*If facing surgery - I advise you probably not to read*
I know that with Crohns disease, in my case anyway as for most other people -- surgery is something that I will not be able to avoid. I have a very bad stricture - (scar tissue build up causing a blockage) where the ulcers have been very bad. The doctors said before I started Infliximab that they would do another scope in a year to see how much has healed and the latest state of the stricture before handing me over (more than likely) to the surgical team.
So in 9 months, i'm kind of expecting that I'll probably be facing oncoming surgery...
So what scares me? Let me tell you.
They put me under the sedative before doing the operation and I fall asleep as expected. They assume it has worked so begin the operation to remove the part of intestine which needs to go. I will be asleep, unable to move, unable to talk - however I feel everything as they cut me open - sheer pain. As a result of the sedative, I won't be able to do anything, not even a minor signal. I know this is a very silly fear, don't think it's even possible - but it scares me so much that I will feel everything and be defenceless.
A few months ago I had a filling done --- nothing in comparison to what I shall at some point face. The dentist gave me the injection in gums to numb me, but it didn't work. I felt everything - as a result mum had to hold my hands and the dentist couldn't do as good a job as she was supposed to as I couldn't stop squirming from the pain. She couldn't stop either as had already begun. I felt everything and it was painful. I am not sure why the dentists injection didn't work properly, she gave me full dose! This happened AFTER I already had the fear of surgery, so of course helped to ADD to my already existing fear - which grows each day as the date comes nearer.
Many people who I have spoken to who have had surgery in the past say that it has given them 5-7 years of a normal life. Is that amount of time really worth it? At my young age, 7 years doesn't feel that long for me. Even the doctors are worried as once they remove one part the crohns will spread - and as the crohns spreads in future more shall probably have to be removed.
My fear is growing day by day, yet surgery is supposed to take the pain away.
I do hope I can avoid surgery, but is there any choice for me?
Under the knife, aware of all around, unable to move or make a sound.
The pain I'll feel and have to endure; but even surgery won't be a cure.
Saturday, 24 August 2013
Wednesday, 14 August 2013
Invisible illness.
We may look find on the outside, that is why it is called invisible illness. Not many people understand illnesses that they can't understand. How much physical pain, fatigue, tests, drugs, hospital we endure... Nearly all invisible illnesses have no cure, actually I can't think of any that do have a cure!
We DON'T suffer from illness. We FIGHT it! We are strong.
People with visible illnesses are often judged because they look ill and people don't know how to approach or treat them. I have experienced a case of this myself where I was in a wheelchair with mum and someone asked mum "how is she?" rather than asking me, how I was. This is not to say that those who suffer invisible illnesses don't get the same amount of judgement, but rather, we get different judgement. "Why don't you get up and do something". "If you did more, you wouldn't be so tired." "You don't look ill" "Why do you have a disabled badge" ---- these are just a few of the statements that nearly every one of us living with an invisible illness has heard at some point or another.
We may not look ill, but the fact is that we are, we are on medications, some of which are extremely lethal. Take one of mine for example which cuts out the receptors to the bodies white blood cells, meaning I can rarely fight away any infections, colds, bugs or flu without medical intervention. Most of us are in pain 24/7, of course you can't see pain... but trust me, you can feel it and when the pain is so extreme, it is near impossible to block it out. You won't hear us complaining about something basic like a cold, or simple backache --- when we mean pain, we mean pain and we endure it and keep on going! As a side effect of our illness we all feel fatigued, getting up and doing things every day is not easy when you are so tired. Even the days when we can't get up, we keep on going, keep on fighting and remain positive!
We may have our occasional bad days, but we keep going and we take each day as it comes and see the bad ones as just a minor blip - we don't let them stand in our way. We just shrug it off as if nothing happened, for tomorrow is a brand new start, a brand new day and we can pretend that yesterday never happened.
Invisible illness is never going to drag us down and we'll all stay positive. We'll all keep our heads held high and be proud of who we are. With a smile upon our faces, we keep ourselves going no matter what is thrown at us. Together we unite, whilst illness we fight.
We DON'T suffer from illness. We FIGHT it! We are strong.
People with visible illnesses are often judged because they look ill and people don't know how to approach or treat them. I have experienced a case of this myself where I was in a wheelchair with mum and someone asked mum "how is she?" rather than asking me, how I was. This is not to say that those who suffer invisible illnesses don't get the same amount of judgement, but rather, we get different judgement. "Why don't you get up and do something". "If you did more, you wouldn't be so tired." "You don't look ill" "Why do you have a disabled badge" ---- these are just a few of the statements that nearly every one of us living with an invisible illness has heard at some point or another.
We may not look ill, but the fact is that we are, we are on medications, some of which are extremely lethal. Take one of mine for example which cuts out the receptors to the bodies white blood cells, meaning I can rarely fight away any infections, colds, bugs or flu without medical intervention. Most of us are in pain 24/7, of course you can't see pain... but trust me, you can feel it and when the pain is so extreme, it is near impossible to block it out. You won't hear us complaining about something basic like a cold, or simple backache --- when we mean pain, we mean pain and we endure it and keep on going! As a side effect of our illness we all feel fatigued, getting up and doing things every day is not easy when you are so tired. Even the days when we can't get up, we keep on going, keep on fighting and remain positive!
We may have our occasional bad days, but we keep going and we take each day as it comes and see the bad ones as just a minor blip - we don't let them stand in our way. We just shrug it off as if nothing happened, for tomorrow is a brand new start, a brand new day and we can pretend that yesterday never happened.
Invisible illness is never going to drag us down and we'll all stay positive. We'll all keep our heads held high and be proud of who we are. With a smile upon our faces, we keep ourselves going no matter what is thrown at us. Together we unite, whilst illness we fight.
Saturday, 10 August 2013
Crohns Disease and how it makes me feel.
Crohns disease is relatively new to me still -- or at least the terminology and diagnosis. I believe I have actually had the illness most of my life though.
If often feels as though I am ill as some form of punishment, but what for? Personally I like to see it as some form of test... to see how strong and positive I can remain. I'm not sure what the aim of this test is for, or why I am being tested in this sort of way. Why have more than one illness, and why ones that will never go away? I'm ill, but there are still many people much worse then me!
I was terrified upon having to have an endoscope, the fear of having a tube down my throat really scared me - what happened if I choked and couldn't breathe? Actually, having the endoscope wasn't that bad as I was heavily sedated - I actually barely remember any of it! According to the notes, I fought the nurse and bit her upon insertion of the tube down my throat --- I don't really recall much of this as I was in and out of sleep. Sorry nurse, but generally things that go in my mouth are to be eaten!!! The worst part actually was taking the drink before hand - 6 litres of Prep-kleen... come on 6 litres, the sheer amount is silly! It didn't taste nice either, drinking 6 litres of something I actually liked would be pretty hard for me! It hurt my belly so much and made it feel like I was on fire internally. I had to keep on drinking and drinking though as it had to be done within a certain amount of time. Mum kept coming to me counting down the minuets and giving me glass after glass. It did the job, but was very violent. I would like to say that this is the last time I'll have to undergo such things, but unfortunately not - I know I'm due another in a years time! Hopefully next time they will give me something not so violent and not 6 litres!!!
The words "life long condition" have stuck clearly in my mind. Knowing that I'll have crohns for the rest of my life and that there is no cure. Nearly all people with crohns disease end up with surgery of some form or another --- which is my current biggest fear. Luckily I have been able to avoid surgery so far. The chances are that next year I will be having surgery though due to the fact I have a stricture (a restriction caused by scarring). They are leaving it for a year though to let the inflammation go down and see how my situation looks after affective medications start to reduce the severity of my condition.
I have always been afraid of needles, mainly because my veins are "hard to find" my record being 19 attempts of re-insertion to find a vein without hitting a valve so they can actually get blood. I like the term which one Pleb used on me --- "You're as generous as a stone, getting blood out of a stone would probably be easier!" So knowing that I would need lots of frequent blood tests and monthly blood tests for the next year and maybe the rest of my life is not something I think highly of! Seriously, why do the vampires need so much of my blood! I'm getting much better with needles and actually am no longer afraid of them!!! I find them a bit painful and I do swear sometimes when nurses wiggle the needle around to try and catch the vein. I'm not scared any more, but my veins still are and try their hardest to hide! Actually floppy veins, that's a side effect of EDS not crohns!
I'm on infliximab, which is an infusion --- which guess what --- means successfully finding a vein!!! 4 hours sat there with a needle in my arm, usually at an odd angle in comparison to everyone else's due to the difficulty they had! For some it is 4 hours of freedom from the kids/home-life -- neither of which I have... but it is 4 hours to enjoy some bonding time with my dad. Dad has purposely booked my infusions off work and sits with me during this time, it is nice to have him there as usually he works in Germany. I enjoy catching up with dad and we sometimes share jokes about the infusion process. He escorts me to the canteen for food which I "Can" eat... and usually we end up doing a little dance to unwind the mess of tangled wires which I have managed to create!
I have had my fair share of "accidents", it is highly embarrassing at times when this happens, especially in public. I have however found a funny side to it, back to nature! We evolved from creatures who go where they like when they need to... it was not natural for us to find a "toilet"... to hide behind a tree, a bush or other form of covering - yes. A friend of mine suggested wearing pads/adult nappies which has also been recommended by an occupational therapist. I couldn't think of anything worse then this! It seems degrading to me, as long as I have a spare change when I'm having a "poorly" day then I'm fine! Luckily accidents don't happen too frequently as it is very rare I am too far away from a toilet. Geocaching an old favourite of mine can leave you miles away from any form of civilisation, but luckily no one is around... so no one can see if you make a sneaky dash behind a tree!
It really annoys me when people look at me or comment when I belch or pass wind; usually females do this. Most guys think it's funny/cool and try to make it into a competition. I just laugh if anyone comments or looks rudely at me. It is part of my condition and something which I can not control, I could beat most guys in a belching contest!
There are many days where I am in a great deal of pain, that doing even the simplest of tasks such as getting out of bed seem impossible. Even on a good day I am suffering from extreme exhaustion and spasms of pain, however on good days, I force myself to do as much as I can -- even if the following day will resort to being extremely ill. I want to make the most of the good days and push myself to the limits; I'm not going to let life pass by me having done nothing. I am exhausted beyond exhaustion, but I try and block this out and push the barriers. Frequently people have said about pacing myself, but this doesn't make any difference as the good days and bad days still occur at the same rate. Whether it is the crohns that causes my exhaustion, or a combination of all of my conditions I shall never know.
Crohns has thrown a number of limitations at me and challenges. Travelling is an issue as it may be an issue finding a toilet on time, not to mention I feel generally ill from travelling. Being in places where I don't know is hard as I don't always know where the nearest toilet is.
However, with limitations also comes challenges and new possibilities.
On diagnosis I found the one thing I needed was someone to talk to so searched on facebook and could only find groups that were non area specific. So I decided to create a UK only group 2 weeks later. This group has been a very good support for myself and for the members in it.
Upon finding myself unable to work or leave the house unsupervised I turned to my creative flare and started to put my skills to use. I started to make cards and felt decorations which I sold and still sell for crohns and colitis uk. (( https://www.facebook.com/groups/wolfiescardsandcrafts ))
I also found myself starting new skills such as stained glass which I have found really challenging and fun!
I found myself new ways to keep myself occupied and ways to manage my life in a way that kept me going, I wasn't going to let this horrible disease beat me and nor shall I in the future.
I feel proud of all of the other fellow crohnies (and collies) who have fitsulas and stomas; personally I don't know how I would manage myself... just the prospect of surgery is scary enough for me.
The phrase "pain in the @rse" is one I hear regularly... seriously, why is it even a phrase... I think the only people who should be allowed to use it is people with an IBD!!!
I've been on a low residue diet for a fair few months now where most of the food I used to enjoy is no longer on my list... I sure do miss my salad in the summer weather!!! I have however found myself trying new foods that I had never eaten before.
It's not easy to find yourself awake several times within a night, whether it is due to needing to go to the toilet, pain or night sweats caused by the medication that is supposed to make you better! Never the less, with lack of energy, us IBDers keep on going!
Some of the strongest, friendliest, funniest people I have ever known are those I have met online with Crohns/Colitis.
If often feels as though I am ill as some form of punishment, but what for? Personally I like to see it as some form of test... to see how strong and positive I can remain. I'm not sure what the aim of this test is for, or why I am being tested in this sort of way. Why have more than one illness, and why ones that will never go away? I'm ill, but there are still many people much worse then me!
I was terrified upon having to have an endoscope, the fear of having a tube down my throat really scared me - what happened if I choked and couldn't breathe? Actually, having the endoscope wasn't that bad as I was heavily sedated - I actually barely remember any of it! According to the notes, I fought the nurse and bit her upon insertion of the tube down my throat --- I don't really recall much of this as I was in and out of sleep. Sorry nurse, but generally things that go in my mouth are to be eaten!!! The worst part actually was taking the drink before hand - 6 litres of Prep-kleen... come on 6 litres, the sheer amount is silly! It didn't taste nice either, drinking 6 litres of something I actually liked would be pretty hard for me! It hurt my belly so much and made it feel like I was on fire internally. I had to keep on drinking and drinking though as it had to be done within a certain amount of time. Mum kept coming to me counting down the minuets and giving me glass after glass. It did the job, but was very violent. I would like to say that this is the last time I'll have to undergo such things, but unfortunately not - I know I'm due another in a years time! Hopefully next time they will give me something not so violent and not 6 litres!!!
The words "life long condition" have stuck clearly in my mind. Knowing that I'll have crohns for the rest of my life and that there is no cure. Nearly all people with crohns disease end up with surgery of some form or another --- which is my current biggest fear. Luckily I have been able to avoid surgery so far. The chances are that next year I will be having surgery though due to the fact I have a stricture (a restriction caused by scarring). They are leaving it for a year though to let the inflammation go down and see how my situation looks after affective medications start to reduce the severity of my condition.
I have always been afraid of needles, mainly because my veins are "hard to find" my record being 19 attempts of re-insertion to find a vein without hitting a valve so they can actually get blood. I like the term which one Pleb used on me --- "You're as generous as a stone, getting blood out of a stone would probably be easier!" So knowing that I would need lots of frequent blood tests and monthly blood tests for the next year and maybe the rest of my life is not something I think highly of! Seriously, why do the vampires need so much of my blood! I'm getting much better with needles and actually am no longer afraid of them!!! I find them a bit painful and I do swear sometimes when nurses wiggle the needle around to try and catch the vein. I'm not scared any more, but my veins still are and try their hardest to hide! Actually floppy veins, that's a side effect of EDS not crohns!
I'm on infliximab, which is an infusion --- which guess what --- means successfully finding a vein!!! 4 hours sat there with a needle in my arm, usually at an odd angle in comparison to everyone else's due to the difficulty they had! For some it is 4 hours of freedom from the kids/home-life -- neither of which I have... but it is 4 hours to enjoy some bonding time with my dad. Dad has purposely booked my infusions off work and sits with me during this time, it is nice to have him there as usually he works in Germany. I enjoy catching up with dad and we sometimes share jokes about the infusion process. He escorts me to the canteen for food which I "Can" eat... and usually we end up doing a little dance to unwind the mess of tangled wires which I have managed to create!
I have had my fair share of "accidents", it is highly embarrassing at times when this happens, especially in public. I have however found a funny side to it, back to nature! We evolved from creatures who go where they like when they need to... it was not natural for us to find a "toilet"... to hide behind a tree, a bush or other form of covering - yes. A friend of mine suggested wearing pads/adult nappies which has also been recommended by an occupational therapist. I couldn't think of anything worse then this! It seems degrading to me, as long as I have a spare change when I'm having a "poorly" day then I'm fine! Luckily accidents don't happen too frequently as it is very rare I am too far away from a toilet. Geocaching an old favourite of mine can leave you miles away from any form of civilisation, but luckily no one is around... so no one can see if you make a sneaky dash behind a tree!
It really annoys me when people look at me or comment when I belch or pass wind; usually females do this. Most guys think it's funny/cool and try to make it into a competition. I just laugh if anyone comments or looks rudely at me. It is part of my condition and something which I can not control, I could beat most guys in a belching contest!
There are many days where I am in a great deal of pain, that doing even the simplest of tasks such as getting out of bed seem impossible. Even on a good day I am suffering from extreme exhaustion and spasms of pain, however on good days, I force myself to do as much as I can -- even if the following day will resort to being extremely ill. I want to make the most of the good days and push myself to the limits; I'm not going to let life pass by me having done nothing. I am exhausted beyond exhaustion, but I try and block this out and push the barriers. Frequently people have said about pacing myself, but this doesn't make any difference as the good days and bad days still occur at the same rate. Whether it is the crohns that causes my exhaustion, or a combination of all of my conditions I shall never know.
Crohns has thrown a number of limitations at me and challenges. Travelling is an issue as it may be an issue finding a toilet on time, not to mention I feel generally ill from travelling. Being in places where I don't know is hard as I don't always know where the nearest toilet is.
However, with limitations also comes challenges and new possibilities.
On diagnosis I found the one thing I needed was someone to talk to so searched on facebook and could only find groups that were non area specific. So I decided to create a UK only group 2 weeks later. This group has been a very good support for myself and for the members in it.
Upon finding myself unable to work or leave the house unsupervised I turned to my creative flare and started to put my skills to use. I started to make cards and felt decorations which I sold and still sell for crohns and colitis uk. (( https://www.facebook.com/groups/wolfiescardsandcrafts ))
I also found myself starting new skills such as stained glass which I have found really challenging and fun!
I found myself new ways to keep myself occupied and ways to manage my life in a way that kept me going, I wasn't going to let this horrible disease beat me and nor shall I in the future.
I feel proud of all of the other fellow crohnies (and collies) who have fitsulas and stomas; personally I don't know how I would manage myself... just the prospect of surgery is scary enough for me.
The phrase "pain in the @rse" is one I hear regularly... seriously, why is it even a phrase... I think the only people who should be allowed to use it is people with an IBD!!!
I've been on a low residue diet for a fair few months now where most of the food I used to enjoy is no longer on my list... I sure do miss my salad in the summer weather!!! I have however found myself trying new foods that I had never eaten before.
It's not easy to find yourself awake several times within a night, whether it is due to needing to go to the toilet, pain or night sweats caused by the medication that is supposed to make you better! Never the less, with lack of energy, us IBDers keep on going!
Some of the strongest, friendliest, funniest people I have ever known are those I have met online with Crohns/Colitis.
I've had to give up a lot.
I like to see myself as a positive person, remaining positive no matter what life throws at me. I have my down days, but this is natural for EVERYONE.
At nearly 26 years old my life suddenly took a turn when I was told I wasn't allowed to live on my own; nor even be on my own for any amount of time.
I moved back into my parents house. I was to never to leave the house on my own. No shopping, going to clubs, going to pubs or anything else that a "normal" 26 year old would do in life. This included working - which doctors stated would be "detrimental to my health". I was not allowed to drive any more. I had to rely on mum for everything; going out of the house became a very rare occurrence due to the need to be supervised constantly and having no friends to take me out; or rather only a few friends who took me out on what seemed like rare occurrences. My social life pretty much went along with my independence. Having mum bath me, become my taxi, my chef and constant supervisor was to become my norm from this point on. This is also when my relationship broke down and I have been single ever since as I have no ability to meet anyone new when I can't even leave the house without my mum by my side!
Yet, having everything snatched away from me in my life - I remained positive and continued to stay strong. I thought that I would become depressed from it all... but I didn't, instead I found myself growing with new ideas and concept and facing a whole new life where I had to adapt, grow and learn which actually made me see things in a totally different light.
My life has changed a great deal, I used to do many sports such as sailing, I used to work. I used to drive my car for miles on end, live on my own and have what seemed like a normal life.
Having everything taken away from me, has not made me negative in any way, instead it has made me focus more on the things in life which I can STILL do. I don't look at what I can't do any more, but rather what I can still manage... that is what keeps me going. Making jewellery, stained glass, cards, keyrings and much more. I sell my keyrings, cards and jewellery with 100% going towards the Crohns and Colitis charity - the materials are my own donation.
These are the teddy bear keyrings which I make.
I know I'll always have my illnesses, and I know that they'll always effect me to some degree; even when managed by medication. However, I'm not going to let it get me down. I'm a fighter., I will remain strong. I will never let anything thrown at me drag me down!
When people have everything in life that I so badly want/miss and they can't see the positive side of life, I wonder what they would be like if they had it all taken away from them? I couldn't wish this sort of life upon anyone!
Fight on fellow crohnies and collies! We are strong and very good fighters.
At nearly 26 years old my life suddenly took a turn when I was told I wasn't allowed to live on my own; nor even be on my own for any amount of time.
I moved back into my parents house. I was to never to leave the house on my own. No shopping, going to clubs, going to pubs or anything else that a "normal" 26 year old would do in life. This included working - which doctors stated would be "detrimental to my health". I was not allowed to drive any more. I had to rely on mum for everything; going out of the house became a very rare occurrence due to the need to be supervised constantly and having no friends to take me out; or rather only a few friends who took me out on what seemed like rare occurrences. My social life pretty much went along with my independence. Having mum bath me, become my taxi, my chef and constant supervisor was to become my norm from this point on. This is also when my relationship broke down and I have been single ever since as I have no ability to meet anyone new when I can't even leave the house without my mum by my side!
Yet, having everything snatched away from me in my life - I remained positive and continued to stay strong. I thought that I would become depressed from it all... but I didn't, instead I found myself growing with new ideas and concept and facing a whole new life where I had to adapt, grow and learn which actually made me see things in a totally different light.
My life has changed a great deal, I used to do many sports such as sailing, I used to work. I used to drive my car for miles on end, live on my own and have what seemed like a normal life.
Having everything taken away from me, has not made me negative in any way, instead it has made me focus more on the things in life which I can STILL do. I don't look at what I can't do any more, but rather what I can still manage... that is what keeps me going. Making jewellery, stained glass, cards, keyrings and much more. I sell my keyrings, cards and jewellery with 100% going towards the Crohns and Colitis charity - the materials are my own donation.
These are the teddy bear keyrings which I make.
I know I'll always have my illnesses, and I know that they'll always effect me to some degree; even when managed by medication. However, I'm not going to let it get me down. I'm a fighter., I will remain strong. I will never let anything thrown at me drag me down!
When people have everything in life that I so badly want/miss and they can't see the positive side of life, I wonder what they would be like if they had it all taken away from them? I couldn't wish this sort of life upon anyone!
Fight on fellow crohnies and collies! We are strong and very good fighters.
Intro to myself.
Always look on the bright side of life - a song that was going to be played at my aunts funeral as it's the way she lived her life; but didn't get played in the end. I've always tried to be positive and strong, but it's not easy when so much stuff happens that is out of your control.
So, I'm 27 with crohns disease, autonomic nervous system disorder, ehlers danlos syndrome, postural orthostatic tachycardia syncope, chronic fatigue syndrome, polycystic ovary syndrome and dysautonomnia. Nice list of illnesses going on, which co-incidently started to become severe when triggered by a blackout at 19 years of age. Although I started signs of all of the above conditions when I was actually 13 years old - they took 6 years to properly manifest. I believe the signs of crohns were there in early childhood.
I shall not say here about all the bad stuff that happened to me as a child, because that is in the past and doesn't effect me any more; but I didn't have a good start in life - lots of bad stuff that shouldn't have happened to me/anyone did happen - but that's not for here (maybe later in my blog but not now) --- so lets start on my health journey.
At 13 I began to get pain every time I ate, I found eating difficult or rather painful and as a result ate very little which made people assume I was anorexic. My blackouts also began around this time at the onset of puberty where I fainted each month on the first day of my cycle.
At 17 I started to see the doctor and was simply sent for blood tests, told I didn't have diabetes and it was left at that.
At 19 following a major blackout where I was found a short distance from my car (having pulled it over on to a roundabout to get help) ended me up in Resus unit. This led to me having an MRI scan and blood tests, to no avail. I started blacking out weekly at this point - whereas before hand it had only been monthly. No results from tests, so doctors gave up on looking for further answers.
At 20 I had a major pain in my abdomen which I blacked out from, it was thought that I had appendicitis, although this was found to not be the case. I was sent home, but put on the list for a sigmoidoscope; which showed no results. Told I had IBS.
The blackouts continued, I was put on beta-blockers, which made me ill, given more tests and fitted with a 72 hour heart monitor. Still no luck. I was told it was all psycho-symptomatic, in my head and according to my hospital notes at this time "disillusioned about being in ill health". Who was I to argue with the Dr's? I took this as fact and thought that maybe there really was nothing wrong with me.
At 22 I was diagnosed with vasa vagal syncope, which just means common faint. Not very useful, but at least the medication I was put on at this time stopped my blackouts for a while.
At 25 I got my own house and as a result switched G.P which was to become the best thing possible as he was determined to get to the base of all my problems and find out why I was ill. He was the first doctor to listen to me and believe me that something was wrong! He sent me to many specialists and I was soon diagnosed with POTS. A year later I was diagnosed with crohns disease after having lost a lot of weight in this time.
Although there is no cure for either of the above, at least I had a diagnosis.
At 27 - finally diagnosed with EDS/ANS disorder and Dysautonomnia. So it wasn't all in my head after all!!!!
No connection between crohns and POTS according to all medical specialists dealing with me.
So, I'm 27 with crohns disease, autonomic nervous system disorder, ehlers danlos syndrome, postural orthostatic tachycardia syncope, chronic fatigue syndrome, polycystic ovary syndrome and dysautonomnia. Nice list of illnesses going on, which co-incidently started to become severe when triggered by a blackout at 19 years of age. Although I started signs of all of the above conditions when I was actually 13 years old - they took 6 years to properly manifest. I believe the signs of crohns were there in early childhood.
I shall not say here about all the bad stuff that happened to me as a child, because that is in the past and doesn't effect me any more; but I didn't have a good start in life - lots of bad stuff that shouldn't have happened to me/anyone did happen - but that's not for here (maybe later in my blog but not now) --- so lets start on my health journey.
At 13 I began to get pain every time I ate, I found eating difficult or rather painful and as a result ate very little which made people assume I was anorexic. My blackouts also began around this time at the onset of puberty where I fainted each month on the first day of my cycle.
At 17 I started to see the doctor and was simply sent for blood tests, told I didn't have diabetes and it was left at that.
At 19 following a major blackout where I was found a short distance from my car (having pulled it over on to a roundabout to get help) ended me up in Resus unit. This led to me having an MRI scan and blood tests, to no avail. I started blacking out weekly at this point - whereas before hand it had only been monthly. No results from tests, so doctors gave up on looking for further answers.
At 20 I had a major pain in my abdomen which I blacked out from, it was thought that I had appendicitis, although this was found to not be the case. I was sent home, but put on the list for a sigmoidoscope; which showed no results. Told I had IBS.
The blackouts continued, I was put on beta-blockers, which made me ill, given more tests and fitted with a 72 hour heart monitor. Still no luck. I was told it was all psycho-symptomatic, in my head and according to my hospital notes at this time "disillusioned about being in ill health". Who was I to argue with the Dr's? I took this as fact and thought that maybe there really was nothing wrong with me.
At 22 I was diagnosed with vasa vagal syncope, which just means common faint. Not very useful, but at least the medication I was put on at this time stopped my blackouts for a while.
At 25 I got my own house and as a result switched G.P which was to become the best thing possible as he was determined to get to the base of all my problems and find out why I was ill. He was the first doctor to listen to me and believe me that something was wrong! He sent me to many specialists and I was soon diagnosed with POTS. A year later I was diagnosed with crohns disease after having lost a lot of weight in this time.
Although there is no cure for either of the above, at least I had a diagnosis.
At 27 - finally diagnosed with EDS/ANS disorder and Dysautonomnia. So it wasn't all in my head after all!!!!
No connection between crohns and POTS according to all medical specialists dealing with me.
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