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First blog post

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Hi everyone, So this is my first blog on this topic, It’s not an easy thing to talk about and I will be admitting a lot of stuff that I hate to admit and talk about.
Being young and in pain constantly is difficult at any age but you just have to take one day at a time.

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Youngandinpain is about dealing with chronic pain everyday. I’m 22 years old and for over a year now I have suffered from chronic stomach pain and trouble eating the food I usually love. While going through this for a year and a bit, I have done a lot of research on Inflammatory Bowel Disease (IBD) which includes Ulcerative Colitis and Crohn’s disease. During this research I realised that there’s no support for anyone under the age of 30. I know there are people who suffer from Crohns and Ulcerative Colitis that are younger than me and older than me and I’m hoping my blog can help answer some questions for people around my age that suffer from these conditions. At the moment I haven’t be diagnosed for definite with Ulcerative Colitis but it’s the most likely cause at the moment.

That’s enough for my first blog, my next one will be about all my doctors appointments and finally being referred to the Gastroenterology department

Thanks for reading ūüôā

 

Being Gluten-Free

On 12th July I was given some more results. I have a light form of ulcerative colitis and a gluten intolerance. Since then I have been eating gluten-free. I had tried a few gluten-free things before this to see if it was gluten causing stomach cramps, pains and issues. Switching to gluten-free pasta first as I have always eaten a lot of pasta during a week.

In the past 8 weeks I have eaten fully gluten-free, avoided everything that might have gluten in it and I feel so much better for it. I’ve found that there are a lot of recipe books out there and so far I have brought 3. They have been a huge help to understand gluten-free diets and what you typically find gluten in.

The three books I brought were:

  • 200 Gluten-Free Recipes
  • The Genius Gluten-Free Cookbook
  • The Gluten-Free Cookbook IMG_4317

200 Gluten-Free Recipes is part of the Hamlyn All Colour Cookbook selection. I have used a few other cookbook by this group and think they are great. Including; Veggie Feasts, Cakes and Bakes and Student Meals.
The Gluten-Free book has recipes for Breakfast, Lunches and Light Bites, Supper, Savoury Bakes and Traditional Cakes and Bakes. This gives such a variety on what you can make. From french toast to roasted butternut squash risotto to orange and polenta cookies.
This is a good small recipe book that’s perfect for at home and taking away with you. IMG_4316

The Genius Gluten-Free Cookbook has 120 recipes in and a section on living on a gluten-free diet and how to store everything in cupboard.
I chose this book as I have tried loads of stuff by Genius. There gluten-free bread doesn’t taste stale or bland and the cakes aren’t too crumbly. Edible food is important when you’re gluten free! I’ve found this book is great as it gives information on what to avoid and gives alternatives. I haven’t made any recipes out of this book yet as I only just got it but it has given me some ideas that I have mixed into other dishes. IMG_4315

The Gluten-Free Cookbook by Heather Whinney, Jane Lawrie and Fiona Hunter has 200 recipes and step-by-step techniques as well as loads of helpful information at the front. The first 50 pages is all about being gluten-free, helpful tips and techniques and how to make bread, cakes, pasta and pastry. Then it has 200 recipes covering breakfast, lunch, dinner and dessert but also including party food, sweet and savoury pies and snacks.
I found the information on being gluten-free really helpful. Including the four steps to gluten-free; Get an appointment to discuss being gluten-free, Get organised, Get shopping savvy and get in the kitchen.

It also has several pages on what being gluten-free means, why people go gluten-free, what to avoid, how to find hidden gluten and what foods are naturally gluten-free.
For anyone that’s been newly diagnosed I would definitely recommend this cookbook.

TOP TIPS

  • Use Toaster Bags to avoid cross contamination
  • Clean all sides and pans before use
  • Nutribreks are the gluten-free alternative to weetabix. But unfortunately don’t taste as nice. I’ve found they taste a bit better with flavoured yogurt but with milk it’s like hard saw dust. Also you can get them for under ¬£1 from most pound shops or B&M’s where as Tesco sell them for ¬£3.79!
  • Morrison’s Free From pasta tastes the best, out of all supermarket brands
  • GoodFella’s does a Gluten-Free pizza! They are amazing, I can’t taste the difference but because they are so good they are difficult to get hold of. When you see one in the supermarket buy it.
  • I’ve found that out of all the bread you can buy at the supermarket the Genius brown loaf is the best.
  • The Genius fruit loaf bread is good too, it taste’s nearly the same and has cinnamon added to it to help with flavouring
  • Check all labels, even some spreads have gluten in!
  • PURE have a great range of gluten and dairy free spreads which taste yummy
  • Before diagnoses do a food diary, write down everything you eat and if you had any problems after meals this helps to narrow down what is causing issues.
  • Shop around for the best prices and best products. You may not find them all in one place.
  • HobNob’s now do a gluten-free range. Unfortunately they are a bit pricey for 8 biscuits but as a treat they are great. This of course isn’t McVitie’s fault that they are expensive but making gluten-free food is very expensive and difficult to make

Being gluten-free does make it a little difficult to eat out especially if you get anxious about it like I do. Just check the restaurant you are going to and see if they have any gluten-free options. Don’t panic is they don’t, see if you can make a gluten-free meal from some of the options. Also call ahead, let them know that you have a gluten intolerance and see if they have a separate menu or see if they would be happy for you too make a meal from the current menu. Most of them will understand once you explain what you can and can’t have.

 

Helpful website for more information on being Gluten-Free

http://www.geniusglutenfree.com/en_gb
https://www.coeliac.org.uk/home/

Simply cook do a gluten-free range of recipes and boxes:
https://www.simplycook.com/landing/home3?utm_source=PPC&utm_medium=Brand&utm_campaign=Brand&KW=10010

 

Things not to say to someone with a Chronic Illness

I found this image the other day and thought it was absolutely perfect. Having a chronic illness means you get these statements all the time.

When I returned to work after my flare up, I had 18 of these. From you sleep to much, You don’t look sick and you’re just stressed.

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How many can you tick off? Every time someone says one of these too you just remember they obviously don’t know what you go through every day. We are strong people, even when we are in pain we continue on with a smile on our faces. Other’s go home with a little headache, we go home when we can no longer stand.

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Flare up’s

All about a IBD flare up, I had 2 weeks ago

I’m just skipping forward a little from my last post but I will go back and fill you in on everything that happened once i had been referred to the Gastroenterology department.

2 weeks ago I experienced a very bad flare up, I’ve had flare up’s before but nothing to this degree. I was double over in pain all of Tuesday and feeling really rubbish. I tried to get as much work as I could done and had some lunch and fresh air which I thought might of helped. I had rung my GP and asked if there’s any pain killers I could take that would help with my back pain i was experiencing. As paracetamol always makes me feel sick and I know can’t have ibuprofen as I have ulcers, she prescribed me Codeine.
I got worse and worse throughout the day. I left work that afternoon and collected my prescription and went straight to bed, within 10 minutes i was out like a light. I was so exhausted from a morning at work.

On Wednesday, I will still in a lot of pain and it wasn’t really going away. I rung in sick to work and went back to bed. I took some codeine and was fast asleep straight away. I slept intermittently all day and I was still exhausted. The pain was only going away about 20 minutes after taking the codeine for 30 minutes to an hour.

On Thursday, after being uncomfortable all night and not really sleeping due to the pain spreading to my abdomen and hips. I rung the NHS 111 service. They advised that I go straight to A&E to get checked over as they were worried about my spleen or appendix. Just what I needed.
While at A&E they did a blood test, urine test and poked and prodded me at ever angle. They asked what the pain felt like and I explained it was shooting pains in my lower back, spreading to my abdomen and aching around my hip joints. I was feeling exhausted, nausea and in a lot of pain.
I was given an X-Ray to make sure my lungs were OK, and my appendix and spleen hadn’t swollen. Everything in my samples came back normal and so did my X-Ray’s.
The consultant I see through my time at A&E, examined me again and she said she felt as though one of my ulcers had grown and had caused a blockage in my large intestine which would be causing all the pain. She asked a senior consultant to come and have a look/feel as well to make sure she was diagnosing correctly. He agreed and then said I need to stop taking Codeine, it causes constipation and due to already being in pain down to a blockage it wouldn’t be helping.
I was given a¬†suppository to see if that would help. For anyone that doesn’t know what a suppository is please read this helpful link:¬†http://www.netdoctor.co.uk/medicines/a4473/how-to-use-your-suppositories/

After a total of 4 and a half hours at A&E with no sleep and a very tired boyfriend I was finally told I could leave. I was advised to try taking some Senna tablets and get a check up with my doctor in a few days time.
I spent the next 3 days in bed, struggling with the pain and exhaustion. I was hoping the flare up would come to an end soon as I was just fed up with feeling exhausted, sick and in pain.
On Sunday night I was all ready to go to work on Monday and finally get back into my routine. But my body had other ideas. It’s just horrible how our bodies fight themselves and trick you into feeling like you are doing OK. I struggled to get to sleep that night, I was uncomfortable every way I laid and my stomach was feeling a little unsettled. I then started to throw up bile and had a migraine from hell. Finally at 3am I got to sleep only to be woken by my alarm at 6am.

3 hours sleep, a migraine and an unsettled stomach, not the best way to start a week back at work. I rung my manager to call in sick again, feeling like the work employee ever. I then rung my doctors surgery and got an appointment for 11am.

The doctor said to try take some Lactulose and paracetamol. I said that paracetamol made me feel sick or be sick and she told me to try take it outside in fresh air and drink plenty of water. That I probably think i’m going to be sick when i take it so it’s all psychological. Maybe I had a bad dose when I was in my teens. I was uncertain but I thought it wouldn’t hurt to try it again.

I brought some from the pharmacy and went home. Lactulose is a type of sugar. It is broken down in the large intestine into mild acids that draw water into the colon, which helps soften the stools.
After taking this solution and taking the paracetamol I started to feel better. I went back to work on the Tuesday and took it easy. Everyone was telling me I shouldn’t be there and I should have taken more time to get better. Unfortunately they don’t understand that it wasn’t something I was going to get better from that easy. It’s not just a stomach bug.

2 weeks later and i’m just about starting to feel like my normal self.

 

There’s nothing we can do for you

7 words which stay with you… There’s nothing we can do for you!
I heard this several times from my GP last year, It’s so disheartening and makes you feel like you are crazy. Are you just imagining something is wrong with you? No you’re not. You know you body and you know what isn’t right for you. If you feel unwell, you know there is something wrong with you, be persistent with them.

I went for my first doctors appointment after having pains for 3 weeks, I was feeling sick all the time and I couldn’t stomach anything. After eating I was feeling like I was going to be sick or that the room was spinning. Every single day, sometimes the nausea didn’t go away. I had been doing temporary work for roughly 2 months when I started to feel really run down, sick and tired. Not a great impression when you had a review meeting coming up and a possible offer of the job full time.
The first doctors appointment I had ended with me feeling annoyed and like I was going crazy. The doctor checked me over and said that it could just be a viral infection, She told me to take some ibuprofen (allergic to paracetamol), get some rest and drink plenty of fluids. I didn’t feel like this was a viral infection but I wasn’t sure what it was at that point so I took the advice. The doctor said there’s nothing else they can do for me until I wait out this infection, if it doesn’t go away we will have another look.

After 2 more weeks I wasn’t any better, if anything I was getting worse. On bad days I wasn’t able to eat anything other than ginger nut biscuits. Hint: Ginger is a life saver when all you feel like doing is throwing up.
I booked another appointment for 4 weeks later. In the 4 weeks I did a food diary and I wrote down every symptom I was having. When this appointment came round, I went into the doctors hoping they would have a better answer for me. Boy was I wrong! The doctor went back through my notes and asked how I got on taking the ibuprofen, I told her I was still having stomach cramps and that I wasn’t eating very much as the smell of food was making me feel sick.
Once I said this it was like a light bulb had just turned on in her head, She asked me if I could be pregnant. If she had read my notes thoroughly she would have seen that I’m on the contraceptive pill and I had only just collecting another prescription the week before. I told her I had just had a completely normal cycle, she didn’t believe me. I did a pregnancy test while I was there and it came back negative, No surprises there.

She said she would put me in for a blood test to see how my anaemia’s were doing maybe I was low on iron or B12. I have both types of anaemia; Pernicious and Iron. My blood test was another 2 weeks and then an appointment 2 weeks later to discuss the results.

2 weeks after my blood test I was sat back in the doctors, with a list of 20+ symptoms. I was determined to find out what was wrong with me. The results showed that my iron and vitamin B12 levels are perfectly fine, but all my vitamins are on borderline. My vitamin D being the most worrying. The doctor prescribed some high dosage vitamin D tablets to take twice a day for 2 weeks to boost it back up to a normal level. She advise after 2 weeks to book a blood test appointment and take vitamin D tablets that I can buy over the counter and take 1 a day. She told me that my symptoms should start to go away once the supplements started to work.

6 months since my first appointment, It was between Christmas and New year and I rung my GP practice to see if my results are in. The receptionist told me everything is fine and to have a Happy New Year. I ask her if she can get a doctor to ring me to confirm this information as she is not professional trained to tell me that. Do not accept results from anyone that isn’t trained. They don’t know what’s normal and cannot offer you medical advice.

Later that day the GP called me back; none of the vitamin D tablets made any difference. She said clearly something is wrong as i’m not absorbing any vitamins. I’m not gaining any weight because i’m not taking anything from my food. I asked what the next step is and she said i’m going to have to have more blood tests. Maybe I’m gluten or dairy intolerant. But until I had a blood test and the results were back, again there’s nothing they could do for me.