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

Chronic Illness Blogs

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

Chronic Illness Blogs, Personal Blogs

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.🖤

Chronic Illness Blogs

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.

Chronic Illness Blogs

Fatigue.

Fatigue is a not so funny, funny thing. You go to sleep, you wake up and still feel as if you could sleep but your mind is wide awake yet at the same time giving you brain fog – a term in which is used to describe the inability to function mentally with the fatigue.

Your body says no can do today. So you wish the next day for yourself to be full of bounce and able to do some simple tasks. But again you wake up repeating the same process, hoping the next day, then the next day for this lease of energy. You struggle to shower, get dressed, you forget medications or forget to eat, the housework and daily chores are literally – a chore! Your body aches and some days the fatigue can make you feel low in self esteem, lack confidence and just feeling down in the dumps. You nap and wake up feeling worse then unable to sleep at night and before you know it your sleep cycle is totally f*cked up!

Then a day arrives that you get energy and it is truly amazing! You get all the housework done and the house is sparkling clean, if you have animals or children everything is all upto date and all are washed and clean with clean bedding, you remember to take your medication, you make a meal and eat, you drink plenty fluids and enjoy listening to the radio or music, you are able to go for a walk and actually enjoy it without the aches and pains of your body. You can read a book without looking at the words without being completely confused by gobbidly gook!

So what steps could you take to help in preparation for a bad day of fatigue?

Having drawers for certain things really helps – for example my bed side drawer I clear out monthly which holds my medications, glasses, hand cream, wipes, peppermint oil for my sinuses and lip balm. On my bedside table I keep a bottle of juice to keep hydrated and to take my medications.

Cleaning dishes – I got a table top dishwasher so that all I need to do is rinse my dishes and put them in and they are done in an hour or so. As for the dogs, I have their bowls and food looked out on the counter so it’s easily accessible. You can also benefit from hiring a cleaner if that is something you can afford!

Changing bedding – Changing bedding once a week is hard but if the day of changing my bedding arrives and i’m not able, I will do it the next day, having a dedicated day each week to do this may be difficult but it’s handy as you will get into a routine of say for example “sunday is bed change day“, you can rest the day before.

Freezing home made food is great. I recently had my fridge freezer break so I got an american fridge freezer so meals are more accessible and I know that they are home made and I like them. Sometimes I will find it handy to take things like crisps and biscuits into the bedroom so that if I don’t feel like eating a meal, snacks are at hand.

Don’t feel bad for asking for help. Sometimes it can feel degrading asking for help because you are so tired, but don’t feel bad! If you have a partner, friend, neighbour, healthcare professional or family member that is able to attend your home and help you – ask! When my fianceè comes to visit I ask for help even though I don’t like to. That one person can make that one day much more bareable and easier for you and the company is also really nice.

Netflix and NOW TV on a TV or laptop helps pass the time. There are many good shows on Netflix such as The Vampire Diaries, Pretty Little Liars, Jane The Virgin, Grimm, Riverdale, The Ted Bundy Tapes, Evil Genius and The Staircase. On NOW TV there are great Disney films such as Moana, The Lion King 1, 2 and 3, The Little Mermaid, Finding Nemo, Finding Dory and Tangled.

Many people that donot suffer with fatigue think that fatigue is the same as normal tiredness after a hard days work or a sleepless night. The reality here is that it is not the same thing. The definition and meaning of Fatigue: extreme tiredness resulting from mental or physical exertion or illness.

I hope this can help some of you or better; all of you!

-Alannah A.K.A Glittergutsx

Chronic Illness Blogs

Dating With an Illness or Disability

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Following The IBD and Ostomy Support Show conversation, talking about body confidence and dating with a disability got me thinking, how is dating with a disability? The real answer is that it really isn’t any different at all. Many people struggle with body confidence or putting themselves ‘out there’ for love because of their illness(s) or disability.

Before having any disabilities, I lived life as normal and dated and never even gave illness a thought.. that was until the age of 17 when I got poorly. However this didn’t change finding love or having relationships. The problem was that the people I gave my time to didn’t give me their time back. After surgery for a stoma I wasn’t given the right support and he only came into hospital once on valentines day 2015 then dumped me on the way home when I was discharged just a few months later. It wasn’t until after my surgery for my stoma that I truly appreciated my body, including my stretch marks and flabby parts! I wanted to know what people’s advice is for people looking for love with a disability..

This is what they said!:

Louise with Crohn’s Disease and an Ileostomy: “Be honest. No point in beating around the bush, getting attached and then revealing your secret and having them turn around and say it’s not worth their time!”

Kaz with Ulcerative Colitis: “Patience and understanding. Be prepared to be cancelled on short notice- offer alternatives- if not we’ll enough to go out, maybe offer to go to theirs and cook- they’re probably exhausted and feeling awful for letting you down and that offer could really boost them up!”

James with Crohn’s Disease: “Let people know that your condition can change at any time for example one minute you can be okay but then you can become really ill in a short amount of time.”

Hanna with Ulcerative Colitis, an Ileostomy, PSC and Fibromyalgia: “My main advice, don’t sweat the small stuff.”

Jonathan with an ostomy and Crohn’s Disease: “Best thing when dating is to be honest and just be yourself. If anyone has a problem with your stoma then that’s they’re problem! I have had Crohn’s Disease since the age of 16 and got my stoma at 26.. 10 years later and I am planning my wedding day!”

Annie with Fibromyalgia, Colonic Inertia, Crohn’s Disease and Bile Salt Malabsorption, Ankylosing Spondylitis: “Don’t be an ass!”

Laura with Crohn’s Disease and a Colostomy: “The disability isn’t who you are. I was completely honest with my now hubby when we first met and we sat and chatted he asked lots of questions, some which I thought were brilliant and I needed to ask myself . BUT I did also burn lots of amazing strong smelling candles too should I have to dash off to the loo! It also helps if you invite your partner along to your consultations. “

Theresa with an ostomy: “Honesty and having a sense of humour.”

Jennifer with Painful Bladder Syndrome, Depression, Anxiety and PTSD: Patience, Compassion and understanding. Just because we have done something before doesn’t necessarily mean we can do it every time and that our ‘days off’ will likely be interrupted or structured around hospital appointments.”

Sahara with Ulcerative Colitis and an Ileostomy: “Just being honest at the start. There’s no point wasting your time dating someone, only to find out a month down the line that they can’t deal with it. So be as honest about how your condition affects you as you feel comfortable early on. That’s what I’ve always done.”

Murk with an ostomy: “Being open from the start is probably the biggest thing. Some people might not be able to accept it so it’s best to get it out there so you don’t waste your time with them.”

Tim with a J-Pouch: Try not to be defined by your pouch it’s not so much a *disability*, it is more something that enables you to live more normally!”

Vivian with an ostomy: “Honey, never forget how to flirt! Even if that’s all we want to do!!”

Jack with Crohn’s Disease: “Be open minded!”

Dustie with an ostomy: “Dating can be a fun learning opportunity and lead one to finding a match made in heaven. My husband still loves me— Zebra or not. I am still super awesome, sexy, funny and his wife after all we’ve been through with my health. He wouldn’t change a thing about his decision to marry me and have baby zebras to have avoided my health issues interfere with our lives. I also realized that for me to stop feeling like I’m a burden to those around me, I have to stop believing I am one. My family and friends would rather have a disabled mom/daughter/sister/wife/bestie in their lives than no one.”

Katie with IBS and Damage of the Sphincter through childbirth: Honesty – I had a wheat and caffeine intolerance but when the man of my dreams asked me out for a pasta and coffee meal deal I couldn’t refuse! Needless to say I spent a lot of time in the toilet so had to confess. He didn’t mind though and he’s now my husband!

Sue with an ostomy: “I love being single…disability or non….❤️”

Myself with Behcet’s Disease and Vasculitis: “be accepting of your swelling, stretch marks and imperfections.. it makes us who we are!”

love-2

I think these are some fantastic tips to give to someone who is either dating with a disability or dating someone who suffers from a disability. It is so important to listen to one another and to definitely be honest with the person at all times, and explaining things they may not understand. If it’s something you don’t really understand yourself, there are lots of facebook groups or websites available which can help answer those questions. Be respectful to the person that is suffering and not being ignorant towards illness or disability is key!

If you are looking to date and have a digestive disorder of any kind, please sign up to Gutsy.Dating!

Hope you all have a fantastic valentines whatever you choose and whether you have a partner or you are single!

-Alannah A.K.A Glitterygutsx

Chronic Illness Blogs, Uncategorized

Home Remedies

oils for blog

I have experienced and noticed many issues people can have such as a sore spot or sore skin after a bag leak, which leaves us wondering what on earth to use when these things happen. So, I am passing onto you what has been passed onto me that has worked, from items that you may have in your home.

Sore skin after a bag leak 

Calamine Lotion is fantastic for soothing sore skin after a bag leak along side plenty oxygen for a couple of days, at each bag change. I use a cotton wool pad and soak it in the lotion and dab it gently onto my skin then air it out with the window open for around 5 minutes. I use this as well as my skin barrier spray.

Spots or puss spots 

Tea Tree Oil helps to dry up the spots and draw out any infection. I find it’s best to put this on before going to bed at night after washing your face. You can also use toothpaste and let it try, it too is good to dry up spots.

Dry skin 

Coconut oil mixed with sugar is great to exfoliate and get rid of dry skin either on your lips or face and has no chemicals to irritate the skin. It also smells super good!

Cleaning body piercings 

If you are looking for a quick and easy way to clean your body piercings, simply get a mug and pop in some boiling hot water from the kettle and lots of salt and put the piercings in for a few hours. Not only are they sterilized but also super shiny!

Sore throat and cough 

You know when you have a cold in the works when your nose starts to run and your throat starts to get sore with a cough, taking paracetamol appropriately is good. At home you can find things to help in your kitchen to help too. Simply boil the kettle and in a mug put in squeezy honey and some lemon juice, I add in 1 sugar to help sweeten it up! You can also gurgle salt water too before hand.

Sleeping issues or insomnia 

There is information to say that melatonin can help with sleeping troubles which is mostly found in Milk. However Lavender can help if you have the essential oils lying around, drop some on your bed sheets, making sure to avoid where your face would come into contact.

Migraines and Headaches 

If medication isn’t a possibility to help with your Migraines or sore heads, I have found some things that help me when the pain just won’t budge or medication hasn’t worked. Ice packs on the back of the neck and forehead really helps relieve the pain. I also open the window for fresh air to help keep the room at a suitable temperature.

Swollen, Puffy or Sore Eyes

For sore and swollen or puffy eyes, cucumber is really good at taking that down, along side antihistamines. Cut into slices and place one on each eye and leave for around 10-15 minutes,

Blocked sinuses or Stuffy Nose

Peppermint oil combined with Eucalyptus oil is really good for clearing blocked sinuses or if you have a sinus infection and have a lot of pain. It’s great for stuffy noses too as it helps you breathe. I put some drops into a bowl of boiling water or menthol crystals and have it sitting next to me, before bed I make sure to have one at my beside to help me breathe throughout the night.

Toothache, Gum or Abscess Pain

Clove oil is great for toothace, gum and abscess pain in the mouth. Pop some onto a cotton wool stick and dab onto the affected area!

Joint Pain or Swelling and Muscle Pain

Having a nice warm bath can soothe those aches and pains. I found that the Radox Bath Salts were so good on my sore joints, the lavender also helped me to relax and smelled lovely!

Wound Healing or Soothing Wounds

Again, a warm bath with just salt can really help with wound healing or itching. I usually put in a couple of table spoons.

 

 

 

Chronic Illness Blogs, Uncategorized

Coping With Grief

Grief is an unimaginably painful thing to go through and live with on a daily basis. It’s a pain you can’t describe in great detail apart from a piece of your heart is just gone, dark like an empty room with no lights on.. when nobody is home.

Like many, grief has happened in my life and still to this day I struggle with that. I also struggle to accept change in cases where people change or a place I once went to is knocked down; that sort of thing. When my life changed due to being unwell and having surgeries it was hard. Yet somehow as surgery and illness is part of my daily existance, I have managed to accept that but I still find myself asking the question of “why?”.

When my granda passed almost 12 years ago that crashed my world and has brought so much change to my life and family as I once knew it. I remember his prickly mustache as I kissed him goodnight before I went to bed when I was staying over at my Grama and Grandas and how it itched. I remember him and grama watching casualty or the ice cream floats he made us with moray cup whilst watching The Lion King. Or the hot chocolates with cream on top and getting it half way accross my face. The hot summers where we would make dens in the garden with blankets or playing in the paddling pool whilst he worked away in the shed. My granda adored fish and I remember watching the beautiful Tetra’s swimming around in his fishtank and now having my own fish tank and fish it reminds me of him and on a day I really struggle, I sit and watch them.

The truth is we all suffer from grief. It’s always in the back of your mind. In times where I was on my death bed dying, I wished my granda was there to hold my hand or comfort me. There is no right or wrong way to deal with grief, it’s such a personal thing that what works for you and helps you cope may be different for someone else. Some people like to visit graves and pay their respects with a bunch of flowers or candles. Others just cannot bare to look at a persons grave. This is OK!

Many people who become ill grieve for the life they once knew of and had. The huge change in working full time and being out of the house and doing things whenever they had the time, to then being ill full time and trying to get through the day with pain, sickness and fatigue can be mentally just as challenging. I often dwell on the life I once had (when I was well) and it literally eats me up when I look back at old photos on how I used to look. There was no dark circles under my eyes, my face didn’t swell and I was pretty much care free. I partied with friends and enjoyed going out in cars or taking pictures of scenery. How can you explain the grief of loosing yourself? You just can’t.

At some point we have to realise that living life whilst always looking back won’t take us forward. Letting go of grief is extremely difficult. I’m lucky that the people around me have accepted that I will never be able to let go of loosing my granda. I still cry about it and I am lucky enough to have dreams where he is there like nothing ever changed but this does come with over whelming grief when I wake up and it takes me a few days to get myself together.

Do things that would make your lost loved one proud and something you too can be proud of. No matter how small it is. Be ambitious and strive for great things. Thanks to my granda for always believing I would do great things, I found love and passion in writing and doing my blog. Doing blog pieces for other companies and raising awareness is so joyful I couldn’t explain how it makes me feel, even if I tried!

It is hard living life without that person you loved or respected. Honestly all I can say is that when you are surrounded with people who accept your grief and do not question it, it makes it easier to cope with and continue each day. My most important advice to you is if you are grieving – don’t hold it in and don’t bottle it up. Talk to someone about it, be it a doctor, councillor or friends and family. I only talk to my partner about it and for the first time I am writing about it to help others who are going through this pain.

Just know that every little step forward that you take is a big and powerful thing. In doing so, you are doing so well in trying to cope and continue with the daily chores of life.♡

Awareness, Chronic Illness Blogs

What We Want Our Partner/Family/Friends To Understand.

For day 3 of the Crohn’s and Colitis Awareness Week, I thought it would be appropriate to write about what we (IBD Sufferers) want the important people in our lives to understand because we love them and want them to know that even through illness that still remains. Except we may need a little more support and understanding at times.

So here is what we want you to know:

  1. We go through the frustrations of financial stress too. Infact its so frustrating that we cannot contribute as much as others, be it in a household or when it comes to gifts that it can make us even more unwell.
  2. We don’t have the choice of not being able to work. For many, the choice has been taken away. It is not a luxurious life style where we sit at home and enjoy life getting money for nothing! Being unwell is a full time job its self – taking medications regularly, trying to eat something each day, trying to keep hydrated, spending hours multiple times a day either sitting on the toilet and passing blood or vomiting. Others who have stomas can have multiple bag leaks, wound leaks, bleeding, blockages and active disease causing side affects such as fatigue, anemia and struggles with weight.
  3. This disease can make us feel isolated because many of us are house or bed bound. We rarely see the outside world unless it is to attend procedures, hospital admissions or hospital appointments.
  4. Because we look “OK” on the outside does not mean that we are! Some days it feels like we are dying because the pain is so intense. Can you look through the layers of our skin and muscles and see the inflammation or ulceration? NO.
  5. IBD is just as serious as Cancer, Heart Disease and other health conditions than cause life or death situations. We are at risk of just as much issues!
  6. IBD is NOT the same as IBS!! IBD stands for Inflammatory Bowel Disease which is disease of the organ or organs the disease affects causing inflammation, ulceration, anemia, weight loss, bloating, fissures, fistulas, abscesses and sickness, which is a life long illness. IBS stands for Irrital Bowel Syndrome and it is a syndrome of which the bowel is prone to cramping or trapped wind which goes away in a few hours or days.
  7. Those us who do work really struggle due to pain, sickness, fatigue, issues from medication such as insomnia, moon face, infections and weight gain or loss. Many also suffer from mental health issues and it’s a vicious circle of one setting off the other.
  8. We don’t love you or like you any less when we cancel last minute. Our health is so unpredictable! The symptoms can come on within such a quick amount of time that before we know it, it’s time to run to the toilet with severe cramps or having to vomit. The pain can come within a matter of minutes or when we are in pain daily, it can become worse in such a small amount of time.
  9. We miss the old life we had. We don’t expect you to know how this feels, we simply just need your understanding. We struggle to see friends and family moving on in life, having a family, buying a house or having a steady job. It is so frustrating that we can’t be there to share that with you or we are unable to see you. We cannot explain how it feels to loose who we once were and sometimes that may never go away so please know we find it hard to accept this too.
  10. We don’t deliberately miss nights out, parties or celebrations because we “can’t be bothered” it may just be that that day was one of our worst and a little understanding goes a long way!
  11. When we don’t message or call back – we are not ignoring you! Many of us have to take naps during the day and other times it’s because we are too sick to look at our phones.
  12. Just because we post photo’s on social media with makeup on doesn’t mean we haven’t had a bad day. A photo can hide so much.
  13. When you see us out of the house and we look “OK” it doesn’t mean we are. When people say “you look well so you must be doing better” is one of the worst thing you can say. We constantly battle with doctor’s who tell us that because we look OK, we somehow are.
  14. The smallest of things mean the most! When you hold our hand, when you give us a hug, the cup of tea made for us, getting a hot water bottle for the pain or a message to say you are there for us. That’s what we respect the most. We don’t want showered with sympathy or feeling sorry for us!
  15. Pyjamas are the most comfortable things to wear because of the bloating or pain. So we are sorry if we don’t look the part – you will have to accept it.
  16. Accept that we cannot change our illness, if we could then we would be better and do everything on our own.
  17. Even the strongest of us who suffer can struggle and so, we may not look like we need help but doing something small or offering means a lot!
  18. We are just as entilted to use disabled facilities as someone in a wheelchair or crutches. The judgement and embarrassment or upset we recieve when using facilities available to us is awful. We get “tutted” at and questioned as to why we are using them!
  19. Anxiety and Depression can cause our flares to be worse but it can also be a struggle for us to cope. Its a daily battle with physical and mental pain. We mat disappear for a few days socially and that’s because we need time out from time to time.
  20. Fatigue isn’t just being a bit tired – it’s consuming exhaustion that you can’t shake off. It affects your body and also the mind, where we get “brain fog” meaning we can’t concentrate or remember things.
  21. It isn’t “all in our heads”. The mental health stigma can mean that sometimes doctors will question if we are really unwell or if it’s our mental health when it is NOT.
  22. There is no cure. Juice plus will not cure us, using illegal substances will not cure us and dieting pills or certain diets will not cure!!
  23. At times it can be hard for us to only exist and not live our lives – if we get up and shower then we are trying to do our best.
  24. Travelling can be difficult when we have to go somewhere. Please understand that we don’t want to have to keep making pit stops for the toilet. We would rather be the person waiting for the toilet than the person who has to go so many times!
  25. Many of us have to recieve operations and temporary or permanent stomas. If we have any of these, please respect our recovery process. We may have leaks and when we do please don’t freak out and make us feel bad for something out of our control. The anxiety after a bag leak will always linger – “when will the next one be?”
  26. For those us who have had Ulcerative Colitis and no colon does not mean that because we have no active disease present does not mean we do not have other side effects that come hand in hand with IBD!

It can be difficult for others who do not suffer to understand where we are coming from. Raising awareness, talking to your close ones and showing them is a much better approach than getting frustrated however when we do this we want you to listen and try to understand we are explaining to help you help us. To be a team. So many of us loose friends, family and partners due to lack of understanding and judgement and the affects are devastating. Before you judge or question our illness, please make sure you know the facts. Those of you who stay with us through the bad days will enjoy the good ones with us if and when we ever get one! 😁
It takes just a few minutes to read up about Inflammatory Bowel Disease. It takes a kind heart and good person to try to understand and for that we are thankful.

Awareness, Chronic Illness Blogs

Poop Emoji Things that IBD Sufferers Can Relate To!

Today is the beginning of the Crohn’s and Colitis awareness week so, I thought about writing a blog about poop emoji items which may find IBD sufferers some comfort and positivity, in viewing these items! Don’t get me wrong, I love looking at them and all the different things there is out there, but for me I like the little poop cushion and that’s fine for me!

So, whilst looking around social media, I noticed many sufferers posting about poop emoji cushions and clothing and many of us were able to find the positive side to suffering from an incurable illness that has seen so many of us spending hours on the toilet and many hospital admissions. I have noticed it has also brought acceptance to having Inflammatory Bowel Disease. One of the most heart warming things about the poop emoji cushion is how it has brought love and support to sufferers from family members and friends, making poo not such a taboo subject!

During my longest hospital stay in 2015, I got a poop cushion from Ebay to cuddle into whilst I was on strong medications. During the painful days and sleepless nights I somehow got comfort from my little ol’ poop. It made the nurses laugh at how it’s eyes were so big and googlie! So it also brought positivity to such a terrible time. Before I was rushed into emergency surgery for a stoma to be formed, I asked my mum to look after my little poop and being so dosey on pain relief I said to it “see you on the other side!”

Members from the Crohn’s and Colitis forum via facebook wanted to take part and show what poo emoji items they owned!

Krysta with a hot chocolate and cream in her poop emoji cup from Asda!

Eleanor shared a sign from her local pound shop with a poop emoji sign – totally relatable when you need the toilet and people in the household don’t understand the concept of time!

Emily shares her poop emoji pyjamas, slippers and collection! Again so many of us can relate to enjoying comfy pyjamas and slippers especially at this time of year! My favourite is the unicorn poop emoji tshirt!

Charlotte snuggles into her rainbow poop cushion at night to keep her company!

Members of IBD Supheros also shared some items they have!

Leelo shares her badges for her work bag and eraser which are super cute! I am absolutely loving the stoma bag covers too!

Ian has a poop cushion and little keychain!

Fiona has a poop cushion and a soft stuffed poop keychain!

Stacy shows off her poop cushion too looking fabulous!

James from the Colostomy UK Support Group shows his stoma supplies with the poop emoji!

And Shauna from IBD & Me shares her little walking poop emoji that poops out little sweets!

And Emma from the Bellies Clothes Swap or Donate group shows some interesting items and the realness of trying to wrap presents with our little furry friends!

If you would like to get yourself something with the poop emoji, here’s some things that i found online!

These are all suitable for any gender and even children! Which is perfect for christmas gift or a gift to someone you know. I hope this has brought some positivity to you today! Of course, not everyone enjoys the poop emoji items so please don’t get them an item as it may offend! Another great thing however is the interaction it brings within children and how a parent who suffers can explain things in a fun and positive way!

I look forward to seeing all the wonderful awareness posts this week an if you would like to feature on my blog please message my instagram page @glitterygutsx.