Definition of 'Mum'

Mum; noun

1. A beautiful and rare creature that picks you up when you fall down, tends to your every need when you're feeling sick, and has a magical power of making every one of your problems their own.

 

Maybe my definition of a mum is a bit specific... but in some shape or form, all of us have mothers that fit into this definition. Whether they stay at home to make sure our lunches are healthy, our beds are made, our clothes are washed or they work long hours to make sure there is food for lunch, a bed for us to sleep in and clothes to wear - mums put their wants and needs aside to take care of us. A mum is the most selfless thing you can be, and they are all simply amazing. Of course sometimes mums can be naggy, invasive and embarrassing, but 100% of the time they are doing what they do because they love us. If mums could be rated on a scale of 1-10 they would all be a 10. Except mums with sick children...they take on all the responsibilities of mums at level 10, with an additional level of anxiety, stress, fear and worry. My mum is definitely an 11.

 

My beautiful mum and me in Portugal celebrating my 21st (pre Crohns diagnosis)

 

Whilst I was in hospital my mum was always by my side, putting my needs way above hers. She had only just had an operation on her elbow and was in loads of pain sat in a horrid uncomfortable plastic hospital chair when she should have been resting at home. But not once did I hear her complain. This is just what my mum is like, she's a total inspiration. Every day when I would wake up feeling poorly and fed up, she would do her best to cheer me up and make me feel better. Whether she was peeling strawberries for me to eat because I can't eat seeds of any kind, or lying beside me when I couldn't sleep, listening to the sounds of my whimpers, or washing my face and brushing my hair to make me feel better - my mum did it all. Each morning when I saw her walk into my hospital room, she had a huge smile across her face. I knew that she was worried beyond belief about me, just because I know the way she is, but she would never let on to me. She was so positive through everything, even when I was being a real grump towards her she still was just lovely. Quite frankly, I couldn't have got through or dealt with the 3 weeks in hospital without her there with me.

 

The thing is about level 11 mums, is that it never ends. Even now, that I am out of hospital and starting to deal with my Crohn's, my mum still keeps an eye on me. She bugs me to email my nurses, to book my blood tests, checks in on what I'm eating, or how much I weigh or just how I'm feeling. She's always worried about me! When I was about 15 this would drive me insane and I would just want her to leave me alone. But now I'm that bit older, I realise she only worries because of how much she cares. And how amazing is that to have someone who loves and cares for you so much? I really am so lucky to have her in my life. I think she's actually a level 12 mum...

 

I don't know what the future holds for me, but there is a good chance that I myself could also be a mum to a child with a chronic illness and that scares me to death! At this point I can barely see myself being able to reach level 10 mum. Babies cry and I give them right back to where they came from. I hardly have enough hours in the day to get everything I want done, so how on earth will I have time when there are kids in my life! I mean, my boyfriend gets unwell and I can barely handle his whining! ha. If I struggle to imagine having to take care of a healthy tiny human, how am I supposed to take care of a kid who can't eat, can't sleep and is in unbelievable pain? I honestly do not know how my mother was able to do it, or how she still can do it.

 

At least I know that when I do have kids, I have an amazing role model to look up to.

 

XOXO Crohnie Girl

Morning Ritual

I'll be honest, I'm not much of a morning person but I am trying! In one of the many books on Crohns I read, it suggests waking up early so you give yourself plenty of time to get ready with minimal stress, so I've been trying to give this a go. 

On a week day my alarm goes off at 06.50, so I give myself a full hour before I need to leave the house. Lately I've been waking up way before this due to the prednisone, but I've made myself stay in bed so that I'm at least relaxing if not sleeping. The first thing I do when I wake up is go downstairs and put the kettle on (typical Brit!) but sadly it's not to make a cuppa, because caffeine is something that irritates me. Instead I have a hot water and a slice of lemon. At first I wasn't sure if his would hurt me as lemon is so acidic, but starting your day with hot water and lemon is amazing to cleanse you and I haven't found it to be irritating at all.

Whilst the water and lemon cools down to a drinking temperature, I prepare my breakfast and take my pills. Currently, I have to take 10 pills in the morning... Lansoprazol for acid reflux which I will be on permanently, 15mg prednisone, two azathioprine, Ad-cal as steroids make your bones brittle, 1.2g mezavant for ulceration, and then I take a multi vit and a peppermint oil capsule as it helps me with bloating. First of all this seemed to be so much to take, especially as I was taking 8 prednisone tablets as opposed to now taking 3, but now it is just part of my daily routine. 

And what better way to wash those pills down than with a yummy Aloe shot??... I'm kidding, it isn't yummy at all, the taste is terrible but I am yet to try a shot of anything that actually tastes nice. The whole point of a shot is to get it down ASAP isn't it? I take 60ml of this every morning, a tip I'd give is to suck on a lemon afterwards to get rid of the taste (makes me feel like I'm at the Sugar Hut shotting tequila!) 

For breakfast I have been using the 'Magic Bullet' that my boyfriend nicely gave to me, and I love it! It's so easy to use, you just chuck in the ingredients and whiz away. Of a weekend, when I have more time, I do like scrambled eggs on gluten free toast and enjoy a nice warm breakfast, but of a week a smoothie is perfect for me. My favourite is banana and blueberries with water. This might sound very plain and boring to a lot of you, but it is perfect for me. I got the  recipe from a book called 'Cooking with Crohn's' which is written by a woman who has the disease. She has a whole section on foods to eat whilst having a flare up which I found really helpful. It's so important to still be getting the right nutrition when you can't eat properly, as you don't want to make yourself more unwell. Fruit and vegetables are amazing for everyone and especially people with Crohn's, so by having a fruit smoothie in the morning I'm working towards my five a day. So that goes in my cup, I shower get changed, then walk to the station in the sunshine sipping my breaky! 

Happy Friday people!!

XOXO Crohnie Girl 

#Crohns #flareup #nutrition #magicbullet

Little Miss Difficult

I hate going out for dinner to nice restaurants and feeling like a real difficult customer. It makes me feel embarrassed to ask the waiter for gluten free, sauce free, everything free food. I feel like the fussiest fuss pot going, but this can't be helped and I have found that the majority of restaurants are more than happy to accommodate special dietary requirements.

On Wednesday night I went to Hakkasan in London to celebrate my boyfriend's sisters birthday. I had been to Hakkasan once before and it hadn't worked out very well... My boyfriend had booked for us to go in November 2014 for our anniversary and I was so looking forward to going as I had never been before. We had arranged to stay the night in London, and were both looking forward to it. Typically in true 'Daisy' style, the day of our anniversary I was not feeling well. I made myself go into work (it was only a walk from where we were staying) but left an hour later. I was suffering with stomach cramps, vomiting, diarrhoea, a temperature - all of which I now know is my Crohn's flaring up. I thought I just had a bug or the flu coming on and went to bed to make sure I felt better for the evening. I couldn't eat anything at all, but because of the diarrhoea and sickness made sure I kept drinking lots of water. I was determined to go out that night and celebrate my anniversary nicely. I didn't let on to my boyfriend how bad I was, because I didn't want to spoil the night for him. So anyway, we went to the restaurant and all was ok. My boyfriend ordered all the food as I didn't know what to choose and so much came out which all looked and smelt delicious. I remember I put one pork rib in my mouth and it wasn't going anywhere. I quickly made a run to the toilet and saved myself from vomiting in the middle of the posh Mayfair eatery! I started to cry as I couldn't believe I was spoiling yet another night out. I really felt terrible but there was no way I could stay out. I went back to the table and said to my boyfriend how sorry I was and asked if we could go home. He was more than happy to and said I should've told him how bad I felt as he would have understood and I know he would have because he is so supportive and I am so lucky to have him.

So with my first trip to Hakkasan not going down well, I decided I would plan ahead this time! I had read somewhere that most restaurants will accommodate to your dietary requirements if you contact them before hand, so this is what I did. I sent an email to Hakkasan Hanway Place explaining my condition and foods that I could eat and they were more than happy to help. They gave me options of things to choose from and I went for steamed fish, veg and plain rice. During the evening the waiters were all lovely and really helpful, explaining anything to me and answering any of my questions. It felt so lovely to have a nice dinner out and not be worried about what the staff thought of me being difficult, or forcing myself to eat something for the sake of not looking rude.

Steamed prawns, scallops & sea bass with steamed veggies and boiled rice

 

Me and the birthday girl Emma B

 

With what I have learnt about contacting restaurants in mind, I have contacted the few restaurants and hotel I have booked for when I go to Vegas next week. They have all replied with more than helpful responses and this has made me feel much more at ease about going and still being able to enjoy myself. So this time next week I will be eating dinner at Hakkasan in Las Vegas!

 

 

XOXO Crohnie Girl

 

#hakkasan #eatclean #dietryrequirements #eatingout #glutenfree

Crohnie Girl goes Overseas!

My illness typically had rubbish timing! I was due to go on a family holiday to Turkey on the 15th July with a group of 16 others and have a fun boozy time. But this wouldn't be the case for me now :( Still, I was determined to get myself stronger and not miss out on making fun memories.

Since being discharged on the 27th June, I had been working from home and some days coming into the office for short days which helped me get back to a bit of a routine. I work as a Personal Assistant in London, and all my colleagues have been really great so that mean's a lot. I was eager to get back to a routine because I'd been having real trouble sleeping due to the prednisone. 2-4 hours sleep a night have not been good for my eye bags or moods!! But, I knew that some sunshine would help sort that out. So my out of office went on, and off to the airport I headed. At the airport I was with my family and boyfriend so I felt safe that they would look after me. I felt a bit faint and not really with it which is never a nice feeling, but they were on hand to make sure I was ok. The flight was nice and quick and before no time we were in Turkey! Wooo! Our first night consisted of heading to the disco and listening to Turkish House Music, and watching Dutch people jump around like nutters which was very amusing. This was so entertaining I didn't even feel like I was missing out by not having alcohol. I also didn't feel tired at 2am thanks to pred!

My sister Ellie (L) and friend Phoebe (R)

My lovely, supportive boyfriend JJ and I on the pier in the sunshine

Friends on my sisters birthday. We had hired a cabana for the day which was really cool! We also played a few games of beer pong which I could still be involved in, it just meant that my boyfriend had to drink my drinks when I lost (he didn't complain!)

Over the week I really enjoyed myself, chilling by the pool and dipping in the sea into the day times and having fun with my friends and family in the evening. Prior to going away I was worried about what to eat/drink but this really wasn't an issue at all. It was an all inclusive hotel so whatever food I wanted I could have. I stuck to chicken, plain rice and veggies which suited me well. One night we ate in an Italian and I had a lovely salmon dish, and one night we ate in a steak restaurant and they were able to make me a lovely chicken salad. All the staff were really helpful, even if their English wasn't great - I was able to use Google translator on my phone and explain my problem and what food I needed.

At the Chinese, where I enjoyed chicken and plain rice (not at all repetitive!)

 

 

As well as eating well, I tried going back to exercise. There was a great gym in the hotel and previously to being ill I had been really into running. I ran a half marathon in March and was so proud of myself, and really enjoyed it. I got myself on the treadmill one evening and started to jog. I had been going for 3 minutes and was in agony. My stomach was killing me and I can only think this was due to everything jiggling up and down causing pain so sadly I had to stop and only managed a power walk. I felt tears well up in my eyes as this point because only a few months before I had managed 13 and a half miles and now could only run 3 minutes. It was just another realisation for me that things were different now. But quickly I perked myself back up and continued to power walk for 20 minutes which made me feel really good. Other times in the week I tried swimming which I found amazing! The hotel had a lovely spa pool so around 6 o'clock every day (when the rest of the group were having cocktails in the sunset!) I slipped off to the pool to do 20 lengths. It was so refreshing and I was proud of myself for being able to do it.

 

Pre swim!

 

 

All in all, I had a totally amazing holiday and was so happy I was able to go. I thoroughly enjoyed myself and think that the people I went with made the trip. Before going, I was worried I would feel left out by not drinking alcohol but this wasn't the case. I still had such a good time! One night I did try a gin and tonic, and 3 sips got me tipsy (embarrassing!) so I just stuck to the one. As well as a drink, I treated myself to my favourite ice lollies but not excessively as I was still worried if it would affect me, luckily they didn't. I know a lot of Crohn's sufferers have problems with dairy, but touch wood, it seems to be ok for me - everyone is different. 

 

I was amazed by this blue and pink twister!! Tasted delish

 

 

Whilst I was away I took my aloe vera gel with me and think this really helped my tummy, as well as the regular medications I was taking at home. I didn't suffer any particularly bad episodes or pains whilst on holiday, just the usual ones which I have learnt to cope with. Any advice I would give to people with Crohn's travelling, is be prepared. Take any medications you think you might need, or anything you have at home that makes you feel better just to keep your routine contingent to avoid any nasty flare ups while you're abroad. And of course travel insurance!! I used compare the market to get mine and managed to get it for a reasonable price.

 

My next travel is to Vegas with my girlfriends on the 6th August. After having a successful trip in Turkey, it's made me so so excited and now I can't wait!

 

XOXO Crohnie Girl

 

 

#crohnsdisease #turkey #dairy #alcohol #holidays #sun #exercise #swimming

 

 



Aloe Vera

After being diagnosed, I read ALOT of information on Crohn's disease! My mum and sister had both bought me various books like Sam Faires autobiography, Crohn's for Dummies and Cooking with Crohns which I found them all to be very helpful. With the diagnosis came a mix of emotions... I felt relieved to finally know what was wrong with me, but also very upset and scared for my future. This was going to be something I had for the rest of my life so it was important for me to know as much as possible about it.

Immediately I started looking up tips and diet plans and what would be the next step for me. The most important thing right now is for my ulceration to heal up without scarring (fingers crossed!!!!) so that I can avoid surgery. One thing I came across was Aloe Vera. I had heard of this product and it's amazing healing powers so thought it would be worthwhile to read more. I have a friend that works for a company called Forever Living that sells aloe vera products so I got into contact with her to get some advice. She told me of many people that have Crohn's and Colitis that find the products really helpful. The main thing I was interested in was the aloe vera gel, which you take as a shot every morning. All it's ingredients are 100% natural and it comes straight from the aloe vera leaf which is full of natural healing properties. As well as healing properties, it is also said to cleanse and be good for your skin. This may sound shallow, but it was something I was worried about as a side affect of the steroids I was put on - prednisone - was acne. Everything I read sounded fab so I ordered a bottle straight away.

I have now been using the product for a month and cannot recommend it enough!!! The taste of the gel is awful, but its benefits far outweigh that. I really feel that it has worked for me and everyone has complemented my 'glowing' complexion. I have had a few spots under the skin, but no acne break outs and really think this is down to the gel. As well as my skin being clear, it has made my tummy feel calm and much better. Taking the shot is now just part of my morning routine, and I don't think I could ever be without it!

XOXO Crohnie Girl


https://wordery.com/living-with-crohns-colitis-cookbook-dede-cummings-9781578265107?currency=GBP&gtrck=NGN0Q0VkY1o5MVVHY291YlhrUmhSZ0Z2dHJ0MlJqcW1aTWJEanZtMC9rNWZOL0FGcnZBMFBYOFJCZm1KQUVKMHhmNUZISVphZDFjT2JvWHJQZ05BbWc9PQ&gclid=CjwKEAjw6IauBRCJ3KPXkNro1BoSJAAhXxpydq_1j9TnfAKywOpHgkb6-lz1ub3L7HnOzMwW78uyNBoCFT_w_wcB

Diagnosis

 

 

Ok... So here goes!

 

Last month I got diagnosed with Crohn's Disease after being very poorly for a long time, and whilst it is a relief to finally find out what's going on with me, I'm finding it very hard to get my head round. As a 21 year old girl who loves socialising with friends and has an active lifestyle, I find this diagnosis incredibly difficult to understand and to be honest find it overwhelming. I personally don't think there is enough awareness about these things, and very often IBD such as Crohn's and Colitis gets dismissed as IBS which is very frustrating for sufferers.

 

My 'illness' began in 2012, when I was due to sit my A Level exams. I was taken into hospital with bad abdominal pains on the Thursday (exams were to start on the following Monday) and at first they weren't sure what was wrong. They kept me in and I started having various tests as I was in so much pain as well as vomiting and diarrhoea. I had an ultra sound scan which found fluid in my pelvis, so they opted to do a laparoscopy to look through my fallopian tubes and drain the fluid. During this procedure, they also took my appendix out which they said was not inflamed but they would take out for safe measure. After the op, I was looking forward to getting well but this wasn't the case at all... I was discharged the day after, and my dad wheeled me out of the hospital whilst I was vomiting. I have to say, all of the nurses at the hospital were lovely, but it was really appalling to be discharged in such a state. The hospital is now on special measures...

 

 

During the week I spent at home after hospital, I lost a stone meaning my weight went to 7 stone 5 and I was unable to keep anything down. I had no energy to move or do anything, I couldn't even make it up the stairs so spent the week sleeping on the sofa with my Dad on the sofa next to me. One night things got really bad he phoned 999, but they reassured us and an ambulance didn't need to be sent in the end. We instead went back to the doctors and hospital to try and get to the bottom of things. When my GP pulled up my hospital notes it stated that there was 'nothing to remark' on my case and it was a normal, regular appendectomy, which clearly this wasn't. This was incredibly frustrating as it sort of meant I had nothing to go on... On top of this I had the stress that I had missed all of my A Level exams, and wasn't sure what was going to happen. In the end I had to take charge of my own health and gradually build myself back up. However this wasn't easy, and missing exams meant that I couldn't go to Brighton Uni as I had hoped. Thankfully things worked out for me as I got a job pretty soon after I was back to health and haven't looked back.

 

Since this time, I have been in and out of hospital with the same complaints - abdominal pains. This became really hard for me as it meant a lot of time off of work for all what seemed to be a 'tummy ache'. I had several ultra sound scans, stomach X-rays, and all showed nothing. Every time I went to the doctor to complain about this, it got dismissed as IBS.

 

Last year in the summer 2014 things got bad again, and I decided to use my private health care through work and get all the tests done to rule things out once and for all. I went to The Nuffield hospital in Brentwood and explained my story to the doctor, including mouth ulcers, blood in stools, feeling faint, family history of Crohn's and terrible tummy pains. He arranged for me to have a CT scan and a Colonoscopy to see what was going on, as well as stool tests. After the tests were done, the Dr told me he couldn't find anything wrong only that my stomach was slightly inflamed from acid reflux but other than that all fine. So he had come to the conclusion that I also had IBS, but I knew this wasn't the case. I urged him for further tests, as I had blood in my stools and knew this wasn't a normal trait for IBS. He actually seemed grossed out that I was talking abut it and used the phrase 'too much information'. I was incredibly embarrassed about this, so felt like I could do no more.

 

After this I went to a nutritionist to seek help that way, and she put me on the FODMAP diet which works in a way to eliminate food groups which upset your stomach and work out the triggers. I followed this through and came to a conclusion that gluten irritated me so cut this out of my diet. I found it quite embarrassing after having such time off of work to go back in with only having a 'gluten intolerance'. My work were really supportive and understanding but I couldn't help but feel silly. I just decided to get on with it and kept the gluten out. This seemed to be helping, but I would still have episodes of blood, terrible mouth ulcers, diarrhoea and cramps so it didn't make sense. I would force myself into work feeling terrible as I was embarrassed to have anymore time off. This really affected my life as it meant I was constantly tired and not myself.

 

Earlier this year I had excruciating stomach pains and vomiting, and I had called 111 and they advised going straight to A&E. I thought this would be the time they would find something, but no... I was let go being told it was 'trapped wind'. This was totally crushing and made me worry so much that there was clearly something wrong with me but no one seemed to believe me, or wanted to find out.

 

Then things came to a head at the beginning of June 2015. I was really poorly, off work with a temperature being sick and diarrhoea and I had cramps like never before. It was the worst pains I have ever felt. My mum took me to the doctors and after they had checked me they told me to go to A&E. I went to Basildon Hospital and the nurses and doctors were great. As soon as my blood test results came back they put me on antibiotics. My inflammatory markers showed 129 when they should be 5 or under so there was some serious inflammation going on. At first they had thought it was Pelvic Inflammatory Disease so I was taken to the gyni department. I had all the tests done there but it all came back inconclusive... So they wondered if it could be gastric.
During the time I was in hospital they were on 'black alert' which meant there was a shortage of beds and very busy. This had a knock on affect with me meaning I was left for 2 days with nothing being done whilst I waited for a bed to be freed up in the Gastric ward. I was exhausted and just wanted to get to the bottom of things. I had already been there for 2 weeks and no progress. My mum went to see PALS and they were very helpful so things got moving again. I saw a female gastro doctor who made me feel so positive. I felt like she actually listened to me and knew what I was going through and was keen to get to the bottom of it as I was. I then didn't see her again and only saw different doctors who only wanted my colonoscopy report from last year, they didn't feel the need to do a new one. I was so upset by this and repeatedly asked to see the woman doctor again but got no where. In the end my mum had to hunt her down and eventually got into contact with her and I was under her care. She performed the colonoscopy and found ulceration in my large bowel by the ileum where it joins the small bowel, showing I had moderately active Crohn's Disease. It's terrible to think that the other doctors weren't going to test me for this, as if it is untreated it can result in surgery and loss of part of your bowel. I am truly thankful to Dr Zia Mazhar.

 

So since being released, I was put on an eight week course of steroids which I am halfway through. Last week I had my follow up appointment and have been put on Azathioprine which I am to see how I go, and have blood tests fortnightly. If this drug works for me, then I will be on it permanently and if not it will be a case of trial and error with other drugs. I find everything that has happened so overwhelming and hard to get my head around. Especially as a young girl! As much as the diagnosis has been upsetting, I am lucky. There are so many other people out there going through the same thing as me and getting nowhere and told they have IBS. People know their own bodies and know their own health and should not be embarrassed or disheartened when they get a push back. It is bad really that you feel you have to force doctors to look at you and believe you, but it is all about taking charge of your own health.

 

 

XOXO Crohnie Girl



#Crohnsdisease #IBD #Diagnosis #azathioprine #prednisone