Hi everyone,
Again, it has been such a long time since my last post and although nothing huge has been happening I guess things have developed over the last couple of months.
Firstly! I don't know if I've mentioned it before but a couple of months ago I popped back to see my consultant as I found an ulcer on Margaret. I was changing the bag one day, when I spotted a small flat red mark on her, I took a photo (for evidence) but wasn't overly worried. Stomas aren't the toughest things and the smallest bump can make them bleed or cut so I assumed that was probably what has happened. Upon the next bag change, however, the little flat red mark had evolved in to a slightly larger, darker dip in to the flesh with a white-ish centre. It didn't hurt or bleed or produce any other weird or wonderful liquids so I really wasn't sure what to think. As ulceration and active Crohn's has always been on my insides, I had never really seen what it looks like up close, I decided to take to Google to see if I could identify the little thing. BIG MISTAKE! Not only was the list of possibilities huge but the photos were graphic and not particularly pleasant - whatever you do, never ever Goggle Image 'Crohn's Ulcer'...
About a week on, the mark had yet to improve so I took the plunge and contacted my IBD Nurse, sending her my photographic evidence. I'm always a bit apprehensive when contacting my Dr's as in the past it has always lead to more tests, appointments, developments or medication changes - most of the time, things have gotten worse. I have gotten pretty darn great at knowing my body and knowing when things weren't okay, I don't think I have ever received a piece of news that I hadn't already considered and thought was probable. As expected, the IBD Nurse contacted my consultant and I was booked in the following week to be seen.
My appointment day arrived and I went in as usual, my consultant had a new trainee IBD male nurse with her, I introduced myself before talking through my little discovery and removing the bag to show them what it looked like. I always find it really bizarre, that with this kind of disease you meet someone for a matter of minutes before whipping out a private part of your body. 'Hi my names Gabi, now have a look at the intestine sticking out of my stomach'... but I guess they are incredibly used to it and it's pretty impossible for me to be embarrassed anymore.
My thoughts were confirmed and Margaret, the little bugger, had grown an ulcer. This was not the greatest news. Margaret was placed where she was so that all active Crohn's (ulcers) were below her, thus giving that diseased part of the bowel a chance to heal. This discovery showed that there in fact Crohn's above Margaret (and on top of her) meaning that the disease had moved places/spread and my current medication wasn't doing its job properly. Luckily, from the ulcer we could see, and the minimal stomach cramps I was getting, it was easy to assume that the flare up wasn't severe and easily solvable. It was this appointment that lead to the disastrous MRI scan that I wrote about in my last blog post.
A couple of weeks ago I went back to go over all my test results. The good news is that it doesn't seem to be a huge flare and the little ulcer on Marge has disappeared, the bad news is that my Humira injections have been put up to every week again. This isn't a huge deal but is a bit of a faff and nobody likes sticking needles in their stomachs! The other repercussion, which although not mentioned by the Dr's I feel is very true, is that the likelihood of me having Margaret reversed has gone even lower. If my body and the medication I am on can't hold off the Crohn's with Margaret it sure as hell won't be able to do it without. I know I've already been told that it's probably not going to happen but every bit of news like this just makes that all the more real.
On the next post, I'll tell you all about the story of my wobbly joints....
G xxx
Thursday, 16 April 2015
Monday, 2 March 2015
My interesting morning...
Hi everyone,
I know it's been far too long since my last post, but life has taken over! I will update shortly but first I wanted to tell you about my rather 'interesting' MRI scan I had this morning.
I received my appointment letter about 5 weeks ago and rang straight away to inform them of Margaret in case that changed anything about the scan. Having a small bowel MRI involves drinking a lot of a pretty grim drink in order to see how it moves through your bowel. You are then given a contrast via a cannula in your arm, so the MRI picks it up. I was assured to come along as normal, with the only difference being that I would be given less of the drink.
I arrived bright and early this morning with my Mum, ready for what I thought would be a pretty easy, hassle free scan. The knowledge that I would be drinking less of the nasty tasting stuff and the fact I have had now had countless MRI's meant I wasn't nervous. On arrival I went through my medical form and was presented with a jug, half filled with orange liquid. I did as I was told, downing a cup full every couple of minutes to ensure that the whole thing was gone within 20. The drink isn't pleasant but is bearable, I've had it many times before so managed to get it down with relative ease.
Once finished I shuffled on through to the scanning room and hopped on to the MRI bed. A fairly weighted guard/brace piece of equipment was then strapped to my body, leaving my legs free but my arms stuck down my sides. It was a snug fit but not uncomfortable. It did however mean that there was quite a heavy item pushing down on my stomach... and Margaret. It did briefly cross my mind that this may not be great for her, but I didn't think much of it, as they knew all about Margaret.
I was given a buzzer to hold in case I needed the machine to stop and was then fed through in to the MRI scanner. I am not claustrophobic but wouldn't say I am the greatest fan of being in tight spaces. MRIs however have never bothered me. They are well lit and normally your legs or head are poking out the end - so I've never really felt trapped. No music was played through my headphones this time but I just settled down to lying still for the next 40 minutes.
Whilst being scanned, a mechanical voice tells you to "breathe in, breath out, hold you breath". It was about 10 minutes in, whilst breathing out that I felt Margaret's adhesive slowly peel off and a wave of fluid spill across my stomach and down my side. My heart sank and I frantically squeezed my little buzzer, unable to move either of my arms or stop the flow from Margaret. On being removed from the machine, I discovered that the drink I had been given was in fact a laxative... which had powered through the little colon I use at a remarkable rate of 15 minutes. What had poured out of me was the exact liquid that had gone in and I was covered in orange squash laxative. The weight & placement of the brace and the fact that I had downed A LOT of laxative fluid before lying very still was a recipe for disaster. I was not even half way through the scan and I was already a soggy, bright orange, mess with the bag hanging off my stomach. In short, I looked a complete state. I went out to my Mum laughing at how ridiculous I must have looked and most concerned about the staining all over my new jumper. We did a pretty good job of taping the bag back to my stomach (thank god for my Mum) and after emptying Margaret, had no real choice but to hop back in to the machine for round 2!
Another 10 minutes later and determined Margaret broke free from her tape and poured once again all over me. At this point I thought, 'What the heck' and didn't bother to press the buzzer again. I wanted the scan to be finished as soon as possible and already looked as if I had gone swimming in orange squash so things couldn't get much worse! I continued to lie there and with every 'breath out' instruction more liquid flowed free. I couldn't help but start to laugh at the pure ridiculousness of the situation I was in. Strapped in to a tube with a ridiculously quantity of orange squash pooling underneath me... What had my life come to!
What felt like a lifetime later, the scan finally finished and I had the cannula removed from my arm. I hobbled out to my Mum in an even worse state than we she had last seen me... I ended up being driven home with the majority of my sodden clothes removed, sitting on a bin bag. My Monday morning certainly didn't get off to your average start.
Thankfully I had the rest of the day free to chill out, I felt pretty sick and headachy after downing the laxative and the speed in which it had gone through me meant I was pretty dehydrated - something which isn't great for any stoma owner. I've tried to relax for the rest of the day, my body aches from holding it in such an awkward position for so long and I have generally felt pretty exhausted from the whole ordeal!!
It turns out that a lot of places don't even offer the laxative to those with an ostomy and I would certainly raise this issue in the future. I've never heard of this happening to anybody else in the past but my advice to any ileostomy owner having this particular scan is to explain the possible consequences of mixing a stoma, laxative and body brace...
XXX
I know it's been far too long since my last post, but life has taken over! I will update shortly but first I wanted to tell you about my rather 'interesting' MRI scan I had this morning.
I received my appointment letter about 5 weeks ago and rang straight away to inform them of Margaret in case that changed anything about the scan. Having a small bowel MRI involves drinking a lot of a pretty grim drink in order to see how it moves through your bowel. You are then given a contrast via a cannula in your arm, so the MRI picks it up. I was assured to come along as normal, with the only difference being that I would be given less of the drink.
I arrived bright and early this morning with my Mum, ready for what I thought would be a pretty easy, hassle free scan. The knowledge that I would be drinking less of the nasty tasting stuff and the fact I have had now had countless MRI's meant I wasn't nervous. On arrival I went through my medical form and was presented with a jug, half filled with orange liquid. I did as I was told, downing a cup full every couple of minutes to ensure that the whole thing was gone within 20. The drink isn't pleasant but is bearable, I've had it many times before so managed to get it down with relative ease.
Once finished I shuffled on through to the scanning room and hopped on to the MRI bed. A fairly weighted guard/brace piece of equipment was then strapped to my body, leaving my legs free but my arms stuck down my sides. It was a snug fit but not uncomfortable. It did however mean that there was quite a heavy item pushing down on my stomach... and Margaret. It did briefly cross my mind that this may not be great for her, but I didn't think much of it, as they knew all about Margaret.
I was given a buzzer to hold in case I needed the machine to stop and was then fed through in to the MRI scanner. I am not claustrophobic but wouldn't say I am the greatest fan of being in tight spaces. MRIs however have never bothered me. They are well lit and normally your legs or head are poking out the end - so I've never really felt trapped. No music was played through my headphones this time but I just settled down to lying still for the next 40 minutes.
Whilst being scanned, a mechanical voice tells you to "breathe in, breath out, hold you breath". It was about 10 minutes in, whilst breathing out that I felt Margaret's adhesive slowly peel off and a wave of fluid spill across my stomach and down my side. My heart sank and I frantically squeezed my little buzzer, unable to move either of my arms or stop the flow from Margaret. On being removed from the machine, I discovered that the drink I had been given was in fact a laxative... which had powered through the little colon I use at a remarkable rate of 15 minutes. What had poured out of me was the exact liquid that had gone in and I was covered in orange squash laxative. The weight & placement of the brace and the fact that I had downed A LOT of laxative fluid before lying very still was a recipe for disaster. I was not even half way through the scan and I was already a soggy, bright orange, mess with the bag hanging off my stomach. In short, I looked a complete state. I went out to my Mum laughing at how ridiculous I must have looked and most concerned about the staining all over my new jumper. We did a pretty good job of taping the bag back to my stomach (thank god for my Mum) and after emptying Margaret, had no real choice but to hop back in to the machine for round 2!
Another 10 minutes later and determined Margaret broke free from her tape and poured once again all over me. At this point I thought, 'What the heck' and didn't bother to press the buzzer again. I wanted the scan to be finished as soon as possible and already looked as if I had gone swimming in orange squash so things couldn't get much worse! I continued to lie there and with every 'breath out' instruction more liquid flowed free. I couldn't help but start to laugh at the pure ridiculousness of the situation I was in. Strapped in to a tube with a ridiculously quantity of orange squash pooling underneath me... What had my life come to!
What felt like a lifetime later, the scan finally finished and I had the cannula removed from my arm. I hobbled out to my Mum in an even worse state than we she had last seen me... I ended up being driven home with the majority of my sodden clothes removed, sitting on a bin bag. My Monday morning certainly didn't get off to your average start.
Thankfully I had the rest of the day free to chill out, I felt pretty sick and headachy after downing the laxative and the speed in which it had gone through me meant I was pretty dehydrated - something which isn't great for any stoma owner. I've tried to relax for the rest of the day, my body aches from holding it in such an awkward position for so long and I have generally felt pretty exhausted from the whole ordeal!!
It turns out that a lot of places don't even offer the laxative to those with an ostomy and I would certainly raise this issue in the future. I've never heard of this happening to anybody else in the past but my advice to any ileostomy owner having this particular scan is to explain the possible consequences of mixing a stoma, laxative and body brace...
XXX
Thursday, 15 January 2015
"Too Ugly For Love" ?!
Hi everyone,
This week whilst scrolling through Facebook, a post popped up from The Crohn's & Colitis page, highlighting a show that was to be aired that evening on channel TLC, which would include 2 people living with ostomy bags...
This week whilst scrolling through Facebook, a post popped up from The Crohn's & Colitis page, highlighting a show that was to be aired that evening on channel TLC, which would include 2 people living with ostomy bags...
"This observational documentary series follows 10 unique singletons, ordinary people living with extraordinary medical conditions, on their quest to find love. All these conditions can be kept secret during a date, and with that comes a whole world of dilemmas"
I thought it sounded mildly entertaining. Along the same lines of 'The Undateables' - a show following a people with a range of disabilities on the quest for love. I guess it would highlight these various issues and medical conditions, bring them to the publics attention, showcase a very real problem of having a 'hidden disease'. Nothing wrong with that I guess & it is not the show I really have a problem with. What disgusted me was the title that TLC chose to use.
Too Ugly For Love (?)
(The question mark is inconsistently used but makes no difference. Without it is a statement, with it is asking the public for their opinion.)
Now I am obviously speaking from the IBD/Ostomy stand point but this show includes people living with such things as, alopecia, ostomy bags, severe burns and missing limbs apparently conditions which OBVIOUSLY deem them far, far to ugly to find or be loved. Cheers TLC!
I would like to think I am relatively thick skinned and resilient - I was able to brush off the title with a laugh and a strongly worded OFCOM complaint. But to the teenage girl who has just had an ostomy fitted, or the terrified man on a waiting list to have one, the news that they could now be considered 'ugly' would be a pretty low and confidence crushing blow, no doubt voicing private worries they have themselves.
Having an ostomy is a huge lifestyle change, it takes its toll and a while to adjust. From my experience, initially your confidence is knocked, your body doesn't look how you want it to and you'll worry what people might think. Then to be publicly told that you are too ugly for love, is nothing shot of vile.
Some may argue that the show does positive things for raising the exposure of IBD and ostomy bags, bringing it to the attention of the UK public. I would argue that this kind of exposure is far from positive. Portraying those with ostomy bags as so widely different from 'normal' people that they need their own dating show only compounds an idea I hate. Yes I have Crohn's, yes I have an ostomy and aside from going to the toilet in a slightly different way, I am the same as every other person walking down the street. The show highlights an insecurity that is not exclusive to those with medical conditions but effects everyone who has ever had low self esteem, felt insecure or low in confidence - if you ask me thats nearly everyone at some point in their life.
Judging by the hundreds of comments, tweets and posts in Crohn's support forums I have read today I am not alone in my views. It is also heartbreaking the number of people who have been upset and negatively effected by this title. TLC you should be ashamed.
xxx
It is also important to note that I am in no way judging the people involved in the show. Marcia who is involved with the show and has an ostomy responded to the outcry with her own statement here - highlighting that she was unaware of the shows name until filming was almost complete. Antony, who also features with his ostomy, explained in his statement that the shows name was changed last minute. I think they're very brave and were only ever taking part for positive reasons.
Saturday, 27 December 2014
My 2014 Roundup!
Hi lovely people,
It has been a while since my last post but I have been insanely busy recently!
Firstly an update on the whole Margaret / Permanent / Reversal / Surgery situation...
About a month ago I had an appointment with my consultant where we went through all prior test results and future plans. It was decided that, as I thought, no reversal would be happening any time soon. I have active Crohn's in two areas of my digestive system - this means it would make no sense at all to reverse Margaret as it is currently the only thing keeping me symptom free. Without it I would be straight back to being really poorly - not something I want to happen! It was also pointed out that due to the damage to my 'perianal' area (due to being so ill before) there would be worries that my bowel would not work quite right again and I may suffer with difficulty controlling it... again, something I really do not want to happen! Due to all of this, reversal (at least for now) has been ruled out.
All is not lost though, I am going back to see her in 4/6 months time to re assess the situation. Although the prognosis is not looking great, at least it hasn't been 100% ruled out quite yet... Between now and then I have to cross my fingers and toes that the Crohn's will magically heal itself or they find a shiny new cure!
Now! As we head towards 2015, it is only normal to look back at the past year, and what an amazing year it has been!!
In the past 12 months I have graduated, lost 2 and half stone, successfully completed a Kickstarter campaign, gone on Margaret's first holiday and set up my own business... to name just a few things!
Chroma has been doing pretty darn well these past few months, hence why I've been so busy! It is now a profitable company, with hundreds of orders every month and has shipped to countries world wide including New Zealand, Singapore and Turkey. Chroma has been featured in a whole list of vlogs and blogs including some of the biggest in the UK including Sprinkle of Glitter, Tanya Burr & Lily Pebbles and will be included in TATLER magazines 2015 Valentine Day's Gift Guide...!!!!?!!!! All a bit insane but so amazing.
Looking back at my graduation photos also makes me really proud. At the time I was still gutted about just missing out on the 1st I really wanted and I found the actual day really stressful (thanks to Margaret) but now looking back I can fully appreciate the whole thing!
2014 has without a doubt been one of the best years of my life, I have had more ups than downs and compared to a year ago today, I am very, very happy! Roll on 2015!
I hope you all had a very Merry Christmas and a wonderful New Year!
Lots of love
xxx
It has been a while since my last post but I have been insanely busy recently!
Firstly an update on the whole Margaret / Permanent / Reversal / Surgery situation...
About a month ago I had an appointment with my consultant where we went through all prior test results and future plans. It was decided that, as I thought, no reversal would be happening any time soon. I have active Crohn's in two areas of my digestive system - this means it would make no sense at all to reverse Margaret as it is currently the only thing keeping me symptom free. Without it I would be straight back to being really poorly - not something I want to happen! It was also pointed out that due to the damage to my 'perianal' area (due to being so ill before) there would be worries that my bowel would not work quite right again and I may suffer with difficulty controlling it... again, something I really do not want to happen! Due to all of this, reversal (at least for now) has been ruled out.
All is not lost though, I am going back to see her in 4/6 months time to re assess the situation. Although the prognosis is not looking great, at least it hasn't been 100% ruled out quite yet... Between now and then I have to cross my fingers and toes that the Crohn's will magically heal itself or they find a shiny new cure!
Now! As we head towards 2015, it is only normal to look back at the past year, and what an amazing year it has been!!
In the past 12 months I have graduated, lost 2 and half stone, successfully completed a Kickstarter campaign, gone on Margaret's first holiday and set up my own business... to name just a few things!
Chroma has been doing pretty darn well these past few months, hence why I've been so busy! It is now a profitable company, with hundreds of orders every month and has shipped to countries world wide including New Zealand, Singapore and Turkey. Chroma has been featured in a whole list of vlogs and blogs including some of the biggest in the UK including Sprinkle of Glitter, Tanya Burr & Lily Pebbles and will be included in TATLER magazines 2015 Valentine Day's Gift Guide...!!!!?!!!! All a bit insane but so amazing.
Looking back at my graduation photos also makes me really proud. At the time I was still gutted about just missing out on the 1st I really wanted and I found the actual day really stressful (thanks to Margaret) but now looking back I can fully appreciate the whole thing!
2014 has without a doubt been one of the best years of my life, I have had more ups than downs and compared to a year ago today, I am very, very happy! Roll on 2015!
I hope you all had a very Merry Christmas and a wonderful New Year!
Lots of love
xxx
Friday, 24 October 2014
Colonoscopy Day
Hi everyone,
So yesterday I had my wonderful colonoscopy.
The prep started Wednesday night with having to give myself two enemas... lets just say the less we talk about that the better. Although not painful and hideous like last time, it still wasn't pleasant. It baffles me how people opt to do that kind of thing, out of choice...
Anyway, I was up bright and early yesterday morning to get to the hospital for 7:30am. Nerves meant I had barely slept the night before so had to drag myself out of bed with only 4 hours sleep. Mum drove me to the hospital and I checked in as usual, in to bay E3 (I hate the number 3 - not a good start). I had to change in to a gown, awful socks and was visited by various nurses, my anaesthetist and surgeon. Luckily I was the first person in to surgery, which meant I only had to wait about an hour before being escorted to the surgery room. Normally this is done by a nurse but this time I headed down with the surgeon himself. He was cracking jokes the whole way which did actually put me at ease. I knew what was coming and so strangely didn't really feel too nervous as I led down on the bed and had my blood pressure taken, heart rate monitors fitted and finally a cannula put in my hand. As I went off to sleep the nurse and anaesthetists were chatting about The Tower of London and London Dungeons... not the nicest thing to hear before you're sedated.
The next thing I remember is being jolted awake, I must have been sleeping really deeply as I woke up with such a shock and the tube still down my throat. Within a second it was removed which although was bizarre, didn't frighten me like you'd think it might. I was given an oxygen mask and had everything checked over. Apparently I had been asleep for half an hour, which is such a strange thought. I overheard a nurse say "keep a nurse with her, after what happened" - this massively freaked me out and I became convinced that something terrible had occurred and nobody had told me yet. I asked if everything was alright and a nurse said that there had been no complications and the surgeon would come to see me soon. I started shivering which now that I think of it, did happen the last time I was given a general anaesthetic. Apparently it is quite a common reaction and I was given an extra blanket. At this point I was wheeled back to my E3 bay and my Mum was bought through.
Apparently I was chatting away and repeated myself twice, although I can't remember any of this. I was brought some jam on toast and some water and waited to feel a bit more awake. It is crazy how worn out you feel whilst still coming round. I remember moving my leg and thinking that it would have to stay there for hours because I was definitely too tired to move it again. Time also goes by so quickly, one minute it was 10:00 the next 11:00. This is when the surgeon came through to see me and told me news I wasn't looking forward to hearing.
He explained that although there had been no complications there were areas of my intestine that the probe/camera wire could not fit through, no matter how hard he tried. This meant they had to take my bag off and go through Margaret to get a good look at the other side. Now this probe thing is probably the size of, if not smaller than my little finger, the fact that my intestine was so damaged/scarred that it couldn't fit through was hardly confidence building news. He then went on to tell me that there was some Crohn's along the right side of my intestine and that the 'perianal' (the bit nearest your bum) was also badly scarred and he had his doubts that it would work effectively again, explaining that he would be concerned that if I were to have Margaret reversed I may not be able to control my bowels properly. He did say that all the results from the biopsies would be examined further and that my consultant would get in touch and give me the final results. Now although this is still a month away, the answer was pretty clear. The likelihood of me having Margaret reversed is looking even slimmer. Obviously, I am pretty gutted but I think I knew deep down that that was the case anyway. I have been tired recently and my knee has been bothering me a bit, so the fact that I had Crohn's there didn't surprise me. The fact that it is the perianal area which is so badly damaged is also tough to hear as this area can't really be removed or resected, which doesn't give me many other options other than to keep Margaret. The surgeon also told me that if I were to have children in the future they would need to be born via cesarian rather than naturally due to the state of my perianal area.
I was eventually discharged after the nurse made sure I could wee and walk on my own and Mum and I headed home. All I wanted to do was crawl in to bed, which is where I spent pretty much of the remainder of the day, although I did eventually get up to eat some pancakes (of course). Last night I had another rubbish sleep and have been worn out and feeling pretty rubbish ever since, most of this will be down to the anaesthetic getting out of my system. Today I've also had various mind blanks, becoming unable to remember my pin code or what I walked in to a room to get, which is bizarre but again down to the anaesthetic. I will hopefully feel a bit more human again over the weekend.
The news is obviously not what I wanted to hear and although not 100% confirmed, was made pretty obvious, but we shall see what the consultant says in November. I think it is going to take me a while to get my head around
Lots of love,
Gabi xxx
So yesterday I had my wonderful colonoscopy.
The prep started Wednesday night with having to give myself two enemas... lets just say the less we talk about that the better. Although not painful and hideous like last time, it still wasn't pleasant. It baffles me how people opt to do that kind of thing, out of choice...
Anyway, I was up bright and early yesterday morning to get to the hospital for 7:30am. Nerves meant I had barely slept the night before so had to drag myself out of bed with only 4 hours sleep. Mum drove me to the hospital and I checked in as usual, in to bay E3 (I hate the number 3 - not a good start). I had to change in to a gown, awful socks and was visited by various nurses, my anaesthetist and surgeon. Luckily I was the first person in to surgery, which meant I only had to wait about an hour before being escorted to the surgery room. Normally this is done by a nurse but this time I headed down with the surgeon himself. He was cracking jokes the whole way which did actually put me at ease. I knew what was coming and so strangely didn't really feel too nervous as I led down on the bed and had my blood pressure taken, heart rate monitors fitted and finally a cannula put in my hand. As I went off to sleep the nurse and anaesthetists were chatting about The Tower of London and London Dungeons... not the nicest thing to hear before you're sedated.
The next thing I remember is being jolted awake, I must have been sleeping really deeply as I woke up with such a shock and the tube still down my throat. Within a second it was removed which although was bizarre, didn't frighten me like you'd think it might. I was given an oxygen mask and had everything checked over. Apparently I had been asleep for half an hour, which is such a strange thought. I overheard a nurse say "keep a nurse with her, after what happened" - this massively freaked me out and I became convinced that something terrible had occurred and nobody had told me yet. I asked if everything was alright and a nurse said that there had been no complications and the surgeon would come to see me soon. I started shivering which now that I think of it, did happen the last time I was given a general anaesthetic. Apparently it is quite a common reaction and I was given an extra blanket. At this point I was wheeled back to my E3 bay and my Mum was bought through.
Apparently I was chatting away and repeated myself twice, although I can't remember any of this. I was brought some jam on toast and some water and waited to feel a bit more awake. It is crazy how worn out you feel whilst still coming round. I remember moving my leg and thinking that it would have to stay there for hours because I was definitely too tired to move it again. Time also goes by so quickly, one minute it was 10:00 the next 11:00. This is when the surgeon came through to see me and told me news I wasn't looking forward to hearing.
He explained that although there had been no complications there were areas of my intestine that the probe/camera wire could not fit through, no matter how hard he tried. This meant they had to take my bag off and go through Margaret to get a good look at the other side. Now this probe thing is probably the size of, if not smaller than my little finger, the fact that my intestine was so damaged/scarred that it couldn't fit through was hardly confidence building news. He then went on to tell me that there was some Crohn's along the right side of my intestine and that the 'perianal' (the bit nearest your bum) was also badly scarred and he had his doubts that it would work effectively again, explaining that he would be concerned that if I were to have Margaret reversed I may not be able to control my bowels properly. He did say that all the results from the biopsies would be examined further and that my consultant would get in touch and give me the final results. Now although this is still a month away, the answer was pretty clear. The likelihood of me having Margaret reversed is looking even slimmer. Obviously, I am pretty gutted but I think I knew deep down that that was the case anyway. I have been tired recently and my knee has been bothering me a bit, so the fact that I had Crohn's there didn't surprise me. The fact that it is the perianal area which is so badly damaged is also tough to hear as this area can't really be removed or resected, which doesn't give me many other options other than to keep Margaret. The surgeon also told me that if I were to have children in the future they would need to be born via cesarian rather than naturally due to the state of my perianal area.
I was eventually discharged after the nurse made sure I could wee and walk on my own and Mum and I headed home. All I wanted to do was crawl in to bed, which is where I spent pretty much of the remainder of the day, although I did eventually get up to eat some pancakes (of course). Last night I had another rubbish sleep and have been worn out and feeling pretty rubbish ever since, most of this will be down to the anaesthetic getting out of my system. Today I've also had various mind blanks, becoming unable to remember my pin code or what I walked in to a room to get, which is bizarre but again down to the anaesthetic. I will hopefully feel a bit more human again over the weekend.
The news is obviously not what I wanted to hear and although not 100% confirmed, was made pretty obvious, but we shall see what the consultant says in November. I think it is going to take me a while to get my head around
Lots of love,
Gabi xxx
Monday, 20 October 2014
Thoughts
Hi everyone,
I wanted to talk about something which I am sure I have touched on before but probably not gone in to much detail. I know a lot of people read this blog, and look to it for a positive story and good outcome from a pretty crappy disease (excuse the pun). I am often conscious of not freaking out pending ostomy owners or making things seem awful - because in so many ways they really aren't that bad. However, at the end of the day there are aspects of the disease and having an ostomy which are hard to get your head around.
One thing Margaret has had a huge effect on is my self confidence. I think it is normal for everyone, men and women, to have a crisis in confidence from time to time or to have bad days. But Margaret makes these bad days worse, something I am sure other Ostomy friends can relate to.
In many ways, however, she has changed my outlook on my appearance for the better. As I said before, I have managed to lose 2.5 stone in the past 9-10 months - something which was largely spurred on by having Margaret. I also think I care less about the little, stupid things about appearance which are very easy to get sucked in to. I have found that that bit of cellulite on my thighs or a tummy roll when you're in a bikini doesn't matter as much to me anymore.
The upcoming colonoscopy and subsequent decision on whether I can have Margaret reversed has got me thinking a lot. The thought of having Margaret for the rest of my life is incredibly overwhelming. I try to think of it one day at a time, or one week at most. The idea that there are still decades ahead of living day in day out with a bag stuck to my stomach is quite hard to get my head around. My reaction when I was told I had Margaret wasn't normal, I laughed. Since then I have been praised with how well I have dealt with it and how I haven't let it stop me. Despite being told I had a 1-2 in 10 chance of having a reversal, I don't think I have ever really, properly considered the fact that she really might be forever. Even now I catch myself thinking, "When I don't have Margaret I will be able to wear that again" or "Dating will be a lot easier when I don't have Margaret" - these are really dangerous thoughts because the reality is, it is very likely that me and Margaret will be mates for a very long time.
Until Margaret, my Crohn's was a largely hidden disease. Yes there were times when I looked really poorly, lost weight, lost my hair, gained a bunch of weight on steroids or spent time in a wheelchair but more often than not a stranger wouldn't know I had a long term health condition. In some ways this made life harder. People wouldn't or couldn't understand just how bad it could be because they couldn't see anything, it was hard to understand. The plus side of course was that unlike many awful health conditions the lack of outward symptoms kept the disease hidden and allowed me to live my life without always being seen as "ill". Since Margaret, however, I live with a constant reminder that I have a disease and will have this disease for the rest of my life. Every day I have to feel, touch or deal with Margaret. I can't ignore it or forget it, I have to plan around it and think about it all the time. I know that 99% of the time the advances in the stoma wear and fashion means that nobody has a clue I have her, but I always know. Yes its a lifestyle change and something that I have adapted to very quickly and I have never let Margaret stop me doing anything but she is also something I can never escape from. I can't just decide I have had enough for a couple of hours and need a break from it all, it is constant and will likely be constant for the rest of my life. On the day of my graduation, for example, rather than relax and enjoy the ceremony I spent an hour and half worried sick that Margaret was going to leak or swell up under my dress and that the auditorium of people were going to see it. The same thoughts go through my mind every time I am at the gym. It can be draining as it is without adding in the fact that it'll probably be this way for years. Although it is also really important to add some perspective to my life, there are people out there who are suffering a hell of a lot more than I am and dealing with things which leave me in awe. I only have to switch on the news to consider myself insanely lucky.
It isn't however all doom and gloom. In the months since Margaret I have graduated (on time) with a 2:1, gone on holiday and many nights out, lost 2.5 stone, been interviewed for the newspaper and on the radio, kept up this blog with amazing celebrity endorsement and lots of lovely readers, raised over £4,000 & set up my own business. It does give me great hope that despite the fact I don't like what I see in the mirror, if I do have Margaret forever I will still achieve and do everything I want to. And you never know, in a months time when I see my consultant, I could be writting a Bye Bye Margaret post.
Lots of love
Gabi xxx
I wanted to talk about something which I am sure I have touched on before but probably not gone in to much detail. I know a lot of people read this blog, and look to it for a positive story and good outcome from a pretty crappy disease (excuse the pun). I am often conscious of not freaking out pending ostomy owners or making things seem awful - because in so many ways they really aren't that bad. However, at the end of the day there are aspects of the disease and having an ostomy which are hard to get your head around.
One thing Margaret has had a huge effect on is my self confidence. I think it is normal for everyone, men and women, to have a crisis in confidence from time to time or to have bad days. But Margaret makes these bad days worse, something I am sure other Ostomy friends can relate to.
In many ways, however, she has changed my outlook on my appearance for the better. As I said before, I have managed to lose 2.5 stone in the past 9-10 months - something which was largely spurred on by having Margaret. I also think I care less about the little, stupid things about appearance which are very easy to get sucked in to. I have found that that bit of cellulite on my thighs or a tummy roll when you're in a bikini doesn't matter as much to me anymore.
The upcoming colonoscopy and subsequent decision on whether I can have Margaret reversed has got me thinking a lot. The thought of having Margaret for the rest of my life is incredibly overwhelming. I try to think of it one day at a time, or one week at most. The idea that there are still decades ahead of living day in day out with a bag stuck to my stomach is quite hard to get my head around. My reaction when I was told I had Margaret wasn't normal, I laughed. Since then I have been praised with how well I have dealt with it and how I haven't let it stop me. Despite being told I had a 1-2 in 10 chance of having a reversal, I don't think I have ever really, properly considered the fact that she really might be forever. Even now I catch myself thinking, "When I don't have Margaret I will be able to wear that again" or "Dating will be a lot easier when I don't have Margaret" - these are really dangerous thoughts because the reality is, it is very likely that me and Margaret will be mates for a very long time.
Until Margaret, my Crohn's was a largely hidden disease. Yes there were times when I looked really poorly, lost weight, lost my hair, gained a bunch of weight on steroids or spent time in a wheelchair but more often than not a stranger wouldn't know I had a long term health condition. In some ways this made life harder. People wouldn't or couldn't understand just how bad it could be because they couldn't see anything, it was hard to understand. The plus side of course was that unlike many awful health conditions the lack of outward symptoms kept the disease hidden and allowed me to live my life without always being seen as "ill". Since Margaret, however, I live with a constant reminder that I have a disease and will have this disease for the rest of my life. Every day I have to feel, touch or deal with Margaret. I can't ignore it or forget it, I have to plan around it and think about it all the time. I know that 99% of the time the advances in the stoma wear and fashion means that nobody has a clue I have her, but I always know. Yes its a lifestyle change and something that I have adapted to very quickly and I have never let Margaret stop me doing anything but she is also something I can never escape from. I can't just decide I have had enough for a couple of hours and need a break from it all, it is constant and will likely be constant for the rest of my life. On the day of my graduation, for example, rather than relax and enjoy the ceremony I spent an hour and half worried sick that Margaret was going to leak or swell up under my dress and that the auditorium of people were going to see it. The same thoughts go through my mind every time I am at the gym. It can be draining as it is without adding in the fact that it'll probably be this way for years. Although it is also really important to add some perspective to my life, there are people out there who are suffering a hell of a lot more than I am and dealing with things which leave me in awe. I only have to switch on the news to consider myself insanely lucky.
It isn't however all doom and gloom. In the months since Margaret I have graduated (on time) with a 2:1, gone on holiday and many nights out, lost 2.5 stone, been interviewed for the newspaper and on the radio, kept up this blog with amazing celebrity endorsement and lots of lovely readers, raised over £4,000 & set up my own business. It does give me great hope that despite the fact I don't like what I see in the mirror, if I do have Margaret forever I will still achieve and do everything I want to. And you never know, in a months time when I see my consultant, I could be writting a Bye Bye Margaret post.
Lots of love
Gabi xxx
Friday, 17 October 2014
The Big 2.3, Toby's Birthday & PreOp
Hi everyone,
So since my last fairly long update I have been kept very busy!
Mainly by my Kickstarter project, which I explained previously. In one of the most stressful 30 days of my life I have managed to raise an amazing £4,000 to help further my new business, Chroma Stationery. The response has been so great and I am overwhelmed with the kindness of friends, family and complete strangers.
The past few weeks have been hugely stressful and an unexpected emotional rollercoatser. One day I was worried sick that I wouldn't meet my target or that I had offended people, having sleepless nights. The next day I would receive amazing feedback, a generous pledge or a high profile share and my mood would be lifted. Kickstarter has taught me many things, good and bad but it has made me realise the huge kindness and generosity of people out there. I have had lovely emails and insanely high donations from people I have never met or old family friends. Each pledge no matter how big or small meant the absolute world. Some wonderful friends even thew an event to raise the profile of my Kickstarter campaign and bring in some money. If anyone still fancies pledging some money, the project will still be live until October 20th! https://www.kickstarter.com/projects/110560545/chroma-stationery
The stress of the experience has taken its toll though and I feel like I need a weeks holiday! The support of some of my amazing friends and brothers has been incredible and a special thanks to my Mum and Dad for their huge, huge support throughout the whole process.
This month also happened to be my 23rd birthday! Or the big 2 3 as I came to reference it. I had such a lovely day, spending it shopping with my Mum and generally chilling out! That evening I went out for a curry with some friends, all 26 of them! The contrast from my birthday last year was huge and I loved being surrounded by my favourite people in the world. The end of September also marked Toby's 1st birthday, an exciting day for everyone, as you can image. I even sung Happy Birthday to the very bemused looked dog.
I have also managed to officially lose 2 and half stone!! Something I have worked so hard at. For years I have tried and failed to shed the extra pounds, largely but not entirely down to being poorly and on/off steroid treatments. Being able to finally start to be happy with how I look and wear the clothes I want to wear is a novelty I am yet to get over.
But back to some Crohn's news for you all! Yesterday I headed for the local hospital for an appointment with my Stoma nurse. I have been having issues with the skin around Margaret becoming really sore. Due to my lengthy allergy list and sensitive skin I'm not surprised the skin is starting to have enough of being covered up with a big adhesive "flange" (eww). It has ended up turning an angry red colour, covered with little red spots some of which bleed, which isn't very pleasant. Last week after putting up with it for a while and treating it myself I decided enough was enough and called for an appointment. Luckily the stoma nurses know what they're doing and sent me home with a new type of bag, different wipes and powder to dry the area. Lets hope it starts to feel better soon!
I then had my pre-op for the colonoscopy I am having next week. Normally you don't need a pre-op before a colonoscopy as they don't really sedate you, however, due to past experiences I am being pretty much knocked out. The sedation required means I had to trot along to an appointment, where they measure things like your blood pressure, weight and height as well as swab your nose and throat for any infections... lovely! The waiting room at this place was pretty grim and depressing. After filling out a lengthy form (something I of course enjoyed) I headed in to see the nurse. She looked vaguely familiar but the amount of time I have spent in that place thats not really surprising! Turns out she remembered me too, from treating me on the hospital ward nearly two years ago - due to my youth compared to the other patients apparently. After ten minutes in there I was declared fit for "surgery" and sent packing ready for next week.
I will of course, update you all over the next with how they colonoscopy goes!
Love,
Gabi xxx
So since my last fairly long update I have been kept very busy!
Mainly by my Kickstarter project, which I explained previously. In one of the most stressful 30 days of my life I have managed to raise an amazing £4,000 to help further my new business, Chroma Stationery. The response has been so great and I am overwhelmed with the kindness of friends, family and complete strangers.
The past few weeks have been hugely stressful and an unexpected emotional rollercoatser. One day I was worried sick that I wouldn't meet my target or that I had offended people, having sleepless nights. The next day I would receive amazing feedback, a generous pledge or a high profile share and my mood would be lifted. Kickstarter has taught me many things, good and bad but it has made me realise the huge kindness and generosity of people out there. I have had lovely emails and insanely high donations from people I have never met or old family friends. Each pledge no matter how big or small meant the absolute world. Some wonderful friends even thew an event to raise the profile of my Kickstarter campaign and bring in some money. If anyone still fancies pledging some money, the project will still be live until October 20th! https://www.kickstarter.com/projects/110560545/chroma-stationery
Some of my recent notebooks!
The stress of the experience has taken its toll though and I feel like I need a weeks holiday! The support of some of my amazing friends and brothers has been incredible and a special thanks to my Mum and Dad for their huge, huge support throughout the whole process.
This month also happened to be my 23rd birthday! Or the big 2 3 as I came to reference it. I had such a lovely day, spending it shopping with my Mum and generally chilling out! That evening I went out for a curry with some friends, all 26 of them! The contrast from my birthday last year was huge and I loved being surrounded by my favourite people in the world. The end of September also marked Toby's 1st birthday, an exciting day for everyone, as you can image. I even sung Happy Birthday to the very bemused looked dog.
I have also managed to officially lose 2 and half stone!! Something I have worked so hard at. For years I have tried and failed to shed the extra pounds, largely but not entirely down to being poorly and on/off steroid treatments. Being able to finally start to be happy with how I look and wear the clothes I want to wear is a novelty I am yet to get over.
But back to some Crohn's news for you all! Yesterday I headed for the local hospital for an appointment with my Stoma nurse. I have been having issues with the skin around Margaret becoming really sore. Due to my lengthy allergy list and sensitive skin I'm not surprised the skin is starting to have enough of being covered up with a big adhesive "flange" (eww). It has ended up turning an angry red colour, covered with little red spots some of which bleed, which isn't very pleasant. Last week after putting up with it for a while and treating it myself I decided enough was enough and called for an appointment. Luckily the stoma nurses know what they're doing and sent me home with a new type of bag, different wipes and powder to dry the area. Lets hope it starts to feel better soon!
I then had my pre-op for the colonoscopy I am having next week. Normally you don't need a pre-op before a colonoscopy as they don't really sedate you, however, due to past experiences I am being pretty much knocked out. The sedation required means I had to trot along to an appointment, where they measure things like your blood pressure, weight and height as well as swab your nose and throat for any infections... lovely! The waiting room at this place was pretty grim and depressing. After filling out a lengthy form (something I of course enjoyed) I headed in to see the nurse. She looked vaguely familiar but the amount of time I have spent in that place thats not really surprising! Turns out she remembered me too, from treating me on the hospital ward nearly two years ago - due to my youth compared to the other patients apparently. After ten minutes in there I was declared fit for "surgery" and sent packing ready for next week.
I will of course, update you all over the next with how they colonoscopy goes!
Love,
Gabi xxx
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