2023-02-14 12:18
Why I don’t want to be admitted to the hospital I don’t know about you and your experiences with healthcare, but my experience has mainly been negative. I don’t want to go… Read More
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Social Media, Ibd And An Ostomy Blog
sahara88uk.blogspot.com
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IBD and ostomy-related blogs; personal journey, tips and advice.
2023-02-13 10:31
I am thrilled to support Gwo-tzer and the Team at The University of Edinburgh in the latest Edinburgh IBD Sciencestudy. Overall well-being is an important goal in treating and managing Infla… Read More
2023-01-26 12:40
I share my latest experience of dealing with an ostomy bag leak away from home, and talk about what I think needs to be in an emergency stoma bag change kit, and why.Let me know if you add a… Read More
2023-01-25 13:15
Talking about the reasons I wanted a log pile, and how I set about making one - Wildlife gardening | liberating logs Read More
2023-01-20 11:20
Finding my version of healthy with IBD and a stoma has been a long and drawn-out process.What is a healthy lifestyle?We all know that sleep, food, water, and exercise are necessary to live t… Read More
2022-12-19 13:11
I'm sure most of us have felt the frustration (and annoyance) of family and friends just not getting it when it comes to our inflammatory bowel disease (IBD). Of course, I realise it can be… Read More
2022-11-29 12:02
From bag covers and underwear to stoma guards and seatbelt protectors! Check out the Products to support ostomates during day-to-day life blog on the Fittleworth website! Read More
2022-11-05 14:04
Dear Matthew, First, let me briefly introduce myself. I am an inflammatory bowel disease (IBD) and ostomy advocate, and I've been active in these online communities since 2014. I've spent th… Read More
2022-10-27 13:52
As Halloween draws closer, I wanted to write a quick post about leftover pumpkins and their better uses.For years, I’ve read that wildlife will benefit from leftover pum… Read More
2022-10-26 12:44
Part 1 was getting really long, so I had to split my experience of the pain management programme into two parts. Let’s continue where we left off and get this finished! Pain management… Read More
2022-10-25 12:31
I believe some of the information I was given may be of use to people who are interested in learning more about chronic pain, so I have included links where possible in case you want to expl… Read More
2022-10-20 10:28
I recently wrote a post about the importance of sleep hygiene for people with IBD. I've been on a mission to achieve this seemingly ever-elusive sleep for years. In this post, I talk about w… Read More
2022-10-20 10:06
Intestinal blockages, also called bowel obstructions, are a fairly common complication ostomates face at some point or another. So, I wanted to talk a little bit about why they happen and wh… Read More
2022-10-18 11:04
I realised when writing the update about my continence clinic appointment, that I hadn’t written about my physiotherapy (physio) appointment on September 27th. I started a few times, b… Read More
2022-10-15 16:31
I’ve talked about my bladder issues before, but for the purpose of this post, I’ll do a recap. Bladder symptoms and backstory Since my last surgery, to remove my Jpouch in 2018… Read More
2022-09-30 10:46
It’s not uncommon to feel like you won’t be able to cope after ostomy surgery. Early on, there are so many things you want to be answered. Being part of the online ostomy communi… Read More
2022-09-08 14:45
Sleeping with an ostomy bag can take some getting used to, and it's different for everyone!I share some common problems and a few tips in my latest blog for Fittleworth, Sleeping with a… Read More
2022-08-16 09:30
I run the #IBDSuperHeroes group on Facebook, and one of the most popular topics is new treatment. Understandably, people want to know what to expect if they’ve been prescribed a new on… Read More
2022-08-05 08:52
I’ve talked quite a lot about relationships after stoma surgery recently. I've shared experiences and tips, and it’s mainly ended on a positive note. However, it doesn’t al… Read More
2022-07-01 10:30
Continuing with the theme of relationships this month, I talk about intimacy after stoma surgery. I share my experiences, and why I think intimacy is particularly important after ostom… Read More
2022-06-30 10:25
Sleep hygiene. Why does it matter, and what does it actually involve? When I first heard the term sleep hygiene, I assumed it was referring to things we actually know as hygiene. Cleanliness… Read More
2022-06-14 12:14
You may know by now that I’ve had more than one stoma throughout my journey. Three, in fact. In this blog, I share my experiences of communicating with two different partners about my… Read More
2022-06-01 12:26
I repurposed an old trough! I initially thought fernery, but later decided more plant varieties would probably serve me better. This was confirmed when I saw Brunnera macrophylla 'Sea Heart'… Read More
2022-05-31 12:03
Talking about your stoma can be difficult. Your relationship with yourself, your acceptance, and your comfort level, have to come first. We have to start with YOU. In a previous blog, I talk… Read More
2022-05-27 12:54
Just a quick one from me in celebration of British tomato fortnight, over on Chronically Growing! Read More
2022-05-26 10:04
I often see people with Crohn's disease or ulcerative colitis asking if their symptoms are normal, in the #IBDSuperHeroes Facebook group. They're usually asking because they're unsure whethe… Read More
2022-05-18 10:28
In this blog, I talk about my decision to name my second ileostomy. I did not name my first stoma - I wish I had! Find out how naming my ostomy helped me - Stoma names: The potential po… Read More
2022-05-17 08:59
I've been working on the shady areas of my garden, and I think it might now be my favourite spot!! There are shady borders and shady pots. See what plants I've used in the shade! Read More
2022-05-06 12:01
I used to be an avid reader of IBD and ostomy blogs. Some lifestyle changes and hobbies have meant that I haven't delved in for a while. This morning, I opened all of the 28 IBD blogs I have… Read More
2022-05-05 10:28
I was reading the blog, Crohn's Disease Surgery Scars recently, and I have great respect for Matt’s honesty about his feelings about his. I can relate. My personal journey of acce… Read More
2022-05-03 10:32
Using toilets in people's homes makes me anxious. I'm very honest with everyone I know. How can I not be when I post so much about my IBD journey publicly online? I’ve been talkin… Read More
2022-04-25 14:12
Let’s talk about hair loss and Inflammatory bowel disease (IBD). A 2015 study stated that 33 per cent of people with IBD reported experiencing hair loss. People with Crohn’s dise… Read More
2022-04-22 07:50
Remission is what most people with Inflammatory Bowel Disease are striving for. It’s also what our healthcare team is striving for, for us. However, what that actually means can be rea… Read More
2022-04-19 10:23
You will often hear people with IBD saying “I’m fine”, “I’m OK” or even “I’m good”. But are we really fine, OK, or good? Today, I want t… Read More
2022-04-08 13:38
Recap: Bye-bye growhouse 🌬️ Tomato plant progress 🍅 Seed sowing 🌱 Honesty & evening primrose Frogspawn 🐸Check it out on Chronically growing Read More
2022-04-01 13:29
What a busy month March is in the gardening calendar! I can confirm that I’ve absolutely loved it. I've seen so many visiting bees and butterflies already 🥰 It&rsquo&hell…Read More
2022-04-01 09:54
Tenesmus might feel a little different for different people, but generally, it presents as the physical sensation of needing to pass stool, even when you are empty. This might mean that a pe… Read More
2022-03-31 11:48
Travelling can be a source of anxiety at the best of times. Throw IBD into the mix and it’s a whole new ball game! I wanted to share some tips for travelling with IBD with you. Hopefu… Read More
2022-03-15 10:56
Most people living with inflammatory bowel disease will have experienced taking Prednisone/Prednisolone at some point.Many of us appreciate how quickly Pred can get a flare under control, bu… Read More
2022-03-11 11:14
A low residue diet might be advised for a number of reasons. For example, it might benefit people with problematic diarrhoea, narrowing’s (strictures) in the intestine, or following su… Read More
2022-03-09 12:06
I've talked about my healthcare anxiety before. I have a pretty hefty list of things I need to contact the GP about, but I just keep putting it off. For example, my scalp... I had psoriasis… Read More
2022-03-07 13:05
A little self-compassion goes a long way, albeit not always easy to do. Research shows that people with more self-compassion are happier and more motivated. They have better relationships an… Read More
2022-03-04 09:51
Relationships are a very important, crucial even, part of life. Connections with others give us comfort. Sometimes even purpose. Relationships after stoma formation can feel complicated. It… Read More
2022-03-03 15:30
I'd decided fruit and veg wasn’t happening in my garden this year. I've filled all of my borders with bulbs, and plan to sow seeds directly into the ground wherever possible so as not… Read More
2022-03-03 15:23
I am ridiculously organised when it comes to seeds, plants, and the care of them. I don't want to be responsible for the death of any, and my brain doesn't have the capacity to store everyth… Read More
2022-02-25 10:49
I'd love it if remission meant I felt back to my normal self. The reality is that losing my colon has meant that my normal would always be a little different from my pre-diagnosis normal. Ho… Read More
2022-02-23 14:40
You may have noticed some recent changes on my blog. I’ve been thinking about changing things up for a while, because, well, I’ve changed. We’re all changing, all of the ti… Read More
2022-02-14 13:07
Liking, loving, or even just accepting your stoma is often not easy. It might feel like something you could never possibly do. The circumstances that led to needing a stoma, whether it was a… Read More
2022-02-11 10:54
Dating can be hard, period. Dating when you have a stoma can feel even harder. When do you bring it up? How much detail do you go into? Will it put someone off? So many questions!! 😵… Read More
2022-02-11 10:53
Accidents. Incontinence. Call it what you will. To be in your 20s and experiencing faecal incontinence is soul-destroying. I’m not saying it’s any less soul-destroying later or e… Read More
2022-01-28 14:59
I previously wrote about the state of my teeth and how I thought IBD may have impacted them. Today, I’m talking about what I’ve had done to improve the look of them. I don’… Read More
2022-01-24 15:25
As IBD patients, we often get used to the treatments and side effects that we have to take to get rid of our symptoms. It just becomes part of our life. We no longer consider how overwhelmin… Read More
2022-01-19 11:09
I can’t even count on one hand, the number of times that I’ve thought I’d got a brand new start. I’ve had a grand total of 7 bowel surgeries, and with each, I’v… Read More
2022-01-06 12:42
Do you ever feel like your life is just constantly one step forward, and two steps back?When I was first diagnosed, I had surgery to form an ileostomy less than a week later. I thought that… Read More
2022-01-04 13:35
This was a tough one to write. Because:A) it's difficult for me to admit weaknessB) I had to re-live some crappy memories to include themHealth anxiety is a thing. Health anxiety is when som… Read More
2021-12-09 10:45
I regularly find myself “nagging” at people because they’re suffering, but not contacting their healthcare professionals (HCPs). Often using reasons such as work or other c… Read More
2021-12-07 14:02
When I had my first ileostomy in 2007, I actually thought I wasn’t able to go swimming with a stoma. I imagined my bag would just float off me in the chlorinated water! That said, I di… Read More
2021-12-04 14:54
In this blog, I talk about what it actually means to be an IBD advocate. It's not just posting on social media about Crohn's disease or ulcerative colitis from time to time. It's not just ru… Read More
2021-11-22 11:43
Incontinence of the faecal kind is sometimes expected in IBD. Not accepted, but expected, on occasion! Many of us will have been there. But today, I wanted to talk about my bladder; how I TH… Read More
2021-11-02 11:25
A question I'm often asked, and one that I would like to pose to you is, “Do you think our healthcare team should be bringing up surgery sooner rather than later?”In this blog, I… Read More
2021-11-02 11:07
I get so frustrated when people confuse IBD and IBS. Better still, when they mix the two and invent a whole new condition! I’ve seen articles referring to "irritable bowel disease" and… Read More
2021-10-26 10:50
For me, because there have been so many diagnostics and examinations, and because my personal mindset has always just been that it’s a necessary evil, I can sometimes forget how tough… Read More
2021-10-21 10:45
Sexual relationships after you’ve had a stoma formed can feel complicated. It’s not just physical changes, but emotional changes to factor in too. I spoke to others in the commun… Read More
2021-10-20 09:42
Disability Employment Awareness Month is actually an American observance. Having said that, we live on social media these days, which connects people all over the world. I think it’s a… Read More
2021-10-14 10:29
Looking OK does not equal feeling OK. This is one of the most frustrating things when it comes to having an invisible illness such as Crohn’s disease and ulcerative colitis. Anyone tha… Read More
2021-10-12 10:22
I have a lot of regrets when I look back at the journey my disease has taken. I can see many times when I should have done things differently. When my own actions have negatively impacted my… Read More
2021-10-07 10:07
Having IBD or a stoma can make meals out feel daunting. You name it, we’ve probably considered (and gotten anxious about) it: Leaving smells in public toiletsFinding something appropri… Read More
2021-10-04 12:00
I HATE resting. I have never been very good at it. It always feels like there’s so much to do! I feel stressed if there's lots to do and it's piling up, and I feel stressed when I am e… Read More
2021-09-23 08:16
It's no secret that living with IBD can result in mental health decline. More and more studies arrive at the same conclusion. So, why is support still not offered more frequently?At numerous… Read More
2021-09-17 11:47
Today's post is about raising awareness of IBD to those that don’t already know about it. It’s such a hard disease to explain because it can affect people differently, and impact… Read More
2021-09-07 10:29
In this blog, I talk about eating out and trying to stick to "safe foods". I hate being thought of as a fussy eater. I really don’t think I am, but of course, IBD often dictates what w… Read More
2021-09-03 08:11
This blog focuses on mental preparation, and aims to answer any questions you might have!Someone putting my mind at ease about all of the day-to-day things would definitely have helped me th… Read More
2021-09-02 09:51
Preparation is always key for me. So, when something as big and life-altering as stoma surgery is coming, I need to get myself organised. Preparing for stoma surgery part 1 focuses on practi… Read More
2021-08-25 09:58
As a person with ulcerative colitis, I have to be constantly aware of how changeable it is. I often live day-to-day, with no expectations of what tomorrow will hold. Will I be so fatigued th… Read More
2021-08-19 10:02
This is the final part of a series about how my ulcerative colitis impacted different parts of my life. It's been hard to write; sharing my feelings of anger and regret, and rifling through… Read More
2021-08-10 10:37
In this blog, I talk about my friendships throughout my journey with ulcerative colitis, and how my priorities have changed over the years. "When I was diagnosed with UC, I was admitted… Read More
2021-08-05 16:43
The first time I had an ileostomy, in 2007, I threw away all of my clothes. I bought joggers and baggy T-shirts, and I thought that’s just how it had to be.In this blog, I talk about m… Read More
2021-08-03 10:24
In this blog, I talk about constantly needing to weigh up my options with regard to my pain levels and activities. “I have experienced sooo much pain over the years, thanks to ulc… Read More
2021-07-21 09:31
I don't think we talk about the impact that IBD has on sex often enough! So, what better time to start?There have been many periods in which I didn't feel like having sex for one reason or a… Read More
2021-07-13 10:14
"Learn about five people who are embracing life with an ostomy and making a positive difference."I came across this the other day, which I think must be from Ostomy Awareness Day 2020. I wan… Read More
2021-07-06 09:21
When you need emergency surgery, you don’t have much time to get your head around things. I love to plan and be organised. I love a list! So, when that time to process is removed, thin… Read More
2021-06-30 10:52
In this blog, I talk about some of my romantic encounters. I cover the relationship decisions I made that seem so stupid now, and how my IBD influenced some of those decisions.Check it out h… Read More
2021-05-31 11:01
Some things, like travelling, can be hard enough to plan at the best of times. Throw a stoma into the mix and it suddenly seems even more daunting!In this blog, I have written about some of… Read More
2021-05-28 10:52
Eating out can be a source of anxiety for many ostomates. We simply think too much sometimes, ultimately causing us to worry.Check out my latest blog for Fittleworth for my tips for eating o… Read More
2021-05-28 10:52
I often talk about how complicated having an inflammatory bowel disease is. It can be difficult to diagnose, difficult to treat, and difficult to understand by both patients and clinicians… Read More
2021-05-11 10:27
In this blog, I talk about how I think my IBD has impacted my teeth. I recently wrote about how IBD might impact teeth in general, and it was during the research for that, that I started thi… Read More
2021-05-06 12:35
I have celebrated World IBD Day, which falls annually on May the 19th, for the last seven years. Even just figuring that out seems crazy. I have been raising awareness of Inflammatory Bowel… Read More
2021-05-06 12:23
I couldn’t miss the opportunity to talk about mental health this month, as May 10th-16th is Mental Health Awareness Week. I think it’s completely normal to suffer with… Read More
2021-04-22 11:17
People with inflammatory bowel disease often avoid eating certain things because they're worried about the aftermath.Back in 2007, just before my diagnosis, I stopped eating completely becau… Read More
2021-04-08 12:34
This blog has brought up a few things that I’ve not really thought about for a long time… I talk about the emotions I felt when I needed a stoma, and also touch upon how I felt… Read More
2021-04-08 12:33
In part one, I talked about all of the emotions I felt about needing and having a stoma. In this second instalment, I talk about the journey to accepting it. Check it out here Read More
2021-03-26 13:21
I always took my health for granted, as I guess most people do. That is until it’s suddenly not reliable anymore!In this blog, I talk about my physical journey through periods of flare… Read More
2021-03-17 13:07
I thought it might be an interesting idea to talk about the kind of food that I eat and the effect that it has on my stoma output.Check it out here Read More
2021-03-09 12:11
Current researchsuggests that people with Crohn's disease and ulcerative colitis are more likely to undergo dental procedures than a healthy person. This includes; dentures, front teeth fill… Read More
2021-03-09 10:16
Gaining weight after stoma surgery is quite a common complaint amongst the ostomy community, and it can be quite distressing to feel like you have lost control of another aspect of your life… Read More
2021-03-04 13:53
Colorectal cancer is also known as bowel cancer. It affects the large intestine (the colon) which is made up of the colon and the rectum.I wanted to honour this important awareness month by… Read More
2021-03-01 10:52
Nearly dying made me look at my life and re-evaluate what was important. I felt like I could see more clearly. I knew what my priorities were. I was very aware that life is short. I wanted t… Read More
2021-02-22 13:02
I have been talking openly and honestly about having inflammatory bowel disease for years now. I guess that would make most people assume that I'm not embarrassed about it in any way. Unfort… Read More
2021-02-15 10:21
In this blog I talk about the ostomy issues I have to deal with now, which I believe are a direct result of my own actions earlier on in my IBD journey... Check out "Why I wish I’… Read More
2021-02-10 09:28
I don’t intend to get all mushy with this post, but I do want to acknowledge Valentine’s Day this month. In this blog, I touch upon the ways in which an ostomy might impact some… Read More
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