Top 10 Chronic Illness Related Films

13413661_10208882577449309_7060998761965754705_nSometimes it is nice to watch a film with your feet up and to snuggle into a blanket. If you are in the mood to watch a film that could be relatable to you. Although this is not for everyone!

So here are a list of Chronic Illness related films:

  1. 50/50 – Inspired by a true story, a comedy centered around a 27 year old guy who learns of his cancer diagnosis and struggle beating the disease.
  2. My Sister’s Keeper – Anna Fitzgerald looks to earn medical emancipation from her parents who until now have relied on their youngest child to help their leukemia-stricken daughter Kate remain alive.
  3. Brain On Fire -Susannah Cahalan, an up and coming journalist at the New York Post becomes plagued by voices in her head and suffers seizures. As weeks progress, Susannah quickly moves deeper into insanity. Her behaviours shift from violence to catatonia. After a series of tantrums, misdiagnosis and a lengthy hospital stay, a doctors last minute intervention enables hi to give her a diagnosis and a chance to rebuild her life.
  4. It’s Kind of a Funny Story – A clinically depressed teenager gets a new start after he checks himself into an adult psychiatric ward.
  5. Split – Three girls are kidnapped by a man with a diagnosed 23 distinct personalities. They must try to escape before the apparent emergence of a frightful new 24th.
  6. The Fault In Our Stars – Two teenage cancer patients begin a life changing journey to visit a reclusive author in Amsterdam.
  7. Forrest Gump – Forrest learns that Jenny is sick from an unknown virus (either HIV or Hepatitis C) which has no known cure.
  8. 50 First Dates -Henry Roth is a man afraid of commitment up until he meets the beautiful Lucy. They hit it off and Henry thinks he’s finally found the girl of his dreams, until he discovers she has short-term memory loss and forgets him the next day.
  9. The Vow – A car accident puts Paige in a coma, when she wakes up she has severe memory loss. Her husband Leo works to win her heart all over again.
  10. Walk The Line – A chronicle of the country music legend Johnny Cash’s life, from his early days before fame on an Arkansas cotton farm to his rise to fame with Sun Records in Memphis whilst battling depression and drug addiction.

These are some of my personal favourites ranging from romantic, horror, music related and comedy! You can watch most of these via Netflix, NOW TV, Sky Movies or Amazon Prime (or you can buy the DVD’S for cheap!)

I’d love to know some of you recommended chronic illness related films!

Mental Health

I have been struggling with my mental health for a long time, due to illness and things happening in my personal life. After being off of antidepressants for almost two years, my GP and I decided that it was best to go back on them as the problems I’ve been having are very complicated and I am in the process of working through them.

After my surgical termination last June it was really difficult having that procedure done itself but also coming to terms with loosing my baby and last month would have been my due date. When problems started happening at home I began to have frequent mental break downs and found it so hard to cope with life. I would lay in bed all day in the dark and try to not to talk to anyone. I would barely eat and I couldn’t see much point in being alive with the stress of everything and being chronically ill.

After months struggling with the mental breakdowns and thoughts of not wanting to be here or deal with the physical and mental pain, I went to my GP and told him that I thought it was time because everything I had tried such as medtitation and anxiety apps on my phone just weren’t helping. My GP had been asking for a while for me to go on medication for my depression and I refused because I was terrified of the side affects.

At the start of taking Prozac, I was also given Pregablin to help manage my pain. At the same time starting these medications, I caught a sickness bug and was extremely ill so they weren’t able to kick in as well as they should have so they took a little longer to kick in! I felt a little tired for the first week but nothing more than the usual tiredness I get.

Slowly those bad thoughts went away and I felt so much more motivated with my life and wanted to not only live but to accomplish goals and dreams, doing more for charities and also taking care of me more. After a few months the dosage was put up because I felt the affects were wearing off a little. Since then I do still struggle some days but not as bad as before. My Anxiety and PTSD isn’t great but I’m working on those by distracting myself when I feel anxious by watching films or cuddling my 2 yorkies.

Just recently, I had an iron infusion as my ferratin levels were below 50 again. As my iron was dropping, I felt my mood dropping too. After talking to my IBD nurse and another GP it was said that when your iron drops it can also affect your Depression which I didn’t know! So in 2-4 weeks my iron should hopefully be back on track!

When you suffer from mental health, it is really difficult to open up to anyone but also to admit when you need help. Taking antidepressants is nothing to be ashamed or embarrassed about because the way I see it – you are helping to help yourself get better. Finding a GP or someone close to talk to can really help let out some pain of feeling alone in the battle inside your head. There are a few things you can try with mental health but I really strongly recommend talking to your doctor and making sure they are happy for you to try other things first.

There are apps you can download for Anxiety such as Headspace and learning meditation. Many people find that seeing a councillor helps but the waiting list for one is very long on the NHS. You can also read books on coping with anxiety and many various mental health conditions from amazon or local book stores. Colouring in books can also be very relaxing and handy when you want to go somewhere quiet and colour. Animals can also really help to comfort you and knowing a little furbaby loves you unconditionally is one of the best feelings in the world!

I have heard people refer to antidepressants as “wacky pills” and “loopy tablets” and I just think that is completely unfair for those who suffer. Taking antidepressants does not define you! For anyone who does not walk a day in our shoes they have absolutely no right to judge what they do not know or understand. Be proud for taking that step in talking to someone or swallowing your dose of antidepressants for the day, each day. To fight those relentless demons day in, day out makes you fucking strong.

And if nobody has told you, I’m proud of you.

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

Preparing For A Colonoscopy

 

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Many people who are diagnosed or undiagnosed may go through preparation for a procedure such as a Colonoscopy. This is where a thin tube with a camera on the end is inserted into the rectum and travels into your intestines.

Before I begin on the preparation drink information etc, I want to let you know that this procedure can save lives and can help get a diagnosis of what is happening. Usually the drinks they give you are either Picolax or Moviprep and sometimes Kleanprep which are laxatives to clear out the bowels to get a clear look inside. When I had prep, I found Moviprep easier to handle than Picolax however if constipation is something you suffer from Picolax can be a better option but it really does depend on what your consultant or appropriate person doing the scope wants you to have.

The first drink isn’t pleasant and I’m not going to sugar coat it and say “it tastes divine like a cocktail” because it doesn’t but you can make it taste better by adding diluting juice that you like to it, which can help make it more bearable for you. You can also put it in the fridge. With Picolax make sure you stir it and leave it to sit for a minute as it can be sore on your lips when newly mixed (just from my experience.)

A few hours later your letter or information sheet will tell you to drink the next sachet. Many people find that even after taking both, a few hours later nothing happens and are left wondering why it was even important to drink them.. that is until you feel the sudden need to run to the loo! It’s not pleasant but it does the job it needs to which is essential for your scope. If you are allowed sedation they will put an IV line (cannula) in a vein for direct access for the sedation, this is to help you relax.

There are some thing you can do to make preparation easier for you:

  • Have some heat pads or a hot water bottle close by if you have pain/cramps.
  • Keep a blanket in the bathroom near the toilet.
  • Keep a bottle of water in the bathroom and by your bedside.
  • Take some paracetamol to help with pain and sweating if going to the loo is making you sweat.
  • Pads incase you don’t make it in time.
  • DON’T plan to go anywhere!
  • Keep your medication close by so if needed it is there.
  • As said above, diluting juice.
  • Comfy clothing that isn’t tight as you may bloat.
  • For the 24 hours leading up and waiting, only drink clear fluids.
  • Avoid taking iron tablets a week before your procedure.
  • Drinking plenty makes the bowel prep work better.
  • Using a straw to drink the prep.

My first Colonoscopy was back in 2012 when I was 17 and I was diagnosed with Crohn’s Disease and Ulcerative Colitis. The prep wasn’t as bad as I thought it would be, I found not being able to eat the hardest part! At the time I finished my second drink my mum was eating a tub of my favourite kind of pringles and I cried (ha ha.) I was terrified when I got to the hospital, clutching my hot water bottle whilst crippled over with pain, not knowing what was wrong with me.

I was given sedation and pain relief through my cannula and I felt quite tired and drunk! They first inserted a long tube which puts air into your intestines and then the flexible colonoscope with the camera and a light at the top. I found that the air was more uncomfortable than the procedure itself. Before I knew it, I had to fart and I didn’t know what to do. I lay there squeezing my cheeks and I couldn’t do it any longer. I said to the nurses in the room that I really had to fart and could I be excused, I was told to go ahead as it wasn’t anything unusual! So thinking only air would come out I went for it and I messed everywhere and felt terrible for everyone in the room and I was so embarrassed. I was so surprised that the nurses didn’t care, they’d seen it all before me! They completely put me at ease and held my hand through the tears of anxiety and embarrassment.

At the side there is a screen so the doctor or endoscopist can see from the camera inside you, if you are squeamish then don’t look. The endoscopist or doctor may also take biopsies to send away to the lab. Recovery took a few hours as I slept off the Sedation then I was allowed to go home, stopping at McDonalds first of course! Eating my entire body weight in fries and chicken! My rectum was quite sensitive for the next few days due to the wiping from frequent toilet trips. It can take a few days for your bowels to calm down and usually you do experience bloating from the air that is put inside your bowel so drinking plenty and walking around can help shift it. Taking paracetamol can help too.

I hope this helps you with your first time having a Colonoscopy.

-Alannah A.K.A Glitterygutsx

Flying With A Stoma

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One thing that ostomates may find difficult to arrange is a holiday via flying and aren’t sure what to do with their ostomy supplies and medication.

Before flying , I like to get everything organised at least two weeks prior to flying so nothing is left last minute and I end up forgetting something. It’s important to check the regulations of the air service you are flying with on what you can and can’t take in hand luggage. Many ostomates don’t know that you can actually take your supplies with you in hand luggage but you must have either a doctors letter or you can call the air service and let them know, they then put this on your flight reservation notes. This avoids having to leave them behind as I almost had my stoma stuff put in the bin at security in 2017 when I flew to London.

So what did I take in hand luggage?

  • Hand sanitizer 100ml
  • Phone charger
  • IPad
  • Purse
  • Medication
  • Doctors letter
  • Stoma supplies
  • Walking stick

I also took my dressing gown as I couldn’t fit it in my suitcase (woopsy!) My doctor’s letter was required as the type of medication I am on has had new laws put in place which means it is a controlled substance. The letter cost £10 for my GP to do and although it may seem a bit odd to pay for a letter for medication however had I not had my letter and something went wrong, I could end up with no medication and go into withdrawal which believe me it is the WORST thing to ever go through.

Just before going through security I went to the assistance desk and asked for a lanyard after seeing some ostomates in the Colostomy UK Facebook group with one when flying. When I called prior they also put assistance with walking and boarding the aircraft incase my joints lock. You must be wondering what is a lanyard? A lanyard looks familiar to a USB stick neck holder except it has a purpose. It represents hidden disabilities which has the aim to make travelling more friendly and accessible for everyone. Aberdeen Airport also offer a service prior to flying which gives you a tour of the airport and travel plans so you are more familiar with your surroundings and on where to go. The Airport launched their new hidden disabilities lanyards in partnership with Friendly Access in 2017.

The lanyard helps those with a hidden disability to enjoy their travel experience and to make your time travelling as stress free as possible in a hectic environment. They act as a discreet indicator that the person flying has a disability to airport staff to easily spot who may be in need of support. They are very useful for when you are going through security search areas of the airport. I think this is a brilliant scheme put in place for all people who suffer with an invisible illness and it also means that they don’t have to write or say all that they suffer from to anyone in public. Lanyards can be requested at assistance areas of any airport if you go to the desk and ask for one.

When on the plane, your ostomy bag may balloon as it fills with air due to the air pressure so always make sure your ostomy bag is empty prior to boarding the plane as it does make a bit of difference. The aircraft has a toilet so if the ballooning concerns you, you can let it out in there. Many people with anxiety find flying quite a nerving experience and as someone who hates flying, my anxiety does suffer. I used to get a relaxant from the doctor but now I like to distract myself with a book, music or a film on my iPad.

The next airport I go to is Birmingham Airport.

The assistance desk was great as I asked for a lanyard. I was then asked if I needed any help and if I did just to ask. Taking my stoma supplies through security was no problem at all. As I walked through the scanner, it went off due to my lanyard having metal so I was taken to a very cool X-ray machine which showed where my bag was! A female member off staff gave me a pat down which was gentle and her and her college were really polite so it made me completely at ease. I also noticed whilst at the assistance desk, a screen which let people know that they have other services available to help people with autism, their family and carers. Prior to boarding the plane, I stopped by Costa and had a chicken fajita, egg sandwich and a bag of my favourite crisps – Pom Bears!

During the flight my stoma bag made quite a lot of noise but I don’t think anyone noticed! I emptied my bag in the very small toilet and it was no problem at all, I even managed a nap!

I wanted to know other ostomates experiences when flying, good and bad. This is what they told me:

Julie: “I have a urostomy and had my very first flight last year. I took 10 bags, adhesive remover wipes , dry wipes, black disposable bags, I had a card signed by my nurse at the doctors saying I am carrying scissors all in my hand luggage. I kept spare sprays in my hold luggage. I had no problems through security and even though I was so scared of my bag leaking nothing happened all was a good experience for me.”

Linda:I have a colostomy and a urostomy, and have had no problems at all, carried what I might need in hand luggage and the rest of my supplies spread between our suitcases. I did worry a bit about coming back and connecting my ‘night bag ‘ to my urostomy for 12 hour flight back to the UK but didn’t do it as I cant really sleep on a plane so just got up to empty as I normally do. My stoma nurse did a letter for me to take.”

AJ: “I have never had any ballooning whilst flying and the only issue had with stoma supplies in hand luggage was when I never put spray in the plastic liquids bag. They just said to make sure I did in future. I didn’t take a doctor’s letter with me.”

Jennie: “I had to change my bag on a plane about 4 months after my surgery. I had started to leak and had to change! The toilet was tiny so it was a bit awkward! I’d pre cut my bags (about 3/4) for the plane so I didn’t need my scissors in hand luggage and they let me take my spray in a clear bag in my hand luggage. I topped up my travel insurance though to make sure I was covered as it had only been a short time since surgery but a doctors note never even crossed my mind. I went through security okay I was nervous but I was just honest with them I knew they’d feel it so I told them about it before I went through to save any embarrassment.”

Samantha: “I have had my bag 11 years and been on holiday probably every year since with no issues. I have never taken any travel documents but I did have an extra search before but as soon as i showed them the bag they were fine!”

Roxanne:I’ve flown a few times with my bag, it’s for a fistula so less issues with output etc than a stoma, always been fine, at Amsterdam airport, it obviously showed up on the body scanner thing, so when I told them what it was, they took me to a wee cubicle to show them in private and it was fine once they and seen it, not had that anywhere else with body scanners.”

Graham: “I always carried my supplies in hand luggage and spares in hold luggage, spread out with my parents cases just in case one case went missing. I had letter from gp explaining my supplies and had it copied into the language of the country I was going to which was spain. I never had problems at security, I just told them I was wearing a medical appliance and had a letter if they needed to see it.”

Rosie: “First time I flew with mine, I didn’t pre cut bags which could have been messy if I’d have had a leak, luckily I noticed before the return flight! The ballooning was a surprise I wish I had been warned about!!”

Sheila: “I have flown several times, and never had a ballooning problem as long as the filter is clear, and I carry a weeks supply of everything I use on a daily basis, in my hand luggage, plus the same again in hold suitcase, if your luggage goes missing, you still have 1 week of essentials at hand,, all pouches are pre -cut. It’s handy to get a medic passport from your supplier, signed by your care nurse as it’s in several languages and explains the holder wears a stoma pouch “

Lauren: “At Belfast International airport I got an extensive search and I was made to raise my top, which I obviously was nervous about as there was a queue of people waiting to come through the bleeper machine. They all just staring at me and my stoma bag and I didn’t want everyone seeing so I tried to say discreetly that the bulge under my top was in-fact a stoma bag. I was completely ignored and I felt so embarrassed that I had to continue letting the person search me repeatedly as well with the hand held machine. I wasn’t best pleased. I took my stoma supplies in my hand luggage and some in my handbag. I declared the adhesive remover but this was a massive problem in Gatwick Airport several times, even with a doctors letter explaining this and my medications.”

Lisa: “I’ve my stoma 4 years now and I’ve flown a good few times since I’ve had it. Even flew 6 months post op too, now that was more so nerve wrecking for me as I was on my own and didn’t know what to expect at first. But since then I’ve been on And off planes a lot with no issues at all. Most times when I go away I’ll change my bag the Night before so it’s nice and fresh, I’ll pack extra bags depending how long I’ll be away for. Lucky for me all my bags are pre cut so no need for scissors. I pack bags in my suitcase, along with my barrier rings,wipes, pads etc and more in my hand-luggage Incase my case goes missing. As for the sprays they go in the little clear liquid bag. I do carry a letter with me from my GP stating what’s wrong with me health wise and I’ve a little stoma passport I got from my stoma nurse a while back. I’ve been patted down a few times when I was going through security and some have asked what the bump under my top was and others haven’t noticed. They have asked to see it when I told them what it was and they’ve just swabbed it and I was off I went. When I’ve flown my bag has been fine, I make sure to empty it before I fly. I’ve only had one leak when I got off the plane but that was when I had my bag first.”

Kizzy: “I always split my ostomy supplies between my luggage, and I always pack at least double the amount of supplies needed, if not more (you can never guarantee that your not going to end up with an iffy tummy with all that foreign food). In my main suitcase I would put 1 box of ostomy bags, waste bags, my adhesive remover, barrier spray, a pack of conti wipes, a pack of wet wipes and my scissors. I would also put 20 pre-cut ostomy bags, waste bags and conti wipes in my hand luggage. I remember only one instance where I was stopped, and that was on my way back from Ireland and it never went further than a pat down. In 2015, I was taking a fair few more medications than I ever had previously so before I booked a holiday to Turkey, I looked into whether the airline I’d be going with allowed extra hand luggage for medical items. There was and I required and got a letter from my gp (this varies in price depending on your gp… I think the first time I got one it cost me £5, then when I needed one a couple of years later, it cost £20) They would allow up to 5kg of medical items in separate hand luggage bag. I had no issues on the flight out, on the way back a member of the airline staff approached me and told me I could only have 1 piece of hand luggage. All i had to do was show her the letter from my Gp and I had no further issues.

Hanna: “I make sure I change in the loo before flying so I’m fresh. Also don’t take my scissors in my hand luggage, I pre cut. As long as your potions are in a clear bag, they’re fine. I didn’t take all my supplies in hand luggage the first time, I had some in my suitcase and some in my hand luggage. In February, I only had hand luggage so everything was in there. No problems. I didn’t have a letter or anything, the only problem if you can call it that, was my oramorph had to be tested. The airline Ryanair advised me to ring them before I fly next time because I can get an extra baggage allowance because it’s a medical need.”

Abigail ” Flying with a stoma is OKAY! It’s EASY! Too many people panic, believing the horror stories of that the bag is going to inflate and explode! I’ve been flying full time as long haul cabin crew for British Airways for 2 years with Polly! My top tips are; Put your scissors in liquids bag Sprays in liquids bag Half your trip supplies in hand luggage and half in hold luggage If needing to change mid flight use the baby change toilet (there is always one on every airline if you can’t find it ask the crew) and lay everything you need out in front of you, we all know toilets on aircraft aren’t the biggest but this gives you so much more organisation and space Your bag doesn’t inflate with “pressure” Stay well hydrated Hidden disability lanyards are great if you’re nervous about security My main tip is if you EVER need any help on board ASK YOUR CREW! We have been trained so intensely including medical, we can support you be there for you and we can do whatever it takes so we look after you, never be embarrassed to ask for help as it’s our job to look after you!”

There are mixed experiences and my best advice is always carry some documentation such as a travel certificate from a stoma supplier or a letter from your GP, it’s better to be safe than sorry! If you are an ostomate and anxious about flying due to having a stoma, I hope this information helps you as much as it has helped me.

Finding Love With A Stoma

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One thing that has been such a positive impact in my life is finding love with a stoma. Many people think “well weren’t you in love before you had a stoma?” and of course, I had relationships and loved people whilst suffering from Crohn’s Disease and Ulcerative Colitis, however all relationships lacked that understanding and support that I needed and I was never given that love back. I was often misunderstood if I was unable to part take in things like clubbing, meals, day trips those types of things and if I lay in bed or called in sick at work, I was told I was lazy. That’s how every relationship mostly went until late 2017 when I had a request follow on Instagram from an old friend whom I used to talk to about Crohn’s Disease back when I was 17 and newly diagnosed! We had lost touch over the years due to an abusive relationship and reconnected as friends at first. As time went by, he became single and we decided to meet up for the first time playing a computer game called League of Legends as my laptop had broke and it was away being repaired, he let me borrow his for the night.

We would talk about having stoma’s and him having a ken butt and myself having a barbie butt (where the rectum is removed and sewn up), about our journeys with illness and failed relationships, lost friendships and family. That first night we met, the hours flew by and before we knew it, it was 3am and time for him to go home! Two days later we met up again and have been inseparable since! We connected in a way that we didn’t have to sit and explain why we were sore or why we kept farting when our stoma’s were active, instead we just giggled! We got engaged 3 months later and it was was our year anniversary last November! Jaimie looks after me mentally and physically and since we got together my health has declined and I always keep telling him that if he wants to leave then he has the chance to, to which I am told “no chance!”. I have also been able to help Jaimie with his stoma with products and I order his stoma supplies for him, making sure his skin isn’t sore and when we have stoma issues we both help and comfort each other.

We have had some incredible journeys together including The Purple Wings Charity Ball in August 2018 (which is a charity helping ostomates), building our family with my 2 yorkshire terriers and Jaimies Yorkshire Terrier and Puggle, I had surgery in June 2018, many hospital trips/admissions/appointments, road trips, spending new year 2019 in the hot tub and seeing The Enchanted Forest Exhibition here in Scotland! Having a stoma has brought me more life and love than I ever could have imagined and has given me the freedom to be able to do things when I am well enough. Being completely honest we both have seen many ostomates worry about finding love because of having a stoma or a Chronic Illness. There are so many options available to hiding your stoma bag if that’s something that you are better suited to such as support wear from Comfizz or finding high waisted briefs for the ladies. At the ball Jaimie wore the unisex boxers and they really are great for keeping your clothes flush for special occasions! I wore my Jasmine Stacey Collection Royal Blue Set. Otherwise we don’t care about seeing each other’s stoma’s in fact now I think it would be weird if we didn’t see each others bags! Most of all Jaimie has helped me gain some confidence back that I had lost due to past mental abuse and thinking I was never good enough, sometimes I still have those days and it’s so heart warming to know that even with my hair scrunched up, my pyjamas on and feeling really fatigued with eye bags that someone does love me, someone does care.

We have so much planned for 2019 such as the Get Your Belly Out ball on the 6th of April, The Purple Wings Charity Ball and hopefully a holiday outside the UK with my best friends Levi and Steph. We also have a lot of hospital appointments this year such as MRI scans for me, surgery for Jaimie, new consultant appointments for me in new departments and infusions. I recently got a new tattoo above my stoma with the IBD ribbon, the date I got my ileostomy and survived sepsis and the Sepsis ribbon. Jaimie gets his next tattoo tomorrow then I am next again in May!

Never did I think that I would find someone like Jaimie – someone who gets me, over looks my flaws and loves me for the weirdo, short fused and crazy person that I am, someone who wants to start a family and wants the best for us. I look so forward to getting married one day, being able to move in together and be a family.

Having a stoma is not the end of life, it is an entire new chapter in life.

-Alannah.

Self Care

Self care is so important especially to those who are chronically ill. Looking after you can be hard when you struggle just to do basic tasks from fatigue.

When able, take some time out for you. Do a facemask or have a soak in the bath with your favourite bath bomb. Watch your favourite films or shows and eat the crap you have been craving! Chill out time can also benefit anxiety if you have been feeling on edge or suffering from panic attacks. Working on self care can also help you try to figure out what to do when a panic attack occurs.

For my self care routine (when able) is to sit on my bathroom floor with a basin of warm water, bodywash, netflix on my iPad and shave my leggies. I then wash my face, exfoliate, cleanse, tone and hop in the shower and I come out not looking like a hairy yhetti! Ha ha. I will also change my bag if it is bag change day and apply moisturiser to my legs, all of these combined makes me feel so relaxed. I always worry about my image and I can’t stand having hairy legs but I struggle a lot so by the time I’m able, they look dreadful and my self esteem drops to an all time low.

Pain, fatigue, sickness and all that negatively affects you with an illness can be a struggle. It is not glamorous and it can make you feel shit. A little bit of pampering goes a long way in terms of making you feel better mentally and can help to give you a confidence boost. Nothing beats feeling fresh, getting into clean pyjamas and relaxing in bed even when in pain.

Hoping everyone manages a pamper some time soon and remember to look after yourselves.🖤

Colostomy UK Events!

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The Colostomy UK charity supports and empowers people living with a stoma. This year they have some fantastic events for ostomates to attend and the best part…? for FREE! Yes you read that correct! Ostomates can gain confidence and be active without the worry of funding it themselves.

A little more about Colostomy UK;

As mentioned above, they are a charity who help and support people with stomas. They also have a support group on Facebook with over 7,000 people, which you can find by clicking here and is run by volunteers. They also have volunteers on a 24 hour phone line which is 0800 328 4257 if you would like to talk to someone.  Their website which is linked at the top of this blog has so many resources such as a blog which shares people’s stories, to view my story on their blog please click Alannah’s Story, The Tidings Magazinea link to your local Colostomy UK support group, Open days and films!

So what events is available to take part in this year?

For Swimming Locations and Dates:

Rugby League Matches: 

Bigger chair yoga activity Locations and Dates:

  • Chester hospital open day April 24
  • Stoke Mandeville hospital open day June 8th
  • Bristol Ostomy support open day June 1st

 

The activities are run through a project called Active Ostomates and carried out through support groups. You don’t need to be a member of the support groups to take part but it means that people are carrying out these activities with people they know, in an environment they know.

Hopefully you are close by and can take part!

 

 

The Purple Wings Calendar Photoshoot!

Myself and The Purple Wings charity would be so grateful if you could sponsor me for the 2020 Ostomy Calendar Photoshoot!

This will be my first photoshoot with my Ileostomy also known as a stoma! I have been fundraising for this charity for a short period of time and I really hope I can get sponsors and fundraise, so that ostomates can regain their confidence during and after surgery for a stoma.

About The Charity:

“,17,100 people need stoma surgery each year.

Purple Wings is Here to Help

Recover, Adapt & Overcome

The vision of the charity is to help ostomates regain confidence through our Time for Me Grants. This is a tailor made service and is very much based on a relationship built between the person applying for the grant and all of us here at the charity. It might be that a person really…

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My Go-To Hair Products for Chronically Ill Hair

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For so many men and women who are chronically ill, their hair also suffers as well as a wide variety of symptoms. This can be caused by using medications to control the disease such as chemotherapy drugs (you can read my blog Chemo Isn’t Just For Cancer here) or by vitamin deficiencies, malnutrition and sometimes from long term steroid use.

I remember talking to my hairdresser recently about this issue as back in 2015 I was on a chemotherapy drug called Methotrexate and my hair was thin, I lost almost all my eyebrows and my eyelashes looked awful with what was left of them and back then had no real clue as to what to use that could help. It’s really important to try and do what you can to look after your hair to avoid getting the chop, which believe me is devastating if you had long beautiful hair before medications!

It’s also important to get your bloods checked for any vitamin defencies or thyroid issues before following any the tips and products below.

So what products and things can help?

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Matrix rebond Trio

This trio helps to repair the hair that has either been chemically damaged or is just pretty damaged as it is and helps the hair to become strong again. The number 1 and 3 you use as normal then once a week use the number 2, after using 1 then add number 3 without washing out number 2! I also use a tangle teezer brush and brush this through my hair which helps when I need to brush my hair afterwards.

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Nioxin Hair Care

Many people including myself recommend this from my own personal experience if you have had or have thin hair that is thinning. It can help but do bare in mind that it may not help completely. To see which one is best for you please click here to visit the website.

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Regular trims

Having your hair trimmed from time to time can help to cut off the bad straggles at the ends which in time travel up the hair and cause damage and split ends. It also helps your hair to be healthy and shiny. Trims can also help your hair grow but that depends on your own body.

Hair conditioning treatments at your hairdressers

This helps to rebuild broken bonds and damaged hair and repairs leaving your hair beautifully soft and conditioned. It also helps repair the split ends.

Less heat

Using heat on your hair too much causes damage to the hydrogen bonds in the hair making it dry, brittle and full of split ends. Leaving your hair to air dry and only using heated irons every so often is recommended by hairdressers. Be sure that when using heated irons, you use a heat protection spray, the Matrix one is really good and smells lovely!

Washing every 3-4 days

Washing your hair a few times a week is better than every day, as washing every day strips the hair of its natural oils keeping your scalp and hair healthy. This gives you hair the chance to heal and have more shine.

Taking vitamins

You can find these in Holland and Barrett however always ask your doctors first!

Avoid box dyes!

Box dyes are great for saving money and time however they are extremely damaging to the hair over time. It makes it harder for a hairdresser to take out the dye without damaging your hair so it is a very long process to get it out and the desired colour to enable good condition of your hair.

Tangle Teezer Brush

Using a tangle teezer brush is much better for getting those tough knots and tangles out! I personally use mine to brush through conditioner in the shower so after rinsing, there is less tangle and the product is taken evenly through my hair.

Here are some examples of what people have faced with their hair from being chronically ill:

Levi now (left) and when she lost her hair (right) due to being on cyclosporine to treat Ulcerative Colitis.

Myself now (left) and when I was on methotrexate (right) to treat Crohn’s Disease and Ulcerative Colitis.

Emma now (left) and whilst on plaquenil to treat connective tissue disease. (right)

Brenda now (left) and whilst on Methotrexate (right) to treat Crohn’s Disease.

Kay before treatment (left) Kay now (right) from infliximab medication to treat Ulcerative Colitis.

Sarah now (left) with thin hair due to the medication vedolizumab to treat Crohn’s Disease and when she had thick hair before treatment (right)

Lauren now suffers with alopecia areta and both these pictures are recent.

Emily now (left) whilst on Colchicine and what her hair was like before this medication which is to treat Behcets Disease. (right)

Candice before methotrexate (left) and now after having to have the chop (right)

Nic now (left) after long term treatment of Steroids for Crohn’s Disease.