November/ December 2007
Within a week my husband was discharged from hospital and getting a lot of support and help from a crisis support team, our GP and a psychiatrist. He was getting help to come off the drink and was also put on a course of anti depressants. My mum was a constant support to him and as he was living with her whilst i was in hospital she spent many an evening talking to him and trying to help him get through the hard time he was facing. It wasn’t until months later that i was told the true extent of what he went through as my mum had tried to shield me as much as possible as she knew i was fighting a hard battle of my own. My mum was and still is my Hero, not only was she by my bedside everyday but also looking after my husband and visiting her own Mother who was in a nursing home due to having Alzheimer’s, all this happening just 18 months after my Father had passed away suddenly, i still don’t know to this day how she kept so strong.
My time in hospital was brightened up by two amazing ladies called Janet and Pat. They were both a lot older than me, Janet being in her 50’s and Pat being in her late 70’s, they were both in for abdominal surgery and had already been on the ward for 8 weeks when i arrived. I immediately became friends with them and the support that i got from them i will never forget. My consultant and surgeon came up with a plan for me, they would give me injections of Octreotide daily ( this was to try to bring my stomach secretions under control to give the fistulas a chance to heal) they would give me a central line and drip feed me extra nutrition to help me to gain weight and in turn to help with the closure of the fistulas. It was now just a case of waiting, sitting day in and day out being drip fed, stuck with needles and what almost felt like being force fed high calorie, high fat foods. While my friends were put nil by mouth and being fed intravenously i was sat in bed being brought fast foods, cakes, crisps and sweets.
As the days went by my bond with Janet and Pat got stronger. When we needed to have bloods taken or injections or just when we were low we were there for each other, sat by each others bedside holding hands and willing each other on. We would chat for hours about our families and good times that we had. A bed became available by my side and an elderly lady in her 80’s was brought in, she was very frail and bed ridden but as we had with each other me, Janet and Pat made her feel comfortable and we soon became good friends. These three ladies were the people i spoke to first thing everyday and the last thing every night, there were many evenings the nurse would come in to tell us to keep the noise down as we would be sat laughing at each others life stories.
It was November 5th ( Bonfire night) we all woke bright and early and feeling a little better than we had the previous few days.The night before we had been discussing how we craved for a cooked breakfast but the only way to get one was to go to the hospital canteen. We decided we would go together, even if it took us an hour to walk the long corridors to get there we were going and that was that. Ruth the lady next to me was bed ridden but we promised to bring her a cake from the canteen. So off we set like three Musketeer’s, each of us with a drip stand, Pat had a Vac machine on her wounds and then there was me and Janet with catheters and ostomy nightbags, we had thought in advance at how unappetizing it would be for people to be sat eating their breakfasts with us sat next to them with bags full of wee and poop but that was easily corrected with a few ” Bags for life” shopping bags that Janet had brought into hospital and after all how more appropriate could you get?! I cant even begin to imagine how we looked walking down that corridor but for the first time in a long time i felt like fighting, if these ladies who id only known a matter of weeks were unwilling to let me give up then how could I.
That evening after visiting time had ended me and Janet decided to take a walk outside to see some of the fireworks that were being set off by houses near to the hospital. We both stood in the cold night air and talked as the fireworks lit up the night sky, we both talked about how our illness had affected us and i told her of the struggle i was facing with other parts of my life including my husband, she had become like a second Mum to me and in those following weeks she would become a rock of support for me. The following day a nurse came to Janet and asked her if she would move beds into a different part of the ward and of course without a seconds thought she said no, not unless Georgie and Pat can come with me, we all stood together and tried to explain that together we were keeping each other going and we had built such a bond that we couldn’t be separated, of course the nurses were not happy about this and although some may argue the fact, over the next few days we believe we were made to feel uncomfortable about the whole situation.
During the next couple of weeks i went through numerous tests, barium meals, X Rays, CT scans, MRI’s and Fistulagram’s but after each test i knew i would be heading back to the ward with my friends awaiting me, i knew by these ladies supporting me i was easing the pressure off my mum so she could focus a little more on my husband and my Nan, but the biggest thing for me was that these ladies knew exactly how i felt and what i was going through.After a few days all the results from my tests were in and a meeting was set for me with my consultant, surgeon and family. I had gained no weight from the copious amounts of food and intravenous feed i was given, my blood results had not improved and the tests had shown numerous problems with my intestines.I was then told by my surgeon that she had no alternative but to operate on me a second time, she could not give me much detail on what was going to happen as she wasn’t sure entirely what she would find when she opened me up. I was devastated, over the last few weeks i had talked myself into believing i wouldn’t need more surgery. The date was set for December 4th…….just 10 days away.
Id like to dedicate this part of my blog to my two amazing friends Janet and Pat. If it wasn’t for your love, support and encouragement i wouldn’t be here today to share my story. You both hold a special place in my heart, thank you xxx
Thanks for taking the time to read my blog everyone, it really does mean the world to me. As always all questions and comments are welcome.
Keep Well Guys, Love Georgie xxxx
September / October 2007
With every step i took down that aisle the more determined i became and after what seemed like a life time i arrived at the alter. I was guided to a pew by my friends sister so that i could sit down, i was totally exhausted but relieved and very happy. The church service was beautiful and emotional but it felt good to have been a part of it and mainly to be there for my friend. After the service there was going to be a wedding breakfast served in the form of a buffet and although there was a car to take all the bridesmaids to the venue i decided to go in my mums car with her and my husband. I was so physically drained by the time we got there that i needed to use the wheelchair once again, it felt a little easier as i knew people wouldn’t be looking at me as much, instead they would be focused on the newly wedded couple.There was a fantastic spread of food on but i couldn’t face anything although i think part of it was me being too scared as i knew once i ate my stomach would begin to work which obviously would in turn lead to my bags filling up. I was made comfy at the table and sipped on a small glass of juice. I was able to sit through the speeches and was totally taken back when i got called up by my friends to receive a small gift. My friends son ( My Godson) came to me and offered to help me walk the few steps to my friend and her husband. At the time my Godson was only 8 years old and although we had always been very close i was just overwhelmed with emotion that this little boy would come to my aid and quietly say dont worry auntie Georgie, this moment and show of love and support will stay with me forever. Once the wedding breakfast was over there was a couple of hours break until the evening party. I decided to go home for a little bit to get some rest and change my clothes ready for the evening ahead of me but in reality it didnt happen that way and after just a half an hour at home i was in bed exhausted and in pain. I still feel disappointed at myself for not making it to the party but looking back on that time i am amazed that i even made it to the church.
Over the next seven days i began to once again become ill, i was in constant pain with my stomach, i wasn’t eating and i could only get out of bed with help and even then it was to sit on the commode.It wasn’t until the 4th of October that the reason for the pain became apparent It was early evening and i woke from a nap covered in liquid, it was a dark green colour and had a smell of feaces, immediately i checked my bags but they were stuck into position, it was only then that i noticed a new fistula had popped open on my tummy and was what i can only describe as spurting a fountain of liquid continually all over me. My mum quickly phoned the nurses and they came immediately After spending a good two hours by my side and managing to apply a small stoma bag over the fistula they left as the following day i had an appointment with my GI.
It was Friday 5th of october and i had an appointment at lunch time to see my GI and show her the new fistula, i knew deep in my heart that it wasn’t good and paired with how ill i was feeling i knew it would be bad news. I was weighed upon arrival and once again my weight had plummeted by a stone, i was called into my consultant and told that she wasn’t happy with my blood work, the new fistula and the weight loss and she broke the news to me that she was getting me a bed in hospital and i would need to go in asap. I’m not going to lie, i totally broke down, i can honestly say that on my journey so far there have only been a handful of times that ive had a melt down and this was one of those times.I was begging her and pleading with her not to send me back, i was promising that i would try harder and force myself to eat but not to send me back to hospital as i would die if made to go in. I felt like this was the end of my journey, i couldn’t take anymore pain and suffering and just wanted this evil disease to leave me alone. No matter how much i cried and begged, my consultant wasn’t budging on her decision.Within a matter of minutes a nurse entered the room and informed us that there would be a bed ready for me by 8am Monday morning so with that my consultant agreed that i would be allowed home for the weekend……..Little did i know that after just two weeks at home after a seven month stay in hospital i would be spending another horrific six months in hospital with more surgery, complications and the start of the break down of my marriage. After believing this would be the beginning of the end of my journey it was in fact just the beginning………
Sorry for the long delay on this new post ive been really busy the last couple of months with hospital appointments etc but im now hoping to start my regular blogs once again. Thank you all so much for following my blog and your continued support, it means more than you will ever know.
Keep well guys, Much love, Georgie xxx
September 2007
September the 21st soon arrived, i had been practicing my walking and i was eating fairly well, i still had the fistulas draining from my stomach and i was still so very thin but i was off the TPN and told i could finally go home, after nearly 7 solid months in hospital. Its hard to put into words how i felt, i was excited and of course very happy but i also felt a little lost, worried and scared. I had spent 7 months in a little bubble in my own room with just my visitors and hospital staff for company, i felt afraid of the outside world and the people in it, what would people think when they saw me? what if i became so ill and needed assistance straight away? My safety net was being taken away from me. The hospital had set up for the district nurses to visit me every day at home to keep an eye on my progress, this made me feel a little better.
It was really emotional saying goodbye to the nurses and doctors that had looked after me for so long, they had become a part of my life and i couldn’t imagine how i was going to get through the next few weeks without having them by my side every day. My mum arrived and had parked the car right outside the hospital doors which meant i only had a short walk to the car, i had made my mind up a few days previous that if i was leaving hospital i was going to leave walking out of the doors. I said my last goodbyes and linked my arm into my mums, it took a while but after some slow shaky steps i made it to the car. We soon arrived home and my little dogs were there to greet me, i was still having a hard time staying awake for long so soon needed a nap. It was so nice to get into my own bed knowing i could get up when i wanted too, go to the toilet when i needed to and have a cup of tea whenever i was thirsty, these may seem like normal things but after being in hospital for so many months being told when to sleep, eat and wake it felt like a breath of fresh air I soon settled into being back at home although i did try to keep some of the routine in place as it seemed to help my body know what it was doing. I had a great team of district nurses coming to me everyday to help me change my bags and they would also change the packing in my wounds that were still open after 5 months.
My best friend came to visit me with the bridesmaids dress that she had made for me, it was a lilac colour with lovely details made with beads on it, she had also got a little jacket made for me to wear with it as she knew how upset i felt by the way my body looked. My bones and in particular my spine was very noticeable but i tried it on and felt reasonably comfortable in it. It was 5 days until her wedding day and i still needed some shoes and a wig, my hair all but a few little tufts had fallen out, i didn’t like how i looked but more importantly i didn’t want to look such a mess on my friends wedding photos that she would have for the rest of her life.The following day i asked my mum to take me to look for a wig, we phoned around a few places before setting off as i knew it was going to be tough going just to visit one or two shops. We struck lucky in a town centre shop not far from where i live and we made our way down. We walked into the shop and i immediately saw a wig that i liked, it was dark brown, just below shoulder length with a nice fringe at the front ( apparently a fringe in the states is called a bangs?) but the thing i loved most was that it was straight. My whole life i had wanted straight hair and now in an awful turn of events that’s exactly what i was going to get. I tried the wig on and looked into the mirror, i was so happy with the way it looked, it didn’t feel any different from what my own hair had and for the first time in a long time i felt confident.
29th September 2007
So it had finally arrived, the day i had been working towards for so many months was here, it was to be the day my Bestfriend got married and i would do the honour of being her bridesmaid. Of course the first thing i needed to do was to change my bags when i woke that morning, with the nurses help it didn’t take too long but i was very nervous of going out and my bags leaking especially with it being such an important day. My mum had brought me some very large plastic knickers that i could pull right up to try and add a little more protection in case my worst fear happened. My mum put me a little makeup on and helped me into my little dress and jacket. I felt okay and quite comfy compared to how i thought i would feel so i went to look in the mirror. I hated the sight of the person looking back at me, i was so very thin it looked like my skin was just pulled over my skeleton, i was extremely pale and i had no hair. My mum came in and helped me to put my wig on telling me i looked lovely, to my mum i was pretty, of course i was, i am her daughter and no matter how bad i look she will always tell me how pretty i am but on the inside my heart was aching, how could i go to church in front of so many people looking like what i could only describe as a freak.
The time was ticking by and my mum persuaded me to get into her car and that once i got to the church i would feel better, of course this want the case but i knew that no matter how bad i felt inside and out i needed to be at my friends wedding. I’m not going to lie, it took me all of the courage i had to get into that car and head to church. When we arrived i spotted a few of my friends family and they came down to the car to greet me, my husband got my wheelchair out of the boot and helped me into it. I hated the way people were looking at me, i know they meant no harm and were in fact feeling sorry for me and all i had been through but it really didn’t help how i was already feeling. Shortly after we reached the church door my friend pulled up in a fantastic car with her dad and she looked totally amazing she made her way up to me and gave me a huge hug telling me how happy she was that i had made it and that i would be by her side. I had made a promise to myself while in hospital that if i was going to walk with her down the aisle then i would do it properly which meant no wheel chair. My friends sister was her matron of honour and she offered for me to link her so i wouldn’t be walking with no aid. The church organ began to play and we took our places, i was so very nervous that my hands were sweating and i was praying with every step that i took that i would make it to the end of the aisle……….
Thank you to everyone that takes the time to read my blog, im sorry this one has taken me a while to write as i’ve been having a really hard time of it these past couple of weeks but i feel focused and ready to carry on now so i hope you all join me in the rest of my journey.
Keep Well Guys, Much Love, Georgie xxxxxxx
August/ September 2007
As i began to feel a little better physically my mind was taking a turn for the worst, i found myself becoming very tearful at the slightest of things, luckily the doctors and nurses noticed this and got a psychologist to come and see me. Id never believed in them and that they could help but it really did, i could talk openly without the worry of upsetting anyone.
Physically I was doing better, i was eating well on the soft food diet and the combination of that and TPN meant that i had gained a stone in weight, i was still only five and half stone and in a lot of pain through being so thin but i was making progress. The TPN was being reduced as i ate more everyday. Because of the Malnutrition and trauma that my body was going through i had lost the majority of my hair and was finding it very hard to deal with, my surgeon had suggested a wig that the NHS would provide but i refused it ( anyone who has seen the NHS wigs will know how truly awful they are) My mum suggested we buy a wig for me when i got home if it made me feel more comfortable. It was real tough being only 26 years old and looking and feeling such a mess, No hair, weighing just over five stone, pale from the anemia and not to mention the two bags on my abdomen and a hickman line in my chest, life wasn’t meant to be this way, my friends were all in jobs and had boyfriends or husbands, going out clubbing etc and here was me looking like a weird kind of E.T ( E.T the fantastic 80’s movie with the little alien).
Besides all of that i was making fantastic progress in my mobility and had even managed to go up two steps on the hospital stairs, this was something that i needed to do to be allowed home from hospital, all in all i was getting somewhere. My surgeon came to see me and explain that all being well i would be allowed home on the 21st of September but only if i could manage without the TPN and that i kept myself mobile. She was getting the wheels in motion to allow me home, this meant that social services would come into my home and put all the equipment in that i would need, including a bath chair, a perching stool, a commode and a trolley. I felt a little disheartened to know that i would need these things but i was willing to put up with it to get home to my family. She went on to say once the equipment was in place i could go on day release home as i had been away for so long and it was a big step for me, this gave me a much needed boost. I phoned my bestfriend to tell her the good news and all being well i would be with her on her wedding day the 29th September.
The following days went by pretty fast as i was working hard towards my new goal, my home had been fitted out with all the equipment, i was off the TPN and managing to walk a little. It was a Friday afternoon and my surgeon came to tell me i was allowed home for the afternoon on Saturday or Sunday. I was so happy i felt like i was going to burst, i couldn’t wait to tell my husband and Mum the good news. We arranged it to be the Sunday and that i could leave after 10am but i needed to return by 6pm. I was so happy and excited at the thought of seeing my home again and most of all my little dog Boo, i wondered after 5 and half months of not seeing me that he would remember who i was. Along with the joy and excitement came a feeling of anxiety and worry, what if something went wrong? What if i suddenly got ill? i was being taken out of my comfort and “safe” zone, my mum tried to comfort me and reassure me that all would be ok and of course i trusted her totally but that little niggling feeling just wouldn’t go away.
Before i knew it Sunday had arrived, i did the usual routine of getting up, taking my medication and having a wash, it only then hit me that i hadn’t any clothes or shoes, to be honest i was so much more comfortable in slippers and a nightgown that i quickly decided to stay as i was and just put a dressing gown over the top, after all i was only going into the car and then into my house and it was a warm day. My mum and husband arrived at 11am and helped me into a wheelchair, i could walk a little but not far enough to get to the car. Luckily my mum had thought ahead and had arranged some pillows in the car for me to sit on and hold. It was such a weird feeling driving out onto the roads that i hadn’t seen in months, i had kind of forgotten about the outside world and that life goes on, the roads were familiar but felt so different, its so hard to describe in words.
We drove up my street and to my house, i had longed for this day for so long and couldn’t wait to get inside. My mum helped me up to the door and into the living room i sat in the chair and tried to take it all in, it was so bizarre to be back at home. My mum got me comfy and let our dogs Boo and Ben in to see me. I held my breath hoping that they would recognize me, as soon as they saw me they were trying to get to me, licking me all over and making little crying noises, their tails were wagging so much i thought they were going to fly off!! I was so overjoyed that i couldn’t help but shed a tear, they had remembered me and were more loving than ever, they both lay by my feet and seemed content that Georgie was home.
After spending an hour or so sat in the lounge i began to feel a little tired, i hadn’t had much time alone with my husband and we decided to go into our room and have a lay down. I wanted him to cuddle me and comfort me and tell me how happy he was that i was home, i didn’t really get any of this, he seemed distant and really low, i wanted to talk and make things better but i didn’t know where to start. I eventually fell asleep and my mum woke us at 4pm i was annoyed at myself for spending a couple of hours of my freedom asleep but i had needed to admit defeat as it was all too much. I had a little soup and watched some television but before i knew it, it was 5.30pm and i needed to head back to hospital. Just the thought of going back filled me with dread and what was meant to be a day of joy was beginning to feel like a form of torture, after giving me some freedom back and my family, home and my dogs it was being taken away again. We headed back to the hospital, in the car i couldn’t help but to cry, i tried my best to keep it in as i didn’t want to upset my mum but no matter how hard i tried it just came out. We pulled up in the car park and my husband went to get a wheelchair, my mum took my hand and told me it wouldn’t be long until i was home for good. The moment that my mum pushed me up that corridor to the ward will stay with me forever, i would of done anything in that moment to turn around and head back home, if only!! I hadn’t even got the strength to walk a couple of steps let alone turn and run, i was back, back in my own personal prison……
Thank you all for your continued support and well wishes it really does mean the world to me, until next time…
Keep Well Guys, All My Love Georgie xxxx
August 2007
I felt like i was in a vicious circle, i needed to eat and manage to sustain myself without TPN so that i could go home but as soon as i ate my fistulas would work overtime, this in turn led to my bags leaking and causing me horrific pain as i lay for hours and hours whilst trying to get the wound management and stoma bags to stay. I was feeling really low and i wasn’t sure how to get around this next lot of obstacles.
I was heading into my fifth month in hospital and beginning to wonder if i was ever going to get out of there. It was a Sunday morning and i was lay on my bed with my TV on, i never really watched it through the day but always had it on to help to block out the constant noise on the ward. There was a male Vicar that i had seen quite regularly visiting people on the ward but id only ever said hello as he passed by my door. Today was different, as he made his way up the corridor i decided to ask him into my room. Id never been a religious person but since losing Dad and becoming married i had started to attend my local protestant church. I still don’t know if i really “Believe” but i do hope that there is something more out there other than this evil earth im currently living on and of course i hoped that one day my Mum and Dad would reunite whether it be in heaven or some other Magical, calm and loving place. This isn’t the part of my blog where i preach to you telling you that God is great and everything is wonderful because i cant do that but for me the church, well in fact this Vicar called John was. He sat and talked to me for quite sometime never once mentioning the Bible or God or anything religious he was just an outsider who could give me his views and opinions on things and offer me comfort, i found this to be a great help as when i was really down i would only need to call on John and he was there. There were many times to come on my journey where i would turn to John for support and if nothing else i had made a fantastic friend for life.
The days were so long in the hospital, well everyday felt the same, the days had turned into weeks which quickly became months that had all molded into one, of course there are certain days and dates that i will never forget but for the most it was the same routine everyday. I was doing well with my eating and had gained a couple of pounds, i was still on TPN but my surgeon hoped that in the coming weeks i would gradually have the feed reduced. I was managing to get out of bed and walk around my little room, everyday i was beginning to get more steady on my feet but the constant bag changes were getting me down. I was trying different bags and techniques with the nurses to try and find a way to make the bags stay, it was just trial and error but i hoped i could over come this as i had only seven weeks until my Best friends wedding and even with all the odds against me i was going to make it to that church.
The night time in hospital was always worse, i suppose most places are worse in the dark but laying there listening to people shouting out in pain or crying for family was truly horrific. There was one night in particular that with stay with me for the rest of my days. There was a very poorly man in the bay next to my room i had asked the nurses how old he was and they told me he was in his forty’s of course they couldn’t go into any details but with my room being so close to the nurses station i couldn’t help but over hear things that were being said, this gentleman had general surgery that for the majority of people would be routine but it hadn’t gone well for him and he was in fact losing his battle for life. It was 4am and i was lying with my TV on the news station, i didn’t have the volume on because of disturbing people but i liked the light that lit up the room, it made me feel a little more safe, comfortable. On to the ward came a lady and two girls who i presumed to be the gentleman’s family, i heard some talking and a lot of crying, it was awful lay there knowing that someone only feet away was fighting for his life, his family were quite understandably very upset. I couldn’t help but lay there and cry it had only been a couple of weeks ago that i was fighting that same fight and my family praying for me to get through, sadly this gentleman lost his fight and passed away at 5am with his family and John the Vicar by his bedside. There’s nothing that can quite prepare you for that feeling when you see a fellow patients family leaving there bedside after they have passed on. Of course i didn’t know this gentleman i didn’t even know his name, but i felt overwhelming sadness and sorrow. The nurses were fantastic with the family and also in giving this man respect and dignity, there was a vase of flowers that always sat behind the nurses station, this was the vase and Bible that would be placed at this mans bedside. It was awful to know that every time those flowers were picked up and carried away they were going to some persons bedside who had passed away, my room doors would be closed for five minutes as the porters came to remove the body. The nurses did this to try and make it less harsh and upsetting to other patients but sadly after nearly five months it was something that i would regularly see.
This all had a terrible effect on my mental well-being i would try my very best to not get effected by these events but that’s easier said than done especially being so ill and mentally drained for so long. After that particular nights events i began to cry a lot and feel more scared than i ever had before, the nurses became increasingly worried about me and requested for me to have a counselor to talk to, i agreed. My body was physically showing signs of improvement, all be it very small it was in the right direction but my mental health was beginning to deteriorate………….
A particularly hard post to write. Sorry for the depressing parts of the blog but as always i want to share not only the good parts of my journey but also the very sad parts that all have a place in my story. I promise the next blog will be more uplifting, thank you all for taking the time to read and your on going support it means everything to me.
Keep Well Guys, All My Love, Georgie xxxx
July/ August 2007
I was put into a wheelchair and taken back to my bed, id made it to the very end of the ward but found myself struggling with the return walk, i really didn’t mind getting in the wheelchair as i was so proud and amazed at myself for walking at all. I asked the nurses not to mention the fact that i had got out of bed and walked to my family as i hatched a plan to get strong enough to walk down the corridor to meet them as they walked in at visiting time, of course this was going to take time but i really wanted to see the look on their faces.
I was doing well with my soft food eating regime, i had got an appetite but struggled to eat much quantity, it really didn’t help that the hospital food was so bland and nearly always looked unappetizing. The food was always cold and the selection for people on soft foods was very limited. I couldn’t find much complaint with the soups as they were edible and some were actually quite tasty but that’s as far as it goes. I was offered salads and fruit regularly which obviously doesn’t fall into the soft food category and as anyone with Crohns knows fruit, veggies and salads are our worst nightmares. There were even a few occasions that i was offered Curry, yes you heard that right Curry, how on earth the staff of the NHS expect people who suffer with IBD to eat any kind of spicy food let alone Curry is totally beyond me. Many meal times would come and id refuse to eat, of course this brought the doctors to my bedside telling me if i wanted to get better i needed to start eating, one day i asked the doctor if he would like to eat the lunch that was sat in front of me ( watery mash potatoes, some kind of meat that i couldn’t identify and gravy that had dried onto the plate through it sitting in a warming station for god knows how many hours) his response was No, i proceeded to tell him that if he wouldn’t eat it then why should I? Someone who had been through major surgery and not eaten in months should not be asked to eat what i can only describe as dog food ( in fact my dog would turn his nose up at it and that’s saying something!). The only solution was to get my family to bring me my meals, this wasn’t made easy as the nurses refused to heat any food brought in for me for health and safety reasons, Seriously?! They were more than happy to serve me food that had been sat in a warming station on the ward for hours but they weren’t allowed to warm fresh made food up in the staff room for me. My Mum went on to spend a fortune most days on fresh ingredients and stand cooking me a meal that she would wrap in layers of tin foil or put into a flask and make a mad rush of the 20 minute drive to the hospital to give me my meals. As if she wasn’t dealing with enough with me being in hospital and so poorly for so long but also my Nan in a nursing home, no support from anyone including my Husband and then standing cooking me food on a daily basis, i was far from happy about the scenario but there was no other way to get any form of real nutrition into me, i needed to eat to sustain myself to come off the artificial feed (TPN) to get stronger and hopefully home and that most definitely wasn’t going to happen on NHS slop.
The start of me eating brought a whole new different complication to me. Way back when my wound blew open just 10 days after surgery i had formed fistulas, these hadn’t been apparent until now as on the TPN i had no food passing through my intestines whatsoever but after only a couple of days of soft food my stomach began to leak. It sounds really gross but the only way i could describe it is a sick like mixture, food that hadn’t gotten far enough around my intestine to be properly broken down, it basically came out pretty much the same as it had gone in. The stoma nurses were asked to take a look at me and they came up with an appliance called a wound management bag, its pretty much like a drainable stoma appliance but on a lot bigger scale, because of the size of my wound the appliance i need would be twelve inch long and six inches wide. I had only been caring for my Ileostomy for a few weeks and now i would need to learn how to care for both the stoma and the wound management bag.
I began to feel very low over the coming days and weeks, i was eating well through my mums home made soups and dinners with added yogurts that she would bring but the more i ate the more that would come out of the fistulas on my tummy. I was getting around a little more by getting myself out of the bed and taking a few steps a day with the physiotherapists but between the mixture of eating and moving around my bags started to leak more and in turn my stomach was becoming red and weepy. I alone could not get the appliances to stick and stay on my tummy for more than a few hours which meant i would need to call upon the nurses to help me and in some cases do them entirely for me. They would go maybe three or four times a day each time taking between one and two hours to change, of course this put added stress onto the already under staffed nurses which made them get quite stroppy at times when i pressed my buzzer to tell them my bags had gone and i was lay in a puddle of mess. This made me very upset and depressed and at times very distressed. Don’t get me wrong some nurses were fantastic and did everything they could to ease my suffering but on the other hand there were some really heartless nurses who would make me feel like a burden. My skin was breaking down on my abdomen due to the stomach acid and waste sitting on my skin, i can only describe it as someone had poured a kettle of boiling water onto my skin, the pain was incredible, way off the scale that i had ever experienced. The fistulas would continue to pump the waste out as the nurses would try to change the bags, wiping my skin of the acid liquid was horrendous I would take morphine to try and ease the pain but it wouldn’t do a thing, i really believed that it wants staying in my system long enough to take affect. I asked the nurses if i could take some Entonox (Gas and Air) as this had been the only thing to get me through my previous wound packing’s After a few days of coping with the bag changes with help of the Entonox i was told that i could no longer have it as it was costing too much. This sent me into hysterics as i knew i couldn’t face this pain anymore, i wanted to die, i had enough.
I told my mum when she arrived at visiting time that i was no longer allowed the Entonox to get me through this pain, she discussed all of this with the nursing staff and they went on to tell her they believed i was addicted to it, ( I have since done research into this and found that Entonox is none addictive and in fact a lot better form of pain relief to use especially when compared to drugs like Morphine that are highly addictive.) My mum asked if she could buy my own canister of the gas and air and the sister of the ward couldn’t see any problem with this, so my Mum paid nearly 200 pounds in cash to have my own entonox canister in my room, to use when doing my bag changes and wound packing’s Strange how when your paying for your own pain relief it being addictive is never brought into consideration again?! The next few weeks were going to be a real test of my courage and strength…….
As always thanks for taking the time to read my blog everyone, it really means the world to me. I would love to hear off you in your thoughts on Hospital food and pain relief. I hope you continue with me through my journey with crohns.
Keep Well Guys, Much Love Georgie xxxx
July/August 2007
On returning from my wheelchair trip to the outside world i felt refreshed, relaxed and stronger than i had in a while. It made me remember the little things in life i was missing out on. I had started to become institutionalized, it may sound mad and a lot of people will think that you only feel like that in prison, but this was my prison and what felt like my life sentence. I was being told when to wake, wash, drink and go to sleep, i had no control over my life whatsoever and i was determined to change that. It was one morning in late July when my surgeon came to see me to tell me she wanted me to go on a soft food diet, things like yoghurts, mashed potato and custard etc i felt a mixture of happiness and fear, what if it made me sick? what if it put me in pain? but on the other hand i couldn’t wait to have my first taste of real food, the first thing i had eaten in a whole 17 weeks. Its mad to think that the human body can survive on artificial feed going into your veins, totally bypassing your stomach and intestines. Over the last week or so i began to feel hungry for the first time in months, even though i was being fed intravenously my stomach was always empty, it was a really weird feeling.
My nutritionist came to see me at lunchtime and in her hand was an extra creamy strawberry flavoured yoghurt, she passed it to me and told me to “knock myself out.” “Go for it girl”. There really are no words to describe how good that yogurt tasted, my mouth was alive with the flavour, i couldn’t remember anything ever tasting this good before!! I managed just 3 teaspoons and i was full, ever likely after losing so much weight but i wasn’t sad at the small amount i’d managed to eat, infact i was quite the opposite, i was so happy and relieved to get such a huge obstacle out of the way, it may not of been an expensive meal in a fancy restaurant or even a delicacy but i can assure you that even to this day that was the best thing i had ever eaten.
The days started to go by with a little more ease, i had made some fantastic friends in the nurses and carers that were looking after me, a lot of them would come into my room for a little chat to tell me what they had done at the weekend or what their families were up to, they were like my new family, they began to get to know me and me them and it really was a wonderful experience to get to know so many people from so many walks of life. Of course i was still needing a lot of help but as the days went by i was getting a little stronger. I still had the huge wounds on my bottom from abscesses that needed to be drained and i was having them packed everyday but there was improvement, the wounds were getting a little smaller and had begun to heal from the insides out, my stomach also showed signs of improving and beginning to heal. My hair was still falling out at a rapid rate and it was beginning to look very thin, i couldn’t afford to sit there and think about all the downsides i needed to pick myself up and fight with all my might to get up and onto my feet, i continued to do my daily exercises in bed and i started to feel my muscles becoming stronger. I was determined to be my best friends bridesmaid and one way or another i would walk down that aisle.
My own marriage was a totally different story. My husband spent the time by my bed reading the paper or watching the TV, there was very little communication between us and no affection at all. We had taken the step of giving up our flat and putting things into storage, he had moved into my mums house as he couldn’t afford to keep the flat going on his own. My mum told me he was going out a lot to the pub but she thought it would do him good being around his friends, people who he could talk to that weren’t linked into the whole situation. I knew deep down in my heart that things weren’t right but i was using all my strength to get better, i didn’t feel i could afford to let my mind wander onto other problems, i needed to focus and get myself well before i could deal with anything else.
It was a monday morning at the beginning of August and as usual the physiotherapists were on their ward round. They came by my bedside and as always asked if i wanted to get out of bed and try to stand. I had been putting them off for a couple of weeks now as i didn’t feel strong enough to sit up let alone stand but today was different, i’d made my mind up the night before that today was going to be the day i stood. After 19 weeks of lying in bed i had finally plucked up the courage to attempt to stand, i’d been doing my leg excercises and felt confident that i could do it. There were 3 of them which was unusual but it made me feel extra safe, they unscrambled all of my drips,feeds and catheter and hung them on a portable drip stand, i sat on the edge of the bed with one lady each side of me and a lady standing in front of me. My head spun as i sat up, a feeling like i was on the waltzers at the fairground, this unnerved me but the nurses reassured me that it was a perfectly normal feeling. They placed a zimmer frame in front of me as i pushed myself with my arms up off the bed, i was standing!! I was very wobbly and my heart was pounding out of my chest but i was standing!! I began to struggle for air as i stood there, i knew it was psychological and i was in fact holding my breath but i couldn’t help it, i didn’t want to take a breath in, i had no idea why, maybe it was the unfamiliar feeling of standing, my legs shaking trying to bare my weight, my heart pumping? i didn’t know but i needed to sit down. They sat me down and placed the oxygen mask over my face and administered some oxygen, i was in fact having a panic attack, they lay me back down and eventually my heart rate returned to normal and i could breath again, it was a very scary experience that put me off trying to stand for the next few days.
By the friday i was anxious to try again, there was no way that i was coming this far and letting my nerves get the better of me.I sat and talked to the physiotherapists and they give me the confidence to try again. They once again unscrambled all of my drips,feed and catheter and arranged them on a portable drip stand, i took a big deep breath in as i pushed myself up off the bed and onto my feet, i was surprised that this time i felt i had more control over my legs, i was breathing properly and i felt steady. At the shock of the nurses and to myself i asked if i was allowed to take a few steps, they quickly responded with “if you feel ready then go for it”. So i did…… i didn’t stop at one step or even two, i kept going and going in a straight line all the way through the ward and passed the nurses desk, i heard a massive cheer and clapping as all of my nurses stood looking at amazement as i slowly but surely made my way passed the nurse station. I had never felt such an adrenaline rush and the feeling of overwhelming pride, i had done it!! I had taken my first steps after being bedridden for 19 weeks.
As always i would like to thank you all for taking the time to read my blog, there’s lots more to come and i look forward to your continued support as i take you through my journey with crohns.
Keep Well My Friends, Much Love Georgie xxxx
June/July 2007
I was on to the second week of my stay in special care.I was doing a lot better as the antibiotics were treating the infection and id had my feed bags changed from lipids to glucose, my itching had subsided and i was gradually getting my normal colour back instead of looking like a character out of The Simpsons. My nurses were hoisting me out of bed everyday and i was managing to wash myself all be it with help but it was a huge difference to how i had been the last 4 months.That morning my surgeon and her team of junior doctors came to see me like they did everyday, her junior doctors were fantastic they had been by my side since the moment i got rushed in, if i ever need a chat about things or to get more information they were always there with a smile and always gave me the information i had needed. She had come to see how i was doing and suggested that i should up my intake from just ice chips to sips of water and even an icepop thrown in now and again, I was so excited at the thought of icepops that i got my nurse to phone my mum to ask her to bring me some. Once again the nurses were so good to me and told my mum that she could bring quite a few icepops and they would put them into the staffs freezer for me, even these little things made me so happy.There was a girl a little younger than me that had some sort of surgery but i didn’t ask what but she was going to be in the bed next to me for a few days, we had little chats but not in much depth as she was still recovering from surgery but we were both hoisted out of bed every morning into the recliner armchairs and i would offer her an icepop, for the first time in months i was sat up chatting and enjoying sucking on the ice it was lovely and so refreshing.I felt like i was getting somewhere in my battle and my mood lifted. After two weeks in special care i once again said goodbye to all the fantastic nurses and was moved back onto the surgical bowel ward, it was weird to go back there like i had been away from home, it was certainly feeling like home after living in there for 4 months.
I was put into my own room (the room i left only 2 weeks before) and i continued to make progress. I had lots of bed baths during my time in hospital but up to this point i hadn’t had a bath due to the wounds being open and me having a hickman line inserted etc but the nurses wanted me to have a bath so i agreed. I once again needed to be hoisted out of bed, wheeled to the bathroom and hoisted into the bath, i hated this feeling of helplessness, i never thought that by the age of 26 i would need someone to bathe me but i had to admit defeat, what seems like an everyday task to well people was a huge thing for me and it sucked the life out of me. I was glad to get put back into my bed and the nurses were great even blow drying and brushing my hair for me, i felt a bit low because i thought i was doing so well and in fact i was, but i was trying to do things a lot quicker than i was ready for. As the nurse brushed my hair i was watching it falling out, not big handfuls but it was very noticeable and got me worried, one of the junior doctors was on the ward and came to speak to me.His name was Mark he was so kind and polite, he sat by my bed and explained to me that through the mixture of the drugs i was on to treat the crohns (Azathioprine), the malnutrition and the pure trauma that my body had been through was the cause of me losing a little hair, he told me not to worry and it would eventually right itself. I went on to explain how low i was feeling because my body was so weak and my muscles had wasted away and that i didn’t know how i was ever going to get back to how i was, how could i even stand never mind walk when i had so little muscle, He disappeared for a few minutes and came back with what i can only describe as two huge rubber bands, he showed me how to use them to strengthen my muscles in my arms and legs as i was lay there in bed, i went on to do these exercises every day 3 times a day, it would hurt and exhaust me but i was determined to get well and be able to walk behind my best friend down the aisle as she got married.
The next couple of weeks flew by, we were into the end of July and the sun was shining into my window, everyday was the same routine of being woken, washed, medications, blood tests and feeds through my line but i was feeling a little better.My blurred vision had gone and i could stay awake for a couple of hours at a time.My mum came to visit me on this bright sunny day, she came in the afternoon and along with her she brought me a raggy doll, she had named it “hope” and she would be my mascot so when i was feeling low i had something to hold “holding onto Hope”. I couldn’t help but cry as my mum handed her to me, my mum was looking totally drained, she not only had me in hospital and so ill for such a long time but my Nan (my mum’s mum) was in a nursing home due to having severe Alzheimer’s, my mum was visiting us both all the time and worrying, i could see that she was tired and had lost weight but she refused to leave my side even for a day. The nurse came and asked if i would like to go in a wheelchair and my mum take me a ride around the hospital, my mum was delighted and wanted me to do it so i agreed.
The nurses hoisted me out of bed into the wheelchair and made me comfortable, i was nervous, i have no idea why but i tried to put my nerves to one side and enjoy my time with Mum. When we left the ward my mum asked if i would like to go to the canteen and have some sips of iced water, so that’s where we headed. It was bustling with people and it was then that it struck me that this was the first time in 16 weeks that i had been around “normal people” well apart from doctors and nurses that is. It’s a weird feeling to know that for the whole time that my life had stopped, life had gone on. People sitting ,chatting and laughing with their friends and family. The smell of food and just the whole hustle bustle of the place hit me hard. There were some patio doors that were open and lead to the outside garden where people were sat eating their lunch and chatting. I told my mum to get herself something to eat, she said that she felt uncomfortable because i couldn’t eat but i explained that i never thought of food and i was quite happy with my iced water. She got herself a sandwich and wheeled me into the garden, it was Amazing!! For the first time in months i could feel the warm sun hitting my face and the gentle breeze through my hair, i cant describe or put it into words.My mum sat on a bench and ate her sandwich as i sat in my wheelchair watching a little bird eating crumbs off the floor, for them 15 minutes i felt free, free from pain, doctors and suffering. This really was………. “A beautiful day”.
Thanks for taking the time to read my blogs guys, it really means the world to me.Theres lots more to come and i would love for you to continue to join me in my journey.
Keep Well My Friends, Big Hugs Georgie xxxx
georgiewhitey 