Hi everyone. I'm new here; although my problems have been going on for 4 years now. I know no one on here is a medical professional but what i'm trying to do is piece things together. I'll start from the beginning.
4 years ago, I suddenly started getting very sick. I was in pain all the time (the middle of my abdomen, and my right side.) I was going to the toilet 20 times a day minimum. I lost a lot of weight. I went from 79kg down to 60kg (Apologies for those of you in America i don't know what that is in ibs. lol)
Anyway, after countless visits to the gp i was told it was 'IBS'...A few weeks later the pain got so bad i had to force myself down to the GP and tell them something wasn't right. They wrote a note for me and i headed to A&E funnily enough; the note mentioned 'to rule out appendicitis.' Anyway after the 6 hour wait to see a doctor they finally analysed me. They instantly decided it was my appendix that needed to be removed. Fast forward post surgery....The doctor came to show me my appendix....(It looked completely healthy.) He gave me some excuse about how 'it was inflamed from the inside.' They also told me that i had way too much mucus in my system.
Moving on a month after surgery, I was still experiencing severe pain in my right side. My gp reluctantly (Yes, really...) referred me to a gastroenterologist. Where after a 4 month wait they finally did a colonoscopy. Which came back clear.' I started to accept that i'd have to live with so called 'IBS' I spent the next year trying EVERYTHING the lowfodmap diet, gluten free, anti diarrhoea medication, peppermint capsules etc. Nothing worked. The only difference was I was gaining weight again but i was still in pain. So much so that i spend most of my days lying on my couch unable to do anything.
Went to see my gastro again, and told him nothing was working. He referred me to a pelvic floor unit at Guys and St thomas's hospital. Where they concluded I have a condition called Animus. Where my rectum is constantly tensed...Yet again...to no avail. Although i was only going once maybe twice a day. My stools were solid but very painful to pass. I was having moments where i'd have the most excruciating pain I've ever felt just before passing a normal stool (this still happens now but we'll get there.) I end up waking up in the middle of the night sometimes with this same excrutiating pain before having a diarrhoea episode.
Over the past 4 years i've been to A&E so many times; to the point where they diagnosed me with Anxiety in the end. The only tests they ever do is a CBC...as soon as that comes back normal they tell you to F off.
Let's go back to today now; I still have this constant pain in my right side, and middle of my abdomen. It just doesn't go away. Not even with powerful painkillers. My rectum almost always hurts...I'm still passing huge amounts of mucus whenever i go to the toilet, and i feel like i'm not getting anywhere.
I'm not trying to take anything away from you guys that actually have CD believe me, I've met people with CD since my episode began, and seeing what you guys go through hurts believe me.
What frustrates me more is that I don't actually know what the hell is going on with My gi system. Being Told 'it's only ibs, it's nothing serious, you're over reacting' really doesn't sit well with me. I don't understand how IBS wakes me up in the middle of the night in agony and breaking out in sweats before i spend the next half an hour crying in pain on the toilet.
At this current moment i'm trying to get an upper endoscopy or pill cam sorted but my current gastro doesn't 'see it as necessary.' although I've never actually had one done.
What i'd like to ask you guys is this:
Have any of you had a dx of CD without any passing of blood actually involved?
Did you have your first flare up get a wrong Dx and things got worse years later?
Can 'IBS' even cause severe weight loss?
Have any of you ever had normal inflammation markers before you Dx?
If anyone has experienced anything similar to my story; i'd love to hear it. Like i said i'm not looking for a dx; i'd just like to try and piece things together before my next gastro appointment.
Thank you so much to everyone that takes time to read this.
regards,
Will
4 years ago, I suddenly started getting very sick. I was in pain all the time (the middle of my abdomen, and my right side.) I was going to the toilet 20 times a day minimum. I lost a lot of weight. I went from 79kg down to 60kg (Apologies for those of you in America i don't know what that is in ibs. lol)
Anyway, after countless visits to the gp i was told it was 'IBS'...A few weeks later the pain got so bad i had to force myself down to the GP and tell them something wasn't right. They wrote a note for me and i headed to A&E funnily enough; the note mentioned 'to rule out appendicitis.' Anyway after the 6 hour wait to see a doctor they finally analysed me. They instantly decided it was my appendix that needed to be removed. Fast forward post surgery....The doctor came to show me my appendix....(It looked completely healthy.) He gave me some excuse about how 'it was inflamed from the inside.' They also told me that i had way too much mucus in my system.
Moving on a month after surgery, I was still experiencing severe pain in my right side. My gp reluctantly (Yes, really...) referred me to a gastroenterologist. Where after a 4 month wait they finally did a colonoscopy. Which came back clear.' I started to accept that i'd have to live with so called 'IBS' I spent the next year trying EVERYTHING the lowfodmap diet, gluten free, anti diarrhoea medication, peppermint capsules etc. Nothing worked. The only difference was I was gaining weight again but i was still in pain. So much so that i spend most of my days lying on my couch unable to do anything.
Went to see my gastro again, and told him nothing was working. He referred me to a pelvic floor unit at Guys and St thomas's hospital. Where they concluded I have a condition called Animus. Where my rectum is constantly tensed...Yet again...to no avail. Although i was only going once maybe twice a day. My stools were solid but very painful to pass. I was having moments where i'd have the most excruciating pain I've ever felt just before passing a normal stool (this still happens now but we'll get there.) I end up waking up in the middle of the night sometimes with this same excrutiating pain before having a diarrhoea episode.
Over the past 4 years i've been to A&E so many times; to the point where they diagnosed me with Anxiety in the end. The only tests they ever do is a CBC...as soon as that comes back normal they tell you to F off.
Let's go back to today now; I still have this constant pain in my right side, and middle of my abdomen. It just doesn't go away. Not even with powerful painkillers. My rectum almost always hurts...I'm still passing huge amounts of mucus whenever i go to the toilet, and i feel like i'm not getting anywhere.
I'm not trying to take anything away from you guys that actually have CD believe me, I've met people with CD since my episode began, and seeing what you guys go through hurts believe me.
What frustrates me more is that I don't actually know what the hell is going on with My gi system. Being Told 'it's only ibs, it's nothing serious, you're over reacting' really doesn't sit well with me. I don't understand how IBS wakes me up in the middle of the night in agony and breaking out in sweats before i spend the next half an hour crying in pain on the toilet.
At this current moment i'm trying to get an upper endoscopy or pill cam sorted but my current gastro doesn't 'see it as necessary.' although I've never actually had one done.
What i'd like to ask you guys is this:
Have any of you had a dx of CD without any passing of blood actually involved?
Did you have your first flare up get a wrong Dx and things got worse years later?
Can 'IBS' even cause severe weight loss?
Have any of you ever had normal inflammation markers before you Dx?
If anyone has experienced anything similar to my story; i'd love to hear it. Like i said i'm not looking for a dx; i'd just like to try and piece things together before my next gastro appointment.
Thank you so much to everyone that takes time to read this.
regards,
Will