Awareness – The bigger picture

I woke Monday, to see that the Loose Women #mybodymystory campaign I took part in on behalf of the Colostomy Association, had been replicated by another photographer. This photographer has since been invited onto ITVs Loose Women, to discuss the topic of body confidence and OUR photo composition & content. I’ve been very upset and this has been questioned. I’ve dealt with people who have disagreed with my upset, MY upset! Because all awareness is good awareness right? 

I think the ladies in the shot look amazing! There is no denying that they are brave and beautiful, and represent a variety of women. My upset should bare NO reflection on this. These women are admirable BUT this does not excuse that the photographer took credit for someone else’s idea and therefore denied hardworking advocates, the opportunity to discuss their causes. In my view, if I was paid in any other professional role, and for example this was a written piece, I could cite plagiarism and be supported. For me it goes beyond the awareness aspect and onto the issue of my time and effort. 

So let’s talk about my time. My time is precious! I am sick. I rarely get a good day lately. I miss out on time with my family and even when I do get a good day, I often find myself catching up on my blog & other social media platforms. I have around a 5k following & 30k avg reach across all social media. I run my community support group, 3 online support groups that I created (that contain almost 3K members across them). Then there are my emails. Correspondence from various organisations, enquiring about writing & campaigns they wish to involve me in. I also regularly read up on research. Research that I’m either involved with (currently in 3 programmes) or am interested in. I keep my mind actively learning about all things IBD & ostomy related, so I can better help others. Recently I’ve even been reading up on other ostomy related conditions. I may not be a Doctor but it’s amazing what you can study alone in 12 years.

‘Sick, tired and fed up’

I’ve had to cancel and turn down work lately because a) I’m too sick or b) I have no time or c) I have no confidence right now! Some may think I’m home all day so have all the time in the world. Quality, clear headed time comes rarely, yet I’m nose deep in support work 24/7!

So back to the shoot. I was very unwell the day of the shoot, which was a 14 hour day I might add. I was dubious about working with a tabloid paper to begin with and discussed this with my fiancé and Clare at the CA. I had to weigh up the pros and cons. Would it be done well? Would it be done right? What text would they include? Would they sensationalise it? Would it hurt my reputation? Would they make a donation to the CA? Would it compromise any other commitments/contracts I have. After looking at these, I could see one big pro for me, and this was the possibility of being able to further discuss ostomy awareness on the Loose Women show, or maybe elsewhere. I also really wanted to represent the Colostomy Association and all the incredible work they do! 

Now I knew the Sun would include very little information about ostomies, but it could open the possibility of other media platforms to start that narrative. I was putting myself out there as a face and voice for those who cannot. For those who struggle with body confidence AND all the turmoil that comes with having ostomy surgery. I wanted to open channels so that I can tell the whole nation why ostomy is NOT a tragedy. I want to represent every other advocate that works day and night, telling new ostomates that their life isn’t over and it WILL get better. I want to embrace those that are standing infront of that mirror, sobbing because society has led them to believe they can’t be sexy with an ostomy (please go to http://www.sobadass.me to view Sam Cleasby’s talk on body confidence – it’s spot on!). 

4am wake up!

I may be a big mouth but I believe my mouth is the right size for this job, my knowledge is enough and the love I have for my ostomy and YOURS, makes me a good person to smash the negativity…so I’m struggling to understand why some have been so unkind lately?

As you can now tell, I’ve been feeling incredibly deflated. I’ve already spent the past month building my confidence back up (after someone stripped it away with similar false assumptions) and now I’m right back there, feeling hurt. Up until the past month, I have NEVER questioned why I chose to advocate, nor have I been questioned prior to this. I shouldn’t have to justify myself, or prove why I advocate. Surely the evidence is in my work? I didn’t start this page to just blog about my life, about ostomy products or my skin. I always had the bigger picture in my mind.

I am very conscious that I don’t start knocking out repetitive, endless blog pieces & add to a currently saturated community. I don’t want to water information down, I want to support and circulate what’s reputable and already there, whilst occasionally offer new content. I’m not competing with anyone and I have my own directory style. I want to offer new angles and discuss new topics in a way no other person will. I want to make a difference on a bigger scale and just be myself in the process. I have ambition, what is so bad about that? For me quality outweighs quantity when it comes to awareness and if I can reach more people by aiming high, then that’s where I want to go (thank you So Bad Ass for the inspiration). I should not have my integrity or reasoning questioned, when I’m literally so exhausted that I’m blowing out of my non existent asshole!

I support people one to one, which the public does not see. My inbox never stops and this is the way I like to help others and I have all the time in the world for those in need. I’ve spoken with some of the most brave and inspiring people and it’s an absolute pleasure. This role is far more rewarding than any paid 9-5 I’ve ever had. Yet blogging has started to make me a bit miserable. My idol Thaila Skye responded to my tweet a few days ago, and it really made me think. She said ‘there are far too many people ‘being’ advocates that the hard work gets drowned out’. I wasn’t sure if that meant me too, but since I have the 2nd largest UK following and am up there with Thaila and So Bad Ass, I’d hope not. I’m not ‘being’ an advocate I’m actively DOING advocacy. As I’ve said before, blogging does not automatically mean you are advocating. Advocacy goes far beyond offering your view on aspects of IBD/Ostomy life in my opinion, it’s about being there for patients, being out there representing them and working with or against the system to ensure better care. Right now I’m part of an outpatient programme trying to improve how IBD care is structured, I’m involved in 3 research projects, I overlook publications and give my views on if they correctly inform/represent, I’m doing a talk at an art exhibition that’s representing all people with a chronic illness, I’m planning an event with an ostomy company to fundraise and support younger ostomates and I’m getting topics out there that no one wants to touch. This is just part of my list and definitely not including my future plans….so do you now see why I got upset about the replicated image? The campaign may have been about all body types but I was there to represent US as ostomates, represent YOU in the hope of opening more channels to make bigger waves. However having another ostomate doing it instead, completely drowned out the hard work I put in to get there. Work that I do continually.

I believe some will see this as nothing but jealousy but I assure you it goes beyond anything as petty as that. Body positivity for some of us goes far beyond skin deep. I’ve seen people say that these ladies should be praised for being there and it doesn’t matter who did it. It matters to me because they don’t represent me. For me this campaign was about the trauma my body has been through. The PTSD I get when any Dr goes near my body, the fears of what I’ve faced, the medications that have destroyed my confidence, the sadness I have felt at every step, the look on others faces when my body changed and the fact that this body, flesh & bones that merely serve to hold our internal organs felt that ugly, broken and insignificant, that I wanted to not live in it anymore. I wanted to die.

So Maybe some CAN’T ever get why I’m not entirely ok with ‘well at least someone did it’…because most of them are lucky enough to have never been so sick and those that have, didn’t convey THIS body message. The message I had planned to discuss in relation to why I did the original shoot. When your body is broken, you question your mortality. To me my ostomy is a sign of how amazing this body can be and it wasn’t only about image but for me it was about functionality too.

I was shocked to receive comments questioning my upset and comments implying, that if I’m upset I must be doing advocacy for the wrong reasons. It’s NOT just about me personally but professionally. It’s not about simply going on TV, nor about getting praise. It’s about how watered down some of our work becomes, when an individual decides to do a one off campaign or article…usually on a whim! Patient experts are so valuable. In the US they are sponsored by Pharmaceutical companies and can be hired, to represent the masses and guide them through a rough system. It’s no different here yet we rarely get the money or credit we deserve. In my opinion it’s a special role just like any other full-time PAID job. Because US citizens have to pay for their care, the medical professionals give them an incredible amount of respect. This is because patients are directly hiring them & advocates can very quickly review any bad care and make it public knowledge. Patients look to advocates to guide them through the issues with insurance but also to translate info on the latest research and movements in the IBD/ostomy world. THIS is what I do on a UK level. So why as an advocate would I NOT be upset, that a patient appeared on national TV & wasted the opportunity to REALLY discuss ostomies & body confidence?! I believe it’s my job to care and be upset. As an individual…human being, it is also my place to be devastated that I worked hard and a photography business robbed me of a fantastic opportunity and experience.

Awareness is a cause, that I believe will get across better through quality and not quantity. Advocacy isn’t some fun that brings opportunities, nor is it only about sharing our stories. That is important, but it goes beyond that. It’s about inspiring many and pushing for change. Think about what happens when someone who doesn’t advocate has their story published in the paper? It’s inspiring to read and if it’s something you’ve never seen before, you may absorb the information. Now think about the kind of information that is included. The journos write what they want and what they think the reader will enjoy, and not always the correct facts. They only care about readership and too often that leads to sensationalism. They don’t have to care for the cause and without the person in the story caring about content )and then going out an working incredibly hard in conjunction with said story), it soon gets forgotten  This is why up until the Sun campaign, I had only agreed to do articles via my friends and local journalists. I trust them and they know how important this work is to me, so they include detail and discuss it with me before going to print. I haven’t not had the opportunities, I’ve just selected wisely! Others don’t always select wisely or they want to be in the paper for a photo opportunity (you can tell these one’s a mile off). So BAM…more misinformation out there for the public. A forgotten story and a wasted opportunity, much like the outcome of what was said on Loose Women today. I was messaged by more than one person, informing me that the ostomy topic was brushed over and ended with the view that having an ileostomy is no biggie & a cure for UC. An advocate wouldn’t have allowed this!

By saturating the media with misinformation, regular, decent advocacy work can get missed. When the public or IBD/Ostomy community spend all day sharing a sensationalised newspaper article, it’s time wasting in my opinion. What point is it when the article is poorly written and the subject cares nothing about awareness and only for their story? It may circulate repeatedly and new ostomates or diagnosed sufferers of IBD, may read the poor info and take it as gospel. Much like articles that do the rounds about miracle cures. 

The false hope sensationalised articles spread is deplorable. This is why I only read from certain sources and I urge that others do not share anything unless they know it’s FACT or the info is written correctly! Just because someone is in a bikini, doesn’t mean they are doing it for the community. I’ve heard about one individual that only featured in an awareness article, in the hope of getting a modelling/acting career. I have nothing against the ambition to model but don’t pull on heart strings and USE an important cause for your gain! That is so not my style! I love working with Vanilla Blush and I felt all silly and girly on the underwear shoot. It was a dream to try modelling but by no means have I ever sold my story, or my soul to a paper, just to get a gig. My local news approached me after the VB shoot and it was the first time I’d got giggly about being in my pants. I live on an island so was worried I might be recognised as the girl in the pink pants. It’s not often we have that kind of picture in the Sheppey Gazette 😉

I have turned down well paid opportunities, that could have given me a career because I won’t ever be a sell out. Kudos to anyone who shares their bag photos personally. I am always inspired by those who embrace their body or who share in the hope that it will boost confidence and empower them. Almost 100 people sent me pictures to tweet for the Loose Women campaign. That’s amazing! 

So what I believe is that IBD sufferers and ostomates should follow active advocates, charities and organisations, (US, Canadian and AUS ones too) to have access to the right info. Groups like IBD Superheroes are continually offering the latest info and I know they research before posting anything. GYBO & CCUK work together and you can follow the latest news via the CCUK website. Ostomy Connection and The Mighty share some great articles too, not just on physical but mental health too. You can also write for them yourself, so sign up and share your story, so it can reach the right people. Eakin have a blog and appreciate anyone who can write to share views on various topics. Clinimed also have many bloggers on their page and all is takes is an email to see if you can contribute. It may not be regular but they often have pieces drop out last minute. Who knows you may be great at it?!

It’s good to write pieces and have it edited by those in the know. Share your belly/bikini photos via an advocate, charity or organisation in the industry. Use media platforms, that have the platform to share it far and wide. If you were to do it via a national newspaper, ask their intentions, proofread their words and if unsure ask someone in the know to check it. Don’t just put any old shit out there, especially on TV!

I’ve rambled lots but I’ll repeat that my upset ISN’T ABOUT ME but more about established following, it’s about utilising the following I have built up through constant advocacy over the past 18 months. Utilising all big media platforms to raise correct awareness….together! Rather than starting new info blogs, use what already exists and publish via them. If it’s about the cause then that should suffice. If not then what is it really about? Just do a personal blog. I’d be quite happy to never speak about myself and share nothing but patient stories. In my opinion, this community needs more people to get behind advocates and help us to make big waves…not spread it thin & create little puddles. 

I really do believe we make our own opportunities and should be able to be proud of what we achieve in life. On a personal level I’m quite sensitive, even though you all see is my strength and confidence. All I want to do is help people but whilst being allowed to be honest. I dislike people that say things privately but won’t say them out loud or to people’s faces. ANYTHING I say in private about a subject or person, I would say to their face. So please, if you dislike my work, dislike me or misunderstand me, either say it honestly or just don’t follow what I do. I don’t like to see people being judgemental when you  have a choicd whether to read what *finger on lip pondering*. Hmmmm

I may not have been the first to blog but I am one of few UK advocates in this area. I have worked hard and more than proved myself to be up there with the best, whilst not compromising who I am. I have not imitated anyone because I’ll always give credit for my inspiration. There’s nothing worse than reading something that’s not in that person’s style of phrasing, but YOURS. 

I adore the following that I have built. So many wonderful people message me, support me and listen. As a face and voice of a big community, you put yourself out there because you want to – but not to be abused, misunderstood nor copied. I’m incredibly proud of all I’ve achieved so far and this does not make me a big head, it simply means I have confidence in my ability. As long as those that ask for my support, those that I respect in the industry/community, those that hire me & those that believe in me, are happy with me…then I’m succeeding and will ignore petty negativity. 

I admire anyone who is out there actively advocating for patients because it’s hard work. If you give your time to visiting patients, public speaking, open days, conferences, run online support groups, support your local IBD/ostomy department, volunteer & support charities, do events and more (all whilst sick, maybe bringing up kids & trying to have a life), then you have my utmost respect!

I also admire those that tell their stories. Sharing your journey and views on ostomy life/products, gives other patients something to relate to. It’s not only vital that we have reputably sourced information out there but info that connects us all as people. We ALL hurt, we have ALL been through something really tough. We ALL need to stick together…but in addition we must ALL have zero tolerance on hatred. We must utilise the means to get word out there but do so wisely and use the best channels where possible. We must continue to use our own media pages to share our stories amongst family and friends because they need to understand too. We must be united!

I’m just about done with negativity and misunderstanding. I’m fighting my own body, seeing petty bullying and drama in the online groups, cliques formin, whilst all the time I’m trying to do something good and not be part of the negativity. Yet people insist on cutting ME down and not those that darken our community. What is this, a playground of popularity Community drama, bullying and sensationalism needs to stop. Admins of groups must be respectable and have decent guidelines to prevent drama & bullying. Friendships should not come into it. If someone is a tool, a bully or a troll…then warn or remove them. It’s not a nice place for everyone else otherwise. If the admin are the problem, then find another group. There are plenty out there and it doesn’t take much to ask for a recommended one. I’ll write about this once my website it complete. So take note of who brightens your community, because that takes a lot when some are so poorly. I see the sickest people, do the most encouraging by far. Life is too short and they only wish to be happy.

I do hope I can go back to being myself amd sharing my ambition and passion, without people misunderstanding me & talking badly about me. It takes very little to offer some appreciation by supporting your advocates. I may not be employed full-time, or have a qualification in the role. I don’t even have a boss to say ‘hey here’s your job title description’, but do you know what…I AM an advocate because I’ve worked bloody hard to be one and all off my own back. I did it because I want every patient to feel they can live happily, confidently and peacefully with an ostomy, whilst knowing where good support, info & medical professionals can be found. 

I lived too long in misery, thinking that it was just the way the system & society is. Well now I know different and can’t sit by and knowingly see someone go through what I did. Does caring so much make me a good person…or a mug? I’ve been on the verge of quitting and going back to my easy life because quite frankly the lack of support from some over this LW photo, has made me feel unappreciated. I’d feel a huge void if I quit but it’s not like I’d lose money! I’m beginning to wonder if all this effort is admirable or just stupid?

Tips to finding credible sources.

Bruised

It’s ok to not be ok, right? 

Well I’m going to fill you in on the past few months. Please note I will be seeking counselling, to discuss the issues surrounding my Mothers drinking & other aspects of my past. For now I am happy to share my present with you, as I’ve always tried to be transparent about my medical, mental & sometimes personal issues, in the hope it will raise awareness.

So where do I begin? It really feels like the past few months have been a dramatic soap episode, left on repeat. I’ve had more stressful things to deal with, than a soap opera drama queen!

Alongside a very long winded period of change and stress for my partner at work, my Mother in law has been through her own period of change and both are anxious people who HATE change. They are the key support that I have in my life and whilst trying to make a conscious effort to do things on my own and support them for once, I seem to have ended up more like Frank Spencer in a pile of mess, rocking in the corner! My body feels beaten inside and my mind is in turmoil. I’m bruised all over. 

I’ve had joint & tendon pain for months now, caused by Psoriatic Arthritis. I’m on a new drug (drug no 10 in 12 years for autoimmune issues), a drug that’s meant to be helping, yet it’s not. I also have side effects to deal with and this one seems to be adding to the extreme fatigue I’m so sadly used to. On top of this my coil dislodged itself. No big deal to many but this is a BIG deal for someone with hormone issues, who flares cyclically (meaning my inflammation is set off by hormone changes during my menstrual cycle). It also sets off a condition called PMDD. I’m not yet officially diagnosed but am in no doubt about it and have discussed my hormone issues with my Gynaecologist. To explain, it’s like a hideous extreme version of PMS. In fact that doesn’t do it justice. I’ll explain my symptoms. 

I spend 2 weeks in bed, basically going mad! I have flu like symptoms, increased pain from my autoimmune conditions and fatigue that means I can sleep around the clock with no relief. I lay there hating the world, not wanting to be near anyone & wanting to just get out of my head or die! This isn’t an exaggeration and it’s really fucking scary. So scary that I knew I couldn’t face another cycle and begged to get a new coil fitted. I sobbed in my fiancés arms and told him that if another cycle comes, I don’t know what I’ll do. The whole thing frightens me so very much! 

Then DURING feeling like this I had to fight to get it resolved. As many know, the system is pretty poor when it comes to getting anything done fast. I don’t usually mind waiting 12 weeks for referrals or a week to see a GP, however if it’s urgent but NOT an A&E type emergency then the chances are YOU’RE SCREWED. 

PMDD is serious. I’ve realised this and accepted instantly that if I didn’t advocate for myself, I could end up dead. I’m a fairly stable person, with depression that stems only from being sick for so long. I have only ever felt like I’ve wanted out of this world once before, when I’d been left merely existing on steroids for 3 years, by my previous Gastroenterologist. 

The hormone sensitivity I have, means that my serotonin levels are also affected and my whole mind & body is out of balance but I can’t help it. It’s like I don’t even know who I am and the more I try to get out of my head, the worse it gets. It’s opened my eyes to the severity of these imbalances and why some take their lives due to certain depression & hormone changing medications.

Anyway I hit the system head on, ready to fight for an appointment at the sexual health clinic but…was reduced to tears by the desk staff. As expected the receptionists just couldn’t grasp why I needed an emergency coil, nor why my GP surgery didn’t have the staff to do it or why using a consultant gynaecologists time was just ridiculous! I mean if I wanted emergency contraception then I could just take the pill or use condoms right?! WRONG! It’s no fun standing in a room full of people, having to explain why I cannot have any other contraception and that it wasn’t about having protected sex, it was about stopping myself from fucking cracking!!! However I wasn’t their concern and whilst questioning the typical nonsensical processes put in by certain NHS departments, I snapped. The advocate in me kicked in and I got angry & got my own way! I turned a 6 week wait, into a 1 DAY wait. Yup…this is why I’m a good advocate!

I returned home hoping things would improve, knowing that I wouldn’t be in bed for the following week, for my body to then bleed for 3 weeks ERGHHHHH. I must add that this is affecting me on top of my arthritis inflammation, bursitis in my hip, my battle against dehydration which is causing major side effects, chronic fatigue, nausea & the growing nutrient deficiencies I have from what looks like malabsorption…but hey I just sit at home all day leisurely *wink*.

Last week I was really struggling, and for some reason just couldn’t sleep. I was nauseas, fatigued, breathless, dizzy and fed up! Then come Thurs eve as I ate my dinner, I was instantly hit by crippling abdominal pain. I was bent double, whilst my bowel bloated and my stoma grew to twice it’s size. It felt hot to touch and incredibly sore. Please no not a blockage!!!

Blockages can be common amongst those with a stoma. Internal adhesions, possible bowel twists or strictures (narrowing’s), can lead to food not passing through the bowel correctly. They can also be caused by food not breaking down and as this is common with those who have an ileostomy, we must be selective with certain foods and CHEW like our lives depend on it. Throughout the past few weeks I had been grabbing food as merely a source to survive. I had no appetite and no enjoyment in eating. So I was lazy and ate things that were risky, especially if consumed on consecutive days. I also didn’t chew well enough. Partly laziness and partly due to the awful inflammation I had in my jaw. 

Sadly Psoriatic Arthritis affects the TMJ (Tempro Manibular Joint). It not only makes the joint swell but causes pain throughout the area due to nerves & sinuses all being packed in. It causes me headaches and I get very sore ears & throat. I really didn’t want to eat whilst it was inflamed and the added nausea I had, added to my troubles.

During this partial blockage, I was passing some liquid output (faeces) but nothing fibrous. I retreated to my safe place – the bath, and proceeded to massage around my stoma and let the hot water soothe me. I drank copious amounts of Pepsi, because the carbonated aspect helps to add pressure into the bowel, in the hope of moving the blockage. Being my first partial blockage, I found myself genuinely anxious, even though I had the knowledge to deal with it. I felt the PTSD creeping in and the fear I had whenever I would be stuck in the bathroom for 2-3 hours at a time, passing blood and mucous from my inflamed rectum. The pain of IBD cramping is hard to describe but some have stated it is worse than labour contractions; I concur. The cramps during a blockage are much the same, with the added fear that if it won’t pass through the stoma, that it will come back the other way!

I stubbornly refused to go to hospital and was adamant I would ride it out at home. I mean if the many people I support, plus members of my support group can handle it, then I bloody well should! The members reassured me when I posted about my situation in the group ‘Making Ostomies Cool’ but I was right back there in my head, when I had UC. I felt alone, so very, very alone and feared I may have caused some damage to my otherwise perfect stoma. I also felt idiotic. I know better! I know what can cause blockages, I advise people regularly…yet I majorly screwed up due to not caring enough about my body. I still don’t care enough right now. 

The blockage took a good 48 hours to pass, with the culprit being hard pieces of coconut, banana & raisin skins from a bowl of Fruit n Fibre. What a complete idiot! What ostomate eats a big bowl of HARD fibre and doesn’t chew?! Any how, it passed and I’ve spent the past 5 days still recovering. My bowel has felt bruised, my stoma is bruised and my ego is bruised. Now with only 2 days until the ball, I’m feeling deflated, unmotivated, full of lurghi, sore and after finding out yesterday that my folate/B12 is low, I’m hopeful my gastro will look at my weight loss & deficiency and confirm I have absorption issues. I’m certain I need nutritional supplement shakes and plenty of rest. I’m starting to wish I’d just gone to hospital during my blockage in the hope of admission to get some bloody care, treatment & decent rest. I’m done with feeling shit.

Add the drama of the Loose Women campaign and how upset I’ve been, I’m feeling a bit sorry for myself. I’m hoping that seeing some of my great friends, followers & inspirational people on Sat, will give me the perk I need!

💋

The fatigue demon

Tired, exhausted, shattered, fatigued, drained, sleepy, drowsy, weary, worn out, sapped, spent, pooped…knackered! These are just a selection of words describing the feeling we all experience, when we have reached our energy limit and need to rest. However, none of these words aptly describe chronic fatigue or the feeling of doing absolutely nothing, yet not having even an iota of strength in your body.

I’ve now been plagued by chronic fatigue for 12 years. I’m not talking about the CFS that is now the modern term for the condition ME (which I’ll add I don’t believe should be called CFS. Those with M.E would add it is much more). I am talking about the fatigue that accompanies a varied range of chronic illnesses and is a debilitating side effect all of its own.

What if I told you that I literally sat drinking tea at my support group Thurs morning (The Sheppey Ostomy Group, Kent) spoke with members and did little more. Then I came home to rest on the sofa whilst my son played on the tablet…yet I felt as though I’d not slept for a week, had ran marathons by day and danced in clubs by night! I could say I felt as though I’d never seen the backs of my eyelids, like I’ve worked a 60 hour week without a break, like I’ve got 15 kids to look after, like I should have achieved so much.. .yet I’d done nothing! No matter how hard or how much I attempt to describe chronic fatigue, I know that those who do not live this nightmare will NEVER get it. All the time you have your own tiredness, you’ll will never truly be able to put yourself in the shoes of someone with severe fatigue. This is because you already have your own assumptions and tiredness to compare.

I could describe many things that sound exhausting to those who do not suffer with chronic fatigue, yet I know that none of these do it justice. I feel that maybe words which spawn much deeper emotion & anguish, would fair better than the dictionaries terms for fatigue. What if I told you that chronic fatigue is torture, it’s agonising, it’s misery, it’s a living nightmare, much like seeing your life dangled in front of your face and watching it go up in flames! It’s like chasing your true self but never catching up. An endless vortex of isolation, fog, confusion, trying to reach the person you know you are but being denied by an invisible demon that you’ll never defeat.

There are ancient tales and beliefs about the feeling we now know as sleep paralysis, whereby a hag, demon or ghostly figure would enter your room and sit on your chest, stiffling your ability to breathe or move. The hag would prevent movement but the demon was slightly more evil. This demon would often be depicted as a succubus (female form) or incubus (male form) and some might attempt to sexually abuse the sleeper and literally suck the life from the victim. As extreme as it sounds, this is how I see chronic fatigue and even sleep itself. Fatigue prevents me moving, breathing freely and rapes my life of the joy I could be experiencing. It renders me paralysed and vulnerable. I also experience sleep paralysis itself; often. This may be a side effect of the palliative level pain relief I am on, or because I am often so fatigued yet too wired to shut off. When sleep does come, it can be full of vivid dreams and often the experience of being paralysed during an activity. Whether I be awake or asleep, I feel tortured of late.

The Nightmare by Henry Fuseli. This painting is a wonderful depiction, maybe even an allegorical representation of the feeling of sleep paralysis. For more info on this interesting topic, read here.

http://www.tate.org.uk/whats-on/tate-britain/exhibition/gothic-nightmares-fuseli-blake-and-romantic-imagination/gothic

My body and the body of those with severe autoimmune conditions, spend their days in conflict with themselves. I used to think that my immune system was broken, dysfunctional yet it is in fact over functional. It does it’s job that little bit too well. Here is a description of A.I conditions. Some less debilitating than others.

http://www.webmd.com/a-to-z-guides/autoimmune-diseases

If you are unfortunate to have more than one, you will be even more troubled by the effects. I personally have both Inflammatory Arthritis and Inflammatory Bowel Disease. I had my Colon and Rectum removed in 2015, after 10 horrible years dealing with the effects of Ulcerative Colitis. Although I have had my large bowel removed, I still experience the extra manifestations of the disease and they are also mimicked by the Psoriatic Arthritis. Psoriatic Arthritis isn’t to be mistaken with the skin condition Psoriasis. Although those with Psoriasis can develop PsA, it is a condition in it’s own right and can have long term destructive effects on your joints.

Of all the effects experienced from having these conditions, I would say chronic fatigue is the one you never truly learn to manage. I won’t say it detracts from the destruction and severity of the others but it is by far the one that steals the biggest part of me. You can medicate pain to loosen it’s grip, you can treat the inflammation of the disease in the hope of easing it or inducing remission, you can receive supplements or infusions for deficiencies caused by the disease(s) and although these efforts are not always successful, they are at least something. With chronic fatigue, there is nothing.

I could sleep for a day, week, month and it wouldn’t change a thing. I could adjust my diet and be the greenest, veganist, paleoist, gluten freeist (sorry making words up!) person alive, yet it wouldn’t change a thing. I could practice mindfulness, try snake oils, talk to a God…NOTHING would change things. These things may serve my mental health but not eradicate this kind of fatigue.

Now some may and will likely question me, but I must stress that what appears to work for one person will not work for another. I am also talking from experience and have tried many variations of diet, I have had many supplements, infusions, snake oils and I feel like I sleep my life away; yet nothing changes. I can go from spending a whole day out with my family enjoying the wonderful life I have, yet crash at any moment. That moment will always chip another part of my spirit away. In that moment I know that no matter what I try, I WILL go down and I will STAY down until my body decides otherwise.

It is the process of my immune system attacking my body, that triggers the fatigue. It is incredibly exhausting fighting yourself day in, day out. Here is an illustration I’ve always found amusing…

Some refer to their fatigue in terms of spoons. The ‘Spoon Theory’ was created by Christine Miserandino and has been adopted globally, as a metaphor for our energy levels with chronic fatigue/illness. I myself have used this many times, to explain why I can or cannot make an arranged event or appointment. Those with chronic illness often find that they begin the day with less or minus spoons, in comparison to someone healthy. This representation also allows us to manage our fatigue and work out how many spoons we have and when best to use them. For a full description, visit Christine’s page here.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Illustration by Colitis Ninja of someone desperate for spoons but fatigue or illness is holding them back. http://www.colitisninja.com

In summary I would like to say that although my life is blighted by chronic fatigue, it is also more enriched with gratitude and a sense of ‘Carpe Diem’ – or seize the day to those who don’t know. I have learned that I cannot prevent nor stop my fatigue, so in turn I do not waste my time fighting it. I have learned to stop justifying myself to others and do what is right for my body and mind. The activity or appointment I may cancel, can be rescheduled. Anything outside of my health or family can wait. I have an appreciation of the good days and a real grasp on priorities. So for anyone new to chronic illness or chronic fatigue, this would be my advice to you…rest when you need to, sleep when you want to, rearrange when you can and apologise never!

Shell 💋

Stoma product cuts – brief overview

The common topic at the moment is CCG cuts (still) and the lack of support for hernia prevention over cure. I have at least 60% of members in my local support group with a hernia and a new member came today just to discuss this. It saddens me that financial ties are preventing key care for not only local ostomates of mine but nationwide.

I allowed myself to comment on a debate yesterday, on the Stomawise private group. Many are receiving letters still (the initiative began over a year ago) banning various accessories from prescriptions. I offered the facts and my views which I will put here also.

1. These letters are not confrontational and explain the facts well. It is not personal.

2. This method of contact may seem like a blanket approach, however it means anyone wanting to question their scripts can get in touch with their stoma nurse (some may not have done so for years) and reassess what is CLINICALLY necessary. It’s the easiest way to audit everybody & provide what you need.

3) GPs are not trained like SNs and so please do not feel they are punishing anyone. It is best for the nurses to appeal on your behalf and inform the GPs of your needs and why.

4) It has been proven that long term use of some accessories isn’t necessary BUT by seeing your nurse and GP, you can query items and get them reinstated if absolutely vital.

5) Ostomy underwear (non supportive) isn’t deemed a necessity. I’m on the fence about this (for confidence reasons) but can say that it’s inexpensive and we were buying our underwear before surgery. This will be very individual and your GP may support your views & needs. I feel that the hernia support wear IS a necessity for prevention as well as maintenance/protection of existing hernias. Again discuss with your nurse & GP. You are currently entitled to 3 pieces of support wear per annum.

6) I believe many will want to keep their sprays, pastes, powders, rings etc and so this again can be discussed with your care providers. Where possible they ask you to try a cheaper brand and I think that’s a small ask considering the current state of our NHS.

7) I do NOT feel that lubricants or deodorisers will ever be a necessity and things like baby oil, essential oils, tic tacs and air fresheners are quite sufficient. I understand those with COPD may find the ostomy brands better but again you must argue this in clinical terms. Not anxiety or confidence sadly. Our poop smells and that’s a fact of life. If you still don’t see this, I urge you to look at the online drugs tariff and look at just how much extra it costs our service.

http://www.nhsbsa.nhs.uk/PrescriptionServices/4940.aspx
8) Just be mindful of ordering only when required and only enough for your needs. Samples are a great way of keeping spare sprays, wipes, powders, pastes etc and so I advise this for travel supplies and back ups.

9) Stoma nurses are on your side and don’t make these decisions! They are being pressured as much as us. The local care commissioning groups are looking at a rise in costs and not taking all elements into account (more diagnosed conditions resulting in ostomy surgery, premature ostomate survival & population living longer), therefore we sadly see this approach. The mistakes of few, affect the accessibility of others. I disagree with the sense of entitlement I too often see also. I for one could never have paid enough tax to cover my medical care & feel grateful that we are not in the current situation of our US ostomates. Be grateful for your care.

10) We will not have to use generic bag choices, so do not panic.

Patience…patient

6pm July 30th, my head was pounding. I began to wake, in a morphine haze and found it hard to adjust to my surroundings. I searched for the comfort of my partners touch but alas it was not to be found. I was in H bay of the Frederick Salmon ward, St.Marks Hospital, Harrow. My partner had gone home the evening before, after I woke from my major operation.

It was a quiet ward with a lingering, pungent smell that I just couldn’t place. (I would later learn it would be the odour of emptying an ostomy bag). I was wheeled into the central bay on one side of the ward, with a lady either side of me and two opposite. Smiles were exchanged briefly, through sad, tired and pained faces. It appeared to be as much as we could muster at this time. I was left by the porters in my home for the next week and took everything in.

Prior to moving here, I had spent the past 24hrs in a high dependency unit. I had been through 8 hours of surgery to remove my entire colon and rectum. My surgery was done via a single incision and so the surgery had taken a bit longer than usual. I had woken from my anaesthetic, feeling excited and eager to see my stoma. I was however too drugged up at this stage to do anything.

I did however wake to find Nurses and Doctors fussing around me and a button thrust into my hands. I was told that this was my morphine and I was to press it when needed. The first button I was given didn’t seem to be working and so I requested it be changed. Now I couldn’t get the hang of the thing and my thumb was getting very sore. The nurse during my pre op had advised me that I should keep pressing the button, to ensure that if I dozed off I would still get a dose. So this is what I did…

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‘Miss Lawes, can I ask that you stop pressing your button so often’, requested the nurse. ‘Erm…I’m So sorry I was told to keep doing so to ensure I get the dose.  Am I doing it wrong?’ I asked, somewhat embarrassed. The nurse chuckled, ‘I understand, however the dose only releases every 5 minutes and all you need to do is press it at least once between each shot and it will set it. Listen for the click of course to confirm’. ‘Thank you so much and I’m sorry for misunderstanding, you must think I’m crazy’, I giggled. ‘Well Miss Lawes, you’ve been here 2 hours and pressed the button over 300 times, with just 32 doses being given. We were wondering if you were ok?’, she said with smiling eyes. Oh how I giggled! I felt very silly and when my partner arrived 5 minutes later, I had to be woken again. That morphine was good stuff!!!

So back to H ward. I had been transported to my ward and woken to find that my fluids had not been hooked up and I was beginning to feel very unwell. I called the nurse for her to hang the bag up, to which she replied ‘I’m already late finishing my shift, you’ll need to ask the next staff nurse’. I was too weak and in too much pain to question her, as she walked away in a hurry. Later the Matron would speak with me and ensure that it would not happen again. The nurse had been a French agency nurse and her bedside manner left much to be desired.

I lay there quietly, not wanting to disturb the strangers on my ward and felt the pain increase and the dehydration setting in. As the minutes ticked past, it was becoming unbearable and the gravity of what I’d been through in the past 24 hours had started to sink in. Whether it was genuine fear or the drugs, I felt incredibly overwhelmed and began to sob hard. I tried to stay quiet, so as not to disturb my neighbours but they would notice regardless of my attempts.

I felt a warm hand on my shoulder and a voice saying ‘oh sweetheart you’re allowed to feel emotional, you’ve been through a big operation. I’m Christine and the other ladies are Lily and Caroline (I can’t recall the other ladies name), and we are all here if you need anything’. I felt instantly comforted and tried to sit, to greet my neighbours. These ladies would be of much comfort over the following days.

Later that afternoon, I decided to take a peak at my new stoma. I had waited a long time for this moment and had put so much hope into this operation. I pulled the covers back and my gown up and took a good look. I wasn’t shocked in any way. I had requested this surgery, after 10 years of suffering with Ulcerative Colitis and too many failed drugs to mention. This was to be a new beginning. I quietly recited to myself ‘I don’t have UC anymore, I don’t have UC anymore’, and again began to cry. Words don’t do this moment justice!

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The next few days I would progress better than I expected and the ladies on my ward would make a huge impact on my recovery. We talked at length about our reasons for our stay and all found common ground in our journeys.

Lily was in her early 30s like me and had been through a real tough time, suffering with severe endometriosis that had destroyed much of her bowel functionality and chances of becoming a parent. She was on TPN tube feeding and no closer to getting better or home. She was married and a good couple of hours from home like myself, so our company was important to her. She isn’t on social media and is quite private with regards to her struggles and I respect that very much still.

Caroline used to be a Police Officer and was largely involved in the Utilitarianism and a huge Celebrity Big Brother fan. She was married with 2 beautiful daughters, one a Barrister and the other a nomadic living the simple life in S.Africa and doted on her only granddaughter. Caroline was a kind soul and had a huge effect on me during the few days we knew each other. She had come in to have surgery due to bowel cancer. She informed me that all hadn’t gone to plan and they had found primary cancer on her liver and she’d woken with a colostomy. She was finding it hard to adjust and found my positive attitude, really helpful. For her an ostomy wasn’t her choice, for me it was and she could appreciate the positive life changing properties of having one.

Caroline worked like a trojan horse to get home and engaged in her daily strolls and gentle physio. We were all incredibly sad but pleased she could go home to her family. I kept in touch online and enjoyed hearing her progress. She had a stair lift fitted and joked about her adversity daily. She was so inspiring.

Just 6 weeks after we met, Caroline decided to seek respite in a hospice. It would be here she would spend her last few days. Laying in the sun with her devoted husband Jim and still being grateful for life’s small beauties. I was very sad to hear of her passing. Her humanitarian views and big heart, inspired me more than I would realise and ultimately it would be Caroline’s encouragement and wise words, that would inspire the birth of Stoma in a Teacup.

Now let’s talk about Christine. Christine was in her 70s and a published poet. This lady was an absolute diamond who kept us all sane with her witty remarks and tantalising conversations about politics, history, feminism, art and poetry. We had many common interests and we found ourselves engaged in interesting conversation most days.

Christine appeared a very strong individual. She joked and smiled to make those around her feel warmth, however it transpired that she had nursed her dying partner just years prior and struggled with loneliness. There was no doubt she had many who cared for her but that one person who would be most engaged with her and keep her fire burning, was no longer with her. I encouraged her to talk about her partner and tell me all about their adventures, interests and discrimination at coming out as gay many years ago. I realised how lucky I had been, to be open about my sexuality in 2003 without much fear. Discrimination is of course still around today but it’s far removed from the stories Christine could tell me. Being secretive was the best way to be it seemed.

Now Christine amusingly called herself the ‘faker’. We were all in for major bowel conditions and she was in due to a rectal prolapse. She believed herself to be unworthy of sympathy, amongst all of us very broken ladies. I never saw it that way and we offered her much comfort during healing and all waited with bated breath for her to pass her first stool post op! She found my openness about poop and bowels quite refreshing and I believe it alleviated much of her embarrassment.

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One particular day I was feeling quite down. I was missing my family, so Christine wrote me a poem and I will keep it forever more. I remind myself of these ladies often and it gives me the drive I need to stay positive and chase my goals. They were all big supporters of my goals and believed I’d do a good job of raising awareness and supporting sufferers like myself. Caroline in fact said it was my destiny.

Christine went home the day before me and we stayed in touch via email. Lily was to stay in hospital a bit longer and I left 6 days after my surgery. We keep in touch via text. She now has a peg and is doing ok. As for Caroline, I think of her often and like to follow her daughter’s incredible work with immigrants. She fights for those with little voice and I admire this so much!

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Then there’s me, still unwell but far knowledgeable about everything and incredibly grateful for my time with these women. Some people touch your life and you see things so differently. I will continue supporting those in need and remember Lily’s sadness, Caroline’s fear and Christine’s loneliness and try my best to help anyone feeling these emotions too. I will also remember their big hearts too.

I’d like to share my poem with you. I hope that if anyone is in hospital now, that this will make you smile like it did me.

Patient

Here where night never falls 

but vague dusk under the ceiling’s moon.

Listen, as these slow breaths

fill the space like darkness.

Pain tunes its instruments

precisely, counts its bars of rest.

Observes its cue to enter

piano or fortissimo.

Be patient, says the moon

outside, while the squishing tress

Free under the clouds repeat

be patient, patient, patient…

Body Check from Coloplast – Stoma in a Teacup review

Disclaimer: All opinions expressed here are my own. I was not sponsored or endorsed to do this review.

Today I’ve finally found a moment to review both an online facility for ostomates AND a product…hurrah I hear you shout! I shall be writing some more reviews later this week.

Firstly I want to discuss the Body Check from Coloplast. Here is the link.

http://coloplast.to/BodyCheck_FB_Org2
It’s no secret that I’m a big fan of Coloplast. I use a range of their Brava accessories (barrier spray, powder and protective seals) and find the company to be not only forward thinking with their products, but an incredibly well structured and positive company. They are both helpful and supportive of their customers but they encourage and want the best for their staff too. This is equally important to me as a customer, because the ‘bag business’ can appear very competitive at times. 

​Now back to the Body Check! I think it’s a really simple process, created to help those who are unsure of the best bag for them and also those who either dislike or don’t have regular contact with a stoma nurse.

*I would however advise that you always discuss your options with an SCN*

Body Check, helps to log the varying physical areas that contribute to your product needs and choices. I found the facility easy to navigate and pretty self explanatory. The Coloplast website states, that if you ‘Take just 5 minutes to complete the Body Check, we’ll give you some guidance on ostomy appliances that may be better suited to your individual body shape’ and that’s basically what it does!

I went through the process twice, to see the variation of questions and results and think it’s a handy little tool. My only advice is if you have an ileostomy and have quite thick output, still choose ‘liquid’ in the options. This will ensure that drainable bag choices come up. It uses the ‘thick output’ option to determine if you have a colostomy or use closed bags. Maybe another or additional question such as, ‘what kind of ostomy do you have’ would have been clearer. 

That aside, I think it’s worth giving it a try just to see if you’d benefit from any of Coloplast’s products. It’s  clear to see that Coloplast have taken every aspect of bag wear into consideration, when creating and producing their innovative designs. I just wish I could wear the Sensura Mio myself but my skin came up in a rash. I adore the bag design itself and I don’t doubt the research team are ironing out any minor problems as I type!

Here are screenshots of my 1st attempt on the Body Check. You can see my choices in the last screenshot and the advice given. Once completed, you can save or print your profile and opt for samples to be sent to you.

Now go give it a try yourself and if you have any questions, you can also contact the CP team via email, webchat or phone. They also offer Coloplast care as a means of regular communication via email. Through here, you can log how you are feeling and managing your ostomy monthly. If anyone is interested, I will review this also.

Details for both Body Check and Coloplast Care can be found on their website and Facebook page.

Grieving chronic illness

After my recent post where I briefly touched on this topic, I felt I wanted to go into more detail. This is an area I have studied lots over the past 10 years and have experienced through various experiences in my life. Some being death, alcoholism of a loved one and my illnesses.

This process can be applied to any situation where you need to reach acceptance and being diagnosed with chronic illness(es), is a big one. So many struggle through these 5 stages (denial, anger, bargaining, depression and acceptance) and put pressure on themselves to be instantly ‘ok’ with what the future potentially brings. Well as the future is not set in stone, neither will your grief be. Grief is not linear, nor is healing.

You may find you reach a great place of acceptance and no longer carry anger. However a new diagnosis, a flare, a comment from a stranger can put you right back to the beginning. Yes you’ll be more aware of the process but that doesn’t make it any easier. Being chronically sick, is very much like losing a loved one. Except that loved one is you! You mourn your former self and the life you lived, plus the life you envisaged you’d have. You bargain with with ‘what if’s’ and torment yourself further.

I was just 21 when diagnosed with UC but had been suffering for 2 years prior to this. I had 2 years to begin adjusting to the diagnosis, yet I point blank denied what was happening to me. I carried on partying, not sleeping enough and I began blaming external issues for not excelling in my career, or finding it hard to get up in the morning. My attitude was awful & as I started to reach the anger stage, I spent a long time there. This affected my relationships and left me incredibly anxious and depressed.

For me this stage is one I have always found hard to get through. When my parents drinking hugely affected me growing up, I spent the best part of my teenage years, twenties and even up until a few years ago being angry. I believe that anger is often coupled with a lack of control. I was angry over my parents drinking, because there was absolutely nothing I could do to control it. I couldn’t move house or hide from what was around me. Similarly with my diagnosis, I found myself faced with a situation I had zero control over. Eventually I learned that I could make informed choices but only after fighting for my rights to those choices.

I also realised that by following a set of rules, I could ease both the stages of grief & anger, to realise acceptance wasn’t far. This set of rules I gratefully learned from Alateen (children/teenagers of alcholics, support group). This set of rules is known as a prayer to many but I am not religious, so adapt it to suit me.

‘Grant me the SERENITY, to accept the things I cannot change, COURAGE to change the things I can and the WISDOM to know the difference’.

This for me has been key to my survival! I realised that all I could do was TRY to change what I could, be the best I can be as this person with chronic conditions and try to accept it that way…and move on. By dwelling on the fact, that I could no longer be who I was before, nor would my future be as I had planned; I was only causing myself grief. By being angry at the lack of control I had over the situation, I was only hurting myself and if I only used my knowledge and strength to work on this, I could discover the new, better me. That’s courage through wisdom!

This is not to say that I don’t go through these stages in phases. Added diagnosis, flares & raised expectations are often what lead to my downfall. Depression is a stage that seems to hover over me like a cloud. It never truly goes away but some days are brighter than others. It can be distant on a sunny day but as the pain or situation reaches a climax, the grey rain clouds come over and empty themselves on my soul. I continue to grow and work through this stage. I bounce between depression & acceptance almost monthly.

I have also learned a valuable lesson and that is, that I can only rely on those who are consistent in my life. It’s hard because it can make your circle very small but it’s vital to coping and your mental wellbeing. Raised hopes & expectation will only lead to further heartache and it’s often not always family that will be your biggest support. Luckily my immediate family are amazing but I have zero help from extended family. My extended family are my support group members & spoonie friends.

Guilt is the other area that all who live with chronic illness face. We guilt ourselves over our parenting, our careers i.e. if we can or can’t work, our friendships and relationships. We then judge our worth based on this. We shouldn’t! Our illnesses do not have to define us negatively. Being sick has given me a greater sense of empathy, gratitude and the will to do right by others. I may well have continued on a selfish path but my illnesses have made me humble and giving.

Before I was sick I had a path planned for me & I’d do whatever I had to to get there. I was mad at others for my unhappiness & then my illness. I hated conforming to office life once I got there and never fitted in. So it wasn’t all I’d hoped it would be. Yet now I have chosen to be a stay at home Mum & run a local support group, online group, blog & support patients one to one. I now know I am worth so much more because my life is precious and not for conforming, blaming others or holding onto anger. I can do good in the world and THAT is just a fraction of my worth!

I soon realised after the birth of my children, that I wanted to show them there is strength to be found through adversity. I’m not after some martyr story but to show them that by keeping good company, being kind, loved & empowering themselves with knowledge, that they too can be strong enough to both offer support & receive it if necessary. It is not weakness to ask for help, it is not attention seeking to educate others about your condition(s), it is not giving up if you embrace a bad day…it is following those rules and knowing what you can and can’t control or change.
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Chronically unemployed!

​A friend shared the link below and I must confess it struck a cord, so much so I had a good cry. I often hide how not working makes me feel, it’s easier than dreaming that one day I’ll be able to have a full or part time paid job. 

https://themighty.com/2016/12/chronic-pain-judge-me-for-not-working/

Personally I worked for over 7 years sick and it was one of the hardest things to do. Not only feeling like I could crawl through the office door daily but the response of a few colleagues over the years, pretty much left me miserable and traumatised. Retail didn’t understand, office colleagues had no empathy and pub hours don’t yield for sickness. Varied roles just didn’t agree with my UC.

Comments over the years like ‘you’ve got it forever so just get on with it’, ‘suck it up’ or ‘well I’ve had this poxy cold for 2 wks and haven’t complained’ made me come home and cry. It was even worse when someone would compare my suffering to that of others THEY deemed as ‘worse off’. There’s NOTHING worse than your personal battle of suffering daily, forever…nothing. It’s not fair to compare.

I happily left employment officially in 2014 after completing my maternity leave. Removing the mental battle was the best choice for me. For someone that ‘didn’t look sick’, I had my Colon removed only a year after leaving employment…so I really wasn’t sick was I?! 

Regardless of any bitterness I carry, I’m definitely happy to not be grilled by HR or managers, who have made me feel like a liar over the years. To those that listened and got me the support I needed, thank you. To those that said I was ‘unreliable’, or ‘no different from anyone else’ F*CK YOU! I’ve wanted to say that for years 😊 

I truly hope that ALL my past employers do their homework and adhere to the 2010 Disability Discrimination Act and understand how severe IBD is and see the overall impact chronic illness can have. I offered enough info and insight into the illness, they’d be stupid not to! If they don’t…I just might be the advocate behind THAT employee wanting advice, so they better be ready! 

Sadly I see many IBD sufferers struggling with understanding from their employees. This needs to change. For anyone needing advice on this subject, go to the links below. There is advice for students too on the CCUK website.

https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/employment-ibd-a-guide-for-employers
https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/employment-ibd-a-guide-for-employees

Sadly we struggle on what little money I receive from child tax credit and I only began receiving PIP late last year, after a 2 year slog. It’s been a huge strain on my partner and a huge hit to my ego. I took pride in my ability to problem solve and work fast and efficiently. I struggle to remember what I did 5 minutes ago now. I hate not being able to provide for my family and dislike it technically being James’ money. He actually likes me being at home but of course if I could and wanted to work, he’d support me.

Not working comes with its own hardship. I get lonely, bored, struggle with my toddler and feel useless. This is one reason I started blogging and using my time to support others. It takes commitment but on my terms. If I’m sick, I can rest. Being sick IS a job itself, as perfectly put in the article above. It’s even more so with children who rely on you. 

Maybe one day I’ll achieve my career dreams but for now I accept that it may never happen. If I could advocate for ostomates and IBD sufferers as a job, I absolutely would. One thing leaving work has taught me, is that I absolutely wouldn’t give what precious energy I have to a corporate company full of judgemental people, ever again. I’d rather offer my time to those in need and those who appreciate it! 

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Skin care and products, I do it my way.

​I’m noticing an increasing amount of posts this winter, about issues with sore skin and leaks. Who knows if the cold is having an affect but it’s super important to warm the bag before sticking and refraining from too much indulgence near to bedtime.

I thought as I’m always recommending Saltair lotion for sore skin, that I’d share the link and details. Plus I will share links to the products I use each bag change. These can be seen in the videos I posted last week.

NOW, I have to say that I find it odd that the industry is lacking in healing products and tends to opt for prevention and protection only. Of course prevention is key but unless a patient is really clued up on whether or not their methods are working, there will come times that sore skin needs treating quickly. So many of you rely on Stoma Nurse knowledge, that you fear trying things for yourself. I think this largely boils down to confidence and feeling that surely we can’t know better than the ‘professionals’…well actually sometimes we can! 

I find it incredibly patronising to be told by another adult, how to look after my body. I’ve lived in my skin for 32 years and know what works and what doesnt generally. I see my stoma area as just another part of my body. It doesn’t have magical properties and logic tells me not to use acidic, oily or greasy products. A quick read up on what faecal output consists of and what affect it has on the skin, you can then get an idea of what may help to reverse the skin breakdown or heal it, before changing your protection methods.

I have noticed a few ostomates refer to OTC products like Calamine (antibacterial, antiseptic and antipruritic) or Gaviscon (antacid) and this is great. Such simple household medicines that are very effective. Those with severe skin issues like fungal infections, bacterial infections, cellulitis or a severe allergies, must of course seek oral or topical medications via their stoma nurses or dermatologist.

To reassure you, I have spoken with a few stoma nurses about the lotion I use and each has had great things to say. The SNs at UCLH (University College London Hospital) told me that the cooling effect and ingredients are perfect for those sore areas. The logic and science behind this lotion and things like Calamine or Gaviscon, is quite simple. Our output is very acidic and can burn the skin on contact. These products are often alkaline with anti-itch properties, so can help return the skin back to its natural pH to stop the breakdown. Then it can heal.

I use this lotion prior to a method I was taught, called ‘crusting’. I ‘crust up’ with Coloplast Brava accessories. I use Brava barrier spray and Brava powder. I also believe that the least contact you have with the skin, the better. Constantly rubbing and removing skin cells will eventually cause soreness, so I avoid wet wipes of all kinds (barrier or cleaning) and only use warm water on dry wipes for cleaning. In fact I usually always bathe or shower, so rarely use wipes at all!

Of course everyone uses different products/methods and once you’ve found something that works…don’t change it. However many trusts are cutting budgets and the less products used the better. It’s not about our rights being stopped and more about ostomates understanding the huge cost to the NHS. We all have to play a part in cutting costs (regardless of how other areas rinse the system) and saving the service. 

I dislike the word ‘entitled’ because I feel it sounds ‘bratty’ but I do understand patient frustration when being denied a product they get on with. If you’ve at least tried the cheaper option or tried to cut costs elsewhere by maybe not using deodorisers and buying your own air fresheners or tic tacs, then by all means you should ask your GP for the product you get on with. However no one is entitled to ‘hoard’ or just order too many bags in advance for the sake of it. Samples are available as spares, so try not to order every product available either. It’s not like regular shopping! 

To put things into perspective, a box  of bags can cost anything from £60-£120 PER BOX. For those changing daily, £80 boxes over a month would be £240! I choose to get Brava products which are one of the best, because I use only 2 accessories along with adhesive remover but change my  bag every 5-7 days. A box can last me over 2 months. So £240 per month vs my £80 every 2 months. 

Moving back to accessories, I’d like to add a few points that really bug me when discussing accessories, so read up and take note. This may help you order wisely!

Paste is used ONLY for filling in dips and gaps to make the bag base stick better, not for healing as it contains alcohol which will burn.

Powder is for drying/absorption of peristomal skin. This helps the bag stick and PREVENT sore skin. Aids healing.

Barrier wipes and sprays are to create a protective layer and for healing peristomal skin.

Cavilon isn’t some unique magical product. Cavilon is just the brand name and it’s one of the most expensive available and used regularly in the US I believe. Orahesive powder is the generic term used for drying powders used to aid sticking and each supplier e.g Dansac, Coloplast, Pelican, Salts, Convatec, Hollister etc will have their own variety. 

Other products terms that are the same but cause confusion, are as follows:

Baseplate, wafer, flange – all used to describe the sticking area of the bag.

Ring, seal, washer – all used to describe the protective rings used around the stoma and under the bag base.

Base extender, tape, strips, bananas, half moons – all terms used for the half moon sticky tape used around the bag base. These can prolong sticking or increase the bag sticking area.

Here are the links for each item I use. If you already have a brand of barrier spray and powder, give those a try. Alternatively rings/seals can be good for protection too but you may experience seapage under them, so maybe try the crusting method prior to putting one on.

Keep an eye out for my review of the new Brava protective seals this week!

http://www.salts.co.uk/Our-Products/Stoma-Solutions/Product/SaltAir-Lotion.aspx

https://www.coloplast.co.uk/brava-skin-barrier-en-gb.aspx

https://www.coloplast.co.uk/brava-powder-2-en-gb.aspx
Shell 💋

Arthritis, what does it really mean?

​I found this great 8 point post about arthritis. It explains how the term ‘arthritis’ is an umbrella term and isn’t just ‘wear and tear’ of joints like many believe. Osteoarthritis is the ‘wear nd tear form’ mostly seen in older people or those who’ve had long term steroid use. However there are forms of arthritis that attack people of all ages, even the very young. These forms of arthritis are very different to osteoarthritis and things like hyper mobility (others conditions mentioned in article). So please have a read and I’ll then continue to tell you my arthritis story.

https://m.facebook.com/arthritisresearchuk/posts/1316362638384362

I rarely post about my struggles with arthritis as to be honest I’m still trying to accept and adapt to it. It’s like nothing I’ve faced before, in that I’ve lost all hope completely this time!  It’s getting harder to function and my ability to do things is hindered during flares. I feel embarassed if I ‘need’ my stick, so I stay at home instead. It was first believed 3 years ago that I had a form called ‘enteropathic arthritis’, which is directly linked to Inflammatory Bowel Disease. It was later confirmed to be psoriatic arthritis but without any major skin manifestations. I have had thin often peeling nails, a sore/scabby scalp and areas of psoriasis on my elbows over the years but nothing as bad as my Father has experienced. 

It’s likely I have developed PsA due to the genetic connection from my Father, who is also being treated for PsA at the moment. It’s taken many years for his psoriasis to affect his body internally and to the point of needing treating. I know he prefers to try natural methods of healing but lately it’s taken a hold and so he’s trying Methotrexate in the hope it keeps him active. Luckily I have some experience of the drugs used and can be a source of knowledge. My Father has a farm in North Finland and needs to be mobile, especially to prepare for the winter months, so it’s important that these meds work for him.

Now my PsA symptoms were largely controlled (or masked) by 3 years of steroid use for my UC. It reared it’s ugly head fully after the removal of my Colon. My dreams of being pain free were short lived and I’m struggling more than ever before. You might see me walking about one day, even attempt to skate again…but largely I’m hibernating, wondering if I’ll ever be in remission. I can’t sleep at night due to tendon and muscle inflammation all over. My hips have fluid swellings known as bursa’s (trochanteric bursitis), which I’m receiving physiotherapy for. These have formed from the scarring of inflamed tendons and the area needs remobilising. 

Sadly training to play roller derby appears to have made it worse, so I’ve been on a 4, maybe 5 month hiatus and I’m not sure it’s physically viable to continue anymore. This will be discussed at my next rheumatologist appointment, along with increasing or changing my biological medication. I’m terribly sad about how much it’s hindering my life already and I’ll be devastated if I have to give roller derby up fully but I must put my health first.

The drug I currently use is known as Humira or Adalimumab. Here is a description from the Humira website. 

‘PsA has been linked to an overproduction of certain proteins, including one called TNF. In people with PsA, extra TNF contributes to inflammation in the joints. HUMIRA targets and helps block a source of inflammation that contributes to the joint pain and skin symptoms of psoriatic arthritis.

HUMIRA targets and helps block TNF-alpha production, reducing inflammation. Because TNF blockers, including HUMIRA, affect the immune system, they can lower the ability to fight infections and may cause other serious side effects.’

Many will recognise this as a drug commonly used for IBD too. These conditions are caused by the same inflammatory process and so by removing my Colon, they of course didn’t change the way my immune system functions. I’m now being attacked elsewhere!

I have been on this drug since March but didn’t get a good run with it until June. The problem is, if you get a viral or bacterial infection (which is common due to how the drug lowers your immune system), you have to skip injections. I inject once a fortnight at the moment and I desperately need to be having it regularly. Between March and June, I just couldn’t get well enough to use it regularly. Since June it has been much better and I’ve cheekily carried on my injections on ‘lower’ weeks, merely because I can’t get out of bed without it. 

The first 48 hrs after injecting, you experience what is known as a Humira ‘hangover’. You experience extreme fatigue and pain…but once that passes, it’s like a weight is lifted. For 7 days after the hangover I get some better days. My tendons, muscles and joints feel less inflamed, stiff and sensitive. It’s wonderful! However this stops on day 10, when it’s meant to see me through the 2 weeks. My breakthrough pain is horrific and I end up back to square one. Due to this fluctuation it never feels like I’ll be in remission. 

I intend to ask my rheumatologist for another steroid injection in my hip but I’ve already had 3 this year, so it may not be possible. I may also be able to have a systemic steroid injection, which helps widespread inflammation but without the need to ingest steroids…the devils tic tacs. I’m hoping that by explaining my pain levels and lack of mobility and energy, we can consider another…better biologic. 

So for now I continue as I am and try to function with a pain riddled body. I’m hoping December brings new plans for both my hiatus hernia and arthritis. I need some hope for the New Year ahead.

Shell 💋