Mental Health Blogs, People's Stories!, Uncategorized

What’s Your Story? Meet Lisa!

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Lisa (37) was diagnosed at age 21 with Crohn’s Disease.

During Lisa’s time with Crohn’s Disease, she has had to endure 7 surgeries, 3 abscesses, 1 drain, numerous hospital stays (longest one being 5 months) and many complications, infections and procedures all whilst working full time as a nurse. For the past 10 years Lisa has not been able to work but spends her time doing her favourite hobbies such as art. After 2 years of taking a medication called Humira which suppresses the immune system, Lisa still suffers from active fistulas from her stomach which leak out the abdomen!Lisa was also diagnosed with Anxiety, a mental health condition which can be quite commonly ‘hand-in-hand’ with a Chronic Illness, which has been getting worse for her over the years. Lisa said “I personally think unless you’ve actually experienced anxiety, on any level, you have no idea what it feels like!”

“I felt so alone, I honestly didn’t know how strong I was until I had to go through this roller coaster.”

During her first hospital admission, Lisa had an Appendectomy which confirmed she had Crohn’s Disease and this came to no surprise as being a nurse meant she had already studied Inflammatory Bowel Disease in the nursing programme. It still left her with feeling scared, alone and worried. Lisa had a good life until the age of 19, where luck was always on her side with a bright future ahead but this changed after her diagnosis which meant she was no longer in charge of her life or ahead of the game. For the next ten years, Lisa tried to live her life as normal as possible doing things she loved such as partying, going to concerts and working hard and hid her suffering from all those around her. One positive that has come from having Crohn’s Disease and the experiences surrounding being chronically ill is that it had benefited Lisa in her career as a nurse which meant she had more empathy and was able to be patient with people.

“The craziest part is that I’m the happiest human all the time…constantly trying to do anything to make others smile.”

Relationships were a big worry for her, due to severity of the disease and how unpredictable it can be, accidents can happen and dashing to the toilet becomes the ‘norm’. “I was going for the broken type of guys (the ones who needed ‘fixed’) The broken guy who needs to rescuing, aka the single dad or the guy with no job.” Luckily, Lisa soon realised that relationships like that just don’t work, it isn’t anyone’s job to fix someone else. During Lisa’s time being poorly, her mum was a huge support to her.

“I’d never have thought that my mom would be helping my sick, limp, malnourished body from a wheelchair to the bathroom chair in the hospital, and washing my hair for me when in my early 30’s. My mom was right there beside me, rubbing my back and helping me with getting me a clean basin for being sick.”

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Albert (8) in picture above

The next part any Chronically Ill person gets quite often is the dreaded question of “when are you having kids?” Due to having treatment for Crohn’s Disease, Lisa was never in a position where she was well enough to try for children then the issue of most medications being used to treat IBD, you cannot get pregnant whilst on them. Now at 37 years old and on Humira again it is advised that you don’t get pregnant on this medication so it is very difficult. For Lisa, her dog Alfie is her kid! Albert short for Albert, is an eight year old Shihtzu. “It’s a cute little story how we got put together, I wasn’t looking to buy a dog!…. When I first saw Albert, he was about 3 months old. I was supposed to take care of him while friends of mine went for a tropical holiday for a week over the winter holidays. When they returned, I knew they saw how much albert and I were meant to be! I still remember my friend yelling “Merry Christmas!” as she left my place! My favourite Christmas gift of all time!” The joy, love and laughter that Albert brings to Lisa daily, keeps her fighting through and continues to give her strength.

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Chronic Illness Blogs, People's Stories!

Funny Stories With A Chronic Illness

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Brenda and myself wanted to a blog about the funny things of being chronically ill, to make others laugh. You never know when someone may be feeling a little down and need a good laugh!

In various chronic illness groups via Facebook, I asked people if they would like to share their funny moments with me. Enjoy!

Shannon:  ” I was in the A and E once and the nurse came in and asked what the problem was. I said “I’m pretty sure I’m dehydrated. I have a rare autoimmune disease called Behcet’s are you familiar with it?” She looked at me like I’m stupid and says THE SHITS? Yeah it’s not that rare.. I looked down and said no BEHCET’S but my husband was in the corner cracking up and trying not to let the nurse see. She eventually said to us when we got our survey at home about our experience to say her name was phoebe bushé and not her actual Name. She was mortified we would tell in the evaluation about her and THE Shits Tale.”

Nick: ” I feel sorry for the poor sods who have go on nights out and have to crap on toilets that has no lock on the door. All while i’m still boogying and having a cheeky crap in my bag!”

Claire: “My funniest is when I sat down for a breather on the edge of a freezer in Tesco… of course I fell in didn’t I and couldn’t get back out again. Spent a good 20 mins sitting in the frozen sausages!”

Perry: “After my operation when I could finally stand up and I needed to go toilet, I stood up and went for a wee in the sample bottle. The curtains around my bed were shut but as I finished, I pulled my bottoms up I turned around and realised my windows blinds were up and everyone in the cafe could see my bum cheeks through the window..”

Tina: “When I was teaching and the time came for a stick, so I invested in one that had fairies on as the children used to call me mrs fairy instead of Ferrie. Even had one child ask if the reason i worked in school was to see which children had lost teeth! They also asked if I got tired collecting the teeth and took me a while to click they thought I was the tooth fairy.”

Josh: “I was getting a scrotum ultrasound with a male ultrasound technician as Behcets can cause pain there for males. Anyway we were having small talk about where I was from and talking about how I had moved back to town from a place that has a bad name for crime.  I said I’d never had a problem in the 2 years I was there but that I had read in the newspaper that a man was killed for money in front of the pawn shop just 2 weeks after I had left, the same pawn shop that I used to visit all the time a few times a week. The ultrasound technician was just about finished scanning my sack with the ultrasound and he said “the guy must’ve been wanting money for porno’s” but I didn’t quite hear him so I just said “mmm.” He was finished and I left. I then realised later what he had said and I felt so stupid this guy had his hands near my man parts scanning me with the ultrasound machine the whole time thinking I was talking about a adult shop “porn shop” but in reality I was talking about a pawn shop “second hand trader!”

Val: ” I took my mum along to a seminar (she had a colostomy called Arthur) well he blew off all through one of the speeches my mum, me and my husband (who by the way has an ileostomy) set off giggling and didn’t stop. My step dad did not see the funny side and at the end a lady came up to us and said I knew that was you Sheila, as they was in hospital together.”

Shirley: “When I was out shopping one day I had nerve spasms, so I decided to look in a shop window and do breathing exercises til they passed. Someone inside was waving at me and I waved back! I didn’t recognise the person but when the spasms eased, I looked again and realised I’d been waving at a MANNEQUIN!!!”

Em: ” I was meant to be collecting a sample for the Doctor. I felt an urgent need to go and nipped to the loo. Thought “ooh this will be a good one, I’ll just grab that bowl” (located about 2m from toilet). In the time it took to travel across the bathroom for the sample bowl, I couldn’t hold it and pooped everywhere. I definitely saw the funny side but this really is toilet humour!”

Jennifer: ” My 2nd symptom was going blind in the left eye for a few weeks. I got sent to ophthalmology and they said “cover your left eye and read the board on the wall” so I obliged. Then they said “now cover your right eye and read the board on the wall”, I said “what board?” then the ophthalmologist said ‘”the one there on the wall. I said “yeah, what board?” Again they said “the one on the wall, starts with E at the top!”which went on for another couple of minutes before they realised that I couldn’t see anything out of that eye, even though I told them that to start with!”

John: ” I went for a job interview and thought it was best to tell them I had MS. They said “that’s good, being well versed in Microsoft programs is just what we need!”

Ceri: “My very first relapse, before diagnosis, I had double vision so the eye specialist gave me an eyepatch. After the hospital visit my sister took me to the coffee shop and all I could hear was a little boy telling his mum.. “mum” mum there’s a pirate over there, over there Mum” The poor mum was so apologetic but all we could do was just laugh.”

Kevin: “I was at a routine hospital appointment and went to pharmacy. They said “do you pay for your prescriptions mr Childs?” I mumbled something about permanent colostomy and that I have medical exemption certificate. I then patted my abdomen to indicate where bag was. I sit down and 10 minutes later called back up. “Thank you mr Childs my colleague says you don’t pay for prescriptions because you’re pregnant..”

Jo: ” I’ve always been quite a good mimic and so when I had a huge facial weakness a good few years back, with my short hair and glasses, for nearly two months I was a very popular Anne Robinson (from the TV show You Are The Weakest Link) ‘look alike’!”

Victoria: “When my muscles spasm they can be rather violent. So one night I was sat watching telly and hubby gives me a Magnum ice cream, cue a violent spasm and my ice cream goes flying across the room and the bloody dogs think it’s Christmas!”

Helen: “My GP was explaining my CT scan results and that I had a fistula from my bowel to my bladder. So not funny, but she said “Basically Helen, you are farting into your bladder.” For some reason, that set us both off and we giggled through the rest of the appointment!”

Megan: “So my dog willow had an itchy annoying butt so we got an appointment at the vets. The vet told me it was probably her glands that needed emptying and that he would do it just now. So there he is sticking his fingers up my doggies butt when i awkwardly say “oh me willow its normally me we fingers up my bum!”The sudden realisation that this guy has no idea I have bowel disease and thinks Im a dirty mare who needs locked up. I didn’t know where to look. I was just trying to lighten the mood and make my dog feel better!”

Stephanie: “There is nothing more satisfying than having a poo in marks and Spencers food hall…. It’s not just a poo but a marks and Spencers poo!”

Colleen: ” I have a LOT of difficulty sleeping. SO, there’s no telling when I will have a sleep ATTACK! So, one Sunday morning I went to Church, sitting next to my husband and fell asleep HARD! My neck fell back, and a GIANT SNORE came shooting out of my nose. If you picture that, you can imagine the sound. It was LOUD and although I was with Church folk, I did feel a bit judged, so I tried to keep from laughing as I slithered out of the door!!!”

Libby: “I took my daughter to the ER because she had a bad migraine from Behcets and the doctor came in to check her. She said ” I have Behcets” and he said “oh I know what that is…you get lesions on your penis!” haha shes female..”

Callum: “Every time it farts it feels like someone is blowing raspberries on my stomach!”

Joseph: “I once was at the casino playing poker, and the person next to me thought it was my way of wishing good luck on my cards by shaking the cards a little. It’s actually bc I have a bad tremor in my left arm right now.”

John W: “When I first told my now partner I had a colostomy bag she sed so u are a real living shit bag!I found it funny don’t know if others will but 7 years on we are still together.”

Robin: “I was at my 1st appointment at an MS Clinic and in the midst of my first really bad flare-up. All the nurses were incredibly nice and I had asked them what their favorite treats are (so I could bring them something at my next appt). I got no answer at the time of my question…but about an hour later, as we were preparing to leave the office and head to the infusion clinic – one nurse says “jolly ranchers”…I thought to myself – You can have any treat you want and it’s Jolly Ranchers, weird – but okay- looked at her with a smile and said, “Awesome, I’ll bring you a huge bag of them tomorrow ” she laughed and says, “NO, bring Jolly Ranchers to your IV steroid infusion, they are the only candy that will get the metallic taste out of your mouth!”

Helen M: ” My recently installed bag is called Louie, I’ve never been able to afford an original Louis Vuitton bag but he is my sure my own original!”

Jessica: “I still laugh about my enema being put in the wrong hole by the student nurse. I had to tell her it was the wrong hole before she squirted it.. She was very embarrassed. Then afterwards, she was like do you want privacy … yes but instead she was in asking bloody questions and doing obs!”

Anonymous: “There is this funny thing that always makes me laugh! I have dual mental health diagnosis and other crap like chronic IBS. I get very very down in this life. One of my fond memories is when I was living with my now passed away Grandmother, she had slight bowel issues also. Each step she took up the stairs to the loo, she farted! She was all like “Ooooh these stairs are creaky today!” It’s even more amusing as she was all prim & proper!!!”

Nuala: “When i was very ill and hospital told my family I have to have colostomy our young James said to his mum “she said it’s bag and you can’t poo only in a bag” he thought about it and said “oh will she have to have big hood like max?” who is the dog so he couldn’t bite his bum after his operation! I thought that’s great made me laugh!”

Brenda: “My first funny story happened in 2015 after surgery for an abscess on my surgical scar. I was fitted with a vacuum dressing and pump then discharged. I got home and settled for a bit then at bedtime went to the loo to discover that the nurse who discharged me had put the vacuum dressing completely over my bag which had leaked output and blood. I couldn’t deal with the bag because it was trapped under the dressing which I couldn’t do myself. After a few calls an ambulance was sent and a paramedic was dealing with me in our tiny toilet. Now when I change or empty my bag I pull my top right up and fold it up. Paramedic stands me up to take me to the ambulance and asks if I feel comfortable. Totally forgetting I’m in my pjs with no bra up goes my top and that poor bloke got an unexpected eyeful particularly as my boobies have gone a bit south. All the way back to the hospital I kept avoiding his eyes!”

“My second funny story was when the hospital the nurse took me into the patient toilet to sort the bag out and as I sat on the loo she crouched and balanced in front of me till she lost her balance and fell forward on to me. I fell back onto the flush sensor and had what I can only call an unexpected bidet. We both laughed so much it happened again and decided I’d better stand up!”

“My third one is from a couple of months later. My daughter was taking me to Birmingham on the train for the gybo first party. The train pulled up, doors opened and I got one leg on but didn’t have the strength to get the other leg on. Two lads who were on the train came forward and grabbed a hand each and started pulling me on and my daughter put her shoulder under my bum whilst explaining to the people in the queue behind me that I’d been poorly. We did have a good laugh about that one I won’t mention going to Earl’s Court to see George Michael with my daughter when I was newly diagnosed. Seats up about as high as you can go and three guesses who was just coming back from the toilet as the lights went down and George walked on the stage. I think I spoiled the moment for the people in our row who had to stand up and let me through.”

Justin E: “Best I have done is I was putting stock away in shop and just fell asleep on floor with packets of nut and bolts and I was found by a customer who woke me up as he thought I had fallen and knocked myself out!”

Nan: ” i sat on the loo for ages couldn’t feel the wee but could hear it. I sat thinking god that’s a long wee till i realized i wasn’t weeing at all and it was the cistern filling up!”

 

Hope you have enjoyed these funny stories as much as I have! I have had tears in my eyes reading them with laughter! Thank you so much to all who took part and to Brenda for the idea and inspiration of this blog!

-Alannah

People's Stories!

What’s Your Story? Meet Megan!

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Megan’s (28) journey started in 2014 when she was pregnant with her now nearly 5 year old son, Caleb.

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It started with having frequent bowel movements, bloody diarrhea, vomiting, mouth ulcers and weight loss. Megan’s midwife put it down to pregnancy and it left it at that. It wasn’t until caleb was born that things got really bad. When he was 2 weeks old Megan’s dad passed away after a short battle with bowel cancer. Then she was going to the toilet 40+ times a day and was losing a lot of blood in each movement. It got to the point where she hadn’t eaten in weeks and had lost so much weight, with her mouth being covered in ulcers and had really bad pain in her stomach. One time, after seeing a doctor, Megan was diagnosed with Ulcerative colitis after a colonoscopy. Since then she has tried all of the medications available to gain remission such as Steroids, Humira, Infliximab and Azathioprine which are types of Chemotherapy drugs.

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Despite her illness and feeling poorly, Megan got married on 16.7.16 to Keith and was very nervous that she was going to have an accident as nerves and IBD do not mix! “It was such an amazing day and we loved every minute of it.” They have a lovely family starting with Caleb (5), Willow the Jack Russell Cross (10), Chief the Podenco Orito (1) and their 2 rabbits Bunbun and Maple.

“We love our animals and I am sure willow and chief know when I’m really sore, they don’t leave my side.”

It was eventually decided that Megan would have surgery to have a temporary loop Ileostomy. The plan was that the stool would bypass the diseased part of bowel and the bowel would get a chance to heal. Megan was prepared for the operation and was happy with this decision. She had had enough of the pain from the Ulcerative Colitis and wanted to try anything to get some relief. In October 2017, Megan had her planned surgery for a loop Ileostomy. The Recovery for her was rough especially once she was in her own home and back to being a Mum and looking after Caleb whilst in pain from surgery! Unfortunately her bowel hasn’t healed from the surgery or medications and is still in lots of pain. Megan is thankful for her stoma as she has so much more freedom than before the stoma.

“I don’t always have to know where the toilet is anymore and I don’t have to worry about shitting myself!”

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Fast forward to now (March) and Megan is now on a medication called mercaptopurine which is an immunosuppressant, waiting on further surgery to remove the rest of the disease in her large bowel and rectum to make the ileostomy bag permanent and have what we call a “Barbie Butt!”  Megan says ” I am Looking forward to this next surgery and to being on the road to recovery and hopefully a pain free life! Life is still a struggle but my family, friends and the online ibd community keeps me going.”

 

People's Stories!

What’s Your Story? Meet Nicola!

In August 2017 Nicola had a CT scan with a virtual colonoscopy. She had been having symptoms of IBS for about a year prior to this and was finally referred for her colonoscopy. Working as a Property Manager for a large commercial landlord in Birmingham which was stressful with lots of pressure. Nicola was also training hard and running half marathons and was what you would described as “pretty fit!”

The bowel prep is the worst thing she had ever had to endure. It wasn’t surprising that the afternoon after the scan Nicola was called by who is now her consultant, to come in for a chat. The chat was to inform her that she had stage 4 bowel cancer and liver mets. The pain experienced from a total blockage in her large bowel that had distended to near breaking point. Nicola was then told she would have to have a colostomy the next day but she refused and subsequently went on to have a stent and a full colonic irrigation a few days later.

For a while things were stable but then the stent failed and had to be flushed out again. In that December Nicola had a bowel perforation and sepsis from this in the large bowel and was told she had 24 hours to live again she refused the colostomy and was sent to the hospice to die and walked out 9 days later! Fast forward to February and the stent failed again and she had another one installed but it only lasted a day. Finally after “a lot of soul searching” Nicola then decided to go for the colostomy! The operation was not without its difficulty but she now has Berly the stoma- her “magic button”.

“I have not looked back since then! The surgery and recovery was very hard at first but then as the days went by, I got more and more confident and started to get my life back. I still have days that are hard but it’s all part of having a stoma and cancer.”

Nicola’s boss was amazing and so good about her job and let her work part time hours and to work from home, but they agreed last August that it was time to hang up her executive hat for now. So Nicola now works part time for cancer research in their Solihull shop! She is also the chairman of the Business Improvement district in Birmingham, which keeps her occupied and something to focus her time on. Cancer has taught her so much including what is actually important to her and how to see positives out of what should be a negative! She also tries to share out kindness to those who might not be as lucky as she has been.

Nicola (50) lives at home with her husband, three rescue cats; Joey, Nala and Simba and her Jack Russell Skyler. Nicola and her husband will be celebrating their 25th wedding anniversary in March of this year and Nicola has said that despite having terminal cancer and hospital trips and surgery, it has made the marriage even stronger than ever! During Nicola’s recovery, she received great support online from new friends in the Ostomy Community.

On the bad days, Nicola will colour in her colouring in book whilst watching Netflix (who doesn’t love a good bit of Netflix?!) whilst using her lovely heat pad. On the good days, Nicola spends her time making the best of every single good day, staying positive and remaining as normal as she can be. I asked Nicola what she plans for the future in which she says “It is hard to plan a future with a diagnosis of terminal cancer however us cancer sufferers set ourselves small targets in which we want to achieve. My small target is going on holiday later this year with my husband for a little while. I also want to reach out and help other people who are chronically ill and don’t have the correct or no support. Most importantly, I want to live my life each day!”

“This is a photo of me saying my goodbyes to my family and friends and my little dog in the Marie Curie Hospice in December 2017. A miracle can happen and it’s not your time till it’s your time. So keeping on even when it hurts and thinking you can’t do it anymore.. you really can!”

 

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In this picture Nicola models with the I Am Denim London ostomy jeans! To view the blog about them please click here.

I met Nicola at the Purple Wings day conference back in August 2018 and we have spoken ever since. Since then I have come to see just how strong and brave Nicola is!

If you or a family member are affected by cancer and need support please talk to a Marie Curie nurse via the helpline or you can follow Nicola on Instagram @berylandme.

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.

People's Stories!

What’s Your Story? Meet Jason!

 

 

jason

 

 

 

I’m Jason, 25 years of age and this is my story. To begin, my mental health took a turn for the worst when my care free childhood changed when i began high-school. I was bullied for the way i looked, because i wore glasses and the icing on the ‘cake’ was due to being over weight (i probably ate the icing on the ‘cake’ too.) This made me a target for the bullying for those aspects, by other kids at school who were older than me, as most students my age were too young to pay attention or to stand up to the older students. I lived a very sheltered life and i made some great friends who today are still part of my life. Over the coming years from leaving high school, my parents split up after a 26 year relationship and i had a really close relationship with my dad. To wake up each day with him not being there was soul destroying for me, as all my life previously i had woken up to him being there every day and pushing me to do well. He taught me to do boxing, martial arts, kick boxing, judo and aikido which are all different types of sports. These sports along with my dad’s support made me feel like i was a powerful such a powerful human being and brought me back to the mental capacity that i needed to be at, whilst preparing to take my GCSE’s which i did disastrously bad at. Despite this, i got into college and completed a painting and decorating course over 2 years just like my dad had done.

 

Instantly after my dad left, my mum met another guy who in my opinion was a waste of space ,i was then left free reign of the house which then lead to me to skip a week of college as she had dropped the bomb that she was moving in with her new man and couldn’t afford to keep the house at the same time as staying with him. I then moved into my brother and his girlfriends place which was great and i enjoyed it until we were stepping on each others toes as we were on two separate sides of the scales subsequently , the arguments and fights started. We moved from house to house over time as the relationship did’t work out and that’s what drove him into a downwards spiral for a number of years which got worse and worse, it was crushing seeing your big brother become a monster.I was quite discontented with life during the years to follow and lived on my own and have done ever since. Living on my own and my all that i endured has lead to mental and physical health becoming deteriorated, after impaction of my large intestines within 2 months after landing myself a job i thoroughly enjoyed doing and could have had me set for life. I am still undergoing tests to confirm the exact cause to my discomfort and debilitating pain, and recently had a colonoscopy where biopsies were taken and waiting on the results. At the moment i barely leave the house and i stick to staying at home and keeping fit, working out as much as possible,gaming and holding onto the last part of my sanity from being trapped in these four walls day in, day out. I am focusing on getting to the route of my problems, awaiting the tests and trying to find a way to ‘fix’ myself and not let whatever it is take my life away from me and be in control of it.

Everyday is constant fear or every day life going on outside, meeting new people, meeting a woman, making new friends and meeting them and irrationalizing everything around me thinking “will this hurt or kill me?” or  “does everyone hate me?” whilst planning my escape plan in a situation whilst i’m outside or meeting someone. I hope to overcome this in the foreseeable future and work on overcoming my fears.

I would like to thank you for reading my story, and i  hope to help someone else in a similar situation. If you are having these issues and are struggling, i want you to know to know not be afraid and don’t hide away or hide the extraordinary human being that you are. Break free of your comfort zone and don’t make the mistake that i have by leaving it too long that it’s almost impossible to do these things.

-Much love, Jason.