Awareness, Chronic Illness Blogs, Personal Blogs

6 Years Ago I Was Diagnosed!

It has been 6 years today, that I had my first colonoscopy and I was diagnosed with Crohn’s Disease. It was the 15th of August 2012, at age 17.

The picture above is me just a few months into Steroid treatment and I had Moon Face. I was away to a fancy dress party and trying to live my life as normal as possible, but little did anyone know I wasn’t living- I was existing. I spent 98% of my time on the toilet or vomiting in the sink. I was constantly passing blood and mucous and passing out on the toilet where my mum would find me early in the morning when she would get up to get ready for work.

4 years previously to this is when my issues began. I would have severe constipation or severe diarrhoea and vomit from time to time whilst experiencing the worst stomach cramps I had ever had. These issues would be worse when I was on my time of the month but I just put it down to that, and so did my doctors. As time went by, my cramps, vomiting and bowel issues got worse and worse. Each GP I seen told me I had IBS, bad periods or Piles. My mum and I knew it was much more than this but no-one wanted to listen. After 4 years they finally took some blood tests and one blood category called CRP came up high, which indicates inflammation in the body. I was referred for a colonoscopy and had to sit tight and wait for my appointment to come through. Months went by and I continued to try at life- applying for college, trying to work (missing loads of shifts and being sent home being unwell) and trying to maintain friendships. I continued to live on the toilet and vomiting constantly, having constant tonsillitis and glandular fever, ear infections, urine infections and sinus infections. Months of being on and off antibiotics and going back and forth to the GP practice.

The day finally came that I got an appointment for a Colonoscopy and I was absolutely terrified. I previously had a telescope with a light on the end of it inserted into my rectum by a GP who was so rough and forceful that she had made me bleed and scream in pain- but she didn’t care, she continued against my own will. I thought to myself “What if that happens again? ” “What if the pain is too much for me to handle?”. I spent every day leading up to the Colonoscopy in tears. The night before I had to drink a powder dissolved in water called Picolax which was in preparation for the procedure, so the bowel was clear. It was absolute hell, the first drink nothing happened and I had decided to eat 1 pringle- BAD MISTAKE! I was running back and forth to toilet even more than usual, the pain and the sweating was intensified. I made it through the night and the day of my colonoscopy arrived. My Mum and Dad accompanied me in the waiting room, with a hot water bottle on my tummy crying due to pain and fear of what was awaiting me.

“Alannah Simpson please” a nurse shouted, I looked at my Dad and I was terrified, i hugged him and then asked my Mum to come in with me. As my Mum and I went into the consultation room I was asked several questions and then asked to change into a hospital gown. I was then taken into a room with lots of equipment and machines surrounded by nurses in green uniforms. I felt like I couldn’t breathe and the tears streamed down my face. I kept thinking about blood and pain, the cramps intensified as I lay down on the bed. The nurses put a needle in my arm and gave me pain relief along with sedation and I felt quite groggy and fuzzy, like when you have drank too much on a night out! I begged for my mum to stay but she wasn’t able to stay, however the nurses were so lovely and really looked after me. They held my hand and then the consultant came in and began to insert the long camera into my rectum. Being completely honest I didn’t really feel it, it was more uncomfortable. As he went further in I had asked where it was, so he pushed it onto my tummy and said to put my finger there and I could feel the camera- I was completely fascinated! As I lay there I watched the screen and the consultant and nurses were talking about the findings and took biopsies. I didn’t really understand what they were saying, but what I did understand was what I was seeing on the screen. My large bowel was red raw, ulcerated and full of puss! I was horrified and asked what the hell this was. The consultant told me it was positively Crohn’s Disease and they were giving me an emergency supply of steroids to try and take the inflammation down.

I spent an hour or two in recovery and then I was able to go home. I was given a print summary of the procedure and report of their findings with me. A few days went by and I took the steroids and felt no different, if anything I was starting to feel worse. I went to the GP and was admitted into Aberdeen Royal Infirmary when the old wards were there- 13 and 14 which were for each gender. I had never had a cannula in my life, I had doctors and nurses coming round asking me questions and saying things I didn’t understand. That day was a blur. The next day I had an x-ray and an MRI and I was told I had a blockage. The treatment for this was more laxatives and stool softening tablets- it was hell. The ward was awful, being only 3 toilets for all patients in the entire ward. I spent most of my time either crying in pain in bed or crying in pain on the toilet, when I could get one! I seen things no 17 year old girl should see. I seen old women who were hooked up to IV bags of blood, some connected to heart monitors, many who were incontinent and had tried to get out of bed and covered the floor in bowel movements. Due to me being over 16, the children’s hospital wasn’t an option and I was months away from turning 18.

I was lucky that my Mum and Dad visited me daily on the evenings but when they left it felt like my world was crashing down. I couldn’t stop crying, I felt so alone with no-one to talk to in the ward who knew what condition I had or who was even close to my age. I was started on two treatments called Pentasa and Aziothioprine and had an allergic reaction so I was then moved onto Mecaptipurine which I was OK with. After that week in hospital I was able to return home and tried to go back to college but it was far from easy. Previous to the admission I spent most of my time in the college toilets. The other students in my class would make fun of me and say I was ditching class. They would say this to the tutors and they would ask where I had been and I explained that I had a colonoscopy soon. When I returned I provided them with the letter and they gave me so much support. The students in my class were still constant at keeping up with making time hard for me and my friends in the class- writing things on Twitter about us. Eventually I had to leave. The stress of being il, having insomnia from the steroids, the work I had to do at home to try and catch up and the stress these people caused for me. I hit depression and saw no way out. Things at home were bad too, I was in a seriously bad and toxic relationship where I was mentally and physically abused. I was too exhausted to fight back, I was too scared to tell anyone or walk away in fear that I would be even more alone. I could only see one way out and that was to be dead. I took a box of paracetamol and downed them with alcohol and curled myself up into bed and hoped it would work. It didn’t. I woke up and vomited into the toilet for hours. I told nobody. I felt so much guilt so much grief for the life I couldn’t have and I had no idea what the future held for me. I felt like a burden to my family and friends. I then lost friends and had to deal with a miscarriage- I felt useless that I couldn’t even carry a child so I told people I got rid of it to save myself the embarrassment and shame.

Time went by and more and more people left, I tried college again the following year but I was in and out of hospital admissions and had to leave. I decided to try and work but that didn’t work out either. My boss and the people I worked with weren’t understanding at all. I went to see the people head of the care home and gave them my notice and left. I gave myself time and tried another job but that too ended up with me being fired and not given the pay I was due for the work I had done. So I moved onto another job and then became homeless and slept on my dad’s floor for a while untill homeless accommodation was available for me. Once I moved into the homeless accommodation bungalow, I got a job at a local hotel as a barmaid and waitress. I then applied for a second job at another local bar for the weekends to earn more money as the rent for homeless accommodation was £90 per week. I was instantly fired from the hotel because they had issues with the owner from the other bar. I then applied for a job as a carer at another local care home and I loved it!

My health continued to be a burden to me and caused me pain but after loosing the job as a carer from my crohns flaring again and a few months course of steroids I hit remission. I was then working weekends at the bar and actively looking for work anywhere but nothing came up. I was determined to catch up on lost time being a teenager and experiencing nights out with friends. I went to house parties and went to a night club where my friend Chris was dj-ing with hits from my favourite djs – The Tidy Boys. In October that year I was given a permanent home from the council and began to settle in whilst working as a bar maid and life seemed to be OK. I met someone who I really liked and over time we spent more time together.

Little did I know what was brewing inside of me at the beginning of the next year.. I had become seriously ill and after a few weeks I was rushed into hospital via ambulance and later found out I had contracted a bacteria called Campylobactor also associated with food poisoning, however this type from my stool samples was more common from abroad and they had asked if I had recently been on holiday. I have never left the UK so still to this day I have no idea where it came from! I was asked to take part in a study at Robert Gordon University in Aberdeen where they conducted studies into that. The Campylobactor bacteria then led me into developing Sepsis, where my large bowel had become infected and I was severely unwell. At that point they offered me two options.. 1. To trial a drug called Vedolizumab or 2. Surgery for a stoma. Option 1 meant I would have to travel to Dundee back and forth for months for a drug that they didn’t know it’s success rates and if it would work for me, the second option felt more appropriate for me.

In a few days I had seen a surgeon and it was agreed that my entire large bowel would be removed and I would have an ileostomy formed. There was talk about a loop ileostomy or a colostomy however they wouldn’t have benefited me for the extent and severity of my disease. The sepsis got worse and one morning my surgeon came to see me and felt my stomach and was gravely concerned. My bloods didn’t show anything- no raised CRP no raised White Bloodcell Count, only my organ functions weren’t normal. I was sweating non stop and my windows were constantly wide open, when the doctors and nurses came in they were shivering! Again this didn’t show on the Thermometer. So, as my surgeon examined me I was rushed in for emergency surgery instead of the planned surgery for a few weeks later. A stoma nurse came to see me that day and marked me up and I was fasted in preparation for surgery. She gave me a booklet and a bag to look at so I could show family or friends. The booklet explained quite a lot. But it didn’t comfort me. I was scared but I was also excited. I couldn’t decided which feeling I felt more of.

After surgery I was sore of course but I felt much better. The cramps and burning were gone, the vomiting stopped and although I was groggy from pain relief I instantly knew it was the right decision I had made. After a week I was able to go home. But when I got home I also got dumped. I was told he couldn’t handle what had happened with me and he couldn’t deal with my illness anymore. I was distraught and instantly felt alone again. My health started to decline again as I was at home and I was constantly on the toilet and vomiting again. I couldn’t understand why after surgery I was like this again. I was infuriated! I was just so frustrated and in pain. A few months went on and I was in and out of hospital again and the last time I was rushed into hospital via ambulance. I was passing mucous the colour of a cup of tea which I then learned was puss, along with blood and chunks of skin.

I then had surgery to remove my rectal stump and I was given what we IBD sufferers call a Barbie Bum. The surgery was a little 3 hours and when I woke up it was AMAZING! The morning after I walked round HDU 7 times and had my drain removed on the third day and I was able to go home. When I got home I was so emotional and then I started to feel unwell again. At this point I was spewing again so I went to my GP practice and given oral antibiotics for a wound infection. They didn’t work and I felt gravely worse. I was then admitted again and given IV antibiotics. My lips and throat started to swell and I kept blackening out. I rang my buzzer and the nurses face worried me. I blacked out and woke up to so many people around me with the curtains closed. I was given adrenaline through my cannula every 5-10 minutes, had an ecg on, a blood pressure cuff on my arm and a heart monitor clip on my finger. Eventually I came round and it was decided to put me on another IV antibiotic that wasn’t penicillin based. I almost died that night.

Since that time I have been in and out with constant wound infections from where my rectum used to be. I also had an infection under my stoma and it healed up with steroid and antibiotic creams. I’ve suffered with liver issues where I got an autoimmune hepatitis (non infectious) and it then went away, anaemia, other numerous infections, more sepsis, b12 defiency, diagnosis of other auto immune conditions such as Behcets Disease which is a rare form of Vasculitis, Arthritis, Fibromyalgia, Pelvic/Vaginal/Perineal/Reproductive Crohn’s Disease, Asthma and have had 3 misscarries and a surgical termination due to being so ill.

But what has these illnesses and tough times really taught me?

They have taught me that no matter what shit you have going on that not everyone is as understanding of illness. Its taught me that even though we all suffer from the same conditions, that we are not all under one category and we are NOT all the same! It’s taught me so much on medications, understanding procedures, stoma products, IV medications, surgery and recovery. But what it has really taught me more than anything is that there are others out there just like me- who suffer from illnesses with pain and all that comes along with it.

I am also thankful for having Crohn’s Disease because if I didn’t have it, I wouldn’t have the most important people in my life. I wouldn’t have strength or passion in raising awareness and advocating for people just like me. I wouldn’t know pain or weakness or knowing how much it means when you have help from when I help someone. I also wouldn’t have met my amazing partner Jaimie who looks after me on the days I can’t get our of bed.

My illnesses have also made me realise that just because I am ill and have these diseases, that I am me and not the illnesses that I suffer from. That just because I don’t work doesn’t mean I am lazy anymore. I appreciate the little things that I once took for granted, that many people who have good health take for granted daily.

I have been able to attend charity events such as The Purple Wings Charity balls and the GYBO ball. Where we all come together and celebrate our strength in numbers and share our stories. We make new friendships and manage to keep eachother on our toes and keep up the fight! 💜

Chronic Illness Blogs, Personal Blogs

Recovering from Surgery – Small Things Matter!

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Many people will go through some surgery at some point in their lives when diagnosed with a Chronic Illness, be it moderate or severe. Sometimes they have a strong support network at home and sometimes they don’t, and it’s important to concentrate on what you can do for yourself to help you through the recovery process after surgery.

So we all have things that are important to us including bills, personal hygiene, our furry friends and housework etc however i feel that what we really need to focus on is the little things for example; fluid intake, being comfortable, having enough medication to last you through the week, snacks or food and making sure you have someone who can come and check on you every so often to help with dishes or change bedding. Not everyone has someone that can check on them, so it’s important to make sure that if that person is you, that you have a plan of care with doctors or nurses for you returning home. District nurses (also known as community nurses, who work along side GP’s) help with wound aftercare, monitor your wellbeing, give required injections, help you wash/dress and assess your health on a daily basis to ensure everything is going the way it should, also known as continuing care.

The biggest part when recovering is that it is you who is adapting to life again physically and mentally from surgery, not anyone else, and so you have to put your needs first and slowly build up your independence. In order to do this it’s important to start slow and not over do it as you want to ensure you don’t make yourself more stressed or in more pain than can be helped, you must also make sure that the people around you are patient with this. You also become more hidden into your own shell during the process at times and that’s OK, but do keep in contact with friends or family and don’t let your social life disappear. It’s so important to keep your life before surgery intact to now as big changes in your social life have some less beneficial affects on your mental health which can lead to struggling with daily life. This slow process is about making many small changes rather than one big one, which makes a bigger more positive difference! Routine is a great way to start for example; 9am take x medication, 10am shower, 1pm have something to eat and so forth, it really helps you focus on the the little things that are most important to be done to help you through the day.

Finding something new to do like a new hobby can help take your mind off of things and gives you something to focus on rather than sitting being bored or worrying about things. Many people decide to watch something new on NETFLIX, YouTube, DisneyLife or on TV, many decide to buy a new book and read it within a few days, i’ve even witnessed some patients study for degrees or courses online whilst in hospital! I took up gaming after my first major surgery in 2015 on the Xbox One and from there i played loads of free to play games, then i moved onto playing PC Games and as i got stronger every day i then went onto walking with the dogs. So it went from sitting being unable to move very much to gaining independence and being able to enjoy life outside. This isn’t how it is for everyone though, so you should remember that every recovery is very person dependant and isn’t the same for everyone. You will go through phases of down periods and highs, feeling all types of emotions and it can be overwhelming which is completely normal! Don’t shut yourself down or let anyone else put you down because one day you feel so sad that you don’t want to get out of bed or eat, tomorrow is another day to pick yourself up and find something positive from this hard situation.

Now some of the important medical stuff (yawn i know!, make a cup of tea to accompany you!) Feeling tired after surgery is completely normal and having a low appetite due to General Anesthetic so you should only do what you feel you can and leave it at that. (If the washing pile is sky high, leave it for another day!) Your doctor’s and surgeons always ask that you do try to move a little each day to increase blood flow and this is because more blood flow promotes more healing for wounds and strengthens your muscles. It is also important to have movement daily to reduce the chances of a blood clot which can very nasty! Please click here for information on blood clots, from the NHS website (which is the best place to go for online advice, unless you wish to call 111 for urgent advice.) Many patients can suffer from Depression and Anxiety after surgery too, you can do some things to help your symptoms however seeking medical help is crucial such as visiting your GP.  Sometimes after surgery things can happen such as infection, weight loss or anemia, which too can be treated appropriately by visiting your GP or A+E.

It can be hard to find any positives from a difficult situation that you didn’t ask for or want to be in, sometimes you feel fed up and alone. It is really hard to think there can be any positives at all, but not all good things are lost from life at this point. I found little things such as a cup of tea the greatest part of my day! Being able to catch up on social media or helping others going through similar in support groups felt like my purpose. I was able to watch that Netflix show i always wanted to watch and even though (even now after recent surgery) that i can’t walk anywhere, going out in the car Pokemon hunting with a bacon sandwich is fantastic!

I really hope this may benefit you or someone you know who has or is awaiting surgery.

-Lots of love and healing vibes, Alannah.

Awareness, Chronic Illness Blogs, Mental Health Blogs, Personal Blogs

IBD – Pregnancy/Termination

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Hey everyone! The past few months as people know have been pretty difficult for me as i have been battling with my Crohn’s Disease, Bechets Disease, Ileostomy Blockages, Arthritis, Sciatica and then obviously with pain and anxiety. About 3 weeks ago i found out after going to A+E with terrible pain (after finding out a few days before that i have a hernia), that i was pregnant. They thought it was an Ectopic Pregnancy and i was told to make my way to Aberdeen Maternity Hospital for an internal Ultra Sound Scan, blood tests and examination. I arrived around 11pm at night and then returned home around 5am after they confirmed it was not an Ectopic Pregnancy and i was in fact 6 weeks. They also confirmed that i was very ill with my Crohn’s Disease etc and we debated whether i was well enough to continue the pregnancy. I spoke to my GP and then i also spoke to a Gynaecologist who works at Aberdeen Health Village and we all decided that i was too poorly to continue as i was in so much pain, losing weight and being very sick and that continuing could be very risky for me as i have miscarried 3 times before hand and the risks to the baby and myself. Obviously it’s something i discussed with my partner first and then we both discussed it with my mum and she also felt that my health was to come first and that it was important to make the right decision.

Now obviously many know that my consultant and surgeon both told me i would never be able to get pregnant so this came as quite a shock for me mostly. My care has been terrible to say the least but that’s for another day as i would really like to help other women who may be in the situation i was in or who have been told they cannot get pregnant, before i go into that i would like to explain the procedure in case it is something that you may opt for one day for either the same reasons or simply because pregnancy isn’t for you. There are many choices that they give you in a booklet for Termination and it’s important to read them all before seeing a nurse or midwife etc, so that you can ask any questions when you see them and discuss the options with them to make sure it’s the best one for you. I chose the last option which is Surgical Termination;

Dilatation and evacuation (D&E)

Used from around 15 weeks of pregnancy. It involves inserting special instruments called forceps through the cervix and into the womb to remove the pregnancy.

The cervix is gently dilated for several hours or up to a day before the surgery to allow the forceps to be inserted.

D&E is carried out with conscious sedation or general anaesthetic. It normally takes about 10 to 20 minutes and you might be able to go home the same day.

I arrived for my appointment time to the ward at Aberdeen Royal Infirmary at 11:00am where i was admitted and asked the normal questions about allergies, alcohol intake, smoker or non smoker (happy to say i’ve been stopped smoking for almost 3 weeks now!) and about your next of kin. I was given a gown, some pain killers, an anti sickness melt and then the tablets that soften your womb for the operation which i had to put under my tongue. They had no horrible taste and looked like two little pentagon shaped white tablets so nothing big or scary or fowl tasting, if you suffer from sickness from bad tastes (which is reassuring for you.) The tablet takes about 20 minutes to work and whether you bleed straight away, hours later or not at all is all person dependant. For me, i didn’t bleed until between 2-5pm in the afternoon, i passed a little when i went to pass urine but only a little. The doctor then came to see me who was doing the procedure before the Anaesthetist just to confirm i was still giving my consent and that my own surgeon also wanted to come down and do some examinations and surgery if required and if i was also ok to give my consent to that too, in which i said yes and signed the form. She also explained to my mum and partner what happens in the procedure, how long it takes and the recovery and what to expect afterwards. We also decided for me to have the implant put into my arm to prevent this happening again. I have to say we really appreciated talking with her and i cannot thank her enough for being so kind and looking after me. The Anesthetist came to see me not long afterwards and she too was lovely, and continued to use the plan i had made with the pre op assessment nurse back in April for my original surgery with my surgeon, which was to kick start me to sleep with the gas before popping a cannula in to put through the General Anaesthetic.

At 5pm just before i was taken to theatre (after being wrapped up in a heated blanket as i was really cold all day and my veins weren’t coming up at all!), i went to the toilet as they asked me if i needed to go before hand and i started to pass large blood clots and bled on the floor and pretty much everywhere, but it wasn’t any more sore than a heavy period. In Theatre, the Anaesthetist popped me to sleep by the mask and got a cannula in my right wrist, which wasn’t sore at all when i woke up with it! She described my veins as “like a babies veins, so incredibly tiny!” which i expected as they have been getting worse over time with the Vasculitis (Bechet’s.) When i woke up in recovery, i was given 4 different types of antisickness through IV, pain killers and fluids which was great as i was really dehydrated from being sick the two days previous and being NBM all day. The nurses were great and explained everything to me as soon as was ‘with it’ and that the termination was successful however my surgeon had done two other surgeries in the time i was asleep and that the wound i have, had been flushed out, scraped, examined with forceps and refashioned and the same with my fistula which in his words was “absolutely huge” and he couldn’t manage to fit a seton stitch in there (A seton is a piece of surgical thread that is left in the fistula for several weeks to keep it open. This allows it to drain and helps it heal. Loose setons allow fistulas to drain, but don’t cure them.) I had a big dressing in my wound which was extremely painful i couldn’t move from the trolley to my bed, they used a slide sheet and i had to get help to the toilet. When i sat on the toilet i just passed lots of blood which was horrible and quite painful from my lady parts, but this time i did have some pelvic pain a bit worse than periods which faded after a while.

I was offered something to eat and drink but i wasn’t hungry at all so i had a cup of tea which the nurse made PERFECT, which if anyone knows me is a rare statement from me! lol. Another more senior nurse came to see me and said that my surgeon was supposed to come and speak to me about everything and the future plan but all she knew was that the fistula needed another operation at some point. He didn’t show which i expected to happen late on a friday evening, instead another surgical professional came to see me and had said that she would get day staff on Saturday morning to make sure a letter is sent to my GP for future plan and popped onto my discharge letter that if i required more pain relief that they were to give me an injection at my local (due to complications i can’t have oral strong pain relief!)

So the point of me writing about this journey i have went through?;

I want to help other women out there who have been told they cannot have children from a health professional, without having a Fertility Test first to confirm this. As if it is only told to you or someone you know verbally then it is a simple state of opinion and not fact! If you also suffer from irregular periods, that also doesn’t mean that you can’t get pregnant so please be aware of this too! This journey has been very traumatic for me and my anxiety has been terrible and physically it’s made me very, very ill. If you are reading this and you have been told you cannot get pregnant PLEASE ask for a fertility test to be 100% on this before having any physical contact with someone without contraception. I also strongly recommend that you talk to someone about a preventative if you don’t want to get pregnant or if you haven’t had a fertility test to stand by being told verbally that it isn’t possible. Talking to a GP or your nearest Sexual Health Clinic (which you can search your nearest one by clicking the link) will really help you know which one is best for you. The only option i had was the implant due to medical problems, which may be different for you! I would also like to state that any information used via links in this blog is directly from the NHS website only, which is here if you need help with searching anything medical.

I really hope this can help someone from ever getting into the situation i was in and also to help people understand the importance between fact and fiction.

-Alannah.

Awareness, Chronic Illness Blogs, Life With A Stoma, People's Stories!, Personal Blogs

IBD- Do Blood Tests and Scans Confirm Flares?

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The problem we have (when i say we; i mean fellow sufferers and myself with IBD) is that we have blood test after blood test, CT scans, MRI scans and X-Rays but they aren’t accurate enough to show how bad the disease is and if we are flaring. For me, blood tests are my worst enemy.. why? Because they don’t show what is really going on. When i have an infection or a flare it’s beyond frustrating when you phone up for your results and they say ” you’re bloods are good so that’s very reassuring”, if i had a pound for every single time a health professional told me this i’d own a mansion with a swimming pool and my dogs would have their own little dog play house!! (i’m deadly serious ha ha.)

There is also some theory into why they show up with nothing or wrong. First of all with one blood test being done it needs to be accompanied by another to determine exactly if it is accurate or not and depending on them isn’t the best thing to do. I have read online that even though these tests have been around for a number of years, newer ones aren’t always coming back with the truth. It also states that some tests have a high rate of false positives, but what does that actually mean? It simply means that when the results come back pinpointing what the patient has, they actually don’t have it. In the article it states a specific test that was used to determine ovarian cancer known as CA-125 and due to the false positive numbers being so high and telling patients that they had ovarian cancer when they in fact didn’t, that specific test is no longer practiced. The next one is called a false negative, meaning that the person does not have whatever they are being tested for when they do have the condition. Many blood tests of the negative false are inaccuracy and can also be from sensitivity of certain equipment. Both tests come together in determining with the same factors of what they show up wrong; sensitivity and specificy.  For many doctors and specialists, this isn’t taken into consideration and automatically believe these results.

It’s important to ask for other tests besides bloods to be 100% on what it is that you are dealing with or to determine an accurate diagnosis. It’s also important to mention about the issues that can happen with false positives and false negatives. Especially when there are symptoms that aren’t going away or becoming worse. There has to be a wide perspective on the doctor and patients mind and meeting the right doctor who shares this with you. If you feel that your doctor does not, then request to see another. Many doctors are more trained or research certain things and conditions whereas others do not. It is extremely difficult to get a doctor to listen let alone an on call doctor on a ward who doesn’t know you or anything about you or the issues you face daily. They do their protocol of testing and send you home without thought when all results come back OK. Heck i think if i was an on call doctor i would find it SO tough to help patients who had tests that all came back fine! So it’s difficult on both sides but i do think that many simply just don’t care unless its life or death. Why should a patient be left and put home with no help because they aren’t dying? is that a fair life to live? what if the pain is so agonizing they are constantly vomiting  and unable to make it to the bathroom? The process of diagnosis is probably the hardest part about being ill, when you know something is up but nobody will do anything about it and it is placed onto a less serious problem such as IBS (Irretable Bowel Syndrome.)

Taking someone to an appointment with you i feel is super important because not only are they there to listen to the conversation, they are there to help fight your corner and get someone to listen. They can hold your hand and say its ok even though its not but it provides great comfort knowing you aren’t alone sitting there worried. When a doctor tells you nothing is wrong you expect them to be right but going through hell and back with many, that you stick by what you feel. It’s time to speak up and not back down, misdiagnosis can be serious and impact someones life severely. For example- when i developed sepsis, my CRP (inflammation levels) were at 4 which is better than normal. When i was opened up and my large bowel was removed, it was rotted and septic. Obviously this is just my experience so far, so i talked to a few people who also have the same issues to share with me their experience and what they face with these problems;

Natalie 1: My IBD team always go off my bloods and they kept refusing to start me on proper treatment because my bloods kept coming back normal and that my inflammation levels were low even thought I kept telling them my symptoms. Eventually they listened to me because I kept complaining constantly that I wasn’t well and begged them to listen to me. I had a colonoscopy that proved I was flaring despite my bloods being normal but my symptoms also got worse.  It’s so frustrating that they go off tests rather than how you actually feel. Makes you feel like you’re making it up.

Lorna: I was kept in and I ended up with an op. The reasoning why they didn’t believe I was flaring in the first place was that I’d just had an op… 4 months previously. Anyway it turned out I was flaring and i had 2 narrowings but weirdly the the issues was adhesions on the outside of my intestines. I was in for about 3 months in total and was passing a lot of blood. This particular one was before my stoma. I’ve had a few times when bloods show nothing but stoma looks a mess… My gastro team now don’t take much notice of my bloods they listen to my symptoms and look at “external manifestations of disease” i.e the joint pains, mouth ulcers, hair loss, erythema nodosum, and what we can see on the stoma.

Andy: in 2014 I had a blood test done to start an Infliximab infusion by Derby Royal which came back and said I’d got Hepititis C. I had to have all my family tested, had meetings about Hep C treatment, had further blood tests, to discover that they had my bloods mixed with someone else. It was like being diagnosed with Crohns Disease all over again, trying to get my head around it. Lucky for me, it was a error on their part. It caused a lot of problems,  I was questioning everything and so was my now ex wife. I was thoroughly screened for infliximab again and came back fine. I just feel for the other person who got my results and  has Hep C! Fingers crossed they discovered it soonish. I had to have my wife tested and my two young children, obviously all came back clear, but was a big worry. I went to meetings and met the Hep C team at Derby and everything, it was something I will never forget.

Natalie 2: I’ve been in the middle of a massive crohns flare and my crp has been 12. I’ve found some Drs only take bloods into account and some do take in the whole picture. Dr Cole has always been great with me and looked at the whole picture but I know some don’t.

Yvette: I think in Crohns patients it’s extremely common to have a normal CRP level and yet still be flaring really badly. There’s plenty of gastro docs that go by that. Simply because it’s not unusual. I think a good gastro doctor who knows his/her patient well will take into consideration ALL the symptoms and tests available at the time including talking to the patient about their symptoms and then decide on a treatment plan.

Natalie 3: When I was admitted in 2015 my inflammatory markers were only at an 8 but my calprotectin was over 1660! Mine never show up in my bloods anymore, currently in an arthritis flare and last week my inflammatory markers were 2 lol! Even the nurse laughed as she had checked my joints and done a pain/swollen checklist.

Claire: No matter how ill i feel or what symptoms i have, they’ll do my bloods and they always come back CRP < 5 and ESR normal. Doctors constantly said bloods were ok and they couldn’t use that as evidence based on symptoms of abdominal pain, diarrhea, vomiting, fatigue to get stronger medication. fecal cal proteins also came back normal. In the end they agreed to scope me, where they found inflammation in neo-terminal ileum.

Tiffany: Mine always comes back normal….even when I am in a constant flare. I will have mouth and genital ulcers joint pain head aches eye pain and so on and they come back ok. It is so frustrating and then of course I start thinking it’s all in my head and I’m crazy. It was really hard to find a doctor that looked at my symptoms instead of the blood work.

Rah:  My crp is never up when im sick. Always normal.

Hannah: I have been told I don’t have beçhets but have multiple autoimmune conditions, chronic pain syndrome and chronic fatigue. I also have crohns. My bloods are normally completely inaccurate as they have done bloods at the same time as a colonoscopy the bloods are fine and the biopsies taken and the blood pouring (tmi) show differently; my GI Dr says I’m a bloody miracle!

Ashley:  I have had “normal” bloodwork multiple times when I am very very ill. Even during a flare, I don’t understand that and I never did.

Blondel: My bloods always come back within normal range even before I was formally diagnosed with Crohn’s disease. Doctors wouldn’t believe anything was wrong because nothing showed up. They even told me my symptoms were in my head!!! This went on for 15 years until a colonoscopy showed the disease but when I moved hospital I had the same battle again. I was left without treatment until I got the fistula and first lot of sepsis where my organs started failing. I don’t trust blood results. It was pretty rough.

Jessica: My blood work came back fine & still does, even now that i’m diagnosed with Crohn’s and have been in an almost constant flare for almost two months!

Chris:  As steroids were the only thing that seemed to help me I put this down to the increased cortisol they give you (rather than their anti inflammatory properties). Also my bowel starts off the day feeling fine then seems to give up towards the evening, when cortisol levels are usually lowest. I went for a cortisol blood test but I had to have it done at 9 am (when I felt fine). The results came back fine but in my eyes it isn’t a true reflection of the problem because they were taken when I felt well.

Chelsea:  My team always seem to treat the symptoms and patient not the lab results – my gp on the other hand seems to think I’m ok because my bloods are. My consultant put a mark on my records to go off calprotectin and scopes  after seeing my colonoscopy results plus calprotectin – my bloods are same as a healthy adult females would be – but I have severe ileocolitis.

Gemma: My bloods are always normal no matter how sick I am. Makes things very difficult because drs don’t believe you need fluids or are really poorly. Mine always say bloods are normal. Until calprotectin comes back high. Now they’re saying they no longer think I have Crohns cos there’s ‘not enough evidence’.

Yvonna:  I had a tumour the size of a small baby removed from my abdomen in March last year. Blood tests done every 3 months but nothing flagged up.

Faith: My immunologist rang me to say that my bloods showed very high inflammatory markers and if i was ok. I told him for once i was actually feeling fine! Apparently they would expect figures that high with severe infections or flu!! I know its the other way round but just shows how messed up they can be.

Lin:  Endlessly told over 18months my bloods were fine only thing showing was my vitamin d deficiency, my body had all the red flags, but as bloods were okay….. so was I….. no I’d had cancer all that time.. hope you can raise awareness bloods are not a clear guarantee of health!

Christopher: For years I was told my blood tests/mri scans were normal, even though I had blood running out of my rear end and countless other issues. I was being told this was all in my head and I should seek counselling. Even my own family started believing I was making it up, despite losing loads of weight and being in agony all the time. The only person that truly believed me was my wife. I am not a big fan of MRI scans, when I had my stoma surgery in November my wonderful surgeon tracked my fistula from my rectum up all the way past my pelvis. This never showed up on any scans! It was only down to my surgeon in 2013 that I finally got diagnosed, and that was by pure chance I met her, she took me on and did everything possible to find out what was wrong. I was relieved to find out I had crohns and then went and did the whole ‘told you so’ to my family and doubters. And by being relieved- I finally had a diagnosis and knew what was wrong with me.

Clare: I was very ill and my bloods were not that great but gastro doc didn’t listen or care, my hubby took me to hospital and I had emergency colectomy.

Andy J;  My bloods never shown anything untill about 18 months ago when my body went black, my bloods showed something but with Crohn’s my bloods never change it. Gp not really but my IBD team do now, never used to. 

Wendy:  Docs always say my bloods are okay when I am ill but they don’t tell you CRP is raised or that inflammation markers are high, sometimes they make you feel like a hypochondriac.

Just by talking to these people and reading what their experiences have been like and the physical and emotional affect that it has on them and their families, it’s clear to see that blood tests aren’t always as accurate as doctors like to believe. Sometimes we even believe that when they say all bloods are ok, that we simply must be and it’s in our heads. This isn’t the case and if you suffer from this PLEASE know that you are not alone and one day after fighting this that times will change in medical practices or training. It’s one of the most difficult fights a person has to face when suffering from an illness, whether they know what it is or not. But the real question is “where do i go from here?”. I might not have that answer but what i can advise is that you stick to what you believe and you don’t give up fighting for an answer! All it takes is for one doctor to believe in you and finding one that does feels like a prayer being answered. Finding that doctor can take months or years, many people even decades. I hope that one day this changes and by sharing this blog it can help and reach medical professionals. One of the main reasons why i wanted to do this blog was for someone to read it and think “this is me and has been for a while, i need answers and i need help” to then show a medical professional my blog- sharing peoples stories and experiences and to be taken seriously. Some doctors take a few times to listen but if you make it your mission to get them to listen then you are half way there!

If the false negative and false positive blood tests has an interest to you, click here. Or simply google it and there are lots of website that provide this information. 

Please share this blog and use it if you need to when seeing a doctor. Most importantly, keep fighting. 

Thank you to everyone who took part in this blog by sharing their stories and how i cannot emphasize enough how strong, brave, courageous and incredible people you all are.   

-Alannah.

Personal Blogs

New Diagnoses!

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It’s been a while since i last blogged, things have been so hectic with Christmas and New Year, my birthday and doing D.I.Y in the house! Obviously followed by hospital appointments and my health hasn’t been too good either. A few things has changed with my health since my last blog and today i finally had a diagnosis for one and help for the other, and waiting for a diagnosis on two other possible conditions i may have to add to the long and wonderful list!

First of all, i have been diagnosed with Fibromyalgia today. Some people don’t really understand or know what this condition is, so of course being me and doing what i love best; explaining a condition. This isn’t really for my benefit as people who are closely by my side know what it is, but it may help you if you think you have it after reading or you know someone who suffers but would like to know more. Fibromyalgia is a long term condition and is also know as Fibromyalgia Syndrome or Chronic Fatigue Syndrome (as educated by my Rhuematologist.) Sufferers like myself experience pain all over the body but there are more symptoms than just pain all over such as increased sensitivity to pain, fatigue but more so in extreme tiredness that never goes, stiff muscles, insomnia, memory and concentration issues (i like to call “brain fog”), headaches, and IBS also links with it. Obviously i have IBD (Inflammatory Bowel Disease) which is Crohn’s Disease, however before my surgery in June 2015 i had both types. There has been arguments for years with different consultants and surgeons as to whether you can have both Crohn’s Disease and Ulcerative Colitis or not, i can confirm that i did indeed have both. Many people who suffer with IBD or IBS don’t often realise that they are very different from each other and it’s important to know that. IBD is an inflammatory condition whereas IBS (Irritable Bowel Syndrome) is a SYNDROME, but did you know that you can also have both? Even after surgery it can still happen.

So looking into Fibromyalgia, i’ve found that it’s not really know as to why it can happen but it is believed that it is linked with autoimmune conditions and chronic conditions. Some triggers such as surgery or child birth can “bring it on” so to speak. It isn’t a rare condition and many people suffer and it is becoming more common, however it is very difficult to get diagnosed and many go through years for a diagnosis (i’ve waited 5 years.) Now what is hard to understand is that there isn’t a specific test for this, so that in itself makes it difficult-let alone talking to a professional about it. Treatment wise there isn’t much options in fact mainly 3; medication such as antidepressants, talking therapy and life style changes such as exercising.  It is difficult when being diagnosed and you don’t know anyone else who suffers, so researching support groups online and on social media can be really beneficial. Fibromyalgia Action UK are are charity who can offer information or if you have any questions, who also have support groups too.

A few months back i was diagnosed with Hyper Mobility Syndrome, today i got some equipment and exercises to help me with day to day things and also help me gain some muscle mass back as i have lost a hell of a lot and my weight continues to drop too. Just for those appointments today i am so grateful to the lovely people who took time to sit and explain things to me and help me in every way they can! My mum also has this and my specialists explained that it is passed on through generations and that its something i was born with. Joint hyper mobility syndrome usually runs in families and can’t be prevented. The joints are loose and stretchy because of the tissues that make your joints stronger and support them are weak. The weakness is caused by collagen that strengthens the tissues are in small quantity. You’re probably wondering “what the hell is that?!” i thought the same thing and i had to ask exactly what it meant. Basically it means you are more flexible than normal people, where your joints are more flexible than other people’s such as being double jointed. The symptoms are very alike with Arthritis such as pain and stiffness in your joints and muscles, dislocating joints, bad balance and/or co-ordination, thinning skin, digestive issues such as constipation or diarrhoea. Diagnosis requires your GP or the person you see to ask you some questions and asking you to do some movements (and yes they hurt!!) Treatment is pretty hard as there isn’t much to help but things like light exercises, controlling pain with pain medication and improving your balance can help (i have started all three today.) If you suffer then my advice to you would be not to over exercise and find an even balance of rest and doing things! If you are also looking into ways for some relief, it was suggested taking warm baths and hot water bottles can help.

Lastly, i have been referred to a Vascular Eye Specialist (ophthalmologist.) Over the past few months my vision and eye pain has become much worse and the blurring is lasting for longer periods of time. In the most recent few weeks my veins have been bruising and swelling, causing me quite a lot of pain and some days my eye is so swollen and red that i simply just don’t open it. From researching, what i know about this is that it is a disruption of the functioning of the optic nerve, which joins your eye to your brain. The symptoms i get which i have also seen online is what i have already described above, followed by headaches (although mine are pretty much constant.) I also have terrible pain when i’m eating and sometimes without eating my jaw becomes incredibly sore. Treatment is usually steroid eye drops so nothing too drastic. It’s hard to tell the difference between this and migraines but the main factor of difference between the two is pretty easy to spot, and that’s eye redness. Sometimes it can cause other issues but so far i’ve been OK except from sickness.

I’m also undergoing a small procedure at some point to take biopsies to determine if my rare type of Crohn’s Disease has spread, i had an MRI scan yesterday too, to see whats happening internally. So it’s been pretty busy and will probably continue to be! I would also like to highlight that during all of these illnesses and diagnoses that my blood tests have always shown up fine, and from reading what i suffer from and the things i go through that blood tests are NOT the definite and the be all way of seeing what is really going on. If you are a health professional reading this then i would like you to understand this, infact i strongly ask that you do. If you are a family member or friend and you have a loved one suffering but yet blood tests comes back fine, it doesn’t mean that that person is OK. Mentally it is tough too so supporting your patients, friend or family member helps so much. We doubt ourselves every single day and the guilt that consumes us is soul destroying, so by understanding and believing in us makes it easier for us to cope. Thankyou.

Chronic Illness Blogs, Personal Blogs

IBD and Menstrual Cycles

It’s been a long time since my last blog! I’ve not been too well and I thought I would talk about a common issue/most recent issue I’ve been having that many of us women suffer from that is impacted by IBD and vice versa.

Since before, during and after my first diagnosis of Crohn’s Disease and Ulcerative Colitis in 2012, having my time of the month was beyond hell. I found that when I was due to come on my IBD would flare extremely and it would make my joints more swollen and painful than normal. I have also suffered from migraines since I was 11 and ever since I had my first period my migraines became much worse and more intense that i couldn’t open my eyes most days along with the worst vomiting i had ever encountered. With both of these issues combined it was agreed by my GP to go onto the mini-pill when I was 14 as the normal pill wasn’t suitable due to my migraines. This worked OK until my IBD flared severely when i was 17 and i wasn’t absorbing it some days and nutrients etc which meant that my cycle was completely messed up. For years i had this issue and iIstopped taking it for about a year before i had surgery and my cycle still never returned to normal (still to current day.)

In 2015 I deteriorated and couldn’t keep out of hospital, i wasn’t responding to steroids or the methotrexate injections and tablets. During this time i had two cycles and it intensified my anemia, pain, vomiting, migraines and fatigue. I caught Sepsis from my large bowel Crohn’s and Colitis being too aggressive and this resulted in emergency surgery for an Ileostomy which i later then named ‘Lola’! It was a hard recovery but I was up only a few hours after my surgery sitting in my chair and got home a week later (you could say I’m a pretty determined girl and i don’t give up easily!) So because everything had settled down i then tried the mini-pill again but sadly it passed through my small intestine and into my bag. With that option completely out the window I remained off contraceptive pill, then I had my first period since surgery when my rectal stump was flaring and it was agony. I lost so much blood from my cycle and my rectal stump i couldn’t keep off the toilet and I went through packets and packets of sanitary towels. Only three months later I had a second operation to have my rectal stump removed and i was up and walking round HDU the next morning- I had never felt so relieved to have it gone and my monthlies had also stopped.. so to me i reckon my IBD contributed to my monthlies.

After this surgery my periods disappeared for a few months until the end of January in 2016 and my problems started again but that time they couldn’t understand where my issues were coming from apart from my liver function being over 100 which then settled after a few weeks and being diagnosed with Hepatitis which also then disappeared. In April I was taken in for another operation to place in a permanent seaton stitch that kept causing infection and an EUA of my barbie butt and vagina and biopsies were taken. I remained on no IBD medication either as everything kept coming back fine i.e bloods and stool samples. In January of 2017 i was rushed into hospital and had emergency surgery for a perennial abscess and i was then taken in again afterwards for another operation of my barbie butt for a refashion of the wound and biopsies, an MRI scan and I was then diagnosed with Vaginal, Perennial and Pelvic Crohn’s Disease. Later from then I was diagnosed with Behcets Disease, Arthritis and had another operation on my barbie butt to try and clear all infection which also confirmed Crohn’s Disease in there too (yep aren’t I a lucky one!)

Since then I have had a few hospital admissions for sepsis, fistula infections, urine infections, my IBD and behcets flaring, arthritis flaring and my barbie butt getting recurrent infections and abscesses. Due to all these conditions my pelvis has fluid inside which cannot be drained due to my allergies to antibiotics, high risk to sepsis after surgery and how aggressive my Crohn’s is that any surgery will aggravate it and cause me more issues with fistulas as my pelvis is riddled with them. I also have no options for contraception except being careful due to the following issues; the injection causes a type of arthritis, the coil is a no go due to infection risk and going into flared tissue, the implant is also a no go due to risk of infection again and also due to the hormones that it produces which will make my migraines worse and any type of pill won’t be absorbed. My periods had also vanished again and this time i was told i would be lucky to ever have one again due to how far my disease is progressing and there is nothing that they can do except hope that the current treatment called Vedolizumab that i have been on since late January will start to work. The day after receiving that news i thought a miracle had happened- I had my first period in months!! Then my pelvis and barbie butt pain got to the point where I was unable to move or eat and it then started to bleed every time i was able to move. Blood would soak through my pads and clothes and i filled bed pans full of it, the nurses and I were horrified. I have had only one cycle since then and I was almost rushed to hospital due to losing to much blood. I woke up the morning I started and I was soaked in blood, later that day I went to let my dogs outside and when I got up my trousers were drenched in blood and it was running all down my legs. I have had a tablet that stops your cycle a few times so was advised to take it then too but it didn’t work this time, I had to somehow deal with it until it stopped.

Now they have disappeared again but I know that the next time I get them that it will be the same scenario. So now comes into the part of this blog where I share what has helped me when suffering from a problem all of us women get. I can tell you there aren’t much things that can help and what may work for me may not necessarily work for you, however trying is better than not trying! For me taking regular prescribed pain relief and anti sickness can reduce the pain and sickness that i get, a hot water bottle soothes and sometimes has helped me sleep, heat patches which you can get from Boots help loads too and loose-fitting underwear/bottoms such as joggers or pj bottoms and either a hot shower or warm bath.

I’d also like to highlight that only under 8% of IBD patients with crohn’s are affected by vaginal/reproductive crohn’s so it is rare.

Chronic Illness Blogs, Personal Blogs

Coping With Phantom Pains  

So i know that it is common for many people to have a phantom pain when something has been removed from the body and is no longer there. What really mind boggles me is why we can still feel something that is no longer in our bodies or part of us anymore and I keep asking myself “Why?”, “will it stop” or “will it happen often?”.

Doctors once believed phantom pain was infact a psychological problem, but now believe it’s a sensation that comes from the spinal cord and brain. Phantom pains happen to people that has had an arm or leg removed and it also occurs to many after they have had surgery to remove other body parts such as their large intestine, pancreas, appendix and many more! So really it can happen at any time in your life, even after ten years of feeling nothing, one day it can happen! Your body has grown with these parts and even though you know they are gone your body can take a long time to adjust to this.

Anyway, Today is what i call ‘Phantom Day’. A day of feeling that you have to poo but you can’t because once you have been sewn up (known as ‘Barbie Butt’) it’s actually impossible to! Many who have temporary stoma’s, feel this too and pass mucous which is the body’s natural lubricant produced in any part of the intestine. On these days i feel the pain of what i once had when i had a bum or rectal stump or when crohn’s and colitis decided to show it’s presence. Like many others, i thought this was impossible and getting your head around it can be challenging..Fear not! If you are reading this and feel that the pain you are experiencing doesn’t make sense, why you have this terrible feeling, cramping, spasms and heaviness i want to tell you that you are NOT alone. It may feel like things aren’t getting better but they will, only the timing is uncertain.

If you have pain relief, take it. You may feel woozy or unable to do things due to tiredness such as cancelling plans with a friend however you come first. If you want to have a bath then you have a bath! who cares about that sibling or flat mate who always wants the loo when you decided to have a soak? You time is so important when experiencing Phantoms days, days of pain or simply pure exhaustion. Who cares what people think if you want a day in bed with icecream and netflix? People will judge you no matter what you do and you can’t control their perspective on things, but you can help them understand why if they are willing to except how you are feeling.

I have been reading a great book this week called ” The Life-Changing Magic of Not Giving a F**k” by Sarah Knight and i can tell you now, its brilliant. I’m not even half way through and already i feel my view on people in life is some-what different! A great line i quote from the book..”There are two reasons you tend to give a fuck about what other people think: one, because you don’t want to be a bad person, and two, because you don’t want to look like a bad person.” It explains that not giving a hoot about what people think is right but doing it in the right ways is so important. It is priced at £12.99 british money and is available on Amazon or in Waterstones book stores.

If you are struggling to cope with any type of pain or coming to terms with life then i highly suggest picking a hobby you are able to such as reading, colouring in adult colouring books or walking. Do what you want to do, when you can and don’t be forced to go out for that one drink because you don’t want to let friends down, if they love you they will understand. Love the life you live and live the life that you love. 💜

Personal Blogs

Recovering From Barbie Butt Surgery

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Hey everyone! I haven’t been on for a while so i thought i’d share with you my past few months!

Shortly after my last post, I received surgery to remove my rectal stump (also known as a Barbie butt) and it was a great success, untill i got a very bad perineal wound infection. I was readmitted and given antibiotics five times a day with three different kinds in which it made me very sick and weak. I was then given something stronger which i had an allergic reaction to and i almost died. I had a lot of health professionals around me, pumping it out of system with many things and awaiting for my fever and heart beat to calm down before my body went into serious shock, it was pretty scary!! They managed to find a balance of antibiotics and after a few weeks i was up and starting to heal! When i got home, the guy that i was dating decided to leave and end things between us because he was fed up of ‘me sleeping and relying on medication all the time’ and couldnt deal with me not only being ill but the hospital admissions and having an Ileostomy. It’s taken time but things are looking up and i have never felt better to be on my own and to only rely on myself!

I have celebrated my first ever christmas at last! I still have a great support network around me full of friends and family, i couldn’t be happier! I also turn 21 on the 5th of January and have my very first Foam birthday party booked and planned!!! I am so excited and can’t wait to make my birthday a memory to never forget! Of course, it does feel extremely weird for me as i feel i should be celebrating my 18th as I missed that due to being so unwell and on the toilet constantly.

I like to think that when something bad has happened or is happening, it can only mean that something better and good is waiting for you! A very wise and lovely lady who has helped me so much this year once told me ‘bad things are only temporary and only last a little while untill something greater appears’. I hope that if you are reading this and in a bad place right now, i cannot emphasise to you enough that is not forever and your time will come! Have hope, keep fighting and stay strong because in the end it comes down to us alone to keep going and NEVER quit!

Chronic Illness Blogs, Life With A Stoma, Personal Blogs

Surgery Number 2

As i lay here in bed typing this, i realise how lucky i am to be alive after all that has happened so recently!

I am in hospital (admitted just over a week ago!) and awaiting surgery to have my rectal stump removed. The Crohns Disease and Ulcerative Colitis is extremely active, so much so that it has caused a narrowing, complete ulceration all over the rectal skin and tissue, a few fistulas and an abcess! So as you can all imagine it’s been painful but i am so excited to have this surgery! Crohn’s Disease and Ulcerative Colitis or any form of IBD and serious illnesses can really bring out the best in us and the worst is only to show how strong we truly are! Never forget that fellow warriors! Will keep you all updated soon, untill then take care and lots of love and healing wishes to those in need! 💜

Chronic Illness Blogs, Life With A Stoma, Personal Blogs

Trying To Stay Positive

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This blog is from 2015 when I first started blogging. Reading back on it now it is almost hard to imagine that I coped through this.

I haven’t been on here in a while so I do apologize! I have been feeling really unwell lately and I spend most of my spare time on the sofa, on the toilet or doing the housework.. I can’t stand a messy house! The picture above is from my long month hospital stay before surgery.

Last week on Thursday the 8th of July 2015 I took a really bad turn of vomiting and I could not get off the toilet… the sensation was like peeing through my rectum and then looked to see it was blood and the smell was horrific. I was sweating so much when I wiped my stomach my hand was instantly soaked with sweat, yuck! Still almost a week later, I don’t feel any better and after that night my trust in health professionals has been really let down. I was rushed in by ambulance and then put into a and e walk-in reception/room where I waited four and a half hours then to be told to go home without seeing a consultant or surgeon and none of my consultants etc were told I was in and a note was left on the system stating I had been in and gone but not describing why or my problems, so now I will be writing a complaint.

Today the doctor came to my house after calling my GP and NHS 24. I couldn’t eat at all and struggled to drink, she took some bloods and I will find them out tomorrow which is when I see my surgeon and stoma nurse. Lola is doing really well and working very well, although this past few days she has been seriously active and it is worrying me slightly. I have a very sore open wound right under my stoma which burns as if it is on fire so have been very uncomfortable for a while. I managed to get my bedroom decorated so I can now sleep in my own bed and not on the sofa anymore, woohoo! I love to make home improvements, there is always room for improvement in many aspects.

Some days I can get really down and find it hard to process why I have Lola and how it even happened. I can become very depressed at times too. I also like to call my parents and other family members regularly and find this really helps more than anything. I still cry quite a lot but I think it is healthy rather than holding it in and exploding into a terrible state!

Life can be cruel, but working together we can try to make it a better place and help each other.

Goodnight and take care.

Alannah x