Hi Everyone
I came accross your site on google, and Ive spent hours reading it ever since. There is something comforting knowing that I am not the only one sufferin gtheir way through this disease. I'll try and briefly fill you in on my story/ journey so far with Crohn's.
I first began having symptoms (gas, cramping, diarreha) on the weekend of my 20th birthday, fun fun. I was leading a crazy life and in retrospect was probably putting stupid amounts of stress on my body. Also, of interest, I had just spent 6 months on a flour/sugar free diet and began eating what ever I wanted the weekend of my birthday. anyways, things went from bad to worse and I had to leave university. I sought help from medical doctors for my symptoms, and apart from one doctor who told me i had a high rheumatoid count, I was told over and over again that the symptoms were psychological and I would get better if I got some counselling/ mental health help (oh puh-lease!). I lost over 20kgs, I was in agony! I dont actually even know how skinny I got because I stopped standing on scales so when people asked me how much I weighed i could honestly say i dont know. Oh yeah, did I mention that my doctor at the time also thought I had anorexia??
I have since requested my medical notes to read. what i saw shocked me. i didnt know it at the time (I was new to this crohn's business), but my first GI doctor was actually treating me for crohn's, but had never told me that is what i had. He prescribed me huge amounts of prednisone, from which i developed cushings, and then told me that the anxiety i was experiencing was another sign that I needed psychological help. No one ever told me you got a racing heart and adrenaline rush from prednisone!
It wasnt until 6 years later and numerous visits to the Emergency Department that I came accross a wonderful doctor who believed I wasnt "thinking" myself into this situation. I had a barium xray that showed an 11cm narrowing in my ileum. Incidentally, this narrowing was also evident on an xray performed 2 years earlier but was some how missed, duh.
So, in 2003 i had a resection and a loop ileostomy made. My life changed forever! i was finally well. I was able to get a full time job, have a social life, travel, anything and everything I had ever wanted was now in my reach. For months I contemplated the reversal of my ileostomy, but decided that I never wanted to feel powerless over my health again. i had developed some diversion colitis in my colon since the operation in 03, so was extra nervous about the possibility of food re-entering my colon full time. so, i decided to get the ileostomy made permenant. I really wish i could say that this was my happily ever after, but life has been really hard since.
Due to the abuse my body has been through with the medication (different steroids and immunosuppressants) and the surgeries (three now) my adreanal glands have crapped out too. I continue to have pain in my small intestine. i think it might be a stricture or something that went wrong when I had my colon removed. I have been in pain ever since that operation. Ive had MRI's and CAT scans that show nothing, but Im not convinced. My food takes up to 9 hours to get into my bag, I have bloating on my left side, cramping pressure, A LOT of pain, and even if I only eat a little bit I feel full with indigestion and an upwards pressure.
Im desperate to talk to other people and see what their experience has been. I really want my life back and i know that knowledge is power. I hate being on steroids and they are not working anyway. Immunosuppresants make me feel sooo nauseaous. even when i had my first run through with crohn's the drugs never worked. Im going to ask for another Barium xray and see if that shows anything, at the very least it will show that my transition time is waaaaaay to slow.
Im getting ready to do the Specific carbohydrate Diet and my endocronologist is prepared to prescribe me low dose naltrexone. im just trying to find out if ldn can help with strictures/ narrowing or whatever the heck is wrong with me. And if there is anything else i can try I'll do it!
So that's me in a nut-shell. Of course, there is so much more to me than this stupid disease, but for now the pain and discomfort is bad enough, that even i have trouble focussing on anything else.
Cant wait to meet you all
Jo
I came accross your site on google, and Ive spent hours reading it ever since. There is something comforting knowing that I am not the only one sufferin gtheir way through this disease. I'll try and briefly fill you in on my story/ journey so far with Crohn's.
I first began having symptoms (gas, cramping, diarreha) on the weekend of my 20th birthday, fun fun. I was leading a crazy life and in retrospect was probably putting stupid amounts of stress on my body. Also, of interest, I had just spent 6 months on a flour/sugar free diet and began eating what ever I wanted the weekend of my birthday. anyways, things went from bad to worse and I had to leave university. I sought help from medical doctors for my symptoms, and apart from one doctor who told me i had a high rheumatoid count, I was told over and over again that the symptoms were psychological and I would get better if I got some counselling/ mental health help (oh puh-lease!). I lost over 20kgs, I was in agony! I dont actually even know how skinny I got because I stopped standing on scales so when people asked me how much I weighed i could honestly say i dont know. Oh yeah, did I mention that my doctor at the time also thought I had anorexia??
I have since requested my medical notes to read. what i saw shocked me. i didnt know it at the time (I was new to this crohn's business), but my first GI doctor was actually treating me for crohn's, but had never told me that is what i had. He prescribed me huge amounts of prednisone, from which i developed cushings, and then told me that the anxiety i was experiencing was another sign that I needed psychological help. No one ever told me you got a racing heart and adrenaline rush from prednisone!
It wasnt until 6 years later and numerous visits to the Emergency Department that I came accross a wonderful doctor who believed I wasnt "thinking" myself into this situation. I had a barium xray that showed an 11cm narrowing in my ileum. Incidentally, this narrowing was also evident on an xray performed 2 years earlier but was some how missed, duh.
So, in 2003 i had a resection and a loop ileostomy made. My life changed forever! i was finally well. I was able to get a full time job, have a social life, travel, anything and everything I had ever wanted was now in my reach. For months I contemplated the reversal of my ileostomy, but decided that I never wanted to feel powerless over my health again. i had developed some diversion colitis in my colon since the operation in 03, so was extra nervous about the possibility of food re-entering my colon full time. so, i decided to get the ileostomy made permenant. I really wish i could say that this was my happily ever after, but life has been really hard since.
Due to the abuse my body has been through with the medication (different steroids and immunosuppressants) and the surgeries (three now) my adreanal glands have crapped out too. I continue to have pain in my small intestine. i think it might be a stricture or something that went wrong when I had my colon removed. I have been in pain ever since that operation. Ive had MRI's and CAT scans that show nothing, but Im not convinced. My food takes up to 9 hours to get into my bag, I have bloating on my left side, cramping pressure, A LOT of pain, and even if I only eat a little bit I feel full with indigestion and an upwards pressure.
Im desperate to talk to other people and see what their experience has been. I really want my life back and i know that knowledge is power. I hate being on steroids and they are not working anyway. Immunosuppresants make me feel sooo nauseaous. even when i had my first run through with crohn's the drugs never worked. Im going to ask for another Barium xray and see if that shows anything, at the very least it will show that my transition time is waaaaaay to slow.
Im getting ready to do the Specific carbohydrate Diet and my endocronologist is prepared to prescribe me low dose naltrexone. im just trying to find out if ldn can help with strictures/ narrowing or whatever the heck is wrong with me. And if there is anything else i can try I'll do it!
So that's me in a nut-shell. Of course, there is so much more to me than this stupid disease, but for now the pain and discomfort is bad enough, that even i have trouble focussing on anything else.
Cant wait to meet you all
Jo
anda-wave-t: 
