decided I wanted to go to university. By this time I had already discovered marijuana as a crohn's remedy, which I maintain to this date it the most effective way of subduing crohn's symptoms(for me personally at least), although it does depend on how ill you actually are as there have been points where it hasn't helped, and of course it doesn't 'cure' inflammation which was still raging on inside. I spent 5 years at uni (I dropped out in the first yr and started a new course, and then had surgery the next yr so i had to refer again) where I made loads of great friends and for the most part had a good time.
I say for the most part because at this point my rectal muscle had started to deteriorate and suffice as to say there were a lot of photo finishes as well as pain. Being in dorms I was always close to my room which had a toilet and when we went out I made sure I didn't push it to the point where I would have and 'accident' or feel really sick. I know it sucks sometimes that you can't keep up with your mates but seriously, know your limits and trust me your life will be all the better for it, I learnt this through trial and a fair amount of error.
When I finally started the uni degree I wanted to do, I got a few months into it and had a relapse so bad they decided it was finally time to give in to the surgery option. By this time my life was just a blurr of extreme pain, throwing up and feeling depressed and scared about the whole situation.
So onto the surgery, after being in hospital for a month of tests and prodding they found out that the disease had pretty much shredded my entire rectal muscle and so in the end they had to do a total proctocolectomy and fit me with a permanent illeostomy. This is when the depression really kicked in as i'm sure you can understand, with those same questions we all have, "why me?" etc... which trust me is no help to you, it will just make you feel worse, and without being too morbid I don't think I would have made it through without my family to support me (they really have been my saving grace through everything).
After about a month, again "unfortunately", I developed and abscess due to infection at the surgery site, so while I was lying in my hospital bed minding my own business my surgeon came up and snip snip snip undid all my stitches giving me the freakiest site ever (while fully concious), seeing my abdomen part open as if I were in the middle of surgery (seriosuly this wound was the size of a flippin grapefruit). This may seem a little cruel to only give me a few seconds to prepare myself but my surgeon, who was one of the best female surgeons in the hospital, was just very matter of fact about the whole thing, and I guess seeing as she knew for a fact it wouldn't be painful she probably just didn't want to put me through all that anticipation (she one of those tough no bullsh** ladies which are definitely qualities I like in a doctor). It wasn't painful as the stoma surgery meant they had had to cut through everything killing the nerves in that area. Anyway because of this infection they would never be able to sew me back up because of the risk of more infection. So I spent a few month dealing with dressing and once a week having a vacuum pump taped over the wound for a few hrs to drain the fluid and eventually I ended up with a fully healed scar about the size and shape of a lemon, which goes from my belly button down just passed the top of my pubic region. I can't say I think its the prettiest scar, more thinking "why me, why couldn't I have had no infection and ended up with a neat less obvious scar that was just straight like everyone else. Anyway with the help of a good psychologist I eventually got through the emotional aftermath.
After a few months of bed rest and recovery I could finally go back to uni. During my first new year unfortunately another 'incident' occurred, I had not been feeling to good and had gone for a Barium x-ray a few days prior.Then one night I was in such pain that my parents had to put me in the car at 4am and drive me to the ER. At this point I was in so much pain that I couldn't lie still for even a second and even the doctors pushing the legal limits of how much morphine they could give me didn't quell the pain one bit. Eventually it died down long enough so they could run a few test, but they still couldn't figure out the problem, I would try and eat and vomit almost immediately, and one night the pain came back, I was shouting so loud in the middle of the night I managed to panic the nurses into actually getting their butts in gear, and so they contacted my surgeon who thought no this isn't good we're going to have to cut you open again. So, I was rushed to surgery again only for them to find out that due to scar tissue, the barium (that chalky white stuff) had almost solidified in my gut and had caused me to have one of the worst twisted bowels they had seen. Think of a kinked garden hose, the surgeon said my intestine had gone black due to lack of blood. Luckily they were able to do it keyhole by making a small incision next to the stoma, so no more scars, yay!
Despite constant bouts of depression and struggling to cope with the new life of a stoma patient I managed to complete a 3yr BA degree making a ton of friends most of who never even knew I had a stoma. I even spent my 2nd and 3rd yrs in a flat in London with some of my student mates. This made me see that even though there are a LOT of bad time there were also many many great times that I will cherish.
It's now been almost 2 yrs since I graduated and I haven't had a remission for a long time, I was on methotrexate tried both pills and injections but like everything else after having exhausted it's use a couple years ago the positive effects never returned. I tried a few jobs which is always hard for people like us (even had one boss call me up and tell me to shut it while he told me he was firing me "because of my disease", what an idiot) but otherwise spent most of my time at home.
At the start of last year I started Humira injections every 2 week and spent my time at home occasionally going out with friends. At the end of last year I managed to get a pretty good job at a design company in London through the help of my dad who is a town planning consultant. This was good because the bosses there knew me beforehand and they are pretty relaxed about everything.
Unfortunately (I'm starting to hate that word) I have had a bit of a relapse since then, the Humira hadn't had any significant effect and after working for a month had to take time off. I then pushed myself to go back a bit too soon, not a good idea, back home again. My bosses however have told me not to worry as I'm frequently plagued with guilt at not being able to work properly and earn a living and fearing people will just label me 'unreliable' but because of the support I have from home and work I know that it is just in my head, not that that makes it any less real. Anyway now I am on Humira injections once every week and have just started taking azathioprine, which I have had previously as well as Humira, but I've pretty much gone full circle with the meds and I can't exactly have nothing.
Anyway recently I haven't been able to go far so just spend time resting at home (urgh more 'resting'). I can't say it's not extremely depressing but i'm going to give these meds a good go over the next year so hopefully they will help with the crohn's.
One thing I get depressed about (and maybe one of you could give me advice) is the whole relationship 'thing'. I know there are lot's of people out there and this is probably a particularly negative outlook, but in my experience a lot women(I know this prob goes for lots of men to, but i'm a guy) who say they are not shallow and don't mind me having crohn's, have taken one look at the stoma and scar and run a mile, or they get 'bored' of being with a sick person all the time and end up giving the whole, 'I'm sorry, you're a great guy, but I think I just like you as a friend instead', spiel. On top of this I'm a little shy around people I have only just met so the whole dating thing is hard and if you hang out with someone for too long they just end up seeing you as a friend.
Anyway I know I probably just sound like a moany old git but I honestly don't see any light on the horizon in this regard.
A few extra words of advice for people going through tough times (in no particular order).
1)If you can, embrace your family & friend's help as going through this kind of thing is too much for any human being to have to handle alone.
2)When looking at side effects of your meds don't read too much into them as they are usually worst case scenarios which is why they always sound worse than actually having crohn's.
3)If you do feel alone in your struggle don't be afraid or embarrassed to ask for help. Ask your doctor if he can refer you to a therapist or look to see if there are any support groups in your area (I see this site has something that may help with that). At the end of the day most people especially around the medical community will do anything they can to make you feel better, and it's a lot easier than telling people you know all these intimate problems.
and finally
4) Don't give up, trust me, I know it's hard and it seems so monotonous and never ending, but the moment you give up that's when things will just get worse and worse, and your life is precious, to yourself AND the people that love you.
..I'm not going to lie and say I always take my own advice as some of them are tough but I know in my head and my heart that they are all true and all you can do is try, it's just a LOT easier with some help.
^dear god thats a lot of writing, but I guess I just had to vent a bit, and if my struggle helps you see the positives in your life then that makes me happy. At the end of the day it's the good things in your life (no matter how small) that mean the most. Well done if you made it to the end, thanks for hearing me out:smile:
Firstly, I apparently have quite an aggressive form of crohn's and it's particularly resistant to medication, I also used to have rectal fistula which were a permanent fixture during the first 13yrs of my disease. I also suffer from depression which I'm sure some of you can relate to as well (not the best combo in the world, crohn's being as never ending as it is).
So if you have been recently diagnosed please don't let my story scare you as it is very possible that yours won't be as serious (not that there is a 'better' type of crohn's to have, it all sucks I know)
So, lets start at the beginning...
I was fairly ill from the age of 6 onwards and then at 7 was diagnosed with crohn's by a children's IBD specialist. I remember having a birthday party & wondering why i was feeling so tired and sick all the time and why my friends weren't, I guess, as a child, it was hard to grasp the concept of being chronically ill.
It went on like this through most of my time at primary school, where I had my first course of steroids over the summer holidays, unfortunately it quickly made me gain weight and my face swell and...well you know, kids are cruel, but i don't hold it against them. I won't go into detail about all the constant symptoms as I'm sure most of us know what they are, acute pain/nausea etc...
On to Secondary school and by this point i had tried quite a few meds, most of which hadn't helped as much as me and my family had wanted. So in my second year of school (I was 12 at this point) I went on my first liquid diet drinking plain old complan that you mix up from powder for a total of 4 months which I think you'll agree even a healthy adult would struggle with. But, I got through it with my families support and I am thankful because it gave me the longest period of remission I've ever had, 1 whole year of pretty much no crohn's symptoms, I know it sounds like heaven, lol :ytongue:.
Unfortunately the disease then came back with avengeance and I also got some aggressive fistulas (sp?) which obv made any bowl movement extremely painful. I was put on a number of new meds(sorry i can never keep track of all the names). I can't say i didn't struggle through school, where a few teachers even had the gall to drag me (a 12/13yr old child) into their office to yell at me and accuse me of faking to get out of school work, but, in the end I managed to complete my secondary education up to the age of 18. Meds wise I had now tried courses of infliximab and a cocktail of pills, the steroids seeming to be the only this that really kept me above water but as they have so many bad side effects no one ever wanted me to stay on them for too long.
I left school and managed to get a college diploma in art and design, despite being ill quite often and being as thin as a twig, by this age I managed to not let it affect my schooling/social life too much, some of my friends knew I had crohn's but the most anyone really knew was that I felt sick every now and then.
Next I was out of education and work for about a year with more of the same old, jumping between meds none of which did very much. Some did, mainly after the first course, but my body seems to build up tolerance to these meds v quickly.
In 2007 I finally decided I wanted to go to university. By this time I had already discovered marijuana as a crohn's remedy, which I maintain to this date it the most effective way of subduing crohn's symptoms(for me personally at least), although it does depend on how ill you actually are as there have been points where it hasn't helped, and of course it doesn't 'cure' inflammation which was still raging on inside. I spent 5 years at uni (I dropped out in the first yr and started a new course, and then had surgery the next yr so i had to refer again) where I made loads of great friends and for the most part had a good time.
I say for the most part because at this point my rectal muscle had started to deteriorate and suffice as to say there were a lot of photo finishes as well as pain. Being in dorms I was always close to my room which had a toilet and when we went out I made sure I didn't push it to the point where I would have and 'accident' or feel really sick. I know it sucks sometimes that you can't keep up with your mates but seriously, know your limits and trust me your life will be all the better for it, I learnt this through trial and a fair amount of error.
When I finally started the uni degree I wanted to do, I got a few months into it and had a relapse so bad they decided it was finally time to give in to the surgery option. By this time my life was just a blurr of extreme pain, throwing up and feeling depressed and scared about the whole situation.
So onto the surgery, after being in hospital for a month of tests and prodding they found out that the disease had pretty much shredded my entire rectal muscle and so in the end they had to do a total proctocolectomy and fit me with a permanent illeostomy. This is when the depression really kicked in as i'm sure you can understand, with those same questions we all have, "why me?" etc... which trust me is no help to you, it will just make you feel worse, and without being too morbid I don't think I would have made it through without my family to support me (they really have been my saving grace through everything).
After about a month, again "unfortunately", I developed and abscess due to infection at the surgery site, so while I was lying in my hospital bed minding my own business my surgeon came up and snip snip snip undid all my stitches giving me the freakiest site ever (while fully concious), seeing my abdomen part open as if I were in the middle of surgery (seriosuly this wound was the size of a flippin grapefruit). This may seem a little cruel to only give me a few seconds to prepare myself but my surgeon, who was one of the best female surgeons in the hospital, was just very matter of fact about the whole thing, and I guess seeing as she knew for a fact it wouldn't be painful she probably just didn't want to put me through all that anticipation (she one of those tough no bullsh** ladies which are definitely qualities I like in a doctor). It wasn't painful as the stoma surgery meant they had had to cut through everything killing the nerves in that area. Anyway because of this infection they would never be able to sew me back up because of the risk of more infection. So I spent a few month dealing with dressing and once a week having a vacuum pump taped over the wound for a few hrs to drain the fluid and eventually I ended up with a fully healed scar about the size and shape of a lemon, which goes from my belly button down just passed the top of my pubic region. I can't say I think its the prettiest scar, more thinking "why me, why couldn't I have had no infection and ended up with a neat less obvious scar that was just straight like everyone else. Anyway with the help of a good psychologist I eventually got through the emotional aftermath.
After a few months of bed rest and recovery I could finally go back to uni. During my first new year unfortunately another 'incident' occurred, I had not been feeling to good and had gone for a Barium x-ray a few days prior.Then one night I was in such pain that my parents had to put me in the car at 4am and drive me to the ER. At this point I was in so much pain that I couldn't lie still for even a second and even the doctors pushing the legal limits of how much morphine they could give me didn't quell the pain one bit. Eventually it died down long enough so they could run a few test, but they still couldn't figure out the problem, I would try and eat and vomit almost immediately, and one night the pain came back, I was shouting so loud in the middle of the night I managed to panic the nurses into actually getting their butts in gear, and so they contacted my surgeon who thought no this isn't good we're going to have to cut you open again. So, I was rushed to surgery again only for them to find out that due to scar tissue, the barium (that chalky white stuff) had almost solidified in my gut and had caused me to have one of the worst twisted bowels they had seen. Think of a kinked garden hose, the surgeon said my intestine had gone black due to lack of blood. Luckily they were able to do it keyhole by making a small incision next to the stoma, so no more scars, yay!
Despite constant bouts of depression and struggling to cope with the new life of a stoma patient I managed to complete a 3yr BA degree making a ton of friends most of who never even knew I had a stoma. I even spent my 2nd and 3rd yrs in a flat in London with some of my student mates. This made me see that even though there are a LOT of bad time there were also many many great times that I will cherish.
It's now been almost 2 yrs since I graduated and I haven't had a remission for a long time, I was on methotrexate tried both pills and injections but like everything else after having exhausted it's use a couple years ago the positive effects never returned. I tried a few jobs which is always hard for people like us (even had one boss call me up and tell me to shut it while he told me he was firing me "because of my disease", what an idiot) but otherwise spent most of my time at home.
At the start of last year I started Humira injections every 2 week and spent my time at home occasionally going out with friends. At the end of last year I managed to get a pretty good job at a design company in London through the help of my dad who is a town planning consultant. This was good because the bosses there knew me beforehand and they are pretty relaxed about everything.
Unfortunately (I'm starting to hate that word) I have had a bit of a relapse since then, the Humira hadn't had any significant effect and after working for a month had to take time off. I then pushed myself to go back a bit too soon, not a good idea, back home again. My bosses however have told me not to worry as I'm frequently plagued with guilt at not being able to work properly and earn a living and fearing people will just label me 'unreliable' but because of the support I have from home and work I know that it is just in my head, not that that makes it any less real. Anyway now I am on Humira injections once every week and have just started taking azathioprine, which I have had previously as well as Humira, but I've pretty much gone full circle with the meds and I can't exactly have nothing.
Anyway recently I haven't been able to go far so just spend time resting at home (urgh more 'resting'). I can't say it's not extremely depressing but i'm going to give these meds a good go over the next year so hopefully they will help with the crohn's.
One thing I get depressed about (and maybe one of you could give me advice) is the whole relationship 'thing'. I know there are lot's of people out there and this is probably a particularly negative outlook, but in my experience a lot women(I know this prob goes for lots of men to, but i'm a guy) who say they are not shallow and don't mind me having crohn's, have taken one look at the stoma and scar and run a mile, or they get 'bored' of being with a sick person all the time and end up giving the whole, 'I'm sorry, you're a great guy, but I think I just like you as a friend instead', spiel. On top of this I'm a little shy around people I have only just met so the whole dating thing is hard and if you hang out with someone for too long they just end up seeing you as a friend.
Anyway I know I probably just sound like a moany old git but I honestly don't see any light on the horizon in this regard.
A few extra words of advice for people going through tough times (in no particular order).
1)If you can, embrace your family & friend's help as going through this kind of thing is too much for any human being to have to handle alone.
2)When looking at side effects of your meds don't read too much into them as they are usually worst case scenarios which is why they always sound worse than actually having crohn's.
3)If you do feel alone in your struggle don't be afraid or embarrassed to ask for help. Ask your doctor if he can refer you to a therapist or look to see if there are any support groups in your area (I see this site has something that may help with that). At the end of the day most people especially around the medical community will do anything they can to make you feel better, and it's a lot easier than telling people you know all these intimate problems.
and finally
4) Don't give up, trust me, I know it's hard and it seems so monotonous and never ending, but the moment you give up that's when things will just get worse and worse, and your life is precious, to yourself AND the people that love you.
..I'm not going to lie and say I always take my own advice as some of them are tough but I know in my head and my heart that they are all true and all you can do is try, it's just a LOT easier with some help.
^dear god thats a lot of writing, but I guess I just had to vent a bit, and if my struggle helps you see the positives in your life then that makes me happy. At the end of the day it's the good things in your life (no matter how small) that mean the most. Well done if you made it to the end, thanks for hearing me out:smile:
