People's Stories!

What’s Your Story? Meet Lauren!

At the age of 5, Lauren suffered severe tummy pains every so often and constipation. As Lauren grew up the pains and constipation also grew worse. By the age of 18 it went downhill for her with constant hospital admissions, countless blood tests, scans, laxatives, painkillers, many sleepless nights and lots of down moments. 11 surgeries and over 25 procedures later, Lauren was told she had Crohns Disease. A year later she was then diagnosed with Hirschsprung’s disease.

“I tried every laxative possible from Movicol, picolax, laxido, tablet form ones, enemas. And I even waited to try a new tablet which was waiting for funding called Prucalopride.”

Lauren has been on various anti sickness medications to help with vomiting and nausea, and is currently on an anti sickness medication called Cyclizine. She has tried so many painkiller medications and is currently on morphine patches and oramorph, taking 40 tablets a day. Lauren also suffers with Chronic Fatigue Syndrome (also known as Fibromyalgia) and mental health conditions such as Depression, BPD, OCD, PTSD and Anxiety. After some time, Lauren was then diagnosed with PCOS which has caused her severe fertility problems (for more information on PCOS please click here.), Restless Leg Syndrome and Carpal Tunnel Syndrome. She also has back problems which causes a bulging disk in her lower back causing Sciatica. After surgery she developed a bladder problem which requires her to self catheterise (for information on all types of catheters please click here) when required.

After years of suffering with Crohn’s Disease and trying many medications to control it, Lauren went through surgery to have an ileostomy bag fitted. “My stoma surgery was January 14th 2014 and life afterwards was extremely difficult for me, mentally and physically. I was so low recovering from my surgery with the week before having to have a minor op and then my stoma operation which is major. 5 days later I was rushed back in and I nearly died. I wouldn’t go out the house for a while and my stitches had split open and I was on antibiotics for 6 months.”

Despite being unwell and having a stoma bag that leaks from time to time and sore joints, Lauren works full time and finds that it can be extremely stressful with several invisible illnesses and using the loo, carrying supplies at her work station. Lauren has had terrible experiences when using disabled facilities and being refused access to toilets with her “can’t wait card”. “People can be judgmental and not understanding to my situation. And it takes a bad affect on my mental state at times too. My rock through it all has to be my partner Lee and my Dad even though he is poorly and lives in England as I now live in Belfast.”


Lauren’s message to everyone out there with a Chronic Illness or Stoma:

“It does get better I promise even if it seems like it won’t, it will! I couldn’t empty my bag or even change it alone.. I’m 5 years on living with my Ileostomy now and I’ve accepted it’s part of me! I’ve had a few negative times with my bag from online groups and certain individuals being nasty and saying I never had a bag but the best thing you can do for yourself is ignore them and block them then move forward! I try my best to get through those times. Keep smiling and forget those small minded and judgmental group of people.”

People's Stories!

What’s Your Story? Meet Denis!

Denis (22) shares his story and information about Crohn’s Disease, as part of the Crohn’s and Colitis awareness week which starts on the 1st of December untill the 7th of December! People just like Denis will be sharing their stories for the next week or so via social media!

Inflammatory bowel disease (IBD) involves chronic inflammation of all or part(s) of your digestive tract. IBD primarily includes Ulcerative Colitis and Crohn’s Disease. Both usually have symptoms that include severe diarrhea, pain, fatigue and weight loss. IBD can be debilitating and sometimes leads to life-threatening complications.

Before Crohn’s I was how would you say an active person, outgoing, full of energy and always happy. One day I got really sick. I was in 5th class just aged 12 and at the time i was with my friends enjoying school. Then that one day where I was sick my life changed forever.

In the first few months, I noticed I was losing weight and not eating, any time I did eat I would get sick. At the age of 12 I weighed about 5 stone (or 31.75kg). Basically, I was all bone which was really scary not just for me but my family, too. Between doctor appointments and hospital appointments we could not figure out what was wrong for 5-6 months. I got referred to Crumlin hospital and I was admitted straight away to find the cause of my problems. Not many people would have known until now that I had a upper endoscopy and a colonoscopy!

After days of waiting for the results to come back we finally got a call to go into the doctor’s room. He sat me down at the table and said “Denis you have a condition called Crohn’s disease”. I will always remember it because at the time I didn’t know what it was and it was a shock at that age. I was given medications to help control the disease from day one which includes Steroids, Asacol and Mecaptipurine. Luckily, my friends at school were really understanding and it really helped at school after my diagnosis. Still to this day I take Asacol, Folic Acid, B12 Injections and Calcium. There is NO CURE for Crohn’s disease at present. The bad side to the medications are the side affects, for 12 weeks during my steroid treatment my face went like a balloon, also known as “Moon Face.” At that age I didn’t know how to explain it to anyone who asked. Crohn’s can be very exhausting, one minute you can be full of energy and the next minute you feel like you want to sleep for a week. I have to be careful of what I eat because some foods can give me cramps and cause a flare up. For many it is also really similar and it can cause a flare up anywhere in the digestive tract, which can make you really sick if untreated. Of course, there is a lot more to this disease than that! So if anyone has questions please ask me and don’t be embarrassed by it!

Now at 22 years old it has been 10 years since my diagnosis. I coach an under 12’s soccer team and have been for 3 years, it really helps to keep me going! Life hasn’t been easy, relationships have been hard as this illness has given me low confidence but life goes on! I’m in remission now and fighting like never before!

-Denis.

People's Stories!

What’s Your Story? Meet Amy!

Amy (31) pictured above, shares her story of her incredible journey, suffering from multiple issues along side IBD (Inflammatory Bowel Disease.)

My Mum and I were fobbed off by my GP at my local hospital for years until I couldn’t get out of bed or walk. One day an out of hours GP came to my house, looked at me and said to my mum “get her to hospital now” so off I went in an ambulance, I had just turned 14. The hospital I went to had no idea what was wrong with me! After a week there on pethidine, a very strong pain killer (which as a 14 year old kid sent me off into space for hours!) I was transferred in the middle of the night to a specialist children’s hospital. In two days they knew exactly what was wrong with me and I was diagnosed with Ulcerative Colitis by the specialists who worked there. My consultant who was a specialist in Crohns Disease and Ulcerative Colitis (also known as a gastroenterologist) said it was the worst case he’d seen in 28 years! I was in hospital for 6 months on an isolation ward and the drugs were making me worse, so eventually I got an ileostomy formed. Oh my god it was instant relief like a weight had been lifted off me!! For the first time in years I felt well! A year later I went back for my reversal and it was an absolute disaster. I was in surgery for nearly 16 hours and ended up in intensive care, I have only one memory after that surgery and it was me complaining that my left leg felt hot but I was told that I had an epidural so it was impossible to be able to feel my legs. I continued to complain about my discomfort and I was ignored. I don’t remember anything after that apart from being told that 3 hours later I was having more surgery to possibly amputate my leg due to compartment syndrome. That operation took 15 hours and I nearly died a number of times due to 31 hours of anaesthetic with only 3 hours in between. They told me my left leg had swollen 3 times than it’s normal size and they had to put me in a medical coma whilst they left my leg wounds open, as the pressure was so severe they couldn’t close it. After many operations (I can’t rememeber the exact amount of surgeries as I was still in the coma.) I was woken up and obviously very confused! I couldn’t really speak properly because of the ventilator and I was only 15 and obviously very scared! I ended up loosing 75% of the muscle in my left leg and my tendon was put into a splint in half so I could only move my ankle a little. My Ileostomy reversal failed as I couldn’t put any weight on my leg for 3 months, so I was completely bed bound. I then had to have several more operations to remove adhesions (scar tissue) and 6 months later I had my stoma back permanently and starting to learn to walk on my leg again, which they had fused my ankle at 90 degrees so I could try to walk. They told me in the beginning that I would never be able to walk again. I was determined that I would walk again and I did. After intense physio (which was one of the hardest things I’ve ever had to do) 8 months later I was walking a little with a frame and using a wheelchair but within that year, I got rid of the wheelchair and was using 2 crutches with a leg splint that fitted into my shoe and completely defied those odds! Honestly it was the most painful thing I’ve had to do, being young and motivated I just wanted to be as mobile as I could. Now 15 years later I’ve had a total of 43 operations on my tummy and leg! I’ve had all my toes pinned and I walk unaided (I do have a stick but I’m not a fan of using it!) Unfortunately when I was 21 I was diagnosed with Crohns Disease due to bleeding heavily into my Ileostomy bag. The medications used for IBD I have either been allergic to or they make me worse off with the side affects so I’ve struggled with constant flaring. Due to the active disease and medications failing, I’ve had many fistulas over the years and lots of abscesses which were awful. I’ve also had to have a paristomal hernia (which is a weakening of the abdominal muscles) repair too which was my 10th laparotomy and has left me with chronic pain. I also have a horrible pressure pain inside my pelvis area which is still currently undiagnosed BUT despite all of that awful shit I’m now 31 and I have an amazing group of family and friends! I work 3 days a week in a drug and alcohol treatment centre which I love. My life is full of pain and frustration but also joy and laughter and anyone who knows me knows I don’t do sympathy or fuss because after all that I’m still alive and don’t want special treatment!

Reading Amy’s story is just incredible. Well done for sharing!

“Thanks for reading – Amy”

People's Stories!

What’s Your Story? Meet Our Life With Crohns

Our Life With Crohns is an Instagram support page set up by Roza after being diagnosed with Inflammatory Bowel Disease, 4 years ago.

At the age of 17 Roza finally got the diagnosis of Inflammatory Bowel Disease and wanted to make a (safe haven so to speak) page on Instagram where people could ask questions and recieve advice from the world wide IBD Community. Some questions related to IBD can be embarassing for individuals and some even think these can be silly questions, however that is not the case.

The best part about the page and questions is that all sufferers are kept annonymous so nobody will know who it is that posts the question. Roza tells me that “the page first started with posting meaningful quotes with what it was like to suffer from IBD and after some time people began to ask more questions and it then developed fully into an asking questions support page.”

The time and support that Roza has put into this page has been completely from her own time, no money is associated. However Roza has had issues with spam messages and never posts them. Roza also has a personal account, here. It is a fantastic page and it’s a great opportunity to be able to share your experience and advice with others who seek advice and answers to questions you may know. If you would like to post annonymously please click here.

You do great Roza, keep up the good work! 💜

People's Stories!

What’s Your Story? Meet Ella!

ellas blog picture

Little did I know how much I should have appreciated my health throughout the first seventeen years of my life; although it didn’t seem like it then, living with just the diagnosis of Crohn’s Disease was a dream in comparison with what was yet to come.

Looking back now, I probably did fall ill more often than my friends, but at the time thought nothing of it. It must have been something I’d eaten, maybe I was overtired or I had just picked up a bug that was going around. I’d also had multiple dislocations but had a reason in my head for each one and thought they were ‘normal’. I’d always been sporty and into dancing so my hip must have come out because I was standing awkwardly in ballet, and my knee had dislocated in the night but that must have been because I’d moved in an unusual way; never did I think I’d have the life sentence of numerous chronic illnesses associated with my name and be in a position to doubt my ability to remember what ‘normal’ felt like.

I started having palpitations and feeling really faint when I stood up – I was referred to a cardiologist who ran first line tests such as 24-hour monitors and an echo. My heart valves were found to be bowed, and my heart rate unusually high; I was started on beta blockers but told not to worry as it wasn’t thought to be serious although there was a rare condition called ‘POTS’ in the back of the consultants mind, he didn’t think it would be that. He said that stress could be contributing and I have always been an anxious person. Despite this, I did research the condition, and the symptoms seemed to fit in with what I was experiencing but I tried to believe that I was going through a stressful period doing my A-Levels and it would pass.

I was experiencing other symptoms and it seemed like nothing was linked so I did start thinking it could all be explained by the stress I was going through. My bowel wasn’t really working so I was relying on different laxatives, and my bladder meant that weeing could take a lot of effort. I then started suffering hives on my skin that often appeared after events such as taking a bath or shower which continued after discontinuing many shampoos, conditioners, shower gels and soaps, meaning it could only be put down to contact with the water. I saw a dermatologist who put me on anti-histamines and gave me a steroid cream to use when the hives appeared.

I happened to mention my other bowel problems to my Crohn’s consultant who referred me to Professor Aziz whom diagnosed me with Ehlers-Danlos Syndrome with suspected POTS and MCAD secondary to that. It was a lot to take in and I spent a lot of time on the internet researching it and trying to understand what the diagnosis meant for me. I was then consumed by the revision that needed to be done to get through my A-Levels and so didn’t have any time to think about my ill-health apart from it frequently rearing it’s ugly head, getting in the way of my revision and exam timetables.

I was elated beyond what I can put into words in August 2015 when I got my A-Level results and, despite everything, had gained my place at Cambridge University; I’d always been academically driven and this was my absolute dream come true. I completed my first year and it was everything I’d imagined, I loved every second. However, the first year wasn’t easy with my health deteriorating and dealing with multiple admissions to Addenbrooke’s for various problems. I was waiting for lots of appointments and procedures but I saved all of these for the summer holidays so they didn’t interfere with my university life.

The first thing I was waiting for was a cystoscopy (a camera into my bladder), and Botox in my bladder to try to cease spasms and help it to work again, as during my year at Cambridge after sedation for a sigmoidoscopy for my Crohn’s, my bladder went into complete retention and so I had an indwelling catheter to empty it. The cystoscopy was due to be a day-case, but after the general anaesthetic I went into type 1 respiratory failure and three months later I was still admitted and so had to make the extremely difficult decision to intermit from university for a year. I say it was a decision, but the truth was I had no choice. Being in bed for three months, some of which was spent in Intensive Care, meant that I was badly de-conditioned and my POTS severely flared up, meaning I couldn’t even sit up without fainting. There wasn’t an established cardiology unit at the hospital where I was, and so I was transferred to King’s College Hospital for a further month where I was started on Ivabradine, which at the time was like a wonder drug and allowed me to get to a state to engage in some physio, and eventually be discharged home. However, this was in a wheelchair and with EDS and POTS symptoms that were much more advanced than when I went in. It was also discovered that my skin issues were due to Mast Cell Activation Disorder which I learnt also often occurs secondarily to EDS.

The year that followed was more difficult than I ever imagined, battling with my health and my condition deteriorating, as well as getting used to relying on a wheelchair which I hated people seeing me in. My Mum took the year off of work and was my full-time carer, but for many reasons after the 12 months she had to return, and my health wasn’t in a state to allow me to return to uni, and so I had to take a second year of intermission which absolutely shattered me. We had to organise carers for me, but still now there are things I’m too proud to let them do and have to wait for my Mum to finish work.

My health continues to decline; I’ve recently had an ileostomy for my bowel, but six months later I’m still suffering severe gastroparesis symptoms which has led to me being tube fed in the past. I’m waiting for many other operations including a sacral nerve stimulator for my bowel, a MPFL reconstruction and a septoplasty. I’m now at a stage where, begrudgingly, I’ve had to apply for a third year out of Cambridge with a hope to get back in October 2019. It’s been a relentless journey to say the least, but I’m stronger for my experiences which I regularly blog about at www.ellahollis.wordpress.com . I’m fortunate that despite the genetic component I’m the only one in my family with these diagnoses, but my family are there for me through everything and it impacts them just as much as it does me; they are my strength and for that I am eternally grateful.

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.

Life With A Stoma, People's Stories!

What’s Your Story? Meet Joanne!

 

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My name is Joanne and i was diagnosed with Crohn’s Disease at fourteen, two days before i was to turn fifteen. From then i was tried on various medication to suppress my immune system to try and get my disease under control, this failed. At fifteen i had to get my large bowel removed and an ileostomy formed and of course my dad and i agreed we had to name it! So we gave my stoma his name ‘Whinnie the Pooh” so it had a positive joke towards it! (ha ha.) I was left what is called my rectal stump which is your rectum and it sewed inside at the part where your large bowel had originally joined it, in hope that in a few years time when the condition had settled that i could have a reversal (where you are reconnected from the small bowel to the top of the rectum.) By the age of 20, i had another operation to remove my rectal stump and sew me up (like a barbie!) due to my crohn’s affecting that part too.At this point i was in hospital for so long that i spent my 21st in there and I was close to death at one point too, and had to have several other operations done. Since then i have been OK but still suffering from time to time at home and recently just had a hospital admission as my the crohn’s has now spread to my pelvis and reproductive region. It has been decided that endure more surgery (hysterectomy) at some point to try and rectify this and make my symptoms less severe and also due to the damage that it has done.

 

 Many others suffer not only the same as i have but in cases many have died. I also don’t want anyone else to have suffered like i have due to this horrible disease!

Chronic Illness Blogs, People's Stories!

What’s Your Story? Meet Melly!

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My name is Melanie McLaughlin, and I was diagnosed with Crohn’s Disease 25 years ago in August of 1991. I’d had problems way before this time and i’d been experiencing symptoms since I was 14 years old. Doctors fobbed me off for a long time suggesting it was tummy bug after tummy bug. I was informed I wouldn’t be able to get pregnant. In 1998 I had an emergency operation to remove 25 cm of my large intestines and small intestines. I had been rushed into hospital not long before this, as they thought my appendix was the issue. During the operation they opened me up to get to my appendix and discovered that it was fine. They then cut a further 12 inches down into my stomach and there they found 25 cm of my large and small intestines were twisted and black in colour which was caused by crohn’s disease, it had rotted right through the walls of my intestines. After the operation i was in remission for 5 years, due to Pentasa managing the crohn’s disease.

So I carried on as normal with my life as best as i could and then discovered I was expecting a child, yay! I had a lot of complications though, and was in and out of hospital all the time, due to the scar tissue developing from the previous surgery attaching to my uterus. After my first child was born the symptoms returned, and I started flaring up again and continued to be in and out of hospital, taking medication after medication, until they finally got it controlled. Distressingly, the flare up’s continued over the years, and one particular consultant even suggested that my flares and symptoms where psychosomatic – all in my head! How I wish..I somehow got myself into remission again and fell pregnant for the second time in June 1999! As with the previous pregnancy, I was in and out of hospital due to the complications with the scar tissue on my left side. Shortly after I delivered my daughter, I was in remission straight away and it was great. I then fell pregnant again when my daughter was just 4 months old! With this pregnancy, it was plain sailing until I was 32 weeks and problems with my Crohn’s started to reappear and i was in another flare. I went into premature labour and my son was born 8 weeks early due to Crohn’s being so active. It seemed that giving birth that early didn’t agree with my body, and the flares continued, as did the doctors who continued to prescribe painkillers and fob me off. It was a constant struggle, day and night but I carried on with positive thinking and attitude.

My most recent operation was back in July 2013, and had more of my large and small intestines out. I was very poorly after the operation and had to be in ITU/ICU ward for 3-4 days due to a collapsed left lung and pneumonia. The operation itself hasn’t put me into remission, and i still have active disease. I saw my consultant on the 15th July 2014 and at that time I asked him why I was waiting so long to get into rheumatology, i then had a colonoscopy and it showed that I wasn’t in remission (as i had presumed), with a lot of ulceration, along with extensive scarring (also known as adhesions.) Aphthous ulcers, confluent ulceration, mucosa, patchy ulceration in erythema. I have been on Pentasa, Humira, Colesevelam, Loperamide, Folic Acid, B12 every 6 weeks, Vitamin D and a steroid called Budesonide since. At this point, I was still waiting for my rheumatology appointment to be confirmed, and I had been on the NHS waiting list since May of 2014. Eventually I was referred and was sent for a bone density scan and it showed that on top of the Crohn’s disease i’ve got osteoporosis. I had a total break down the week after, on and off for a few weeks due to Crohn’s pains and the nasty side affects of medication used to control it with bugs and infections I kept coming down with! Sometimes it gets the better of you and i’ve grown tired of being ill all the time and I don’t get invited out any more from people close by. The mental and emotional side of the Crohn’s gets to me on a daily basis. Day in day, I am scared and worried that if I do go out i have an accident or collapse because of the pain and some days I truly don’t know how much more of it I can take.

I have met some amazing people through a support groups via Facebook and i have so much thanks to GETYOURBELLYOUT is a fantastic group, I am going to their 3rd Charity Ball this year where i get to meet the friends i have made, that support me on a daily basis!

I would like to say that my message to you all is this: FIGHT ON.,BE POSITIVE.,DON’T WORRY and BE HAPPY!

People's Stories!

What’s Your Story? Meet Kyle!

Hey everyone, my names kyle I’m 22!  I have crohns disease and this is how my journey began…

Over a year ago, I had terrible stomach pains, diorrea, sickness, weight loss and blood in my stools. It was so sore and I was so worried that i went to my doctor several times and was diagnosed wrongly that i faught for a long time till I finally got an appointment at the peter brunt centre in Aberdeen for a colonoscopy. I didn’t have a clue what was wrong with me,  then after the colonoscopy results i was admitted to hospital with severe pain, bleeding, high temperature and i was so weak. Ater the endless months of fighting with doctors i finally got a diagnosis of crohns disease in October 2015! My fighting days were finally over and i now knew why i was so ill. Constant flare ups and severe pain means I struggle to work in a job that I love doing which is really frustrating. I’m currently on treatment of azathioprine, pentasa, ferrous sulphate and steroids. I don’t normally speak about having crohns  as I know people have it a lot worse than me and im embarassed about it. I wouldn’t have wrote this if it wasn’t for an amazing inspirational person, who I really thank for helping me to see crohns in a different light. I also lost my confidence and have hid away for a long time, but thanks to you Alannah I am going to look at my disease different and hopefully get my confidence back and I would just really like to say thanks to her and to stay strong!

I am a great man united and Aberdeen football fan and although times have been hard, football has kept me going. I used to go to all the Aberdeen games in the past and i had a season ticket for 7 years! Crohns has put that on hold just now but i really want to get back to it without worrying i will flare at a game!

Heres a picture of my favourite football tshirt!

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Thankyou Kyle for your story! I am glad you found me through my blog posts  and i am so glad that i have helped you! Get well soon.