Another stupid operation :(

The last few months have been the hardest for me, Stanley stoma decided to retract and ended up getting very sore skin as the bags wouldn’t stick as Stanley was so flat

i went to Oxford on the 18th February to have yet another operation to have my stoma refashioned, I got to the hospital at 7am (left my house at 330) and I was called into the waiting room and waited to talk to the surgeons and team.

i got given a gown and some very sexy stockings to wear, and waited til 08:30 to go into the prep room to have some general anaesthetic and then I woke up at 1030 an had a sip of water and a very gurgly stoma


I ended up going back into the ward and eating/drinking and seeing properly , I stayed one night and ended up being discharged at 1230 the next day

hopefully this was be my last operation (I say that a lot )

2 weeks of happiness 

I have an amazing boyfriend called Ashley, he lives 170 miles away from me and I don’t see him very much, he came down on the 6th June to see me.

We to the beach, butlins. Arcades followed up by a romantic stroll across the harbor , he met my whole family for my birthday and then on the Wednesday met some of my friends, 

We spent my birthday together, which was perfect, he spolit me so much, he brought me a necklace and a bracelet which ive fallen in love with.

On the Friday (12th) in the morning I had the doctors so we went to hospital and then got a lift for my stepdad to Taunton town and ate a massive subway, we got to the station at 1:30 and then we got a drink and sat down and waited for the train.we got on the train and waited two and half hours to get to his. We met his mum and his brothers girlfriend at the train station and then walk to the car.
throughout the week  that I was there we went and spent loads of time together, met up with friends and relaxed, every time he would make me smile, we went to the Woodlands and had nice walk and did so much,( can’t write everything as I’d be here all day) 
Today was really sad for me, I got on the train left him behind, I cried I always do when leave him, but il get to see him soon and when I do il love every minute with him 


The life of me :)

Hey, Im Levi

I am 21 years old and i live in a small seaside town called Minehead in somerset. i live with my mum (Denise)  step dad (Steve) and my siblings Milly and David. I am the eldest of four ( dad remarried and had a child called Naomi), Steve has 3 children also called Kelly,Kieran  and Libby.

my dad left my mum when i was 6 years old and he lives 25 miles away in Taunton, where he sees me and siblings once every week on a Sunday,  i was diagnosed with crohns disease, ulcerative  colitis and ITP, i know have had my 4th operation and now have a permanent bag for life ( which is amazing for me as im soo much better) through out my lifetime i have spent nearlly 11 months in hospital in the last 3 years and for four months of it i was moved to oxford ( john radcliffe) where my mum, steodpdad, milly and david have been my rock, it affected everyone so badly me being so ill, it really affected my sister and brother and still dos as everyone always ask how i am but never ask them, and i feel bad sometimes.

my mum and my stepdad havde done an amazing job with us, i met steve when i was 11 years old and he has made my mum so happy, i have never seen her this happy before and i love steve being around, he is now my carer and he does an amazing job for me, he takes me to evewrysingle hospital appointment and helps me when i need help with my ileostomy bag or ive fallen

every single person in my family has made a huge inpact in my life and im always thankful for what they do for me


in October i started talking to a very lovely kind hearted man called Ashley, ( he was currently with someone when we started talking ) we where friends at this point, everyday we text and spoke on face book until one day we started seeing each other, i met him in the December and fell in love with him ever since, Ive never met someone who can be just like me, into the same things and makes me feel like a princess, his family are amazing too, they make me feel part of the family every time i come up to Ashley’s and that makes me so happy as never been welcomed into someones family before as Ashley is my first ever serious boyfriend, 6 months later and were stronger than ever, i am  still so happy and that will never change


better be off now….. Lovesya all xxx

The recovering Part

So since I’ve been home all I’ve been doing is sleeping, walking around the house, making tea and lying on the sofa watching television, for the first three days I thought I was living the life but then i started getting bored and depressed as I couldn’t do anything as I had a water infection and was still in a lot of pain,  on the Saturday (week after I came home) I actually walked to the shops (which is about a three minute walk from mine) but I had my mum with me and it felt like I was walking and started getting a bit breathless so I sat on the bench and after a minute I felt fine so walked into the shop and got our stuff and walked to the Indian (which is three shops up) and sat down in there whilst my mum and brother where ordering their food as I can’t eat Indian. I sat there with a smile on my face thinking this is the biggest improvement I have made since being in hospital, I might have to walk with crutches but I felt soo much better for just walking and feeling the fresh air on my face

I walked home with mum and David and got home and just lied on the sofa and relaxed, it’s the small steps that help you get to the top, since my operation I have lost a bit of independence due to not being able to go out with my friends, can’t even bend down and  do the simplest things, but in the next few weeks I will hopefully have a bit of normality.

it will be my birthday on June 11th and I can’t believe I’m going to be 21, I am celebrating by going out with my family on the 6th for a meal at wetherspoons as without my family I don’t know how I would of coped being so ill and with their support they have helped me and If I didn’t of made it when I died in my operation I wouldn’t even be here celebrating my 21st . My lovely boyfriend is also coming down to my house for a week and then I’m at his for a week so I’m gonna be on top of the world when I see him

I will write my next blog after my birthday so I can tell you all about my birthday antics

much love 💕❤️💕❤️

The Final operation (Baggie for life)

I have been waiting for months to have this life changing operation, I had been suffering with loss of blood and I had a mucus fistula which constantly leaked blood and mucus, it got to the stage where I just didn’t want to eat as everytime I ate I would get urges that I need to go to the toilet ( I couldn’t go because I have a ileostomy bag), I was suppose to be having my operation on the 30th April but they changed the date the day before, so I started getting nervous,

I woke up  and all I remember is this lady looking at me, she told me what happened and that there was no complications, I pressed the morphine pump every 5 mins and then fell asleep and then it turned 9pm and then moved to a ward which was for people with bowel problems, it was weird as I was the youngest once again

I started crying , due to the pain and tiredness , I was missing my mum and wished that she was next to me, I finally got to sleep but I kept on being woken up every 3 hours for my blood pressure , fell asleep again and it was 545 and fell asleep again and then the breakfast lady came and offered me a drink (. Was nil by mouth) and all I could see was people eating and I was getting really upset as I was sooo hungry as I hadn’t eaten in 2 days,

I saw my amazing specialist Mr George and he told me that there was no complications and that it would be a few days til I get to go home , long story short , my walking improved so much , I walked to level 0 as I was on level 2 and the catheter was removed and luckily I didn’t have any drains , I was eating and drinking perfectly and 9 days post op I was allowed to come home, I waited til 2pm and then 2 men called Dave came with a stretcher , so I lyed on the stretcher and was on my way home , I fell asleep from Swindon to Bristol and all I could see was the big RAC sign and I new that I was nearlly home, another 1 and a half hours and I was home , going down in a ambulance had the whole street talking and I came out in a stretcher and loads of children surrounded the ambulance and I was soo embarassed


i just hope this is my last operation as I don’t think my body can cope xx

My invisible illness part 4

Just stunned that I had a whole room to myself, ensuite and noticing some people who i know who worked at the hospital, it’s weird how things changed when I was gone for such a long time, they did the pulse, heart rate machine and my Oxygen levels and I was felt happy to be back in my home town, lied in bed listening it the music channel was the best thing as in the other hospitas they had small little tele but this was a proper flat screen tv on the wall, i must of fell asleep but I woke up being prodded for medication and then I slept like a baby

the next day came and then it all happened physiotherapists, dieticians, meeting with my Stomfa team, was nice to get everything on board to make sure this was just a small stay as I just really wanted to get home into my own bed and just relax, so I did the physio weekdays but did miss one day as my little sister took me up to the college ( which was next door ) to see everyone who had supported me , after I got back the only disadvantages was having burnt feet but other than that I was the happiest girl in the world

when my best friend came to visit me, with her mum and her sister came and saw me we where talking of how much progress I had made, I couldn’t believe how much Lauren and her family had done for me to raise so money and raise awarness of how poorly I was, we talked and laughed for many hours and then

Lauren’s mum for a joke mention that I should be in the other side of the hospital ( it’s mental ward) my sense of humour defo hadn’t of left me like my bowel did.

Couple do days flew past all my family and friends visited me, having cuddles with my littleusins grace, gabes and Lexi was just lovely, when I was at musgrove they would draw in cards for me as they where only  baby’s at the time

more days flew and the day I had been waiting for was I could go home and I was sooo exicted , my hands where shaking, I was nervous not having blood pressure tests as all I could do was panic about getting kik again but as soon as I got home there was welcome home banners everywhere and balloons in my new downstairs bedroom, just being at home was the greatest feeling, I was glad to be in my own home with my family but the best thing was I got all my Christmas presents

—- next chapter will be when I next get admitted for my 4th operation —-

The invisible illness part 3

Having such an amazing bunch of people supporting me gave me the ambition to be home as soon as possible at this point it was Half way through June 2013, I got moved into a bay with 2 amazing lady’s who kept me company, some days felt like they dragged but because I had company I felt more happier,one day I just felt absolutely useless and with the physiotherapy I had I was getting stronger, I literally pushed myself up( which I haven’t been able to do since dec 2012) swing my legs around and stand up onto the gutter frame, the nurses couldn’t believe it, they where so supportive, I just wanted to walk, I walked with my hospital gown up slowly walking upto the nurses desk, my specialist  came up to see me and couldn’t believe his eyes, I asked him whilst sitting down in my wheelchair as I got tired ‘so when can I go home then’the grin on his face saying they where going to talk about it as I suggest to go to a community hospital as to get me walking and stronger,

the next day arrived ( it feels like yesterday)I woke up around 8am had breakfast, and my specialists came round, with all the team from gastroenterology and be said *we have some news for you*, I looked a bit down as I knew it was going to be bad news but they said *as you have made a lot of progress we are referring you to the community hospital on the 8th july*. I looked up and gave my specialist and the team a massive smile, and was straight on the phone to tell my mum that was the plan, she was so relieved I was being moved nearer home :D. I went for a walk and improved everyday with my gutter frame, all the planning for me to go home was getting nearer, the day before I left I rang my mum and stepdad and they where so exicted I was coming home, I made my stepdad cry as he was proud  of how much progress I had made,

the next day and I was all packed up and ready to go, my specialists came to see me before I left and I couldn’t of been so thankful, they saved my life and it’s all there doing that I am all better, I left and started crying asthe ward was like a family to me, on the way home I started panicking that my bag was going to leak but I started talking to my mum and stepdad , listening to music and then I reached my hometown and I went to see my house as I hadn’t seen it in 9 months and I sat down on the sofa and my mum shouted the dogs and they came running onto me , giving me the biggest cuddles ever, at this point I wasn’t there for long but I was so happy just to see my dogs and cat and of course my sister and brother as I hardly saw them.

i had to go back In the car and make my way to the community hospital, before we got there we made a stop at mcdonalds ( which I hadn’t had in a year) OMG it was the nicest takeaway food I had in ages, I got into the hospital I had to go into a wheelchair and go in a Lift at this point I was very scared and nervous, I got Into the ward and was taken into the room and I couldn’t believe my eyes my best friend had decorated my room with balloons and flowers,I was so shocked but the best part was that there was a television which I didn’t have to pay for …..

to be continued …..

The invisible illness part two

I was scared,not just scared frightened, I didn’t know what was going to happen, I just wanted to get better, there’s no other way to explain how much I had waited to get better, 5 months in hospital and I was getting worse, so on March 7th 2013 I got in an a ambulance and went on my journey to oxford,( I, so glad I had a catheter and a bag) didn’t have to make any stops :D, I was talking to the paramedic in the ambulance and she was so shocked as she never believed how much I had hone through at such a young age, she was telling all about the sights and where I should go when I get out of hospital, she was lovely, I got into the hospital, it was MASSIVE, so much bigger than the hospital I was in before, I got into the lift and I went into a ward called the true love ward.

I got into the bay and started crying, I was just so fed up and I hated my life by then, the nurses came over gave me a cuddle and some tissues, then the registrar came in with ten junior doctors examining me as they didn’t know what to do, he wrote up all my medications up and then my specialists came and saw me, they introduced me to the team as they where intrigued on how to make me better, so the next couple of days I had scans,echoes,endoscopy,X-rays, the lot , I ended up with two picc lines and TPN As I had lost around four stone due to being nil by mouth for two months due to gut failure, the day they told me I was so happy, my mum was staying up in oxford with me as she didn’t want to leave my side, they put me on cyclosporin (horrible drug) and I started waking up with chunks of my hair missing I was such a mess. I cried everyday because I wanted to give up, ( there was many times that happened ) , I then went into theater on May 7th to sort out my Stoma, but whilst on the operating theater I nearly died. (That’s twice that’s happened). The cyclosporin had developed me to have fluid around the lungs and get a really servere chest infection so I was on a ventilator for a few days ( waking up with that in your mouth is horrid) and that’s when I ended up in intensive care again.

My family came to see me two by two, my mum and step-dad came in and because I couldn’t talk because of the ventilator she gave me a pen and paper and I wrote the words (get me fucking out of here), she told me that I was going to get better now, I was relieved,still had a long journey ahead of me, I started doing physiotherapy as soon as I woke up, they put me into the chair as I couldn’t get up, but one of the days they accidentally put the PAC slides and it pinched my bum cheek so now I’m left with a little pressure sore there. This might make you laugh but I was so fed up and I asked my specialist to seduce me instead of sedate, all my family always remind me of that. I started breathing normally after two weeks, I was so keen just to get out if intensive care I worked so hard, the day before I left intensive care I went up to the true love ward and I was so eager to get back on the ward,

the day I left intensive care I was so depressed I just wanted to die,all I did was cry, I was so lonely, at that point I didn’t think anyone understood how lonely you can get being away from your family for so long. When my family came and visited I would have a huge smile on my face but as soon as they went I would cry and cry and cry,

I caught a really bad water a couple of days after I came back from intensive care, I had to spend my 19th birthday with no one to talk it but my family and the nurses made my day extra special, I had a cake, lots of money, clothes, perfumes of my family, and the nurses had organized a free meal at nandos with my family and they brought me a i Tunes voucher, I felt so happy, even though I was felt really sick, I enjoyed my day, my mum had just a bag if cards which people that gave her, the best one was a friend of my mums, she was getting married and she wanted me to go so she gave me 200 pounds to go and get a dress for her special day. I had loads of support from people from my home town, they donated money so that I could have an i Pad and a phone, donated money and did raffles and different things just to help me.

I don’t know what I would of done with out them

“………….to be continued …………

The invisible illness part one

Waking up and rushing to the toilet was what I used to do, running to the toilet because I needed to go, I was getting. Weaker and weaker and something had to be done, the doctors did blood tests but nothing was found. The doctors told me I could have allergies and blamed this invisible illness on irritable bowel disease, I needed answers on why I needed to go to the toilet twenty plus times a day, there was blood coming out , I would cry to my mum as the pain was that bad, I used to have a paper round and I just had to run home as if I didn’t then I would of had accidents. Enough was enough, in 2012 I went to the doctors and the doctor referred me to see a gastroenterologist as the symptoms where getting worse. In October 2012 I went to the hospital and saw the specialist and at this point I had 56 bruises around my body, I had lost around two stone. The doctor was very concerned and said that this looked like a case of Crohn’s disease (which I had never heard about before) so he gave me some steroids to take so that the inflammation could go down, I was so happy that they found the diagnosis 🙂

i had a blood test and I was on my way home, I remember like it was yesterday. I was in the living room and the phone rang it was the specialist, He told my mum that I had only ten platelets so I had to be rushed in straight away, I was so scared, my mums friend gave us a lift up to the hospital and was up there for hours waiting to see what was happening, I ended up staying on MIU for the night, but things where getting worse, all I was doing was running to the toilet, the specialist in the morning told me my platelets had gone up to twelve, I was taken to a ward to be looked after. I ended up being in hospital for a week due to having a procedure which watas a camera to identify that my Crohn’s was grade one, so I could be treated with 70mgs of steroids and off I went home but I kept on going in hospital for two months until …….

On December 5th 2012 was the last time I was admitted into hospital, I Remember my mum taking me to the doctors as all I was doing was bleeding and I couldn’t cope so the doctor admitted me in, I had another procedure and found out my Crohn’s had got to grade four and this was serious so they gave me a option of having a ileostomy , I never heard of this so the ibd nurses came and saw me and told me about what was going to happen, I didn’t care what was going to happen I just wanted to be the normal me before I got poorly, they put my name down for surgery and I had the operation  on December 13th 2012 at 2:30pm, I remember the nerves, being worried, I ended up sitting on a commode all day til they took me down to surgery..

I can’t remember waking up, my body was in shock as the pain was horrendous, so had to have morphine,I had to stay in bed for three days due to wasn’t aloud to walk anywhere due to how my surgery went, I was relaxing, at first I loved it, then it got harder I would be falling asleep all days. I couldn’t get out of the chair in the end, I was so weak and my Stoma wasn’t working, I was in a lot of pain at this point it felt like someone was stabbing me in the stomach, I was throwing up and my temperature was high so I ended up going into surgery to remove some more of my bowel, I woke up in ITU, attached to so many machines was horrible, I was in there for a few days, then got moved back onto the ward that I was on before my second operation.

christmas day 2012 was the worst day of my life, I was stuck in hospital, whilst my whole family where celebrating with a roast dinner ( which I was only aloud to have soft so couldn’t have the roast that I wanted, I had a horrible ng tube , oh I cried myself to sleep my mum came to visit me to give me some of my presents, she was giving the rest of them when I got out of hospital, I was entertained though I had twilight DVDs so that’s all I watched.

from Christmas time to march, they couldn’t find what was wrong with me,I was becoming more ill and I had tests after tests and scans after scans but nothing was showing, so in March 2013 my specialist sent a letter to a specialist in oxford to help,He responded, I had to travel 150 miles away to OXFORD