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
October/ November 2007
My heart felt as heavy as a lead weight when i left the hospital that day. I tried to remain strong but the tears were flowing. On the journey home i was worried about how i was going to break the news to my husband that i was going back into hospital. Our relationship was already under immense strain and the guilt of me being so ill and away from home was consuming. During the five years that we had been together he had always more than enjoyed an evening out drinking and gambling but during the last seven months it had progressively got worse. He often arrived at my bedside smelling of alcohol and “in a world of his own”. Deep down i knew that me going back into hospital would be the final straw.
On arriving home i was exhausted both physically and mentally, i asked my mum to fetch me some clean pajamas out of my room so that i could try to relax and get more comfortable. After a good ten minutes my mum came to me and told me that she had discovered something in my room and that i should take a seat in the living room so that she could explain. I walked into the living room to find my mum setting rows and rows of empty liquor bottles on the floor, Vodka, Whiskey, Rum and so the list went on. In her search for my pajamas she had tripped on something sticking out from under the bed and on investigation she found all of the empty bottles, instantly it hit me like a ton of bricks that my husband was in fact fighting a losing battle with alcohol addiction. How could i be so blind not to see what was happening? How could i leave to go into hospital? How could i help him when i was fighting my own horrendous battle?
Moments later he arrived home from work and walked into a room filled with at least 25 empty litre bottles. His face had a blank expression as i went on to ask him why he had been drinking so much and when it had all started but even with the evidence in front of him he refused to admit he had a problem. That evening i sat for hours trying to talk to him but no matter what i said or did he just remained distant and unwilling to admit to any problem. I went to bed where i would spend the night crying and going through the days events over and over again, id had enough of life and trying to fight against what felt like an invisible force that was trying to break me and my family down.
The following day i called my husbands friend and asked him to pop by, when he arrived i sat down with him and explained everything that had happened the previous day in the hope that he would talk to him and to try and get through to him so that we could help him. They both went out in his friends car for a drive and after three hours of nothing i got a phone call from my husband admitting that he was an alcoholic and needed help, i was so relieved to hear him say that he had a problem because now we could work together and get him the help he needed.
When he arrived home i tried to comfort him and let him know that he wasn’t alone, my mum told him that she would go to the doctors with him and support him but he needed to understand that i would need to go back into hospital just 36 hours later. He agreed to this as he knew i needed help and desperately wanted me to get better.
The Monday morning soon arrived and we gathered my things for my stay in hospital. I was very self conscious of the way that i looked and so decided that i would wear my wig and i would attempt to keep it on and look as “normal” as possible. When i arrived on the ward i was lead to a bay with five other ladies in. They were older ladies but all seemed very nice, as i sat on my bed they all said hello. I could see that they were thinking of what could possibly be wrong with me and months later they admitted that they thought i had some form of cancer.The nurse came to book me in and i told my mum and husband to leave and get some rest and that i would be fine, my mother in law was on her way to our house to speak to them and so that he could explain to her what was going on. The next few days were really hard, it was hard enough being torn away from home and my family but the added stress and worry of my husband was beginning to get too much.
I had a visit off my surgeon who told me that she didn’t want to operate on me again as the risks were just too high and she truly believed that the route to making me better was to get me started on a biologic like Humira or Infliximab, but of course as anyone with the smallest bit of knowledge of hospitals and hierarchy knows the medics and surgeons did not agree and the really ironic thing was that my GI wanted me to have surgery and my surgeon wanted me to have medicine!! I would sadly spend the next few weeks lying in a hospital bed while the teams of consultants and doctors would fight over ” what was best for me”.
On the Eighth day of my hospital stay my mum arrived alone at visiting time. I instantly knew that something wasn’t right and begged of her to tell me, she called a nurse over that unknowingly to me she had been speaking to throughout the day. They both sat at my bedside and told me that a few hours earlier my husband had been taken into hospital, i was not to worry as he was ok and was getting the help that he needed. My mum then broke the news to me that she had found him that morning with a large amount of empty tablet boxes and empty bottles of liquor. My heart felt like it had been ripped out of my chest as i began to sob. I really cant put into words how i felt that day, an emotional wreck was an understatement and the guilt that i felt lay heavily on me, If only i hadn’t become ill……. If only i had noticed all the signs earlier……. If only i had never met him and put him through this whole ordeal……………..
This has been the hardest post so far for me to write, trying to put into words how stressed, angry and upset i was hasnt been easy. I know that this post is not so much about my life with crohns disease but it was and still is a huge part of my journey and making me the person i am today. Thank you all for taking the time to read my blog, as always all questions and comments are welcome and i hope you continue to follow my blog on my journey with crohns.
Keep Well Guys,
Much 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 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
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