Hi
Where to start. Ok a bit of my crohns history. Settle in and get coffee this may take a while.
I was originally diagnosed months shy of my 21st birthday. I was in my final year at university completing a bachelor of science. The course coordinator, a total prat, strongly recommended that I drop out of uni as I would be too sick to peruse a career. What a jerk, 3 years through a 4 year bachelor. I told him that if I failed a subject we would revisit his suggestion and went on to complete with honors.
Back then (1992) there were not many drug options and I went on the regime of steroids, immuran and mesasal.
I had my first surgery in1994 where I had an extended right hemi colectomy to clean the slate and start again. Very naively believed that I would be fine and cured ( was what I wanted to believe I suppose) after the op life went on rather well with steroids, immuran and mesasal holding the disease.
I worked hard saved my money and went off overseas to do the working holiday in Europe. I went with my Gastro's blessings and a list of contacts for Gastro's in the UK. Probably the bravest thing I have ever done, and one that I am proud of. Whilst overseas the disease kept active, and it is not an easy task to run to the bathroom with a huge backpack on. Or to find a toilet in a country where you don't speak the language. But as I said, I had a fantastic time and didn't let the dreaded crohns stop me from living my life.
After the working holiday I returned back home to Australia and moved to the bush. Quiet literally the back of Bourke. Still on same meds and functioning well.
It was during this time that I met and married my beautiful husband. Can't believe how great we are together, I have crohns with stinky butt stuff:stinks:, and he has NO sense of smell.
Got married, had twins, had to go off most of my medications during the pregnancy, and thinking I would breast feed lead to my health demise. When the twins were 6 months old I ended up having my next bowel resection, Not easy when you have 2 babies to look after. Thank god for my family they're the heroes in my story.
Right about he time of the resection, we moved interstate so was a difficult year. When I found a new specialist infliximab ( remicade) had just been approved for use in Australia, so I was put on it and had my first infusion, 6 months later I had my second. Sometime after that we got the shock of our lives and discovered we were having another baby. This time I didn't breast feed which made a huge difference. Six months after ro was born I ended up with a large internal abcess sitting between my uterus and bowel. Think I was in and out of hospital having the damn thing drained, every time they wound insert a drain, I would go tithe loo and it would fall out. Eventually that cleared up, but my 'specialist was adamant it was not crohns related! Funny thin was I developed a rectovaginal fistula with in months of the abcess occurring. Once the abcess was under control and I had found a fantastic Gastro's enterologist and a colorectal surgeon I was given another infusion of Infliximab. Unfortunately a week after the injection I became critically unwell, and was found to have had an anaphylactic reaction resulting in septic shock. I ended u
In an induced coma, and was very lucky to make it. Apparently I am some kind of freak, and this had never happened to anyone before. So no more infliximab- the one that is supposed to be the best for fistulising disease.
Oops nearlly forgot the pin hole stricture episode. Ended up having a stricture only a pin hole left open, and an internal fistula joining 2 bowel loops. Was really unwell and ended up having yet another bowel resection. My poor kids have had to endure way too much upheaval from me getting sick. Forgot to mention that while they had me open they noticed my ovaries looked dodgy, so they took both of them out. Think that was the hardest part of my recovery. Immediate menopause at 38 the surgery was actually on my birthday (yay lucky me). Was so not expecting to wake up with those gone.
So now as fate so carefully plans I have developed severe rectal crohns with my butt basically turning into a watering can. I poop between 15-30 times a day, and have some lovely setons placed all around my butt and girls bits. I am on humira now with fortnightly injections, but unfortunately my bum is knackered and has to go.
This is all probably a little dark and defeatist to read, as I spent the weekend in hospital having abscesses drained and setons replaced. I even had a huge abcess drained of my labia. Is there no place this disease won't kick you. Just when I think it can't get anymore embarrassing I get labial abscesses. Any way was told post op that I have to have a permanent colostomy done ASAP as my bum will never heal and I am putting to much strain on my body through all the infection.
I always said I wouldn't let this disease beat me, but I think I have to wave the white flag and admit defeat. I have always told my surgeon that if he needed to do a colostomy to not wake me up, now I have to face my worst fear and try and accept the fact that this is going to happen and I can't put it off. I know all of you out there with colostomys say they have changed you life for the betkter, I still have to convince myself of this. Have spent all weekend crying, can't even look at my husband or kids. Don't know how I am going to do this.
I think I need to reflect on the fact that as a mother of 3 i need to have this operation done. Maybe I need to cut back on my working hours I love my family dearly. I just wish we lived closer to relatives to help my husband out when things go pear shaped..
Medications
Humira fortnightly
Immuran
Loperamide
Flagyl
B12
Nexium
And a mixture of other medication for the carpal tunnel and ruptured disc that plus other health problems that have occurred due to 15 years on steroids.
Where to start. Ok a bit of my crohns history. Settle in and get coffee this may take a while.
I was originally diagnosed months shy of my 21st birthday. I was in my final year at university completing a bachelor of science. The course coordinator, a total prat, strongly recommended that I drop out of uni as I would be too sick to peruse a career. What a jerk, 3 years through a 4 year bachelor. I told him that if I failed a subject we would revisit his suggestion and went on to complete with honors.
Back then (1992) there were not many drug options and I went on the regime of steroids, immuran and mesasal.
I had my first surgery in1994 where I had an extended right hemi colectomy to clean the slate and start again. Very naively believed that I would be fine and cured ( was what I wanted to believe I suppose) after the op life went on rather well with steroids, immuran and mesasal holding the disease.
I worked hard saved my money and went off overseas to do the working holiday in Europe. I went with my Gastro's blessings and a list of contacts for Gastro's in the UK. Probably the bravest thing I have ever done, and one that I am proud of. Whilst overseas the disease kept active, and it is not an easy task to run to the bathroom with a huge backpack on. Or to find a toilet in a country where you don't speak the language. But as I said, I had a fantastic time and didn't let the dreaded crohns stop me from living my life.
After the working holiday I returned back home to Australia and moved to the bush. Quiet literally the back of Bourke. Still on same meds and functioning well.
It was during this time that I met and married my beautiful husband. Can't believe how great we are together, I have crohns with stinky butt stuff:stinks:, and he has NO sense of smell.
Got married, had twins, had to go off most of my medications during the pregnancy, and thinking I would breast feed lead to my health demise. When the twins were 6 months old I ended up having my next bowel resection, Not easy when you have 2 babies to look after. Thank god for my family they're the heroes in my story.
Right about he time of the resection, we moved interstate so was a difficult year. When I found a new specialist infliximab ( remicade) had just been approved for use in Australia, so I was put on it and had my first infusion, 6 months later I had my second. Sometime after that we got the shock of our lives and discovered we were having another baby. This time I didn't breast feed which made a huge difference. Six months after ro was born I ended up with a large internal abcess sitting between my uterus and bowel. Think I was in and out of hospital having the damn thing drained, every time they wound insert a drain, I would go tithe loo and it would fall out. Eventually that cleared up, but my 'specialist was adamant it was not crohns related! Funny thin was I developed a rectovaginal fistula with in months of the abcess occurring. Once the abcess was under control and I had found a fantastic Gastro's enterologist and a colorectal surgeon I was given another infusion of Infliximab. Unfortunately a week after the injection I became critically unwell, and was found to have had an anaphylactic reaction resulting in septic shock. I ended u
In an induced coma, and was very lucky to make it. Apparently I am some kind of freak, and this had never happened to anyone before. So no more infliximab- the one that is supposed to be the best for fistulising disease.
Oops nearlly forgot the pin hole stricture episode. Ended up having a stricture only a pin hole left open, and an internal fistula joining 2 bowel loops. Was really unwell and ended up having yet another bowel resection. My poor kids have had to endure way too much upheaval from me getting sick. Forgot to mention that while they had me open they noticed my ovaries looked dodgy, so they took both of them out. Think that was the hardest part of my recovery. Immediate menopause at 38 the surgery was actually on my birthday (yay lucky me). Was so not expecting to wake up with those gone.
So now as fate so carefully plans I have developed severe rectal crohns with my butt basically turning into a watering can. I poop between 15-30 times a day, and have some lovely setons placed all around my butt and girls bits. I am on humira now with fortnightly injections, but unfortunately my bum is knackered and has to go.
This is all probably a little dark and defeatist to read, as I spent the weekend in hospital having abscesses drained and setons replaced. I even had a huge abcess drained of my labia. Is there no place this disease won't kick you. Just when I think it can't get anymore embarrassing I get labial abscesses. Any way was told post op that I have to have a permanent colostomy done ASAP as my bum will never heal and I am putting to much strain on my body through all the infection.
I always said I wouldn't let this disease beat me, but I think I have to wave the white flag and admit defeat. I have always told my surgeon that if he needed to do a colostomy to not wake me up, now I have to face my worst fear and try and accept the fact that this is going to happen and I can't put it off. I know all of you out there with colostomys say they have changed you life for the betkter, I still have to convince myself of this. Have spent all weekend crying, can't even look at my husband or kids. Don't know how I am going to do this.
I think I need to reflect on the fact that as a mother of 3 i need to have this operation done. Maybe I need to cut back on my working hours I love my family dearly. I just wish we lived closer to relatives to help my husband out when things go pear shaped..
Medications
Humira fortnightly
Immuran
Loperamide
Flagyl
B12
Nexium
And a mixture of other medication for the carpal tunnel and ruptured disc that plus other health problems that have occurred due to 15 years on steroids.
