Awareness, Chronic Illness Blogs, Mental Health Blogs, People's Stories!, Personal Blogs

The Mental Health Taboo With Pregnancy

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After watching Loose Women, a celeb dating star Anna Williamson talked about her mental health before pregnancy, during and after the birth of her first child. Anna was extremely brave in talking about something that society has a set perspective on when it comes to pregnancy and having a family which is that pregnancy should be the most exciting and amazing time of your life. But that isn’t how it is for many who suffer from mental health conditions.

In my blog IBD – Pregnancy/Termination I talked about my situation when I became pregnant after being told I would never be able to get pregnant and to help other women in the same situation I was in which was that I was told this information based on opinion and through no fertility testing. However I never talked about the emotional impact this had and STILL has on me. It’s hard, and that’s putting it lightly. Since then I have had another miscarry and I am desperate to be a mum. They say to look at that silver lining and for us, it’s that I know I can get pregnant now!

I spoke to women and men who also felt that mental health had a big role to play prior, during and after pregnancy;

 

Kellie

“It felt like I was going to fail as a mom. When I was pregnant over three years ago, four months before falling pregnant I had my stoma operation. My surgeon was very concerned which made me concerned and panic. There were regular what ifs and what if this baby didn’t make it  as I had had 5 miscarriages. At ten weeks, my whole life was on pause as they didn’t know if I would survive, they diagnosed me with a brain condition and I went blind for three months. I was in such a dark place I didn’t know if I was going to make it, I kept asking myself was my baby going to make it, or if we did pull through how would I cope being a mom with a new illness on top of the illnesses I already have!”

“Pregnancy was no walk in the park for me, and I couldn’t be alone. I was scared to be left alone so my partner would come to the hospital everyday and be with me from 7am that morning till 11pm at night. I had to stay on the phone to him all night just to try and stay as calm as possible. I was also on different types of medication as they didn’t know if the baby would come out addicted to the medications or not. I wasn’t on medication by choice, I was on medications to try and survive and for the baby to survive. I had open brain surgery at 20 weeks pregnant and I honestly thought when I was being put to sleep that it would be the last time I would see my family. I didn’t bond with my son for a few months and unfortunately, it took longer for me to bond with him as all I did was sleep and eat. My partner actually had him the majority of the time after major bowel surgery, being ill, open brain surgery and being a new first time mom. Delivering conor I was all over the place between hormones. I really didn’t know if I was coming or going. When I got better and when I was allowed to go home, I was close to my due date and I kept having panic attacks thinking something was going to happen to the baby or myself. I couldn’t sleep, I was restless, I was alone.”

Laura

“I’ve been on maximum dose antidepressants for depression and anxiety since the age of 14. When I became pregnant in 2010, I was seen at the hospital regarding my medication. They advised me to either come off my medication or to switch to one that would have less effects on the baby. My anxiety told me to stop my medication completely, I couldn’t bare the thought of any medication having a negative impact on this little person I was growing. The first few weeks weren’t too bad, I found myself either feeling on cloud 9 and the happiest person alive or I then felt myself pushing everyone away and isolating myself. I kept blaming it on pregnancy hormones and carried on as I was. My baby was born prematurely in April 2011 via emergency caesarean. Nothing prepared me for that, and especially for what was to follow. I blamed myself entirely. I blamed myself for my tiny baby being in high dependency. I felt like I had failed him, my body had failed him, and for weeks I bottled these feelings up and tried my hardest to embrace my new role as a mother.”

“When I finally brought my baby home, I made sure he was clean, fed, loved and my god did I love him. But there was always this overwhelming feeling inside that I wasn’t good enough. I truly believed that I didn’t deserve this baby and didn’t deserve to feel happy. I told myself I didn’t love him enough. I struggled in silence for 6 months before admitting that I needed help. I openly told my doctor “I can’t do this” and the GP put me back on to antidepressants. It has taken me so long to accept that I need these tablets to function and to stabilise my emotions. It has taken me so long to accept that I was and am worthy of this special boy. I am no longer ashamed of my mental health issues and I need to take these tablets to make life easier for me and keep those intrusive thoughts at bay then I do! I was also so in love with him but I remember those unwanted and intrusive thoughts creeping in, telling me I wasn’t good enough for this and that I didn’t deserve this beautiful baby boy.”

 

Danielle

“Before I fell pregnant, apart from the desperation and obsession with becoming pregnant, my mental health was quite good. I was always able to control it and get on top of it myself. Never felt I needed to seek much help and always dealt with life’s shit pretty well. But it’s like something changed in me when I became pregnant, I was petrified of losing my unborn baby! SO petrified that I was adamant it was going to happen.
I didn’t really enjoy pregnancy much until 20 weeks. I don’t know why but that 20 week scan made me feel like I could breathe a bit and my unborn baby boy was healthy and he was actually going to be OK. But that horrible anxious feeling never fully went away, I think that’s because I didn’t have a lot of trust in my body, seen as though it had thrown a chronic illness at me out of the blue. Despite all my concerns and issues, besides initial worries from labour, he was a healthy baby boy. I don’t know if my pregnancy anxiety is to blame for my mental health declining once I had him. He had Cmpa ( a food allergy caused by the baby’s immune system reacting to proteins in cow’s milk) from birth so we had our issues and battles which was never easy. He wasn’t diagnosed for weeks and I felt like I was losing an uphill battle with medical professionals. I struggled so much from early on because he screamed, a lot, and wasn’t a happy baby. I felt so stressed and angry All. The. Time, A time that I was meant to be enjoying my new baby boy it was awful some days.”

“Even though I wasn’t alone I felt very alone, very scared, both judged and a very bad mum! I was petrified to talk to anyone about how I really felt incase I was judged! I was so scared someone would take my baby off me and think he would be better off with someone else. I did go to the Drs a few times, trying to explain how I felt but I kept getting dismissed and I lost faith in them. Eventually, nearly 2 years after having him! 2 whole years, I felt like I was losing my mind and I wasn’t a very nice person to be around. I couldn’t control my anger or my emotions. I felt so lost and so far from myself it was unreal! I took my sister to the Drs with me who thankfully listened. I self referred from there advice to try CBT. I give it a good go, I tried a few appointments and stuck to it, but still felt myself sinking. My son was well over 2 now and he deserved so much more than what I was giving him! So I went against everything I once believed in, and asked for antidepressants. I was scared of those because I didn’t want to feel numb, I didn’t want to be emotionless towards my son or partner, but I NEEDED something and fast. So 11 months I have been on them now, and my God what a difference!! I’m quite saddened to think I lost myself for so long and got such an important chunk of my little boys life, and I know, which is also proven, that my mental health WOULD of had an effect on him because I left it too long. But I pray and I hope with everything in me, I have time to reverse any damage and soon enough, before the years out, I’ll be medication free and coping OK. Nobody tells you about this part of pregnancy and being a parent, not peppery. You never expect it to happen to you. But it can happen to anyone. And please don’t do what I did, don’t try cope and don’t ignore it. Ask for help, no-one is there to judge you, only to help you.”

Zoe

“My experiences with a newborn – I went into it expecting it to be the most amazing and wonderful experience in the whole world: especially after all the ivf and how longed for our baby was, I thought it would be magical. And don’t get me wrong, it was wonderful, but wow it was so hard too! The physical exhaustion of having a newborn affected me more than anything. I was breastfeeding for the first 2 and a half weeks, and he would feed constantly. And I mean constantly. There was no physical time left in the day for me to sleep. I was beyond exhausted. I was losing control of my mind, I felt like I was ghosting my body, like I wasn’t there. I felt like looking after my baby was a chore. I didn’t feel like I could enjoy even the cuddles. It wasn’t until I started bottle feeding, where Harry actually enjoyed being put down, I could actually sleep, and I got my sanity back. When he was breastfeeding, he would only settle on me, he would only sleep on me. It was relentless. I didn’t want to tell anyone, I felt like I was failing and I had to keep my front.”

Debbie

“I have recently had 3 miscarriages, and during my pregnancies with both my daughters in 2007 and 2008, I had strep B with severe sickness. Due to severe depression which I was diagnosed with in 2009, my two girls were taken away and have been adopted. I found it hard to manage simple things like cooking, couldn’t eat without being sick so ended up being anemic for a while, I couldn’t get much sleep as I was always lay awake worrying. Due to this awful experiences, I have ended up not trusting professionals and I still don’t. I was always worrying something bad was going happen and this has affected my mental health long term.”

(this gentleman is being kept anonymous) 

“I find men don’t know what to expect during pregnancy, and I personally found that when going into the hospital with my partner, I was ignored by the staff. They don’t tell you what to expect or how it’s going to be. When we had my youngest, my partner was on gas and air and I sat there doing nothing until she went into labour, nobody talked to me or said what to do or helped me cope with it all. I think because we aren’t the patient, we are left to it which I think is unfair as it’s an experience to go through together as a couple.”

Amy

I have never been very maternal, yes I wanted children, I wanted one each a boy and girl, but for me I had to be a lot older, successful and married. Obviously fate had a different idea. I fell pregnant 3 months after dating my boyfriend, it was mid Jan 2015 when I found out. I had just landed a full time permanent job and this really put a spanner in the works. It was a shock, this wasn’t planned and I didn’t know my boyfriend that well enough either. Even though my pregnancy was a shock, I knew then and there I was sticking with this pregnancy. My boyfriend however wasn’t so keen on the idea. I broke the news to my parents and apart from an initial shock the next day they both supported me with whatever I decided. My boyfriend took a whole week to tell his parents and they weren’t thrilled either. Back then I think I should of left him as the warning signs were all there.

My pregnancy wasn’t easy at the slightest, I’m 4ft9, I was about 5 and a half stone then, so growing a baby left me in a lot of pain. I was sick constantly and was back and forth in A&E as I was so dehydrated and had constant drips to help with that. I had sickness throughout until I actually went into labour. My boyfriend came to terms with things but wasn’t at all in the slightest encouraging. He came to most of the scans, as did my family but he wasn’t overwhelmed with emotion like we were. Anyway we got prepared and minus the sickness and needing constant growth scans, (as for a while baby was growing quite small) things were fine and dandy. My due date was 4th October 2015. I got told I wouldn’t be on time and would be late, however on the 14th September, I was getting a lot of pain and started bleeding. On the 15th pain was worse and my mum decided to time them and low and behold I was actually starting labour. The labour ward got me in when my contractions were about a minute apart and after a quick sweep and realising I was already 4cm dilated, I had a birth pool running and we were in hospital. 16th September 2015 at 7:56am my daughter was born at a beautiful 6lb4oz. Apart from being a bit blue and mucusy she was fine and after 24 hours we went home. This was when things went bad. My partner moved in with me in my parents house, but they just couldn’t get on. He hardly helped with our daughter and at this point I became quite poorly myself as was having a lot of stomach pain. It got so bad at one point I had to get an ambulance round. No-one could work out what was wrong so was put on some painkillers. Day 5 of my daughter’s life and after a few days of her being jaundice my midwife and health visitor told me to get her to hospital and myself as well as I was running a fever and not being well. So we did. We both got admitted in.

My daughter was poked and prodded with numerous tests and she was rushed straight to NICU as her bilirubin levels were dangerously high. We were told if they continue to rise that she may have brain or organ failure. We were told to expect the worst if things didn’t improve in 24 hours. She was put in all uv lighting. She had tubes going everywhere and the tiniest cannula ever. This was when my mental health went bad. My heart was breaking in so many ways. How can this happen? I’ve only had her in my life for 5 days, you can’t take her away from me now. Will she live? Will she have permanent problems? How am I going to cope? Why the hell has this gotten so bad? I was distraught and worse I was admitted in and until they can figure out what was wrong with me, I wasn’t allowed to be in nicu. I was breastfeeding so I needed to be there so I could do that. They allowed me for that reason but after 2 days my bloods came back saying I had an infection and while that was going on I no longer could be there. So I expressed. But I wasn’t making much sense, which then made me cry my eyes out as I couldn’t even do one simple thing for my daughter. The hospital was amazing. They made sure I was being checked on and keeping me updated constantly about my daughter. I had the mental health team round as my scoring was very bad so they sent the support, but I refused, I just wanted to be with my daughter. Her father hardly went to see her, he was more interested in playing his game or sleep. At one point he saw her for about 10 minutes and then went off with his family to get a pizza, not once asking if I needed anything.

My parents, especially my mum, were there being my support group that they always are, they made sure I was coping and being there with my girl while I couldn’t. They gave me things so I had her smell and she had mine. Regardless though, I still felt alone, so lonely, so lost, so hopeless, so frustrated and so very angry. I just want my baby home and well. Somehow a miracle did happen and after 2 and a half weeks we were home. We had another month of tests to make sure nothing creeped back but she was safe. But even being home my low mood didn’t budge. I instead worried every time she was asleep.

It is incredibly brave for these people to share their stories over the past few months and to share via this blog post. The main aim in sharing these stories is for those who are in similar situations with mental health whilst being a parent’s or parent’s to be to not feel so alone. It’s OK not to be OK at any time in your life! Just make sure to reach out and get the help and support that you need, whether that be in a friend, family member or medical professional.

Mental Health Blogs, People's Stories!, Uncategorized

What’s Your Story? Meet Lisa!

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

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

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

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

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

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

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

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Albert (8) in picture above

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

Chronic Illness Blogs, People's Stories!

Funny Stories With A Chronic Illness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

-Alannah

People's Stories!

What’s Your Story? Meet Megan!

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

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

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

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

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

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

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

 

People's Stories!

What’s Your Story? Meet Nicola!

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

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

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

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

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

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

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

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

 

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

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

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

People's Stories!

What’s Your Story? Meet Lauren!

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

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

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

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

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

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

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

People's Stories!

What’s Your Story? Meet Denis!

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

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

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

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

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

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

-Denis.

People's Stories!

What’s Your Story? Meet Amy!

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

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

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

“Thanks for reading – Amy”

People's Stories!

What’s Your Story? Meet Our Life With Crohns

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

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

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

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

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

People's Stories!

What’s Your Story? Meet Ella!

 

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

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

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

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

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

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

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

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

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