Crohns Trials and Trying again
Documenting my Trial and Part 2 battle with Crohns.
Please click the link, follow it, and support me in this never ending battle.
About Me
- Amy Gibbs
- I'm 23, documenting my life with Crohns disease. 6years, 2 surgeries and....?
Crohns Trials and Trying again
This is my NEW extension of this blog.
Crohns Trials and Trying again
Documenting my Trial and Part 2 battle with Crohns.
Please click the link, follow it, and support me in this never ending battle.
Crohns Trials and Trying again
Documenting my Trial and Part 2 battle with Crohns.
Please click the link, follow it, and support me in this never ending battle.
Such a mess.
Since my last post, I've been admitted to hospital...
Surprise surprise...
I was asked to go in for tests and treatment for a 'moderate flare' of Crohns disease.
Purely due to the blood loss I had every day.
I was expecting to be tested to find out for definite if it was the Crohns.
I say this, as my last flare (before surgery) I never experienced blood loss. I was incredibly sick, but never had any blood show.
This FEELS different. My gut instinct (ha) is telling me this isn't just a straight forward thing.
On my last appointment my CRP was at 7.
On admission ( 5 days later) it was at 51.
Huh?!?!!? What on earth?!
I was expecting tests done right then. But oh no.... steroids is the only answer!
Lets fill her with them! Lets leave her on them!
After sitting in hospital for days they sent me home on them.... Having only had 1 blood test done, on admission...
Not impressed.
A week later I saw my consultant.
Colonoscopy is finally booked. When for... who knows?
OPTIONS;
DRUGS TRIAL
INFLIXIMAB
?!?!!?!!
Can you get where this is going??
Firstly, how are they supposed to scope me to see whats going on if they're suppressing whatever it is with steroids, then putting me on one of those drugs?
Logical order should have been...
Blood test
Steroids
Colonoscopy asap
Course of treatment confirmed.
Treatment started.
But no...None of the above have happened apart from the first two.
I just want to live my life! I don't want sympathy or people feeling sorry for me. I want to be healthy and happy.
I was told today that to start on this drugs trial, they have to screen me. For this I need to be poorly.
I need to stop the steroids.
I said, so really, you need me to be as unwell as possible to do this? Yes is the answer.
Why cant anyone understand that all I want is to get on with my life?
Give me a damn drug that will work long term and not screw me up, then leave me be.
My head is so scrambled from these tablets, I'm certain this makes no sense.
I have more to say but today isn't the day.
Surprise surprise...
I was asked to go in for tests and treatment for a 'moderate flare' of Crohns disease.
Purely due to the blood loss I had every day.
I was expecting to be tested to find out for definite if it was the Crohns.
I say this, as my last flare (before surgery) I never experienced blood loss. I was incredibly sick, but never had any blood show.
This FEELS different. My gut instinct (ha) is telling me this isn't just a straight forward thing.
On my last appointment my CRP was at 7.
On admission ( 5 days later) it was at 51.
Huh?!?!!? What on earth?!
I was expecting tests done right then. But oh no.... steroids is the only answer!
Lets fill her with them! Lets leave her on them!
After sitting in hospital for days they sent me home on them.... Having only had 1 blood test done, on admission...
Not impressed.
A week later I saw my consultant.
Colonoscopy is finally booked. When for... who knows?
OPTIONS;
DRUGS TRIAL
INFLIXIMAB
?!?!!?!!
Can you get where this is going??
Firstly, how are they supposed to scope me to see whats going on if they're suppressing whatever it is with steroids, then putting me on one of those drugs?
Logical order should have been...
Blood test
Steroids
Colonoscopy asap
Course of treatment confirmed.
Treatment started.
But no...None of the above have happened apart from the first two.
I just want to live my life! I don't want sympathy or people feeling sorry for me. I want to be healthy and happy.
I was told today that to start on this drugs trial, they have to screen me. For this I need to be poorly.
I need to stop the steroids.
I said, so really, you need me to be as unwell as possible to do this? Yes is the answer.
Why cant anyone understand that all I want is to get on with my life?
Give me a damn drug that will work long term and not screw me up, then leave me be.
My head is so scrambled from these tablets, I'm certain this makes no sense.
I have more to say but today isn't the day.
Desperation & Sadness- DRUGS TRIAL?!?!?
Unfortunately this isn't going to be a happy post, but do I ever write when I'm happy?
Easter 2014 marks 6 years that I've been ill.
In that time I've had 2 surgeries, 1 ileostomy, 2 colonoscopys, 4 MRI's, 12 hospital admissions, 1 infected hematoma, dozens of X-rays, thousands and thousands of tablets, hundreds of injections and infusions... and that's just off the top of my head..
6 years on, after 4 years in remission..
I am now, no longer classed as being in remission.
This makes me sadder than you could ever possibly begin to imagine.
It fills me with fear and dread.
What does my future hold?
The inflammation in my blood is low, up to 10 is in the 'normal' range. But 'normal' peoples inflammation should be 1 or below... mines a 7.
I've had a barium follow through X-ray recently (Google if it your not sure) which showed no narrowing.
So why am I so poorly? Why is there pain? Why is there sickness?... WHY is there blood?
I'm having an MRI in 2 weeks, which scares me. They're the worst.
But I'm now desperate.
I want to live my life. I've had enough of this.
Having met with my Consultant, I've had my 6mp stopped.
I am now on NO crohns medication.
He wants me to wait and see what happens, if it gets unbearable I have Entocort to take..
He called this a 'designer steroid',
I've had trouble with steroids in the past, becoming reliant on them. Turning into the Hulk... ya knoooow, all that jazz.
Then, he wants to put me forward for a Drugs Trial.
This new drug has no name.
Just a number.
After a google search I found it has only been tested on monkeys and a 200 people so far.
Now it's my turn?
I sit here reading through the booklet from the hospital.
It will go on for 4 and a half years. With 2 years monitoring after that.
I will be nearly 30 when it ends.
You CANNOT have children on it. Simply because they don't know what it does.. or how it will effect me.
It states it could lead to, miscarriage, still birth or birth defects.
I think the potential genetic risk of passing Crohns on is enough...
This bothers me. I may only be 23, but at some point before I'm 30, I would like to have a family.
I feel that is my purpose in life, I cant wait to be a Mum... I don't want it now... But I don't want a drug to stop that when I do.
Then there are the risks..
Other than the fact they don't know what it will do to me, period. Or any other Crohns patient for that matter.
They list one possible complication, involving a brain infection, which is fatal.
It also mentions 'death' and 'loss of life' and 'life threatening' all on the same page.
INTENSE.
Do I risk everything I have and want on my absolute obsession with being cured?
What are my other options? Apart from more chemo drugs or TNF-blockers.
Why do I have to rely on drugs to keep me well and alive?
Why me?
Easter 2014 marks 6 years that I've been ill.
In that time I've had 2 surgeries, 1 ileostomy, 2 colonoscopys, 4 MRI's, 12 hospital admissions, 1 infected hematoma, dozens of X-rays, thousands and thousands of tablets, hundreds of injections and infusions... and that's just off the top of my head..
6 years on, after 4 years in remission..
I am now, no longer classed as being in remission.
This makes me sadder than you could ever possibly begin to imagine.
It fills me with fear and dread.
What does my future hold?
The inflammation in my blood is low, up to 10 is in the 'normal' range. But 'normal' peoples inflammation should be 1 or below... mines a 7.
I've had a barium follow through X-ray recently (Google if it your not sure) which showed no narrowing.
So why am I so poorly? Why is there pain? Why is there sickness?... WHY is there blood?
I'm having an MRI in 2 weeks, which scares me. They're the worst.
But I'm now desperate.
I want to live my life. I've had enough of this.
Having met with my Consultant, I've had my 6mp stopped.
I am now on NO crohns medication.
He wants me to wait and see what happens, if it gets unbearable I have Entocort to take..
He called this a 'designer steroid',
I've had trouble with steroids in the past, becoming reliant on them. Turning into the Hulk... ya knoooow, all that jazz.
Then, he wants to put me forward for a Drugs Trial.
This new drug has no name.
Just a number.
After a google search I found it has only been tested on monkeys and a 200 people so far.
Now it's my turn?
I sit here reading through the booklet from the hospital.
It will go on for 4 and a half years. With 2 years monitoring after that.
I will be nearly 30 when it ends.
You CANNOT have children on it. Simply because they don't know what it does.. or how it will effect me.
It states it could lead to, miscarriage, still birth or birth defects.
I think the potential genetic risk of passing Crohns on is enough...
This bothers me. I may only be 23, but at some point before I'm 30, I would like to have a family.
I feel that is my purpose in life, I cant wait to be a Mum... I don't want it now... But I don't want a drug to stop that when I do.
Then there are the risks..
Other than the fact they don't know what it will do to me, period. Or any other Crohns patient for that matter.
They list one possible complication, involving a brain infection, which is fatal.
It also mentions 'death' and 'loss of life' and 'life threatening' all on the same page.
INTENSE.
Do I risk everything I have and want on my absolute obsession with being cured?
What are my other options? Apart from more chemo drugs or TNF-blockers.
Why do I have to rely on drugs to keep me well and alive?
Why me?
Short lived & Living in fear.
Well, that went wrong didn't it!
Since my last post, my 6mp treatments been stopped... well in fact... all treatments been stopped.
I began feeling really weak, all over the Christmas period. Kept myself going, carried on as normal.
I went shopping, wondered around getting last minute Christmas gifts and so on, feeling increasingly unwell as I walked around. Weak, sweaty but cold, almost faint and like I was drunk but stone cold sober.
This carried on and got worse... and worse.
And worse.
I then began to feel unwell in myself, like I was poorly with a bug or something, but had no symptoms other than fever and sweaty but cold.
This went on and on.
New Years Eve. Spent it on the sofa, feeling incredibly sorry for myself, in my Christmas onesie.. as you do.
Midnight came and went and I went up to bed about half 1.
Still awake at 2...
Started sweating and shaking, to the point where the shakes became full body tremors and couldn't speak. Couldn't see, felt faint. Legs swollen like balloons, stiff, heavy with prickly feeling skin so sore clothes hurt.
WHATS HAPPENING TO ME?!
We dialed 111 to get some advice on what to do.. She took my details and talked to me until the tremors took over and I threw the phone at my boyfriend in a very dramatic 'I'm dying' style, panicking and freaking out, shaking... you get the picture... He talks to her for me and she says.... I'm sending an ambulance for a suspected allergic reaction to your medication.
Oh, My, God.
The crew arrived, and they were brilliant, they did an ECG, blood checks etc, checked me over and said I was tachycardic, and they're taking me in.
They came from somewhere that would usually take 45mins or so.. and got to the house in 15minutes, lights, sirens the works. They were incredibly efficient and made me feel safe. But definitely annoyed the neighbours!
I was stopped from taking the 6mp, and told they should work their way out of my system.
Chemotherapy tablets make you feel like absolute crap! Approach 6mp wisely, those of you with Crohns reading this. I thought I'd be ok...
I was back in hospital 2 days ago because of how poorly I've become. Think I'm over the worst of it now...hopefully. Still fighting off the side effects though.
I'm now not on ANY medication for Crohns specifically.And that scares the hell out of me!
I'm awaiting an appointment with my consultant and were going to come up with a 'plan'.
I'm sick and tired of living in fear of my own body and not having any control over it. I wish I knew what it was like to wake up and only worry about the traffic on the way to where I was going...
If I were an animal... I'd have been put down years ago.
Since my last post, my 6mp treatments been stopped... well in fact... all treatments been stopped.
I began feeling really weak, all over the Christmas period. Kept myself going, carried on as normal.
I went shopping, wondered around getting last minute Christmas gifts and so on, feeling increasingly unwell as I walked around. Weak, sweaty but cold, almost faint and like I was drunk but stone cold sober.
This carried on and got worse... and worse.
And worse.
I then began to feel unwell in myself, like I was poorly with a bug or something, but had no symptoms other than fever and sweaty but cold.
This went on and on.
New Years Eve. Spent it on the sofa, feeling incredibly sorry for myself, in my Christmas onesie.. as you do.
Midnight came and went and I went up to bed about half 1.
Still awake at 2...
Started sweating and shaking, to the point where the shakes became full body tremors and couldn't speak. Couldn't see, felt faint. Legs swollen like balloons, stiff, heavy with prickly feeling skin so sore clothes hurt.
WHATS HAPPENING TO ME?!
We dialed 111 to get some advice on what to do.. She took my details and talked to me until the tremors took over and I threw the phone at my boyfriend in a very dramatic 'I'm dying' style, panicking and freaking out, shaking... you get the picture... He talks to her for me and she says.... I'm sending an ambulance for a suspected allergic reaction to your medication.
Oh, My, God.
The crew arrived, and they were brilliant, they did an ECG, blood checks etc, checked me over and said I was tachycardic, and they're taking me in.
They came from somewhere that would usually take 45mins or so.. and got to the house in 15minutes, lights, sirens the works. They were incredibly efficient and made me feel safe. But definitely annoyed the neighbours!
I was stopped from taking the 6mp, and told they should work their way out of my system.
Chemotherapy tablets make you feel like absolute crap! Approach 6mp wisely, those of you with Crohns reading this. I thought I'd be ok...
I was back in hospital 2 days ago because of how poorly I've become. Think I'm over the worst of it now...hopefully. Still fighting off the side effects though.
I'm now not on ANY medication for Crohns specifically.And that scares the hell out of me!
I'm awaiting an appointment with my consultant and were going to come up with a 'plan'.
I'm sick and tired of living in fear of my own body and not having any control over it. I wish I knew what it was like to wake up and only worry about the traffic on the way to where I was going...
If I were an animal... I'd have been put down years ago.
Changing Times
My last post was along while ago, I always wondered why there was never any positive stories online about Crohns and Colitis....Turns out its cause they were out there trying to make the best of it.
That's what I've been doing.
Or trying to do.
I've had a few hiccups, some trips to a&e, and changes in medication.
Facebook friends have seen my rambling status' and probably wondered what on earth could be wrong with me now?
I won't even get started on those so called 'friends' I once thought cared. Second chances aren't worth the hassle!
2013 has been quite the year!
So, here I am now.. wide awake at 1am having survived all day off 3 hours sleep last night, suffering extreme nausea and tiredness like I've never felt before.
I've just started a drug called 6MP (Mercaptopurine)
This is a chemotherapy drug used to treat acute leukemia, but its also beneficial for the treatment and remission prolonging in Crohns and Colitis.
It's similar to Azathioprine which I've been on since diagnosis.
Starting this 6mp has made me feel like rubbish. I'm achey, sore, exhausted. Feeling sick. And it's only been a week.
1 more week and I start the fortnightly blood tests to check for bone marrow toxicity, inflammation and general blood levels etc. I'm not going to go into detail on it, if you wish to know more then feel free to google it!
I'll leave it here for now, I will post more. But this will do for now, bit rusty at this blogging stuff now!
That's what I've been doing.
Or trying to do.
I've had a few hiccups, some trips to a&e, and changes in medication.
Facebook friends have seen my rambling status' and probably wondered what on earth could be wrong with me now?
I won't even get started on those so called 'friends' I once thought cared. Second chances aren't worth the hassle!
2013 has been quite the year!
So, here I am now.. wide awake at 1am having survived all day off 3 hours sleep last night, suffering extreme nausea and tiredness like I've never felt before.
I've just started a drug called 6MP (Mercaptopurine)
This is a chemotherapy drug used to treat acute leukemia, but its also beneficial for the treatment and remission prolonging in Crohns and Colitis.
It's similar to Azathioprine which I've been on since diagnosis.
Starting this 6mp has made me feel like rubbish. I'm achey, sore, exhausted. Feeling sick. And it's only been a week.
1 more week and I start the fortnightly blood tests to check for bone marrow toxicity, inflammation and general blood levels etc. I'm not going to go into detail on it, if you wish to know more then feel free to google it!
I'll leave it here for now, I will post more. But this will do for now, bit rusty at this blogging stuff now!
Fed up!
Ok, so this is going to be a pretty rambling moaning post, I just need to vent how I'm feeling.
I'm sick of being inside, I know I'm only 2 and half weeks post op and I need to be resting and whatever.
But I am the most impatient fidget EVER. I can't just lay about doing nothing.
I've ventured out twice, only to the super market and its left me drained both times.
Why is it doing this!? My body just seems to shut down.
Also I'm turning into a paranoid wreck.
Leg cramps, I freak thinking it's a blood clot.
Stomach pains.. crohns.. which I'll come onto in a minute.
Another thing is my Mums new job. I'm so happy she got it and is enjoying it, cause I know how much she enjoys her job. But in her old job she only worked mornings, in this one its all day. So I'm on my own all day, every day. I don't mind my own company, but I'm getting kinda sick of myself to be honest.
Also my wounds gone all funky, the nurse said it's looking 'snuffy' meaning starting to look a bit infected.
This is what it looked like the day before it went 'snuffy'
We took the dressing off to discover it has been bleeding...
So, you know the drill DONT LOOK DOWN IF YOU DONT LIKE GRAPHIC WOUND PICTURES.
Gross isn't it.. You can imagine my reaction when I saw it..
I also received my discharge letter from my February admission.
It said abdominal pain, bleeding, sickness and not eating or drinking.. diagnosis... Crohns disease flare up.
WHAT?!?!?!!?!?!?!?!!?!?!?!?!?!!?!?!!?!?!?!?!?!!?!?!?
If I had known that 4 weeks ago I would NOT of had a reversal.
I'm kind of feeling a bit miss informed as I thought it was adhesions..
I've had pain all day today that feels awfully familiar.
I'm taking all my medication so it's not that I'm being careless or whatever.
I'm scared and again, paranoid. I'm barely eating cause I'm scared that whatever I eat could trigger it off.
And when I do it it's low residue, strictly low residue like my lunch was waffles and gravy today...
Cause although I had surgery to remove more than they thought....
There, thats me! My MRI scan from last week. Thats all my remaining colon and the bottom of my liver. There are 457 pictures so I just chose this one for this haha!
But yeah although they cut out more than they thought I still have crohns and colitis in there....
So I'm one cheese burger away from pain and puke..
I'm even scared of drinking my morning coffee at the moment!
I just let everything get on top of me. It's a good job I'm on anti depressants so the full weight of how I'm feeling is numbed down a bit cause I dread to think of my mental state if I wasn't on them.
I just feel like strangling whoever asks "are you ok?"
I'm a Gibbs, I'm going to say "Yeah I'm fine"
When I'm really really not fine. Not at all.
I'm scared if I'm honest. Really, really scared.
Never by halves.
The title 'never by halves' is what my Mum said to me, "you never do things by halves do you"
Less than 10minutes of writing my last post I had to go to hospital.
I managed to hold on for my surgeon and went to see him at 6pm.
We initially thought my join was leaking.
But it wasn't that, but I had concerning symptoms and really wasn't well at all.
He tried to touch my tummy around the wound and I yelped in pain.
He couldn't even lightly touch the skin.
He admitted me then and there and walked me upstairs to the ward himself.
A new doctor came called Stavros, first name terms for reason I am about to tell you.
I had so many injections, blood tests and IV's that I have no veins left. None.
This poor doctor took 4 attempts at getting blood out of my arms and hands.
Half success but the blood just dribbled out. They couldn't find my pulse either.
"am I dead" I joked to the nurses.
They had to call an anaesthetist down from theatre to get my bloods done.
Typically being who he was, first attempt was a success, he couldn't see the vein but he could feel it.
"It's a blind shot but worth a go" he said to me.
After that it was waiting for the results which were rushed off to the labs.
I was given pain meds as my temperature was really high. And I'm well known for never having a temperature when I'm ill, I have to be seriously poorly before my temperature goes up!
At about midnight the nurse came in and said I was booked for an emergency CT scan for the morning.
The next morning I waiting and Mr B (Surgeon) arrived back. My bloods were showing up some things that indicated infection and a few other things so a CT was definitely needed.
Down in CT I layed on the table and they tried to get a vein for the dye and drip to help whatever it was show up on the scan better... They looked at my arms and hands and all the bruises and said the "oh you poor dear, oh thats awful, your a pin cushion" They had one attempt and failed.
Stavros was called again. I asked the nurse if it was him who was coming and that my veins really annoyed him the night before. He walked in and rolled his eyes, wiped his forehand and said "hello Miss Gibbs, I've been dreading seeing you again" 40 minutes later he was still trying and failing to get a vein.
In the end they gave up and said they couldn't do the CT without the dye but could do an MRI.
I hate MRI scanners, I'm so claustrophobic. I lay on the table, they placed the boards on me and tied them down. Placed the panic button in my hand and I was pushed into the dome. 45minutes later they pulled me out.
I asked if they could see anything on the scan and they said they could see the parts of intestine I was missing and could see whatever that 'tennis ball sized lump' was.
Mr B and a radiologist analysed the results and decided I had an infected hematoma. Otherwise known as a blood clot.
The one thing I'd been freaking out about and making sure my legs weren't crossed and I kept moving. I got, but in my tummy not my legs. It was in the muscle tissue layer so not deep inside. They put me on some strong antibiotics to help it and if that failed then it was either a big needle into my stomach to drain it or surgery.
Luckily the antibiotics are working so far.
Mr B came this morning and had a look at my wound, asked for a big swap, the nurse said "I swabbed it yesterday" he said "I know, its not for swabbing its a pokey tool" he looked at me and said "Sorry, I'm a surgeon, poking is in my nature"
I grabbed my Mums hand and he poked it. He wanted to make a path for the blood clot infection to get out. He managed to ram this stick half way inside me. So far in it got to the point where it didn't even hurt anymore. It just felt horrible! He said he could feel alllllllll the way down. Gross.
He then gave it a massive squeeze, which hurt but shows the antibiotics are working as he couldn't even lightly touch the skin the other day.
I'm home now, and feeling alright, it's still very painful. I'm annoyed that this is going to hold me back from flying for a little while. But as soon as I get the all clear I'm on that plane to Ireland!
Less than 10minutes of writing my last post I had to go to hospital.
I managed to hold on for my surgeon and went to see him at 6pm.
We initially thought my join was leaking.
But it wasn't that, but I had concerning symptoms and really wasn't well at all.
He tried to touch my tummy around the wound and I yelped in pain.
He couldn't even lightly touch the skin.
He admitted me then and there and walked me upstairs to the ward himself.
A new doctor came called Stavros, first name terms for reason I am about to tell you.
I had so many injections, blood tests and IV's that I have no veins left. None.
This poor doctor took 4 attempts at getting blood out of my arms and hands.
Half success but the blood just dribbled out. They couldn't find my pulse either.
"am I dead" I joked to the nurses.
They had to call an anaesthetist down from theatre to get my bloods done.
Typically being who he was, first attempt was a success, he couldn't see the vein but he could feel it.
"It's a blind shot but worth a go" he said to me.
After that it was waiting for the results which were rushed off to the labs.
I was given pain meds as my temperature was really high. And I'm well known for never having a temperature when I'm ill, I have to be seriously poorly before my temperature goes up!
At about midnight the nurse came in and said I was booked for an emergency CT scan for the morning.
The next morning I waiting and Mr B (Surgeon) arrived back. My bloods were showing up some things that indicated infection and a few other things so a CT was definitely needed.
Down in CT I layed on the table and they tried to get a vein for the dye and drip to help whatever it was show up on the scan better... They looked at my arms and hands and all the bruises and said the "oh you poor dear, oh thats awful, your a pin cushion" They had one attempt and failed.
Stavros was called again. I asked the nurse if it was him who was coming and that my veins really annoyed him the night before. He walked in and rolled his eyes, wiped his forehand and said "hello Miss Gibbs, I've been dreading seeing you again" 40 minutes later he was still trying and failing to get a vein.
In the end they gave up and said they couldn't do the CT without the dye but could do an MRI.
I hate MRI scanners, I'm so claustrophobic. I lay on the table, they placed the boards on me and tied them down. Placed the panic button in my hand and I was pushed into the dome. 45minutes later they pulled me out.
I asked if they could see anything on the scan and they said they could see the parts of intestine I was missing and could see whatever that 'tennis ball sized lump' was.
Mr B and a radiologist analysed the results and decided I had an infected hematoma. Otherwise known as a blood clot.
The one thing I'd been freaking out about and making sure my legs weren't crossed and I kept moving. I got, but in my tummy not my legs. It was in the muscle tissue layer so not deep inside. They put me on some strong antibiotics to help it and if that failed then it was either a big needle into my stomach to drain it or surgery.
Luckily the antibiotics are working so far.
Mr B came this morning and had a look at my wound, asked for a big swap, the nurse said "I swabbed it yesterday" he said "I know, its not for swabbing its a pokey tool" he looked at me and said "Sorry, I'm a surgeon, poking is in my nature"
I grabbed my Mums hand and he poked it. He wanted to make a path for the blood clot infection to get out. He managed to ram this stick half way inside me. So far in it got to the point where it didn't even hurt anymore. It just felt horrible! He said he could feel alllllllll the way down. Gross.
He then gave it a massive squeeze, which hurt but shows the antibiotics are working as he couldn't even lightly touch the skin the other day.
I'm home now, and feeling alright, it's still very painful. I'm annoyed that this is going to hold me back from flying for a little while. But as soon as I get the all clear I'm on that plane to Ireland!
Ileostomy Reversal.
Hello everyone. I'm now 1 week post surgery! Currently feeling like my insides are gonna spew out my belly button so this may be a brief post! I made notes on my phone through out it but some of it makes no sense and isn't possible to read by any human being. Wonders of morphine I suppose! Here goes anyway!
Surgery day. 6th September.
I arrived at the hospital at about 12 midday. I was feeling pretty chilled and hadn't cried since saying goodbye to my boyfriend the night before. Held it together pretty well to be honest! As I was back on my old ward I knew everyone there and everyone knew me! I was greeted bye big smiles and "welcome back!" We had a long wait then. So me being me had a nose through my surgical file!
Here's my file! Pretty impressive considering this is JUST from surgeries haha! This isn't even my NHS file this is my private medical file haha!
This was my room for the week! We'd just arrived so its tidy at this point haha!
And my view, this is all I saw.. apart from the bottom of a sick bowl..
I hadn't eaten or drank for over 12 hours and my parents decided to eat lunch in front of me. Fatties.
And although my boyfriend lives in Ireland and is poorly himself he still came over the 2 days before surgery and looked after me. He came with me to hospital in the form of this photo :) Kept me smiling.
Next we were told I wouldn't be going theatre until about 4pm. So Mr B (The surgeon) and the anaesthetist came and talked to be. Then I settled down for a few hours to have a nap. Then all of a sudden, about 20minutes later and nurse and member of the surgical team came in and said LETS GO! Sudden rush and panic I got changed and lightening speed, gave my Dad a hug and kiss and Mum and I headed down with them. I was so nervous but it was all so rushed I hadn't even cried yet! We went into the room, and they attached all the wires etc, they then inserted the IV, put in some really weird stuff that made me feel GREAT! (by this point I was crying my eyes out.. as was Mum.. its always the worst bit) They then got the white syringe and I was off with the fairys..
I woke up comfortable, not even a sore throat from the breathing tube! I looked across at the lady in the bed next to me and we swapped sympathetic "ouch" looks. After a while they took me back upstairs. By this time I'd had so much morphine I don't really remember much (good job I made notes ;))
This is my first IV where everything was going in as I couldn't drink anything just yet!
I do apologise for this picture, I have no memory of taking this... this is quite clearly what I look like on morphine!
And this is my poor tummy! Bye bye bag!! It's very bloody and gross but this was all within an hour of coming up from recovery!
I was also desperate for a wee! Bursting haha! So I was up and about within the hour but for some reason I couldn't wee! 10 hours later... I was still desperate for a wee unable to go! So the doctors and nurses came and put in a catheter.. an unpleasant experience consisting of things being shoved where things shouldn't be and being poked with syringes in places you shouldn't but after all that it was fine!
Day 2
I haven't much memory of this day, nothing much really happened other than pain, pain a bit more pain, feeling sick.. pain.. oh and more pain! I was on morphine, tramadol, paracetamol, buscapane and metoclopromide which is anti sickness used for chemotherapy patients to empty the stomach so there is nothing to throw up.
Day 3
I have one word for you.. Vomit.
I threw up pretty much from the moment I woke up.. to the half hour before I fell asleep. No exaggeration. I had at least 3 nurses, my Mum and then my Dad hold my hair back from me throwing up all over myself. And let me tell you when you have a hole in your stomach, throwing up is the most painful experience ever! Trying to stay conscious, aim in the bowl and put enough pressure on your tummy to relieve it of the stress is hard work! I was so exhausted! By the end of that day I had tried every single anti sickness the hospital could prescribe. A massive dose of morphine and metoclopromide knocked me out fully!
Had my wound dressing changed for the first time today as well.
A..G..O..N..Y!
They have to pack it, as it's open to encourage the wound to heal from the inside out.
Very unpleasant but its gonna be a daily job to I had to just get in with it and I felt too sick to argue.
Day 4
Today my bowels woke up! WOO! Means that I was allowed home! Although I wasn't cause of all the other stuff going on. They were gurgling like I've never heard gurgles before. At times it made me jump cause I'm so not used to it! Very weird! I also had to have my IV changed I was still so sick and nauseas all the time. And the cramps from my stomach waking up were the most painful thing I've ever experienced. It got so bad that I shouted that I couldn't do it anymore. And I honestly at that point wanted to give up. I felt so hopeless and in so much pain! I couldn't cry properly cause it hurt so badly! In the end I had the doctor and nurse hooking me up to oxygen, filling me with bottles and syringes. On this day alone, I had 23 needles poked into me for different reasons.
Day 5
I was up and down to the bathroom all night long. Having not been to the bathroom as normal people do for a year and a half it was a horrible experience. And I had the sorest bum ever! I just wasn't used to it. It was alien to me! I hadn't eaten anything since the morning of day 3 and still had no appetite so there was nothing for my stomach to chew on so to speak, so it was just chewing me basically and it hurt! I was more mobile today! I'd had a shower the night before so I was feeling more human, and starting to be eager to go home! Still feeling so so sick though!
Day 6
Mr B said that if I had eaten, drank enough and been to the bathroom walked around enough, I could go home. So I stuffed my face with a panini, a doughnut and soup. A litre of water. 3 laps of the ward. 4 trips to the bathroom and they said I could go! Over the moon!! I felt awful still but you always feel better at home! The car journey home was awful but not as bad as I thought!
First day for 2 years wearing a normal length Tshirt! Yay!!!
WARNING: DO NOT SCROLL ANY FURTHER IF YOU ARE SENSITIVE TO CUTS AND BLOOD.
This is what my wound looks like 1 week post surgery. This is it unpacked and cleaned.
And this is it on Tuesday 15th September. The skin around as some of you may recognise is starting to look like it did when it was bad around my ileostomy. It seems to have come back and is driving me mental its so sore! I also have a tennis ball size swelling at the top of the wound. So if you are getting annoyed with my moaning of pain on Facebook. Put this in your pipe and smoke it!
Finally I would just like to say thank you to my family, Gibbs, Gaunt, Myers' and Nauls. I love you all dearly, thank you so much for being so supportive! Also a big thank you to my boyfriend who's had to put up with my moaning about this and morphine messages at ungodly hours. You've been so wonderfully supportive through all of this. I hope I can be as supportive to you. xxxxxxxxxxxxxxxxxxxxxxxxxxxx
Freaking OUT.
September 6th is getting closer. I am so scared!
I'm happy how I am. I can live with an ileo quite happily.
I can't go back to how I was. I don't think I could physically handle it.
I was housebound for goodness sake.
I don't really have a choice though, theatre is booked and there is no turning back.
I just want it over with now so I can move forwards.
I've spent the last year and a bit freaking out about this and it's only 3 weeks away.
3 WEEKS!
I've not really managed to voice to anyone how I feel. My family just think I'm being snappy and a bit grumpy, like, whats new?
I can't stand the unknown!
In my first surgery they removed more than they planned due to how bad it was in there.
So the results of this reversal are a complete mystery.
I'm also getting a lot of sickness at the moment, anything I eat, drink makes me feel sick, I've not actually been sick, the ileo seems to take care of that. But I feel so sick it's hard to speak sometimes. Theres a pain on the left upper side of my abdomen just under my ribs, and the pain sometimes goes through to my back. I'm losing weight cause I can't eat (I'm pretty pleased with this fact but not how I'm losing it). I just don't know who to tell or talk to about it!
I'm going to the doctors tomorrow to see if they can help if not I will have to speak to my consultant.
I don't give a damn what they do as long as I don't have to feel like this any longer.
I feel like I'm standing on thin ice thats about to break underneath me.
And I am honestly, so, so scared.
I'm happy how I am. I can live with an ileo quite happily.
I can't go back to how I was. I don't think I could physically handle it.
I was housebound for goodness sake.
I don't really have a choice though, theatre is booked and there is no turning back.
I just want it over with now so I can move forwards.
I've spent the last year and a bit freaking out about this and it's only 3 weeks away.
3 WEEKS!
I've not really managed to voice to anyone how I feel. My family just think I'm being snappy and a bit grumpy, like, whats new?
I can't stand the unknown!
In my first surgery they removed more than they planned due to how bad it was in there.
So the results of this reversal are a complete mystery.
I'm also getting a lot of sickness at the moment, anything I eat, drink makes me feel sick, I've not actually been sick, the ileo seems to take care of that. But I feel so sick it's hard to speak sometimes. Theres a pain on the left upper side of my abdomen just under my ribs, and the pain sometimes goes through to my back. I'm losing weight cause I can't eat (I'm pretty pleased with this fact but not how I'm losing it). I just don't know who to tell or talk to about it!
I'm going to the doctors tomorrow to see if they can help if not I will have to speak to my consultant.
I don't give a damn what they do as long as I don't have to feel like this any longer.
I feel like I'm standing on thin ice thats about to break underneath me.
And I am honestly, so, so scared.
Eye Balls!
If you have me on facebook, or twitter you will already know that I have some massive horrible painful blister on my eye ball!
I have no idea why it's there. Or how its even possible!?
But I googled it and it does happen and its quite common!
Who knew?!
I also seem to get a lot of stys in my eyes. I get through a lot of mascara cause of this as don't want to spread it and it's getting expensive!
I also seem to get scab type sore bits and little swells at the lash line that when I knock off the scab accidentally can bleed!
I've also developed a lazy left eye when I get tired! So now have glasses for when I feel a bit cross eyed at night! Haha!
All due to the dreaded PREDNISOLONE!
I'm pretty sure for the crohnies reading this that word sends fear through there whole bodies.
For those who don't know its a steroid used to kick crohns, colitis etc in the butt! (no pun intended)
I've been on it many many times and at strong doses!
I've had it intravenously 4 times now, and been on tablet form for over a year.
It turns me into an absolute MONSTER.
The girls from college will be well aware of this.
I was angry, rude, violent, hungry and on the verge of strangling anyone, and anything!
After being on it for so long. Even though I've not been on it for a year now (WOO) I'm still seeing the effects.
It's RUINED my body!
Crohns stunted my growth, I had no hips, or a waist etc. People thought I was anorexic!
Well, the pred sorted that out! It turned me into a right oinker! I've lost it all now though even though I still see myself as fat. But even when I was skinny and ill I thought that I was fat! I used to use laxatives to try and make myself thinner... and smoked instead of food. Bad I know, I learn't the hard way!
Even though the exterior Amy looks normal and healthy now. The interior is very much still broken. Just ask my bones. They're rubbish! I'm currently having physiotherapy on my knees. And my hands and thumbs get very painful!
It's good to know that there are tonnes of other crohnies out there just like me!
I'll stop now with all my brokenness cause if I continue this could be an extremely long post!
Thanks all for reading my witterings! :)
I have no idea why it's there. Or how its even possible!?
But I googled it and it does happen and its quite common!
Who knew?!
I also seem to get a lot of stys in my eyes. I get through a lot of mascara cause of this as don't want to spread it and it's getting expensive!
I also seem to get scab type sore bits and little swells at the lash line that when I knock off the scab accidentally can bleed!
I've also developed a lazy left eye when I get tired! So now have glasses for when I feel a bit cross eyed at night! Haha!
All due to the dreaded PREDNISOLONE!
I'm pretty sure for the crohnies reading this that word sends fear through there whole bodies.
For those who don't know its a steroid used to kick crohns, colitis etc in the butt! (no pun intended)
I've been on it many many times and at strong doses!
I've had it intravenously 4 times now, and been on tablet form for over a year.
It turns me into an absolute MONSTER.
The girls from college will be well aware of this.
I was angry, rude, violent, hungry and on the verge of strangling anyone, and anything!
After being on it for so long. Even though I've not been on it for a year now (WOO) I'm still seeing the effects.
It's RUINED my body!
Crohns stunted my growth, I had no hips, or a waist etc. People thought I was anorexic!
Well, the pred sorted that out! It turned me into a right oinker! I've lost it all now though even though I still see myself as fat. But even when I was skinny and ill I thought that I was fat! I used to use laxatives to try and make myself thinner... and smoked instead of food. Bad I know, I learn't the hard way!
Even though the exterior Amy looks normal and healthy now. The interior is very much still broken. Just ask my bones. They're rubbish! I'm currently having physiotherapy on my knees. And my hands and thumbs get very painful!
It's good to know that there are tonnes of other crohnies out there just like me!
I'll stop now with all my brokenness cause if I continue this could be an extremely long post!
Thanks all for reading my witterings! :)
Do you believe in guardian angels?
I know it sound's silly.
Who actually believes in things like that?
I certainly didn't!
But, then everything changed and I now do!
4 years ago, my wonderful Grandpa passed away, very suddenly.
I hadn't done my GCSE's and hadn't been diagnosed with crohns.
He was the person who taught me to paint, to be an artist!
I went on to be an art student at college and did 3 years of it before I had to leave due to the big crohns flare.
In the months after he passed. Me and my Dad typically bickered like children arguing constantly.
He's managed to produce a daughter who is as equally as stubborn as he is! Anyway, we were at my Grandmas and I picked up a new book off her book shelf about old phrases and there meanings!
I then dropped the book on the floor. Grandma hadn't even opened it yet just shoved it onto the shelf! So yes, I dropped it and it fell open onto the page with Quarrel - a disagreement or argument. With a perfect little white feather tucked inside it. We all thought this was very odd. Kind of comforting!
After that, we then began to find feathers everywhere! In the kitchen, in bedrooms. There was no way they could have got there.
When I was at my most rebellious, My Mum had a dream that Grandpa told her I was misbehaving and doing things that I shouldn't be! Which I was! And was incredibly freaked out when she told me that! I felt like I was being watched and that I needed to be more sensible!
I can't quite remember now if it was my Mum or Dad who dreamt it but my Grandma was going in for surgery and they dreamed my Grandpa said "she's forgotten her slippers" and she had. She had forgotten them.
I was struggling at college with a load of work. I came in after a crohns flare up having been off to find a beautifully white feather in my pencil case.. which had been in my locker. No one had a key but me. And I had it with me all the time! I asked people if they put it there to wind me up but no one had a clue!
Leading up to my surgery I found feathers everywhere too. All of them perfect, and white.
Last weekend me and my Dad went to my Grandma's to check on her pond as she was visiting my Auntie. And there were feathers literally ALL over the garden. All around the pond. Now, anyone who knew my grandpa knew he loved his garden, and his pond! The pond was blocked up at the filter with only a little water left in it! It was like he was telling us MY POND, MY POND!
And the most comforting yet. When I went to see the surgeon on Tuesday. As I was walking in, I looked up. And saw a white feather floating down above my head! Mum caught it for me and I kept it in my bag! It's now in my room in a little box.
It's like he's watching over us, making sure we are all okay. Leaving little feathers to show he's still around!
Once is nice, twice is coincidence and more than ten times... well.. you tell me!
Who actually believes in things like that?
I certainly didn't!
But, then everything changed and I now do!
4 years ago, my wonderful Grandpa passed away, very suddenly.
I hadn't done my GCSE's and hadn't been diagnosed with crohns.
He was the person who taught me to paint, to be an artist!
I went on to be an art student at college and did 3 years of it before I had to leave due to the big crohns flare.
In the months after he passed. Me and my Dad typically bickered like children arguing constantly.
He's managed to produce a daughter who is as equally as stubborn as he is! Anyway, we were at my Grandmas and I picked up a new book off her book shelf about old phrases and there meanings!
I then dropped the book on the floor. Grandma hadn't even opened it yet just shoved it onto the shelf! So yes, I dropped it and it fell open onto the page with Quarrel - a disagreement or argument. With a perfect little white feather tucked inside it. We all thought this was very odd. Kind of comforting!
After that, we then began to find feathers everywhere! In the kitchen, in bedrooms. There was no way they could have got there.
When I was at my most rebellious, My Mum had a dream that Grandpa told her I was misbehaving and doing things that I shouldn't be! Which I was! And was incredibly freaked out when she told me that! I felt like I was being watched and that I needed to be more sensible!
I can't quite remember now if it was my Mum or Dad who dreamt it but my Grandma was going in for surgery and they dreamed my Grandpa said "she's forgotten her slippers" and she had. She had forgotten them.
I was struggling at college with a load of work. I came in after a crohns flare up having been off to find a beautifully white feather in my pencil case.. which had been in my locker. No one had a key but me. And I had it with me all the time! I asked people if they put it there to wind me up but no one had a clue!
Leading up to my surgery I found feathers everywhere too. All of them perfect, and white.
Last weekend me and my Dad went to my Grandma's to check on her pond as she was visiting my Auntie. And there were feathers literally ALL over the garden. All around the pond. Now, anyone who knew my grandpa knew he loved his garden, and his pond! The pond was blocked up at the filter with only a little water left in it! It was like he was telling us MY POND, MY POND!
And the most comforting yet. When I went to see the surgeon on Tuesday. As I was walking in, I looked up. And saw a white feather floating down above my head! Mum caught it for me and I kept it in my bag! It's now in my room in a little box.
It's like he's watching over us, making sure we are all okay. Leaving little feathers to show he's still around!
Once is nice, twice is coincidence and more than ten times... well.. you tell me!
Hmmm.
Feeling a bit lost at the moment! Feel that now my surgery date has been confirmed as September 6th this year. My life has kinda paused again. Well, its not really been on play at all for at least 2 years...
I so badly want to move on from all this. I love my family to pieces but they're my constant company now as all my 'friends' were crap and ditched me when I was at my sickest.
I've kinda lost faith in people and myself. I don't feel like me anymore.
The old me had bright red hair. Was incredibly over confident, loud and mouthy. Wanted to be centre of attention all the time. And would dance in a room and wouldn't care if people watched.
The new me, finds the thought of that so scary.
This was me...
Yep, that was me! Crohns skinny too.. But I felt to confident with red hair!
I now have my natural hair colour as all the dyed hair grew out!
So thats one part of me gone!
I'm thinking of putting a blonde coloured bit in my hair. In attempt to 'me' myself again.
As my hair has natural blonde highlights I wanna keep it natural-ish.
I don't really understand the point in this post, and it's probably wasting your time reading it. But it helps me to rant it all out. This is effectively my diary so prepare for rubbish like this!
I have another more interesting post for later! Need to think more into it though :)
I'll give y'all the title.
Do you believe in guardian angels?
:)
Surgery Appointment.
So, I've just got back from seeing Mr B. He's so lovely! Honestly trust him with my life.. which is a good job considering my life has been is in his hands HA.
Was a quivering mess when we got out. Legs like jelly and head spinning.
Held it together though through the meeting!
Heres what was said! Hope it makes sense, I'm still pretty numb about it all.
1. What will the wound be like?
The wound I'm going to have is an open one. As the stoma is a hole in my abdominal wall you cant close a circle into a straight line, he said this would mean the wound would be 4 times the length of stoma and create too much scar tissue and damage. So they're going to do a draw string type thing around the hole after they have sorted the intestine out. Then leave it open and wick it, wicking is different to packing as they won't ram god knows how much stuff into me. Just enough to catch all the yucky stuff! It's also a lot safer, if the wound got infected it would be easier to go back in and do whatever they needed too!
2. How will it be done?
It will be done simply through the hole where the stoma is sited. Very rarely they need to open up over previous scars to do it properly but as I'm 1 year post surgery everything should be less stuck together.
3. How long is the surgery?
The surgery takes about 45minutes to an hour. And it will be a minimum of a 5 day/night stay in the hospital if all goes well.
4. Pain relief?
Due to the fact that my stomach muscle wall has been apart for a year, it will feel like I've been kicked by a horse, plus the wound pain etc. So I'm going to have my beloved PCA back for morphine. With lots of antihistamines for the morphine itch!
5. What about tubes and lines?
There will be no catheter into the bladder. I forgot to ask about the neck line, but hopefully not cause this was horrible! They're not sure about an NG tube (this goes through the nose and down to the stomach) at this time, hopefully not though.
6. Will I need a special diet?
As currently I'm on a really strict diet. Hearing that after I've healed I can eat whatever I like is brilliant! Bring on the steak and jacket potatoes and salads!
7. How long before bowels wake up?
We say wake up as whenever the bowels are handled they paralyse themselves. Stop working completely. This is the biggest issue for me, I'm so scared! He said the first time will probably happen and I won't have a chance to get to the bathroom or do anything about it. This is 100% completely normal and in the vast majority of cases, expected. Fingers crossed that doesn't happen to me.
8. How long will it take to settle down?
We don't know. Simple answer. We don't know because everyone is different and they also removed more of my bowel than expected. Hopefully it won't take any longer than 6 months.
9. Back up plan?
My back up plan is a permanent ileostomy. If all else fails! This however will NOT cure me. Crohns is incurable. Within a year after surgery there will be visible signs of crohns at the rejoin again. And they didn't manage to remove all of mine in the first place so more surgery is likely in the future.
10. Will I have sickness?
Yes, from day 2-4 post surgery it's expected. It should settle down though and there are medications to help sickness. I hate being sick! I was always sick when my crohns was bad! The amount of times I've puked in public.. ha.
So, that's basically it, my list of questions I took and the answers.
Surgery date is September 6th 2011.
Was a quivering mess when we got out. Legs like jelly and head spinning.
Held it together though through the meeting!
Heres what was said! Hope it makes sense, I'm still pretty numb about it all.
1. What will the wound be like?
The wound I'm going to have is an open one. As the stoma is a hole in my abdominal wall you cant close a circle into a straight line, he said this would mean the wound would be 4 times the length of stoma and create too much scar tissue and damage. So they're going to do a draw string type thing around the hole after they have sorted the intestine out. Then leave it open and wick it, wicking is different to packing as they won't ram god knows how much stuff into me. Just enough to catch all the yucky stuff! It's also a lot safer, if the wound got infected it would be easier to go back in and do whatever they needed too!
2. How will it be done?
It will be done simply through the hole where the stoma is sited. Very rarely they need to open up over previous scars to do it properly but as I'm 1 year post surgery everything should be less stuck together.
3. How long is the surgery?
The surgery takes about 45minutes to an hour. And it will be a minimum of a 5 day/night stay in the hospital if all goes well.
4. Pain relief?
Due to the fact that my stomach muscle wall has been apart for a year, it will feel like I've been kicked by a horse, plus the wound pain etc. So I'm going to have my beloved PCA back for morphine. With lots of antihistamines for the morphine itch!
5. What about tubes and lines?
There will be no catheter into the bladder. I forgot to ask about the neck line, but hopefully not cause this was horrible! They're not sure about an NG tube (this goes through the nose and down to the stomach) at this time, hopefully not though.
6. Will I need a special diet?
As currently I'm on a really strict diet. Hearing that after I've healed I can eat whatever I like is brilliant! Bring on the steak and jacket potatoes and salads!
7. How long before bowels wake up?
We say wake up as whenever the bowels are handled they paralyse themselves. Stop working completely. This is the biggest issue for me, I'm so scared! He said the first time will probably happen and I won't have a chance to get to the bathroom or do anything about it. This is 100% completely normal and in the vast majority of cases, expected. Fingers crossed that doesn't happen to me.
8. How long will it take to settle down?
We don't know. Simple answer. We don't know because everyone is different and they also removed more of my bowel than expected. Hopefully it won't take any longer than 6 months.
9. Back up plan?
My back up plan is a permanent ileostomy. If all else fails! This however will NOT cure me. Crohns is incurable. Within a year after surgery there will be visible signs of crohns at the rejoin again. And they didn't manage to remove all of mine in the first place so more surgery is likely in the future.
10. Will I have sickness?
Yes, from day 2-4 post surgery it's expected. It should settle down though and there are medications to help sickness. I hate being sick! I was always sick when my crohns was bad! The amount of times I've puked in public.. ha.
So, that's basically it, my list of questions I took and the answers.
Surgery date is September 6th 2011.
Surgical Appointment, Reversal.
So, I'm getting ready to go see my surgeon. I'm starting this now as I doubt I'll be able to do much but write what has been said in the appointment.
Private medical is honestly the best thing EVER. After spending nearly a week on the surgical ward in Feb. Having an op and staying there is a big fat, ahhhh hell no!
I'm kinda looking forward to seeing all my nurses again in September! They're so lovely over there!
And also with a private appointment today, I can take as long as I want to have all my questions answering. Instead of the NHS appointment where there is 20 other people waiting outside each given 10minutes to get out what they want to say!
So anyway, I have my dress out ready, my A4 page of questions written. So hold tight! Cause there is one hell of a ramble on it's way!
Private medical is honestly the best thing EVER. After spending nearly a week on the surgical ward in Feb. Having an op and staying there is a big fat, ahhhh hell no!
I'm kinda looking forward to seeing all my nurses again in September! They're so lovely over there!
And also with a private appointment today, I can take as long as I want to have all my questions answering. Instead of the NHS appointment where there is 20 other people waiting outside each given 10minutes to get out what they want to say!
So anyway, I have my dress out ready, my A4 page of questions written. So hold tight! Cause there is one hell of a ramble on it's way!
Somethings just can't be cured.
I'm pretty much time wasting here, as in, I should be writing a psychology essay but thought this sounds more fun :)
Firstly, google image crohns.. do it. Be brave ;).
Now you can see exactly what goes on internally.
Gonna go onto pictures and stuff, as it's easier to explain!
As many of my friends with crohn's and ileostomies know. You rely on an awful lot of equipment and tablet to help you, even to just get out of bed some days!
These are my ileostomy supplies...
I've literally had to reorganise my room and by new furniture to accommodate for all this.
It's crazy.
There's also a crazy amount of tablets to take. These are just the ones I take currently.. and can I just stress my crohns is technically in remission. There have been times when theres been self administered injections and tonnes of other pills and potions.
I've been having a lot of skin problems around the ileostomy, as I think I've mentioned previously.
I saw a dermatologist, who thinks it's severe contact dermatitis. I'm on a very strong steroid cream at the moment, and then I'll go on to be patch tested if needed.
WARNING: The following pictures are a bit graphic.
Before seeing the dermatologist, I was in agony with my skin, it was bleeding, oozing and just being generally gross! It then got infected and I got put on antibiotics, then went and saw dermatologist and started the steroid cream.
The next 3 pictures are the before steroid treatment, obviously.
Horrid eh? The last picture is how I had to dress it to be able to wear clothes!
This is the area now..
Beautifully soft NORMAL skin! Woopieee! I stop the steroids today, and then leave it 2 days before going back to see the dermatologist to decide what to do next! A more long term solution hopefully!
I also got my appointment to see my surgeon to go on for reversal. So I can assure that there will be many more, blogs to come. As this is likely to be a very, very eventful year!
One year post surgery!
It's so hard to get my head around how I felt this time last year.. its 11am so I was just admitted into hospital. Meeting all those wonderful nurses who cared for me so well.
Absolutely bricking it!
So much so that I needed a pre med to chill me out! Longest morning OF MY LIFE.
But at 2.20pm, they put a line in and I was off to sleep.
Woke up and my whole world was turned upside down. I thought I'd got my head around having an ileostomy. But nothing could have prepared me for what I was going to go through next.
The healing process of having a hole in your abdominal wall, and having an inside out piece of intestine stitched to your stomach is something I will never forget. The stitches ripped on one side, leaving a sore bleeding hole. Took me several days to be able to look at it. Thank goodness for stoma nurses! And my Mum and Dad!
I was in such agony, I slept on the sofa for the first month with the dog sleeping in with me for company.
And when I lay down on my back now, theres a dip on the right hand side of the ileostomy.. where theres a mass of missing small and large intestine. Very odd!
Anyway, the healing aside. I had another battle on my hands.
That of depression.
I was in such a hole. I honestly didnt want to be here anymore. But I suppose your reading this thinking, surely you had all your friends support? WRONG. not one person supported me. I was in this on my own. Had a few texts of 'how are you?' to which I replied 'fine thanks' my robotic automatic answer.
I wasn't and still am not fine.
I was put on antidepressants. They're bloody good! Few months ago I went for a colonoscopy. Last time I was hysterical but this time I sat on the bed chatting to the nurses and my consultant like we were about to have a party...ofcourse I was gonna have a 10foot camera shoved up my butt but thats a whole other story!
I've gotten into such a mess with this depression that I find it really hard to see people, trust people and actually leave the house most days. Anxiety is a prison. And I feel like I have a life sentence!
But I'm working on it!
Yesterday I went to see a dermatologist about the skin around my ileostomy. I'm being put on some steroid cream for 7 days, then going to go back to see him on day 9 to see if I've relapsed. Then well go on from there. Patch testing etc!
Also found out I have another genetic condition my future children will inherit. :(
And a few other issues which I'm not going into right now!
But either way...
Happy 1st Birthday Bruce and new body.
Surgery for reversal in September.
Absolutely bricking it!
So much so that I needed a pre med to chill me out! Longest morning OF MY LIFE.
But at 2.20pm, they put a line in and I was off to sleep.
Woke up and my whole world was turned upside down. I thought I'd got my head around having an ileostomy. But nothing could have prepared me for what I was going to go through next.
The healing process of having a hole in your abdominal wall, and having an inside out piece of intestine stitched to your stomach is something I will never forget. The stitches ripped on one side, leaving a sore bleeding hole. Took me several days to be able to look at it. Thank goodness for stoma nurses! And my Mum and Dad!
I was in such agony, I slept on the sofa for the first month with the dog sleeping in with me for company.
And when I lay down on my back now, theres a dip on the right hand side of the ileostomy.. where theres a mass of missing small and large intestine. Very odd!
Anyway, the healing aside. I had another battle on my hands.
That of depression.
I was in such a hole. I honestly didnt want to be here anymore. But I suppose your reading this thinking, surely you had all your friends support? WRONG. not one person supported me. I was in this on my own. Had a few texts of 'how are you?' to which I replied 'fine thanks' my robotic automatic answer.
I wasn't and still am not fine.
I was put on antidepressants. They're bloody good! Few months ago I went for a colonoscopy. Last time I was hysterical but this time I sat on the bed chatting to the nurses and my consultant like we were about to have a party...ofcourse I was gonna have a 10foot camera shoved up my butt but thats a whole other story!
I've gotten into such a mess with this depression that I find it really hard to see people, trust people and actually leave the house most days. Anxiety is a prison. And I feel like I have a life sentence!
But I'm working on it!
Yesterday I went to see a dermatologist about the skin around my ileostomy. I'm being put on some steroid cream for 7 days, then going to go back to see him on day 9 to see if I've relapsed. Then well go on from there. Patch testing etc!
Also found out I have another genetic condition my future children will inherit. :(
And a few other issues which I'm not going into right now!
But either way...
Happy 1st Birthday Bruce and new body.
Surgery for reversal in September.
Right then,
Right then, as I want to start showing people this blog, I think its a good idea that I show you exactly what I look like now, and what surgery has left me with..
It's an awful drawing I know, but it gets the point across. Obviously theres way more small intestine than what I've drawn but I couldn't fit it all in.
Here's me in hospital before my surgery. You can clearly see how swollen I am. I look pregnant.
Due to the crohns I also have a skin condition called dermatographic urticaria, it basically means I react to pressure on the skin and temperature change, leaving me with pretty impressive hives.
Heres one my cousin drew on my back..
Pretty isn't it! haha! Doesn't hurt me but it itches so bad if I forget my medication!
Right, heres two of my surgery wounds, I had 8 all together. I was very lucky to have two highly skilled surgeons operating on me via key hole.
Now, heres the mother wound...
I wasn't stitched or stapled, I was glued.. yes... glued! Amazing!
Now, this is the ileostomy which saved my life. It's a hard thing to understand and get your head around and many people would think URGH. But let me tell you it's a lot more hygienic. And has become a part of me. And even when it has been reversed I will forever be an ileostomist. And if the reversal goes bad, I'll happily welcome it back with open arms.
Not so bad? This baby saved me.
Crohns, Bruce and I
So, It's about time I got around to posting since I posted my 'story'. I figured that having a blog would help me cope with all this. Cause believe it or not, it sucks!
It's coming up too Easter, which I dread annually as I associate it with being hospitalised with crohns!
Easter 2008 I was diagnosed. Easter 2009 I was in a HUGE flare and on steroids. Easter 2010 hospitalised leading to surgery! And fingers crossed Easter 2011 will be happy and at home, even though I have tonsillitis at the moment and on antibiotics hopefully thats all that will happen haha.
I find antibiotics hard, as without them I'm obviously ill, and on them I'm ill as it flares my stomach and makes my ileostomy angry! Which makes me angry. I'm being a bit lazy with my doses as I'm so sick of taking tablets! ARUGH. Just don't tell my parents, they won't like that. ;)
So, as I've mentioned I have an ileostomy. I think I've introduced him before, but if not, his names Bruce and he's nearly 1! Woo! My stoma nurse told me to name him, so I was able to accept him, and boy have I accepted him. I don't want him to go! But he's a loop, which means he's double sided, one half is connected to my mouth (not literally) and the other is connected to my remaining colon.
As I still have some colon, its not being used, so it's kinda just sitting there getting bored which gives me real bad pain. And can actually turn into diversion colitis which I'm already starting to get as I have colitis in there too! I'm well healthy! Haha. So, reversal is the only option.
A reversal basically puts the stoma back inside me and closes it up again to look like a normal bit of intestine ( I would say bowel but I don't like that word). Sounds easy right? Bet your wondering why on earth I'd wanna live with a bag on my belly. But it's complicated and unpredictable. It could leak at the stitches, poisoning me. It could get infected at the wound. And the major one for me, bowel (UGH) control. Because the colons not been used for over a year, it's like a baby in that I have to teach it what to do again. It's a bit rebellious as it is so I'm not looking forward to it at all. Where as a bag, its reliable and convenient.
Not to mention the fact that when I say I'm scared about it going wrong no one seems to listen to me! I understand that I need it doing but it's ANOTHER operation and my 3rd general anaesthetic in a year. Which just make me feel rubbish!
Anyway I'm on the verge of getting grumpy now I'm talking reversal so moving on...
Other than being ill I'm not too bad at the moment, depression and anxiety are under control to some extent. Had my wisdom teeth out 2 weeks ago, so thats a bit annoying still.
I'm being referred to a dermatologist as the skin around my stoma is a right state and I've tried just about every product out there to treat it so it's now time to bring in the people who know what they're doing. It's itching now, talking about it. Thats like when you read the word yawn it makes you yawn... yawn..yawn....YAWN.. haha.
But yeah, I'm rambling now so I'm gonna go.
blogging off :)
It's coming up too Easter, which I dread annually as I associate it with being hospitalised with crohns!
Easter 2008 I was diagnosed. Easter 2009 I was in a HUGE flare and on steroids. Easter 2010 hospitalised leading to surgery! And fingers crossed Easter 2011 will be happy and at home, even though I have tonsillitis at the moment and on antibiotics hopefully thats all that will happen haha.
I find antibiotics hard, as without them I'm obviously ill, and on them I'm ill as it flares my stomach and makes my ileostomy angry! Which makes me angry. I'm being a bit lazy with my doses as I'm so sick of taking tablets! ARUGH. Just don't tell my parents, they won't like that. ;)
So, as I've mentioned I have an ileostomy. I think I've introduced him before, but if not, his names Bruce and he's nearly 1! Woo! My stoma nurse told me to name him, so I was able to accept him, and boy have I accepted him. I don't want him to go! But he's a loop, which means he's double sided, one half is connected to my mouth (not literally) and the other is connected to my remaining colon.
As I still have some colon, its not being used, so it's kinda just sitting there getting bored which gives me real bad pain. And can actually turn into diversion colitis which I'm already starting to get as I have colitis in there too! I'm well healthy! Haha. So, reversal is the only option.
A reversal basically puts the stoma back inside me and closes it up again to look like a normal bit of intestine ( I would say bowel but I don't like that word). Sounds easy right? Bet your wondering why on earth I'd wanna live with a bag on my belly. But it's complicated and unpredictable. It could leak at the stitches, poisoning me. It could get infected at the wound. And the major one for me, bowel (UGH) control. Because the colons not been used for over a year, it's like a baby in that I have to teach it what to do again. It's a bit rebellious as it is so I'm not looking forward to it at all. Where as a bag, its reliable and convenient.
Not to mention the fact that when I say I'm scared about it going wrong no one seems to listen to me! I understand that I need it doing but it's ANOTHER operation and my 3rd general anaesthetic in a year. Which just make me feel rubbish!
Anyway I'm on the verge of getting grumpy now I'm talking reversal so moving on...
Other than being ill I'm not too bad at the moment, depression and anxiety are under control to some extent. Had my wisdom teeth out 2 weeks ago, so thats a bit annoying still.
I'm being referred to a dermatologist as the skin around my stoma is a right state and I've tried just about every product out there to treat it so it's now time to bring in the people who know what they're doing. It's itching now, talking about it. Thats like when you read the word yawn it makes you yawn... yawn..yawn....YAWN.. haha.
But yeah, I'm rambling now so I'm gonna go.
blogging off :)
June 2010 - My First Surgery
We then waited a week or so to see the surgeon privately and talked through what surgery involved and confirmed that an ileostomy was likely, as I was still on steroids and steroids slow down the body's healing process. Also to give the colon a rest for all it had been through. I had accepted an ileostomy and realised that it would be better than being in the bathroom all day long. I just wanted to be better.
We then got a phone call the next day which was the next morning, saying they had a theatre slot the following Tuesday, June 15th at 2.20. We accepted and the nerves and anticipation set in for us all.
On arrival on the morning of surgery we waited nervously for time to come around, both my surgeons came to see me to check my notes and have a chat before theatre. Then the anesthetist came and explained it was a general anesthetics and as I had small veins I would have a line put in my neck to administer medication and fluids, as the IV in my hand would be used for pain relief and would have a catheter into my bladder. I was given a pre-med tablet to help calm me down and wheeled down to theatre where they struggled to get an IV into a vein, 4 attempts later they got one in and instantly administered anesthetic. I then drifted off while holding my Mum's hand.
They removed 1 foot of small intestine and 6 inches of colon along with the cecum, appendix and the join connecting the large and small intestine together.
I then vaguely remember being woken from surgery by nurses and them putting an oxygen mask on my face, and being vaguely aware my Mum and Dad were by my side holding my hand. Helping me with pressing my PCA morphine button for pain relief. The pain was intense, like nothing I've ever felt in my life. The phrase 'being run over by a train' doesn't even compare to how much I was hurting.
I'm told after I was screaming and was held up in recovery for 40 minutes after the 4 and half hour operation was completed, as they couldn't get my pain under control. The morphine made my skin itchy so I was scratching everywhere I could reach, I already have the skin condition Urticuria so this was made ten times worse by the morphine. I also had trouble breathing; I'd drift off to sleep in between bouts of pain and suddenly gasp and began panicking. From the bits of this time I remember it was truly the worst time of my life.
I then awoke after sleeping off most of the anesthetic in the high dependancy room (constantly being monitored, bit like ICU but only me in there). Confused, groggy and on my own, Mum and Dad left at 11pm once I'd calmed down, but I don't remember all of this as the anesthetic was still in my system. I awoke reasonably comfortable and realised that I had had surgery but was too scared to look down to see what state I was in. Pressed my PCA button as pain crept in and fell back off to sleep.
The next day was a blur, morphine made my vision blurred, so I had no clue what was going on and who was there. Apparently, a nurse came in and gave me a bed bath and put me in some comfortable PJ's. I can only remember telling anyone and everyone who came in that I was in such pain. But at least I had my Mum and Dad by my side to help me through it all. A nurse came in to take some bloods.
Day 2 after Operation I was able to start sipping fluids today, but was kept on fluids put in through the line in my neck until I could drink properly. I still had a really sore throat from the breathing tube from surgery.
The physiotherapy nurse came to see me and got me to sit up. I protested against it greatly but had to do it. I was still in such agony. I was more aware on this day and became more aware of the line in my neck and the catheter, which was weirdly uncomfortable. Clear to say I hated every second.
On day 3 I was given a new PCA as I used up all the morphine from being in such pain. But this time was given a lower dosed PCA so I didn't use too much. I was able to swallow this day so they gave me Tramadol tablet for a second pain relief. The itching from the morphine was intense and uncomfortable. I was given Piriton but it only touched it slightly. I was also given a nutritional drink called Fortisip as I still wasn't able to eat. I was aware that my stoma was starting to work as it got rid of blood etc. left from surgery and the gas used to inflate my abdomen during surgery.
By day 4 I was allowed to start eating as my bowels had started to work, so I slowly ate my way through a bacon sandwich. My stoma was becoming livelier now. The physiotherapy came every day to get me to do more and more, as did my surgeons and consultant. They all decided it was time to remove my neckline and catheter so I could be more mobile to walk to the toilet. Both were very unpleasant experiences. My Mum had to help me walk to the bathroom as the morphine made me see double and head go fuzzy.
On day 5 My stoma nurse came to see me to change the bag for the first time. It was horrible, scary and I cried during every minute of it, I didn't want to look at the stoma yet either. I then had my 8 bandages changed on my wounds. I then had to go for a little walk down the corridor; the nurses were pleased with my progress. I also sat in the chair for a while. Needless to say that day was exhausting.
On Day 6 I walked down the corridor and up and down a flight of stairs. And once again it was the time I dreaded, time to change stoma bag again, this time one of the senior nurses did it, we did it in the bathroom. I began having a panic attack cause I was scared. Lucky my Mum was there to hold my hand.
Day 7 came and I had my PCA removed and Mum changed my bag, therefore I was allowed to go home. The stoma nurse came and gave me enough supplies to last till she came on a home visit 2 days later. We waited for my medication (last few weeks worth of steroids, blood thinning injections which were being administered every night by Mum and Tramadol) The car journey home was one to remember as it was so painful, every move or bump the car made my stomach felt it. But I was so glad to be home.
The first few days home were tough, I couldn't sleep comfortably in my bed, so I propped myself up on the sofa and slept there. I was taking both paracetamol and Tramadol for pain relief. I was emptying the bag on my own, and eating small meals. Helen came to check on me on the Thursday after I was home. Changing the bag was very painful, as the stitches were pulling and some had split. I still can’t watch her change it, but can look at it when the bag is on.
I was managing to move a bit better then too. Mum managed to go back to work as my progress was good and I was able to look after myself, although I had to have my Mum’s help to change my bag. She sizes the bag for the stoma, cuts the bag and fixes it on for me, as I can’t do it.
The bandages came off the wounds the next week. Very tidy wounds, which were glued together instead of stitched. There were two 1cm cuts and a 6 cm cut through my belly button and a number of smaller cuts all over my tummy and just under my ribs.
The surgeons told us that it turned out I was a lot more ill than first thought, and it could have been a different story if I hadn’t of had surgery when I did. It was poisoning my body making me so poorly.
Late May 2010- A&E, Hospital, IV steroids
I saw my consultant again, he referred me for an MRI scan, which required me to drink Movi-Prep again, I only managed a glass as it made me feel so sick, and then had some drugs injected via IV, a dye and another one which I believe help keep the bowel still while being scanned. The MRI results only showed only 'mildly' active Crohns/colitis, and my bloods were relatively normal showing only a few inflammatory markers.
I then ended up being told to come into hospital again for a course of IV steroids. Though there were no beds up on the ward, we were told it would be easier to get a bed if we went through A&E and they would send us up. I was then given an IV and sent for an X-ray. The A&E doctors said that there was nothing wrong with me and that it was impossible for me to be in pain and feeling ill when I was on all the medication I was on, plus steroids. They then insisted on sending me home. But I refused and said the ward was expecting me. They reluctantly sent me to the observation ward to wait for a bed. I spent the night there being sent up to the ward the next day where I started a course of IV steroids.
My consultant was on holiday, so one of his colleagues came to see me on day 4 of that hospital stay, where I said that nothing seemed to help, and he went off the get some of the other doctors and came back with Dr Loft, who came to see me on my hospital visit at Easter with some students. Dr Loft then talked through all my medication and that it sounded like my bowel had turned into scar tissue, therefore was pretty much untreatable by medication and surgery was then mentioned. I was then able to go home and wait for an appointment to see consultant, as soon as he was back at work.
At my follow up appointment the next week with Prof, I told him all that happened over the last few weeks, and he said.. "Lets make you better." He then referred me to see the surgeon again, having seen him 2 years previously.
Subscribe to:
Posts (Atom)