Crohn’s & I

Let’s talk about body confidence !

Hi guys long time no blog, apologies for being M.I.A these past few months.

I wanted to talk about something that is very important to me and i believe everyone may struggle with this from time to time. Body confidence. So what exactly is body confidence? In my eyes body confidence is all about feeling positive and comfortable in your own skin, along with accepting your insecurities for what they are. With summer approaching through the perspective of social media, there is this huge pressure to ‘be skinny’ or be ‘ bikini body ready’. In reality this is NOT a thing, I’m guilty for falling for this a few times to the point of having the perfect body and feeling like utter sh*t. Although I am much better than i was, I would be lying if I said I still don’t struggle. Sometimes I feel fat and other days I feel to skinny. I gain weight I lose weight. There’s no in between. But we are all unique, we are all different shapes and sizes and we should fully embrace who we are.

A bikini body is a body with a bikini on it, there’s no dynamic of being perfect. If you want to it, wear it but wear it with confidence. This is your reminder to love yourself this summer, wear clothes you feel comfortable wearing, fuel your body the right way and enjoy yourself. Life is all about enjoying the moment, it’s too short to worry about what you look like. Don’t fall for fad diets, instagram reality as let’s face it they are probably struggling with their confidence too. Everyone is beautiful and everyone should feel comfortable this summer in their own skin. It is so important to love yourself and heal your relationship with your body. Accept who you are and don’t change just because it’s summer!

Remember I’ve kind of been through it all when it comes to body image so if you ever want to talk my messages are always open.

Thank you for the support,
Pops x

Hi guys,
I haven’t been very active on this blog recently , so huge apologies about that. In all fairness I wanted to wait until my follow up today to post and update you all on what’s happening in my Crohn’s journey.

Today was my first appointment with my specialist, this was so important as I haven’t had an appointment with him since Feb 2020 when I was first diagnosed. I made a list of things concerning me so I wouldn’t forget, as when I get anxious my brain goes into shut down mode. These concerns included my weight, my mental health, medication adjustments and joints as I’ve been having a lot of pain in my back and hips recently. ( I swear I have a body twice my age!!)

At lot of you who have seen me recently May have noticed I’ve lost a lot of weight which increased concern for me. If I’m being honest my eating habits have dramatically changed, for some people it may be a good thing but for me I’ve only dug myself deeper into a hole which I need to get out of. I’ve dropped 3 dress sizes since April, so i need to focus on my health and be responsible, along with respecting that my body works differently to others so I need to give it more TLC sometimes. We discussed that meeting with a dietitian would be beneficial as although eating healthy might be seen as ‘good’ it could be making my symptoms worse. It’s so hard to judge the amount of food/Calories I need as I have no idea how much of it I’m absorbing. He also mentioned that instead of having big meals, snack throughout the day. I also mentioned to him that I don’t usually eat until 2-3pm, which is something I need to change. He also suggested I weigh myself on a weekly basis to judge if I’m losing or gaining which will also give a reflection of how active my illness is.

Most of you who have been following me since day 1, are aware That I have previous history of anxiety and depression and recently this is something I’ve been really struggling with. I wanted to bring this up as most of the time I can get over it but when I’m coming off my drugs and need a top up my emotions are all over the place. This might be related to my symptoms as I heavily rely on this drug to make me feel ‘normal’ so without it I feel like I’m going crazy. I’m not but my brain does somersaults and everything is at 1000 mph. It turns out That he has never heard of that symptom before which was really helpful ( not!) but he did say it could be my unique way of channeling the pain I’m in. So as it stands I’m staying on Ustekinumab which I’m happy with as I think starting Uni and managing new medication will tip me over tye edge.

Symptoms wise, generally I’ve been alright I have the occasional spouts of stabbing pain, migraines, fatigue and painful joints. When I mentioned my joints he said that’s it’s very common with people with Crohn’s to have joint pain due to lack of calcium. So he ordered 6 lots of blood tests to check everything’s ok.

The other blood tests were my usual full blood count, iron levels, liver function test, coeliac scanner, and some others I can’t remember the names of. Blood tests are usually the things I dread as I have the sh*ttest veins ever. I may or may not have been told I couldn’t have the paediatric team come down and do it for me as now I’m 20 I can’t be seen my them. However, I got my own way and the team came down. It was the Easiest blood test I’ve ever had and I’m no stranger to blood tests. I was worrying over nothing. I didn’t eat anything this morning and the thought of me passing out after a blood test really started to get into my head, I was fine though and I’m glad it was over so quickly.

I have to go back next Wednesday for part 2 of todays appointment to meet with my counsellor and potentially meet with my Team to discuss any concerns the blood tests have raised. If all goes well I’ll be seen every 4 to 6 Months, with bloods every 2 months to monitor inflammation and the Monthly weigh in and meeting with dietitian.

I’ll post again once I have another update. Thank you for all the support it’s really appreciated xx

So important!!

Hey everyone I hope you’re all Ok.

I don’t usually talk about my medications on here but i wanted to educate people on this specific kind as it’s drastically changed my health.

As many of you know I have had a fair amount of treatments that failed to respond to my active Crohn’s disease. I was losing hope but luckily, about a year and a half ago I was put on STELARA. This is an injection that is injected into your lower stomach and is only done every month which is so much better than taking a load of tablets daily.

My experience with this drug has been mainly positive however I wouldn’t be being honest if I said that sometimes the side effects are unpredictable. I’ve started to notice the past few months that when my injection is due a top up I begin feeling: depressed, anxious, low, sad and emotional and so fatigued. It feels like I haven’t slept for a month. I’m still learning to recognise these signs when they first appear and act on them but it’s such a sudden change it’s like a switch in my body that instantly changes. I find that hard to process and it’s frustrating. Even after taking the injection it takes me about a week or so to feel like myself again.

In terms of taking the injection I’ve got to be honest I hate doing it. I get all worked up about it but I know In my head it’s fine as I’ve done it many times before. it does hurt and I do have to lay down after and eat something sugary as I do feel a bit dizzy but I think that’s partly the anxiety I put on myself beforehand.

Although it’s painful, I have noticed a huge improvement in my Crohn’s symptoms. I don’t get the sickness, constant bathroom trips, sharp intense pains. Even though It’s working I’m still not in full remission and still suffer with bad migraines, cramps, bloating and joint pain.

Crohn’s is such a journey in itself and it’s been a constant cycle of highs and lows but I’m so grateful to be at the stage I am in now compared to a few years ago. It’s Changed me as a person and made me realise how strong and resilient I am along with understanding my illness more and making myself boundaries for how I’m feeling. I am standing up to Crohn’s and proving it that I can take control of my body!

Hi Guys,
Long time no blog sorry about that!

I’ve been meaning to post but wanted to make it valid and important rather than being generic. As you all know I suffer a lot with my confidence self esteem, depression and anxiety. All of these are common side effects of having an IBD and which have all decided to show up in the past few months. I’m going to be open and honest, as I always am
As I don’t want those newly diagnosed people feeling alone. It bloody sucks! Having Crohn’s is hard enough we have to battle with fatigue, pains, nause constantly, so with the additional confidence issues it becomes overwhelming.

One of the things I’ve been struggling with is loving my body and being kind to it. I’ve started to have a sort of negative mindset towards it, I’ve tried to change it by going to the gym, eating healthier, trying to make my mindset more positive. But by doing that it caused my body to go into a meltdown and give up on me. so I’ve cut back on going to the gym but I’m going because it makes me feel like I’ve achieved something and puts me in a more positive and productive mindset. It may have also been because I was under eating but we live and we learn. Our bodies are our houses, they keep our bodies alive so we should look after them, and I think sometimes I forget I have to look after mine a little more.

Self love and confidence don’t come overnight it’s a constant grind on finding the right balance. I know it’s such a stigmatisation towards mental health and body issues but I am proud of the way I am. When I look back at photos from 2020-2022 I am so proud of how far I’ve come from the girl who was on multiple medications, in and out of hospital, severely depressed and hated the way she looked to the girl now who’s finally at peace with food and her happiness. I’m also happy with my body and I’m slowly learning to accept my curves and love my insecurities but I just wanted to say If anyone is feeling the same.

Your body does NOT define you as person. Don’t feel pressured to lose weight for someone else’s happiness. LOVE yourself first. Keep being YOU as YOU are bloody amazing! No one cares about your scars stretch marks, cellulite weight body shape what you wear or what you look like. If we were all the same the world would be such a boring place.

Love yourself, fuel your body It keeps us alive, it’s our vessel. There’s no point in judging because it’s our personality that matters.

I know this isn’t really about Crohn’s but i wanted to create this post as a reminder everyone is valid and everyone is beautiful. Along with the fact there’s so much pressure to have the perfect body but in reality the perfect body doesn’t exist !

💜Crohn’s and Colitis awareness week 1-7 December 2022 💜


Tomorrow, Dec 1st marks the beginning of Crohn’s & Colitis awareness week, something that each year I try to participate in to share my story and break the silence of having a Chronic incurable illness.

The initial aim of this blog was for me as a teenager who was newly diagnosed to create a negative into a positive and to try and spread awareness, educate others and share my experiences as sometimes you can feel very lonely and isolated. This year, the Crohn’s and Colitis foundation are asking for those with the disease to share there diagnosis story… so here’s mine!

Ever since I was little, I had always suffered from tummy troubles, fell Ill a lot due to already having a lowered immune system due to being born prematurely. My main symptoms however started when I was around 14 years old. These symptoms included severe stomach cramps, fatigue and migraines.

I went to the doctors many times but they pinned it down as anxiety, indigestion and period pains. Which obviously looking Back now I knew wasn’t the truth. I managed to get through the pain with paracetamol and heat pads but it wasn’t until I was in year 11 and starting my GCSES my symptoms increased. I mainly put this down to stress and anxiety as anyone who knows me knows that I hate exams and I tend to stress myself out. The symptoms weren’t persistent enough for me to go to the doctors so It was an on off sort of thing.

When I started 6th form I was so excited as I could put all the GCSE stress behind me and focus on the things I actually enjoyed. Things were going smoothly, I was making friends and enjoying myself. It wasn’t until about a month in I started to feel nauseous all the time. I had a day without being sick and then every other day I spent most of my day with my head down the toilet. I felt fine though which was really confusing for me. I spoke to my doctors about this as it was disrupting my studies and I was worried what others would think of me seeing as I had just started college. They suggested that I had a blood test taken for coeliac disease and took a stool sample. My sister and dad both have Coeliac disease so i wasn’t surprised they where testing me for it.

The results of the test were negative for the Coeliac disease was negative. However on the stool sample my inflammatory markers where raised my 75% along with this that week my symptoms were worsening I started passing out due to the pain of my stomach and going to the toilet up to 10x a day. Due to this the doctors became more concerned so I had to have an emergency consultation ( which I didn’t know at the time) with the gastroenterologist team at Addenbrookes. We discussed what could possibly be happening but because the pain was inside they needed to do more thorough checks that would have a detailed outcome.

In the space of 3 weeks I was constantly back and fourth to hospital for blood tests, x rays, MRI scans colonoscopy’s and endoscopy’s. For those wondering a Colonoscopy is a camera that goes from the back to the front, and an endoscopy is the other way round. The doctors could see that something was wrong but all these tests still couldn’t prove the extents of the why. They suspected either Crohn’s or colitis which I had never heard of so it was a very daunting and frightening time for me. There was one more option I was given which I am now extremely grateful for, this was a new Study which involved me swallowing a camera which was in a tablet form and having a monitor and camera attached to my lower stomach and it took a picture at every minute, that was stored into the pouch. A few days later I got a call saying to come into the hospital. On the 19th Feb 2020 I was diagnosed with extensive Crohn’s disease which effects the whole of my digestive system meaning I have ulcers going all the day through my body that cause inflammation. Making me have severe stomach pain, sickness, anemia, etc. Crohn’s is so much more than just a stomach illness as it affects our bodies in so many other ways too!

2 years on, I can say that I am grateful I’ve been diagnosed even though it wasn’t an easy ride. I still struggle with pain and fatigue and I do still have bad flare ups and I’m still not in remission along with now having to deal with other symptoms and illnesses Crohn’s has given me. But Im learning when to take a step back and say enough is enough. Crohn’s doesn’t make you weak as a person, it makes you strong and it makes you, YOU! Be proud of yourself for fighting back and not giving up!

If you’re suffering from any Crohn’s or colitis symptoms then please push to see a doctor. Because it’s so hard to diagnose it’s so easy to be misdiagnosed with something else.
I’m going to be honest it’s such a hard disease to have due to its severity and how unpredictable it can be. It can dark, you can feel alone but I promise you’re not. Things will get better, a little positivity can go SUCH a long way.

Hey Everyone! I hope you’re all well. Apologies for my absence on this page, I’ve been meaning to do a full update on my health but wanted to wait until I had my appointment with my team to do so.

As many of you are aware, I started a new treatment called Stelara ( Ustekinumab) in January. This is a drug that I take every 2 months. So far my body is responding positively to this and I’ve suffered from hardly any side effects which is a huge relief! The only thing I notice are my symptoms of Crohn’s worsening when I’m due another dose. Such as fatigue, more urgency and cramps.

Last month I had an online appointment with my gastroenterologist, and I expressed to him a few concerns such as me losing weight rapidly and bruising more easily along with looser stools. We came to the agreement to do a stool test and if the inflammation had increased to go ahead with a Colonoscopy and Endoscopy along with bloods. However, this isn’t necessary as there was no change in my results from January which means I’m one step closer to being in remission.

This is the medication for me and I will continue to use it unless my body rejects it some point. It feels So nice to know that’s it for now. What a Relief only took 5 Attempts of getting the balance right. As for the weight loss, I think my body has recovered from all the weight I put on via the 6 month round of steroids and is Back to its old self which is weird for me as it’s been so long since I’ve been my normal weight. I’ve also been a lot more active with having horses and riding 3x a week.

Although my health at the moment is stable and I’m getting stronger each day it’s still important for me to remember I will still have bad days and not to be too harsh on myself and push myself too far. Having a bad day is ok it doesn’t make me any less of a person, everyone has bad days. These past few months I’ve realised how far I’ve come with my journey and how much happier I am now. Things are definitely heading in the right direction and I hope soon I’ll be in full remission.

I appreciate all the support I’ve had since my diagnosis, it’s been a great way for to express how I feel without judgement and also have those in the same boat as me guide me through.

Stay positive!
Love,
Pops xx

I am officially burnt out, my friends.

That takes a lot for me to admit. I know I have learnt a lot over the past 6 years but I'm also very aware I am definitely still not the best role model when it comes to pacing. We all try our best but it's not realistic to expect ourselves to be able to perfectly pace in this world where we have to think about so much in order to just look after ourselves, our homes & our families let alone when we are also attempting to work, have any kind of social life or chase our dreams. So much is expected of us in the world, we are made in a society which pushes us to expect so much from ourselves it's not our fault we don't know where or how to draw that line.

Like so many times before I have got myself to a place where my body has said a hard no, I can't walk or think straight and I've spent the vast majority of the last 2 days asleep.

I do not share this for sympathy, although some spoons would certainly be appreciated. I share this because this is the reality of Chronic Illness you rarely get to see. You may see the odd days we are Up And Dressed and doing the things we love but you don't see the impact that can have and the days stuck on the sofa or in bed which may result from 1 adventure. You don't see the plans we had to cancel or the sacrifices we make to our mental health in order to find the energy to shower or cook ourselves a meal. Remember that social media is a highlights reel & there is so much you don't see.

- Jenni

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1. My physical appearance has nothing to do with how sick I look.
2. Just becasue the treatment works for someone else doesn't mean it will work for me.
3. My persistent chronic fatigue is not the same as your tirendess.
4. Just because I was capable of doing something today doesn't mean I can do it tomorrow.
5. Just becasue I try to stay positive doesn't mean I am all better.

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A survey conducted by Crohn's & Colitis Awareness found that 95% of patients with inflammatory bowel disease (IBD) said that fatigue was there worst symptom. Many people with IBD have weight loss/gain and liver issues, but that's not the case for everyone. IBD can impact the whole body and cause brain fog, osteoporosis, muscle pain and more.

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Today we stand up with the rest of the world to mark World IBD Day. Our hearts are with all those fighting it and their families.

Purple Ribbon spread the hope find the cure 💜

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Fatigue is something that affects me because of having Crohn’s. It can be so frustrating sometimes as you never know when its going to hit you. I can have a really good day where I feel ‘normal’ but then the following day feel like I’ve had no sleep for a week. I’m not lazy, it’s just sometimes it’s too much for my body to take I just want to sleep and have a chill day. But that’s okay, listening to our bodies is so important and it’s okay to take time out 💜

Today's Fact: Inflammatory bowel disease (IBD) is extremely unpredictable disease. It can be relatively quiet, but tolerable, for months at a time. Then, within days, it returns and leaves you physically drained and emotionally drained. Dealing with flares is a reality of living with IBD. Please share this post with your friends and family and let's make IBD visible.

spread the hope find the cure 💜

Hello Everyone, it’s been a while since I last posted so I thought I’d do an update on what’s been happening!

As many of you are aware in June last year, I was on a treatment that caused me to develop psoriasis along with some other unwanted and nasty side effects. Since January I have been on a new treatment ( treatment number 6!) called Ustekinumab formerly known as stelara as it’s much easier to remember! Why do medicines have to have such long and complex names 🤣

Now this is given via syringe, and I inject this into my stomach once every 2 months. It’s a bit similar to Adulimumab that I took last year apart from one being an epi pen style injection and the other being a syringe. The first dose was done by a healthcare professional who taught me how to do it myself, and since them I’ve been giving it to myself. It does hurt sometimes it’s like a stinging sensation but it only lasts a few minutes. After the injection has been done you’re also meant to lay down for half an hour or an hour if you get distracted like me!

With this treatment I haven’t really had any side effects apart from a week before I’m due my dose my energy levels dip and I get a few migraines but there nothing major. The most common side effects are dizziness, sore throat, joint pain, headaches, nausea and soreness around the injection site it might look red for a while and bruise. These aren't serious though but because ustekinumab affects your immune system you may be more likely to pick up infections.

So far I have had 4 doses of this and I have noticed a massive difference! I’m feeling more like the old me before I got diagnosed. My confidence and mood has increased along with my energy levels. Of course I still have those days where I am fatigued but there becoming less frequent. I’m also completely pain free and haven’t had a flare since October. So one step closer to being in full remission 😱.

A month Ago, I went for a blood test as when you’re on this type of treatment your levels have to be monitored. And I can safely say that this treatment is working for me long term as they where the best results I’ve ever received. All in the green zone. If you were to ask me 3 months ago If that was ever possible I would have said no.

If anyone who reads this blog has just been diagnosed with Crohn’s this is my message to you:

It is hard, it does bring you down sometimes. But I promise you it will get better. It’s a personal and mental Journey and things don’t always go to plan. But being positive is the way forward. And I’m not just saying fake a smile to make others around you happy. I’m saying be kind to yourself. Baby steps. Do something each day that makes you happy, set yourself goals, talk about it. It can be so isolating especially if you’re newly diagnosed. But we all have to start somewhere and it’s the end goal that’s most important. You just have to stick with it and yes it can be annoying changing treatments all the time but pain is temporary.

I really appreciate all the support I have had with This Blog, it has helped me realise others are in the same boat too. Keep positive, the sun is shining which always helps and I’m always a message away if you want to talk 💜

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I Don’t think people realise how Crohn’s can affect our mentality. Of course we are all human and experience an array of emotions daily. But being kind and knowing you have someone to talk to can make or break someone’s day. You don’t have to understand, you just have to be there to listen. Talking openly can be a big thing for someone with Crohn’s, but by talking you’re breaking that stigma and making people try to understand. Positivity is key! 💜💜

Oh my gosh, Another year has passed…

Wow, what a year it has been. I honestly think that this year has been one of the most memorable Years of my life. (So far). Now obviously every year has its ups and downs. I think we can all safely say that January to March was that moment. I can’t believe how much I’ve overcome this year, it’s CRAZY.

Firstly going through 3 different medications in a year, which had some positives but also some negatives. But I can now say that I am on the road to recovery and am getting better each day and am understanding when I’m ill and when I May need to take a break and hold my horses. ( not that I like to admit it, because I don’t. I think it makes me weak and I just shrug my shoulders and say ‘ I’ll be ok’).

I also started university, in my dream location, doing a degree that has always fascinated me and had an interest in. Alongside living alone in student accommodation and turning 18. Not mentioning leaving sixth form with the highest grades possible which I think is something I’ll be most proud of, given the year I’ve been through with my Crohn’s, Mental health and Psoriasis.

University itself has been a huge challenge as it’s a whole journey on self discovery and figuring out who you want to be with/dont want to be with. But all the friends I have made are so lovely and I wouldn’t change that for the World.

As I said 2021, has had its ups and downs, although it’s been mainly positive I have certainly had my downs. I think its so important to reflect and review as it makes you grow as a person. Now I hold my hands up and say I’m not usually one to do this, usually I just smile through but May till August we’re definitely my ‘low’ moments. It’s ok to have low/bad times it’s how we act upon them that can help us get by.

I hope all of my followers have had the best 2021, and have made the most of a certainly unpredictable year, once again. All I can say, is thank you for being so lovely and supportive. All your DMs and comments really mean a lot. It’s not also helping me, but it’s also helping those going though the same/similar as me.


Wishing you a happy new year and a very happy and heathy 2022! Stay safe,

Love,
Pops x

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Today we stand up with the rest of the world to mark Crohn's and Colitis Awareness Week. Our hearts are with all those fighting it and their families 💜

Crohn’s & I updated their business hours.

Hello everyone, I hope you’re all well.
I’m so sorry I’ve been so quiet on here, I’ve had some big changes this past month.

I’ve started university! Which still sounds CRAZY. I’m studying paediatric nursing, and absolutely loving it. It’s hard at times but I love a challenge and I know that hard work pays off. If any of you are struggling wether that’s in school, mentally etc keep going as there’s always light at the end of the tunnel.

In terms of my Crohn’s I am doing very well, I’m getting stronger each day and my symptoms are slowly decreasing. I’m not saying I am in remission but there is some hope that I’m over the rockiest part of having such a debilitating disease. I started my second round of ustekinumab on Wednesday which was a little scary due to the dosage being given via needle. The nurse teaching me to inject was so lovely and encouraged me to do it myself. The build up is always the worst, I was so anxious as to anyone who knows me will know I am the clumsiest person ever. I was mostly scared about dropping it on the floor. The pain was a 2/10 which I never expected and it was over in 20 seconds. The only side effects I had were some slight bruising to my stomach and a sore throat. I am hoping that this drug is staying long term as it only needs to be given every 8-12 weeks. Which won’t interfere with my placements too much!

My psriosis is also improving, my hair is growing back and I can now wear my hair up and without a head scarve. My confidence is slowly being built up again and I’m feeling more like myself. I’m still on the treatment for my head but I don’t have to use the creams anymore. My stress levels are also not as high at the moment which has done me a favour. As stress makes me flare, and I’m learning de stress mechanisms to make me feel calmer.

I won’t be active on here as much now, but I will try to update you all monthly. Thank you so much for all your support! 💜💜💜

NEW TREATMENT DAY!

This morning, I started my new treatment called Ustekinumab. I’m hoping that this works and will benefit me in the long one unlike all my other treatments which stopped working after a few rounds. When I got to the hospital I was feeling really positive and trying to not get myself worked up over it. The only thing was that now I am 18 and an ‘adult’ nobody was allowed to stay and sit with me. Which was really daunting as I’ve never done it alone before. But I put my big girl pants on and in all honesty it wasn’t that bad. It was only for 2 hours so I just watched Booksmart ( one of my favourite films) talked to friends and then it as all over. Everything else ran so smoothly, the cannula went in first time, and there were no complications what so ever. The next step is to self inject, but that won’t be for another 2 months.

Hope you’re all having an amazing summer! 🌞🌻