- Joined
- Jul 5, 2011
- Messages
- 3
Hi everyone, just thought i'd start off by saying how happy I am that such a place exists, and the strong community support that there is here. I thought i'd sign up and share my story for the hope of some advice and support, and to share my story in the hope that it can provide comfort and advice for others too! Apologies for the long story in advance, just want to tell in as much detail as possible as I know this disease is different for everyone, and want to try to cover all bases!
My story all began back in November 2006, when I was taken to hospital for pain on my right side of my abdomen. Doctors after a lot of testing in A&E diagnosed it as 'rumbling appendicitus' which apparently needed no procedure and medication, and could return in 4 years as appendicitus. Needless to say, the doctor had it spot on, and in November 2010, I was rushed to A&E with the same pain. I was admitted to hospital and had an appendectimy as an emergency operation, where I made a fast and relatively low-pain recovery. About a month later in December 2010, I started to feel a random pain in my stomach, that would come 4 or 5 times a day.
The pain was never severe, but was enough to make me notice it, and not enough to stop what I was doing for around the 20 seconds it needed before the pain vanished; much like turning it on and off like a tap. I never bothered going to the doctors as the pain never really affected me too bad, and I just got on with everything as normal. About 4 months later in April 2011, the pain started to become more severe and more frequent, coming around 20-30 times a day, and the pain increased to the point where I would have to stop conversation, and sit down until the pain subsided. In around May 2011, the pain had got so severe that when it came along (still lasting around 20 seconds) I would groan and moan with it, and lay in funny and awkward positions. Eventually in the beginning of June/end of May, the pain had got to the point where I was having around 20 minutes between the pain coming and going, and the pain was incredibly severe. I started to walk around the house bent over slightly (much to the amusement of my younger bro!) and decided I needed a doctor.
I booked in with my GP and my doctor diagnosed me with a stomach ulcer, and prescribed me Buscopan and Lansoprazole, which after 2 weeks had done nothing to ease pain or symptoms. I reattended my doctor, who advised me to stop taking the Buscopan, and to continue with Lansoprazole. I eventually attended A&E a few days later (as symptoms got worse and worse unbelievably) and explained my pain. I told the A&E doctor that the pain was like a burning sensation, mixed with the feeling of having my stomach tied in a knot for 20 seconds a time above my belly button. The doctor gave me co-codamol which eased the pain, and prescribed me that before booting me out of A&E. 3 Days later, I attended A&E again, where the doctor told me after a lengthy discussion and more blood tests, that this could be IBS, and told me to cut out foods and keep a food diary.
For one final week, the pain became unbearable to the point where I was bedwridden, and decided to stop eating entirely. I started to be sick whenever I ate, and could eat such a minimal amount before feeling like I'd eaten a horse, and stopped opening my bowels, and when I did, it was a very liquidy concoction to say the least. After I stopped eating, the pain eased off ever slightly, and I felt the best i'd felt in a good month.
Unfortunately for me, being the happy go-lucky kinda guy I am, decided that along with my two friends and girlfriend, I'd still attend Alton Towers (a huge theme park over here in the UK) as we had a hotel room booked, and had this arranged months in advance. BIG MISTAKE. In the middle of the park, the pain reached breaking point, and became instant. I'd looked at my stomach, and it had swollen into a massively abnormal shape, and soon enough I began passing out from the pain. I was taken by ambulance to hospital, with a lot of morphine, miles from home and my family, and was admitted for a week, where they put me nil by mouth, and was fed and watered intravenously. My condition improved massively and the pain completely disappeared. My stomach shrank to normal size and was finally sent home after spending a week up there on my own (admittedly, my dad and his wife had stayed in hotels, and my girlfriend had been there a few days). I went home and for 2 days, my family, me and my girlfriend all celebrated as I was eating without pain for the first time in 7 months!
2 days later, the pain returned, just as severe as when I collapsed, and was taken to hospital again with a lot of morphine. After laying on the hospital bed in A&E, I was discharged and told there was no medical or surgical emergency. The very next day, the same thing happented, and I went to the out-of-hours GP to try to get some form of pain relief. Finally, my saviour came in the form of Dr. Ozel, who told me I was severely swollen, and was a surgical emergency, and admitted me to A&E, who finally saw how severe I was and admitted me for surgery. After x-rays and blood tests, 4 hours after being admitted I was told my bowels had completely closed up, and that's why I couldn't hold food down. I spent the next 4 hours laying in a hospital bed, being sick and in agony. 1 hour after that, I was taken down to theatre pretty prompt and had surgery for a resection. I woke up 6 hours later in a great deal of pain, with a catheter in, a tube down my throat from my nose, and a great big scar down my tummy!
I spent the next 2 weeks in hospital having my friends and family come and visit me, and nil by mouth. I was on a pain control release device, that released morphine into me intravenously in the form of 1mg every 5 minutes. 2 days after my surgery, my temperate began to soar, and the pain began to increase. My hemoglebin levels dropped dramatically and my blood cultures showed not good signs. I ended up having 4 blood transfusions and spent a night in Intensive Care Unit, unfortunately to monitor my condition as there was a chance of death. I spent 24 hours seriously thinking I wasn't making it through the night, and had started seriously contemplating sending some texts to my friends just incase. I have never been so scared in my life, and words will never explain that feeling of thinking you might not wake up or "is this it?" every time I lost consciousness with my distraught mother by my side. Luckily my fingers stopped going numb, and my vitals all picked up and 24 hours later, I felt good again (minus the surgery pain) and was told I wasn't likely to die now. Phew.
I slowly learnt how to walk, and could start to move around again, and began to produce very loose, liquidy stools with a little blood in at first. After that I began to really pick up and eventually was discharged from hospital after a CT scan, with a couple packs of 30/500 mg co-codamal which was a life-saver in relieving my pain at home. At home, I began to really get my appetite back (which I lost severely in hospital due to the amount of morphine I was on). Each day, I felt a little less pain, and after a week had the staples from my scar removed. I was suprised at how it didn't hurt anywhere near I thought it would, and my stomach felt less tense and held in.
Eventually, my histoligy report came back, and I was, unfortunately diagnosed with Crohn's Disease. I didn't really speak for about 24 hours and spent a lot of time just crying and really not being able to deal with the news I'd just received. I didn't know a lot about the disease, and it turns out so do a lot of people - including doctors alike! I read some horror stories, and read some amazing stories too, and concluded that a lot of the time it's trial and error, a whole lot of luck, and the realization that there isn't a lot any of us can do about this awful disease apart from not let it stop our lives.
I'm now 4 weeks on from surgery, and my scar and stomach has healed quite nicely. The pain i'd felt all before the surgery has completely stopped, and i've been eaten what I want, when I want and haven't felt any pain at all. I've occasionally had the odd uncomfortable pain, and really went through it, and even bloated slightly, but on the whole have really felt like I've massively improved.
I've never felt so down in my life these past 2 months, and anything anyone threw at me to try to get my mind off it, or to help, I dismissed. I really struggled to feel I'd ever get my life back on track, and I'd be stuck forever, but soon realised that there isn't anything I can do about this, so I need to learn how to manage it, and pick up on all the good. I now couldn't feel better about life!
I love my music, and have started to continue to do that. With my pain killers, i've even started to return back to basic sports, and am returning to work this Friday. Unfortunately, I have a rock solid area under my scar which is infection, and am on Antibiotics to hopefully clear, but even that isn't bothering me!
After reading peoples stories on this forum, it's really made me feel so positive to know that I'm not alone, I'm not the only one, there is light at the end of the tunnel, and that I just need to get on with my life and not spend forever dwelling on this, otherwise this disease may as well be a terminal illness or life-sentence. I have an appointment with the gastro on the 17th of July, and am well aware that the story doesn't end here.
I know I may have surgery and pain again in the future, and until there is a cure, this is something I will have to deal with. I know I have the support of others such as anyone on this forum, and my family around me, and I know that these 2 weeks of feeling great probably won't last forever. I know that this isn't the case for everyone, and I know that I need to be careful of what is to come.
But until then, I'm going to use every last bit of the fact that I have felt cured to know that there is a way to manage and deal with this horrible disease, and to know that with the support of people around you, your aspirations and dreams, and willpower, life is out there to get for all of us, and I can't thank you all enough.
I hope my story can help others, and maybe people can relate to what I went through, and I hope that anyone who has read this miniature book on my life, can fill in the blanks as to what to expect in the near future, what to expect from the gastro, and what the best thing I can do is from now on!
Thanks again for letting me just get this whole experience onto electronic paper, and be part of this wonderful community.
All the best,
Ben x :ghug:
My story all began back in November 2006, when I was taken to hospital for pain on my right side of my abdomen. Doctors after a lot of testing in A&E diagnosed it as 'rumbling appendicitus' which apparently needed no procedure and medication, and could return in 4 years as appendicitus. Needless to say, the doctor had it spot on, and in November 2010, I was rushed to A&E with the same pain. I was admitted to hospital and had an appendectimy as an emergency operation, where I made a fast and relatively low-pain recovery. About a month later in December 2010, I started to feel a random pain in my stomach, that would come 4 or 5 times a day.
The pain was never severe, but was enough to make me notice it, and not enough to stop what I was doing for around the 20 seconds it needed before the pain vanished; much like turning it on and off like a tap. I never bothered going to the doctors as the pain never really affected me too bad, and I just got on with everything as normal. About 4 months later in April 2011, the pain started to become more severe and more frequent, coming around 20-30 times a day, and the pain increased to the point where I would have to stop conversation, and sit down until the pain subsided. In around May 2011, the pain had got so severe that when it came along (still lasting around 20 seconds) I would groan and moan with it, and lay in funny and awkward positions. Eventually in the beginning of June/end of May, the pain had got to the point where I was having around 20 minutes between the pain coming and going, and the pain was incredibly severe. I started to walk around the house bent over slightly (much to the amusement of my younger bro!) and decided I needed a doctor.
I booked in with my GP and my doctor diagnosed me with a stomach ulcer, and prescribed me Buscopan and Lansoprazole, which after 2 weeks had done nothing to ease pain or symptoms. I reattended my doctor, who advised me to stop taking the Buscopan, and to continue with Lansoprazole. I eventually attended A&E a few days later (as symptoms got worse and worse unbelievably) and explained my pain. I told the A&E doctor that the pain was like a burning sensation, mixed with the feeling of having my stomach tied in a knot for 20 seconds a time above my belly button. The doctor gave me co-codamol which eased the pain, and prescribed me that before booting me out of A&E. 3 Days later, I attended A&E again, where the doctor told me after a lengthy discussion and more blood tests, that this could be IBS, and told me to cut out foods and keep a food diary.
For one final week, the pain became unbearable to the point where I was bedwridden, and decided to stop eating entirely. I started to be sick whenever I ate, and could eat such a minimal amount before feeling like I'd eaten a horse, and stopped opening my bowels, and when I did, it was a very liquidy concoction to say the least. After I stopped eating, the pain eased off ever slightly, and I felt the best i'd felt in a good month.
Unfortunately for me, being the happy go-lucky kinda guy I am, decided that along with my two friends and girlfriend, I'd still attend Alton Towers (a huge theme park over here in the UK) as we had a hotel room booked, and had this arranged months in advance. BIG MISTAKE. In the middle of the park, the pain reached breaking point, and became instant. I'd looked at my stomach, and it had swollen into a massively abnormal shape, and soon enough I began passing out from the pain. I was taken by ambulance to hospital, with a lot of morphine, miles from home and my family, and was admitted for a week, where they put me nil by mouth, and was fed and watered intravenously. My condition improved massively and the pain completely disappeared. My stomach shrank to normal size and was finally sent home after spending a week up there on my own (admittedly, my dad and his wife had stayed in hotels, and my girlfriend had been there a few days). I went home and for 2 days, my family, me and my girlfriend all celebrated as I was eating without pain for the first time in 7 months!
2 days later, the pain returned, just as severe as when I collapsed, and was taken to hospital again with a lot of morphine. After laying on the hospital bed in A&E, I was discharged and told there was no medical or surgical emergency. The very next day, the same thing happented, and I went to the out-of-hours GP to try to get some form of pain relief. Finally, my saviour came in the form of Dr. Ozel, who told me I was severely swollen, and was a surgical emergency, and admitted me to A&E, who finally saw how severe I was and admitted me for surgery. After x-rays and blood tests, 4 hours after being admitted I was told my bowels had completely closed up, and that's why I couldn't hold food down. I spent the next 4 hours laying in a hospital bed, being sick and in agony. 1 hour after that, I was taken down to theatre pretty prompt and had surgery for a resection. I woke up 6 hours later in a great deal of pain, with a catheter in, a tube down my throat from my nose, and a great big scar down my tummy!
I spent the next 2 weeks in hospital having my friends and family come and visit me, and nil by mouth. I was on a pain control release device, that released morphine into me intravenously in the form of 1mg every 5 minutes. 2 days after my surgery, my temperate began to soar, and the pain began to increase. My hemoglebin levels dropped dramatically and my blood cultures showed not good signs. I ended up having 4 blood transfusions and spent a night in Intensive Care Unit, unfortunately to monitor my condition as there was a chance of death. I spent 24 hours seriously thinking I wasn't making it through the night, and had started seriously contemplating sending some texts to my friends just incase. I have never been so scared in my life, and words will never explain that feeling of thinking you might not wake up or "is this it?" every time I lost consciousness with my distraught mother by my side. Luckily my fingers stopped going numb, and my vitals all picked up and 24 hours later, I felt good again (minus the surgery pain) and was told I wasn't likely to die now. Phew.
I slowly learnt how to walk, and could start to move around again, and began to produce very loose, liquidy stools with a little blood in at first. After that I began to really pick up and eventually was discharged from hospital after a CT scan, with a couple packs of 30/500 mg co-codamal which was a life-saver in relieving my pain at home. At home, I began to really get my appetite back (which I lost severely in hospital due to the amount of morphine I was on). Each day, I felt a little less pain, and after a week had the staples from my scar removed. I was suprised at how it didn't hurt anywhere near I thought it would, and my stomach felt less tense and held in.
Eventually, my histoligy report came back, and I was, unfortunately diagnosed with Crohn's Disease. I didn't really speak for about 24 hours and spent a lot of time just crying and really not being able to deal with the news I'd just received. I didn't know a lot about the disease, and it turns out so do a lot of people - including doctors alike! I read some horror stories, and read some amazing stories too, and concluded that a lot of the time it's trial and error, a whole lot of luck, and the realization that there isn't a lot any of us can do about this awful disease apart from not let it stop our lives.
I'm now 4 weeks on from surgery, and my scar and stomach has healed quite nicely. The pain i'd felt all before the surgery has completely stopped, and i've been eaten what I want, when I want and haven't felt any pain at all. I've occasionally had the odd uncomfortable pain, and really went through it, and even bloated slightly, but on the whole have really felt like I've massively improved.
I've never felt so down in my life these past 2 months, and anything anyone threw at me to try to get my mind off it, or to help, I dismissed. I really struggled to feel I'd ever get my life back on track, and I'd be stuck forever, but soon realised that there isn't anything I can do about this, so I need to learn how to manage it, and pick up on all the good. I now couldn't feel better about life!
I love my music, and have started to continue to do that. With my pain killers, i've even started to return back to basic sports, and am returning to work this Friday. Unfortunately, I have a rock solid area under my scar which is infection, and am on Antibiotics to hopefully clear, but even that isn't bothering me!
After reading peoples stories on this forum, it's really made me feel so positive to know that I'm not alone, I'm not the only one, there is light at the end of the tunnel, and that I just need to get on with my life and not spend forever dwelling on this, otherwise this disease may as well be a terminal illness or life-sentence. I have an appointment with the gastro on the 17th of July, and am well aware that the story doesn't end here.
I know I may have surgery and pain again in the future, and until there is a cure, this is something I will have to deal with. I know I have the support of others such as anyone on this forum, and my family around me, and I know that these 2 weeks of feeling great probably won't last forever. I know that this isn't the case for everyone, and I know that I need to be careful of what is to come.
But until then, I'm going to use every last bit of the fact that I have felt cured to know that there is a way to manage and deal with this horrible disease, and to know that with the support of people around you, your aspirations and dreams, and willpower, life is out there to get for all of us, and I can't thank you all enough.
I hope my story can help others, and maybe people can relate to what I went through, and I hope that anyone who has read this miniature book on my life, can fill in the blanks as to what to expect in the near future, what to expect from the gastro, and what the best thing I can do is from now on!
Thanks again for letting me just get this whole experience onto electronic paper, and be part of this wonderful community.
All the best,
Ben x :ghug:
