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An #IBDStory by Jessica Mary Logan When looking at my super girl photos you can see that I look NORMAL on the outside but there’s a lot that effects my ability to do things on a day to day basis, which is why you should NEVER JUDGE anyone by their front cover. This is the meaning for the ‘N’ being the wrong way on invisible. Even when someone says ‘they are fine’, you will never truly know how they are feeling because many people hide their struggles. I know that many of you will be able to relate to the judgement you can get on being ill whether it’s calling in sick at work or having to let friends down etc I have been tackling with Acute Severe Ulcerative Colitis (A form of Inflammatory Bowel Disease) since the end of April 2017 but unfortunately due to misdiagnosis this caused me to be hospitalised in July 2017 and requiring emergency surgery within a week of diagnosis. To be told that you are on death doors is scary no matter how old you are and to hear these words at the age of 25 came as a shock along with the rest of the experience, which has been life changing. None of my loved ones really understood how unwell I was, not even myself. I knew I was in a lot of pain but I assumed I would be admitted into hospital, diagnosed and walk out fine with treatment. How wrong I was. You will notice I have used the wording ‘ULCERATED’ instead of ‘Ulcerative’ this is because UC is the only illness that uses that wording so I’m hoping you can relate more to ulcerated. IBD is not IBS. It is an auto immune disease that cannot be cured. Many people I’ve spoken to with IBD tackle ‘know it alls’ everyday. They get told to start a special diet, to take a specific medicine and to have a healthier life style. Some of these can help with flare ups but they will never cure someone. Everyone’s scenario is also different so what may work for someone may not work for another. It can also stop working so you are fighting a losing battle. I firstly noticed something was wrong when i would leak mucous when bending over but it got to the point of leaking when even moving position on the sofa. I stopped going out because of this as I would have poocidents, which was extremely embarrassing. I would be crippled in pain on the floor due to abdominal cramping and I would cry on the toilet because of passing lots of blood. It was that bad in hospital I was going to the toilet up to 30 times a day and a nurse even asked if I was on my period 😂. I have received numerous tests for my symptoms, illness and Stoma. They began with blood tests to check inflammation markers (these were fine until the worst stage of my flare) and stool samples to check Calprotectin levels for inflammation markers. Since being hospitalised I’ve had continuous blood tests and X rays, Flexo Sidmoidoscopies, CT scans, MRIs + Anal examinations. Some of these tests / examinations are not pleasant but luckily I don’t get embarrassed easily. Some people are even afraid to go to the doctors to talk about their symptoms, let alone going through some of these. On diagnosis (from my flexo sidmoidoscopy and biopsies) my whole colon and rectum was severely inflamed and covered in ulcers. I had to have daily X-rays before my surgery due to the high risk of my bowels perforating, which also showed my bowels were severely distended. My bloods were taken pretty much everyday. It’s usually easy to take my blood but they struggled getting my veins even in my feet they couldn’t get a cannula in. I had the critical nurses come to help and numerous doctors causing me to be covered in bruises. When admitted into A&E I was started on a high dose of prednisone (steroid) and Mesalazine, which are the standard medications for IBD along with fluids. 4 days later I received my diagnosis and was started on the highest form of treatment called Infliximab (also known as Remicade), which is an infused medication as well as hydrocortisone. Unfortunately my symptoms progressed so I was told 3 days later that surgery was required however I managed to hold them off a few more days to try and get my head around it. I was in complete shock, it was devastating to hear. My head was all over the place and it was horrible to see the effect on my loved ones. On the day of surgery I was scared... I had never even broken a bone. I had no idea what to expect, as I knew nothing about a Stoma but I was told the surgery would stop all my pain and give me back a normal life so I went down with positive thoughts. The Stoma nurse came to see me the following day to go through my supplies and showed me how to change my bag. I was mortified seeing my Stoma for the first time. It was swollen and looked like a foreskin hanging from my belly. I cried as soon as she left because I didn’t want to live like that. I felt disgusting and was scared that no one would love me anymore. I had always suffered with body confidence since I was in junior school and I had gained a large amount of weight through comfort eating so this completely destroyed any confidence that remained. After surgery I was receiving visits from a dietician who provided advice and a booklet on what to eat during my healing time and also post surgery. It was very overwhelming to get your head around as it’s very restrictive at first and there’s different foods to eat if your output is thick or runny. There’s also foods that should be avoided on all occasions (sweetcorn, nuts etc) however I have learnt that everyone with a Stoma is different, which I will mention later. On day of discharge I had no output (poo) and had pure blood in my bag however I was informed that it was normal so I was excited to go home. I was admitted the following day due to no output and horrendous pain from abdominal cramping. I was informed that I had a blockage (obstruction of the bowel / Stoma), which I had no idea could happen. I had a catheter put down my Stoma and left overnight to allow room for the output to move. Following this occasion I went back on 3 more occasions with partial blockages with the 4th one being the worse as I was throwing up and had to be taken in via ambulance. I couldn’t move without being in excruciating pain. It’s been described as severe labour pains but I was also tackling bruising following my surgery. The pain and cramping would last for days and no medication would disguise it (even IV morphine). No scans would show what was wrong so it was agreed for me to have emergency surgery. So within 3 weeks of my 1st operation, I was back on the theatre bed. During surgery they found that my bowel had twisted, which was causing the blockages and could have been life threatening if left. Following this surgery I was in a lot of abdominal pain, which was put down to receiving the same surgery in close timescales as tissue was still healing. I knew something was wrong when I couldn’t wash myself as moving would cause pain and no medication would help. My stomach started to swell and my scar was changing colour however I was informed everything would settle and it was ok. I had been in and out of hospital for nearly 2 months so was excited to come home on day of discharge. I was talking to some of the lovely ladies on my ward when I smelt a funny smell. I asked my mom if she had trumped them realised it was me as I felt this warm liquid running down my leg. I swung the curtain around and had noticed my main surgical wound was seeping and had burst open. They confirmed it was due to an abscess and blood clot building up. I went home with a drainage bag but ended up back in A&E the next day due to it fully opening causing a hole in my stomach. I had to take daily trips to the doctors to have my wound packed for 2 months as district nurses didn’t want to help. Unfortunately this surgery wasn’t the end to my blockages as I continued to suffer with them regularly however they weren’t luckily as painful as before. I had to control these with food, fizzy drinks, lactulose, laxatives, pain relief and other things I found helped me relieve them. I had to learn what foods would make them worse and avoid these. At the time this was mainly carbs. Unfortunately they still caused pain and prevented me getting out the house and doing certain activities. My annoying body decided to have a really bad blockage on our wedding day (14.04.18) so I had to leave the celebrations just gone 8pm. I was absolutely devasted and still today feel like I’ve let myself and others down but it was out of my control. I was in loads of pain and throwing up. It didn’t fully clear until a week or so later so it caused issues on our mini moon too. I will explain the purpose for these blockages later. One of the main issues for people with a Stoma is leaks because of the bags coming off. Leaks have luckily been a rare occasion for me however I have had them during a theatre show, a day out at a theme park and woke up to a few. I was distraught when they first started to happen. I would wake up with poo all over me and the bed in a panic. Changing my bags to convex have helped but I do still get the odd leaks especially in the heat as the adhesive peels off. I just get up and deal with them now however it’s extremely embarrassing when they happen in public. I also suffer with acid burn around my Stoma like many others do. This is due to the output getting through the hole and burning the skin. It causes it to be red raw, which is sore, stings and itches. It’s difficult to treat as bags are unable to stick and you can get in a pooey mess when your bags off because you have no control of your motion. This strangely doesn’t bother me anymore as I’m used to it. As you can imagine, we also have no control of wind so mine has decided to trump on the phone to important companies at the most inappropriate times like it knows. 😂 As I have no colon I suffer a lot with dehydration because my body doesn’t absorb water like a ‘normal’ person. This can cause headaches, dizziness and other issues. My body doesn’t absorb nutrients the same, which causes anaemia and the symptoms that come with it. I therefore receive iron infusions and take vitamin d tablets due to a deficiency. One of my main struggles is fatigue. Some days I can’t even get out of bed as I have no energy. I struggle to sleep at night due to my insomnia so I can go days without getting a proper sleep. I can sometimes sleep all day when my body lets me. This frustrates me the most as I feel like I waste my life doing nothing. I can hardly do things around the house and I don’t socialise much. I’ve had to cancel on my friends and family so many times, which is upsetting. Due to IBD incontinence and bag draining / changes I have every right to use a disabled toilet. As you can imagine, I receive a lot of judgement due to my illness and Stoma being invisible. I have received passing comments and filthy looks. At first I was embarrassed but now I tell them how it stands. I have had disabled people tell me they have more rights to use the toilets than myself. I try to avoid using them unless it’s really needed as I know other disabled users may be in more need but I shouldn’t have to argue my rights. I had my 3rd surgery in April this year due to my rectum still being diseased, which was causing blood and mucous from my back passage. My rectum therefore had to be removed as it wasn’t healing with steroid enemas. Due to continuous complications with my bowels kinking, which was causing the blockages... my surgeons feel it is best to remove my Stoma as it could straighten my bowel out. They created a man made rectum (J pouch) from the small intestine during the same surgery and this is currently healing. My next surgery is due this week, which I’m nervous about as I’m worried things will go wrong as nothing has been simple. I am still having mucous and blood from my back passage, which can leak when bending so I have to be careful along with painful cramps so hopefully this isn’t anything serious and the J pouch works. I had to receive a blood transfusion 2 days after surgery due to losing a large amount of blood and being unwell. Since my last surgery I have been unable to eat a lot more foods as my body doesn’t seem to digest anything. It causes continuous blockages, which can last more than a day even with laxatives as nothing seems to help them. I can’t stand up or walk for long periods of time without it hurting me. It can get to the point of struggling with my breathing because of the pain I’m in. I went to the summer good food show and had to use a wheel chair after 20 minutes. It completely destroys your life, which is why I’m hoping all my problems disappear. It felt never ending with all of these complications and I was an emotional mess for a long time. I have however came to accept my Stoma even with the issues it caused so I’ll be sad to see it go on the 12th, which marks a whole year since my Hospital admission. My body confidence has grown massively in the last year and I now wear my bag with pride because it saved my life. Before my flare was serious, I had gained a lot of weight through comfort eating however I lost over a stone in hospital due to my flare and surgery. I also lost a stone in January due to lots of watery output I couldn’t control (diarrhoea). At least I went without blockages for most of this month 😝. Many people with IBD suffer with their weight with most of them losing it due to their diarrhoea etc. They can also suffer with weight gain due to medication. Most people taking Prednisone get moon face. I only needed it for a week however I had to come off it gradually over 3 months and it still took another 3 months for my face swelling to go. I am now 3 stones lighter and happy with how I look. You can feel isolated and at first I felt so lonely. I knew no one with a Stoma and IBD however since being in Hospital I have made 2 amazing friends. One who has the other IBD and a Stoma bag (Crohns) and the other who has other auto immune diseases that destroy her body. I’ve also learnt a lot through Facebook groups (Ulcerative Colitis and Colostomy UK Support Group). Many people do not understand the severity of IBD and feel it’s just diarrhoea but hopefully I’ve explained enough for you to understand the struggles of someone with this disease. There are some things I haven’t mentioned such as fistulas and that we have an increased chance of getting bowel cancer but I think I’ve managed to mention all of my suffering. Remember everyone is different so although I’ve explained my scenario, someone’s could be different. For example my friend has a barbie butt (anus removed) and suffers with increased output where as I mainly suffer with thick output that clogs up. There are also a list of medications that people will be put on to try and help them into remission such as humira. People have stomas for different reasons such as cancer or even extreme incontinence issues etc. There are 3 different types of stomas. I have an ileostomy as my Stoma is made from my remaining small intestine due to my colon being removed. There is a colostomy, which is made from the large intestine due to the small intestine being partially or fully removed and there is a urostomy, which is made from the ureters due to the bladder being removed. The ileostomy and colostomy are for faecal output and the urostomy is for urine. Ileostomy bags are usually on the right hand side because your colon is on the left and vice versa for the colostomy. Stomas can either be end or loop. My first 2 were ends because they weren’t connected to anything therefore it’s where my intestine ended where as my current one is loop as part of it is connected to my j pouch but not in use. I wasn’t told much in Hospital so I researched into stomas and IBD myself, as I was intrigued. I now enjoy passing my knowledge onto others, especially those who are new to it. Infertility is a big worry of mine along with the worry that my next surgery may not work however I am staying positive. IBD can impact fertility because of the impact it has on your body. Stoma and J pouch surgery can also impact fertility as they operate on your pelvis and abdomen area, which can cause scar tissue and damage it. I am excited for my next chapter in life. I will hopefully have children / be pregnant next year and be back to enjoying life. I am so proud of how far I have come. Life is cruel so please don’t make it harder for people by judging them or trying to tell them what to do. They have the disease / Stoma so trust me, they have done their research and trialled things to improve the situation they are in. Provide them with support as it’s not easy to wake up everyday tackling pain etc. INVISIBLE. ULCERATIVE COLITIS. IBD. AUTO IMMUNE. INCURABLE. HOSPITAL. MUCOUS. ABDOMINAL CRAMPING. BLOOD. INCONTINENCE. PAIN. NEEDLES. ANAL EXAMINATIONS. EMBARRASSING. ULCERS. DRUGS. SCARY. SURGERY. STOMA. SCARS. MENTAL HEALTH. NO COLON. MALNUTRITION. BLOCKAGES. LEAKS. NO RECTUM. FATIGUE. INSOMNIA. LIFE CHANGING. WEIGHT ISSUES. ISOLATING. MISUNDERSTOOD. INFERTILITY? BRAVE. FIGHTER. STRONG. The above words are what is written on my body however this list continues on and on. I have tried to explain the most important points. Thank you for taking the time to read this. Please share to raise awareness. Remember that you never truly know a persons battle. ... See more
Happy 70th Birthday to the NHS! We’d like to take a moment to thank all of you out there that work tirelessly day in day out to keep the NHS alive. From: Consultants To Cleaners Nurses to Caterers Surgeons to Admin Thank you all for everything you do. We are truly lucky to have such a service and the wonderful people that keep it going each day. ... See more
“We have listen to our mind/bodies and what they need. Never feel guilty about self care”
Happy Fathers Day to all of the dads out there. To all the dads suffering from Inflammatory bowel disease, we salute you! 💜
“If me raising awareness helps just one person then it makes everything worthwhile for me. It may seem like sometimes all I talk about is Inflammatory Bowel Disease, but awareness is key in breaking the stigma surrounding this disease.” Our founder James Conlon - Winner of the Alex Demain Lifetime Awareness Award. Thank you to Crohn's & Colitis UK 💜 ... See more
Returning for the third year, 2018 saw more nominations than ever before for the Alex Demain Young Fundraiser of the Year Award.
“I choose to focus on the positives rather than the negatives. I’ve grown to love and appreciate all of my scars and ostomy, they’ve given me a new lease of life and allowed me to do things I would have never otherwise dreamed of." Battling Ulcerative Colitis, fundraising superstar Amber is ready to WALK IT again this Saturday! Register now to get your FREE t-shirt: crohnsandcolitis.org.uk/walkit Read Amber's story: bit.ly/2JnxR1x ... See more
I am really proud to be a member of Crohn’s & Colitis UK and support the incredible work they do. From funding research, to member benefits including the Radar key and Can’t Wait Card - this charity are my go to for IBD information on medications. Thank you for everything you do. Our founder James on Crohn's & Colitis UK membership. ... See more
Join our charity today for as little as £1.25 a month. Enjoy member benefits and join the 36,000 strong community of members who are fighting for a better quality of life for everyone affected by Crohn's and Colitis.: ... See more
For those living with Inflammatory Bowel Disease who are not exempt from paying prescription charges, around a third don’t pick up or take their medication properly due to the cost. This can then lead to a deterioration in their health resulting in additional treatment being needed. ... See more
New research from the York Health Economics Consortium (YHEC) has found that scrapping prescription charges for people with Inflammatory Bowel Disease (IBD) would save NHS England over £20 million per year. ... See more