Monday, 4 September 2017

New TREATment for Crohn's Disease on the horizon

UK charity, Cure Crohn's Colitis has committed £50,000 to CD-Treat, a new dietary treatment aimed at combating Crohn's Disease.

Inflammatory Bowel Disease (IBD) is a debilitating, and so far, incurable disease of the gastrointestinal tract. Symptoms include, but are not limited to, pain where the disease is active or scarring/abscesses have occurred due to active disease, vomiting, bloody stools, stomach cramps, fever, joint pain, fatigue, diarrhoea and/or constipation. Many sufferers consider this to be an extremely life limiting disease, and the medication options currently available are vast, but results differ from person to person. Some may achieve remission and stay there for long periods of time, whilst for others, the struggle is long and relentless.

Current evidence suggests that a combination of genetics, external influencers and gut microbiota all contribute to the disease. Studies have shown that disease improvement, following treatment with Exclusive Enteral Nutrition (EEN), coincided with changes in the gut microbiota. CD-Treat is a food-based diet which induces similar effects on gut microbial metabolites with EEN, which was confirmed in preliminary studies.


Cure Crohn's Colitis is dedicated to funding medical research, aiming to advance treatments for IBD and ultimately find a cure. The charity is run solely by volunteers, ensuring that 100% of donations are invested into research. CD-Treat seemed a worthy project to invest in as it has the potential to greatly improve the quality of life for Crohn's patients.

CD-Treat Lead researcher Vaios Svolos, a PhD student in Human Nutrition at Glasgow University, who also has Crohn's disease himself said: "We are looking closely into the role of diet and gut bacteria in Crohn's disease." A trial of 25 healthy people using the diet was successful in changing the gut germs in the same way that the liquid diet did.

A 12-week pilot trial of the diet on 20 Crohn's Disease patients (10 children and 10 adults) began last month. The diet consists of ready made cooked meals, which participants must strictly adhere to. They will also receive home visits from Vaios as well as having access to support lines. Monitoring will take place at four, eight and 12 weeks. Vaios said, "I can say the diet tastes quite nice. It's pretty good!" It is hoped that the carefully selected solid food diet will mimic the results of a restrictive liquid diet such as modulen.

Lauren Stewart, a member of #IBDSuperHeroes Facebook group, gave some insight into what life on a liquid diet is like: "It made me feel very alone. I couldn't even sit with my family when they ate as it was so hard being around food, and I didn't want to go out as all I could drink was water or black tea. I became very upset and angry, scared to break the enteral diet because it could make me ill, but feeling increasingly frustrated that I couldn't socialise."

For people like Lauren, the diet could alleviate those feelings of isolation. Suffering from IBD can be stressful, the unpredictability of the disease itself, and not being unable to control how you respond to treatments can make sufferers feel powerless. Being able to enjoy family time around the dinner table really could make a difference, and have a positive impact on patient's mental health.

Lauren added: "I missed a lot of birthday meals and family gatherings because they predominantly involved restaurants and I didn't want to be in that environment."

Many restaurants cater for specific dietary requirements, and rather than lose a reservation, will likely agree to heat up a meal which you have brought in yourself.

Those being treated with EEN may need it to be administered via a nasal gastric (NG) tube. This delivers the formula straight to the stomach and may be necessary due to fairly common issues such 'formula fatigue', which means individuals get so bored of drinking the same formula each day for 8 to 12 weeks, that they just can't physically make themselves drink it. As you may be able to imagine, this can also cause isolation in patients who are not comfortable being out in public with an NG tube. CD-Treat would also eliminate this issue.

The CD-Treat diet could potentially give people, that would usually only have a liquid diet as an option, the chance to take back some control over their lives and activities, and provide them with the opportunity to participate in social gatherings.


(Image via)

Thursday, 1 June 2017

Tenasmus | Definition

Tenesmus commonly occurs when there is inflammation in the rectum (the last few inches of the colon where stool is stored until it is time to have a bowel movement).

Tenesmus refers to cramping rectal pain. Tenesmus gives you the feeling that you need to have a bowel movement, often urgently, when there is not actually anything there to pass. Some people refer to the pain as feeling like spasm's, or even throbbing. When you have tenesmus, you might strain harder to produce only a small amount of stool during bowel movements.

Tenesmus is commonly a symptom of Ulcerative Colitis, Crohn's Disease and in a jpouch, Cuffitis. 





Thursday, 18 May 2017

Your IBD Stories - Adam Micheal Pearce

Name: 
Adam Pearce

What year were you diagnosed and with which form of IBD?
I was first diagnosed with Ulcerative Colitis back in 2012. I was rushed into hospital one evening, I had severe abdominal and lower stomach pain, the Drs put me on a drip and pumped me full of painkillers, after that I had tests and was told in no uncertain terms that I had colitis and it was flaring, that my Vitamin D levels were too low and as such I was put onto a combination of steroids and other drugs to manage my condition.

I was terrified, I had no idea what IBD or Colitis was, neither did anyone around me, I was terrified and spent the following weeks researching my condition.

A recent flare aside however, I am back in remission, I'm sticking to a strict diet which, thankfully, is keeping my symptoms at bay, my iron levels have improved and my fatigue has subsided, yes my diet is dull but it works and i'm proud of myself for sticking to it.

Have you identified anything that triggers you, and if so what?
I know there are certain foods to avoid, I have a list of do and don't eat foods, certain things to avoid at all costs and things I know are ok to eat... i once went 3 months eating plain chicken wraps for dinner because it was the only "main meal" that didn't trigger a flare up.

Highlight an invisible symptom of Inflammatory Bowel Disease which you feel affects you:
Fatigue, fatigue is evil, you're planning a day or night out and realise on the day you can't get out of bed, that's horrible, you end up letting people down... worse still is when people ask why you're tired, or question you for not doing things... you feel you need to explain why, when in reality it's something you have no control over.

Name one thing you feel like you’ve learnt or gained since having Inflammatory Bowel Disease:
I've learned, as cheesy as it sounds, that my fiance is incredible and that my friends and family are amazing... without their support and patience this condition would be so much harder to deal with.

Also have to give props to the IBD superheroes group on Facebook, Sahara and her team are amazing and the group had made me feel "normal".

I've also learned that some people just don't understand the severity of IBD, you can spend hours explaining and it will go over their heads, hence the need for more research and awareness.

What makes you an #IBDSuperHero?
I did a 10 mile charity walk, I'm proud of that, I never thought I could do it because of toilet breaks or pain but I did it.

I'm also proud of actually accepting my conditon, I used to just say yes, do things and not care that I felt ill... now I know to say no, to look after myself even it annoys other people because you can't attend something, I guess I've learned that it's OK to be sick.

Wednesday, 10 May 2017

12K to fund research to Cure Crohn's Disease and Ulcerative Colitis

To be honest, it felt like we were never going to get here, but here we are – AT LAST!

#IBDSuperHeroes has raised £12,000! That’s 1,200,000p, ALL going to research to ultimately find a cure for Inflammatory Bowel Disease via Cure Crohn's and Colitis!


Thank you to every single one of our amazing heroes that have donated, shared posts, fundraised, attended meets and supported others within the group.

You’re all AWESOME! 


Monday, 8 May 2017

This World IBD Day - #IBDSuperHeroes Assemble!

Raising awareness is important every day of the year, but on World IBD Day in particular, everyone is doing it!

You may have been wondering how YOU can get involved with #IBDSuperHeroes fundraising and awareness activities this World IBD Day, to help find a CURE for Crohn’s Disease and Ulcerative Colitis.

Here are a few ideas:

Using your Facebook, Twitter, Instagram, Tumblr, Google+, Pinterest – whatever you’ve got, post your awareness messages and include hashtag #IBDSuperHeroes so that we can find and share them!

We know that life can be hectic and some of you will be busy at work or recreationally on the day, but you can still help get #WorldIBDDay trending on May 19th! Thunderclap will tweet, post to Facebook and/or Tumblr on your behalf on May 19th at 10am! You don't even have to log in on the day, just pledge your support here today!


Raise awareness with your profile picture! Find our World IBD Day Twibbon here


Update your social media profile header and profile pics. Find our Facebook album here


Like / Follow us on social media and share our posts throughout the day.

You can play a part in finding a cure for Crohn's and Colitis by donating now! Text CCSH90 £3 to 70070 or visit our JustGiving page.

If you are fundraising on the day and would like 100% of your hard earned pennies to go to research to find a cure then make sure you're fundraising for Cure Crohn's and Colitis! You can even join the #IBDSuperHeroes team page if you're on JustGiving! Just follow the instructions below!




Friday, 28 April 2017

Raise awareness of IBD this National Superhero Day!

It's National Superhero Day!

We know you're IBDSuperHeroes EVERY DAY, but if you're feeling that extra bit superheroey today, grab your cape & let's raise some IBD Awareness!


Post your awareness posts & images on our wall, publicly making sure you use the #IBDSuperHeroes hashtag on Facebook, Twitter, Instagram & Google+, or tag the Facebook page, & we'll share your posts!

If you have a spare £1.. or £10, and you'd like every penny of that to go to research to CURE IBD, you can make a donation!

Text CCSH90 £(amount) to 70070 OR donate online.


#IBDSuperHeroes – fundraising to find a CURE for Crohn’s and Colitis.
Money raised by #IBDSuperHeroes is solely invested in to finding a cure for Inflammatory Bowel Disease. That is 100% of your donations to medical research!





Thursday, 6 April 2017

Vitamin B12 deficiency | Definition

Vitamin B12 deficiency is quite common in IBD patients because B12 is absorbed at the end of the small intestine.

People with Crohn’s disease in this area may not be able to absorb B12 properly. People who have had surgery to remove the stomach or part of the small intestine which includes the end of the small intestine may also not be able to absorb vitamin B12.

Vitamin B12 helps to keep the nervous system healthy and is needed to make new cells in the body. 

Common symptoms of a vitamin B12 deficiency include:
Tiredness
Lethargy
Feeling faint
Breathlessness

Less common symptoms include:
Headaches
Heart palpitations
Altered taste
Loss of appetite
Ringing in the ears (tinnitus)
Looking pale

Sore mouth and tongue



Ileostomy | Definition

A ileostomy requires a surgical operation in which the cut end of the small intestine is brought through the abdominal wall to create an opening called a stoma. Digestive waste is then collected in a bag which is fitted over this opening and attached to the skin. It may be possible to reverse this, but this will be dependent on the disease and the person’s history.

A ileostomy is usually on the left side of the stomach. A colostomy is when it is the colon (large intestine) and not the small intestine, and this is usually on the right side of the stomach.





Colostomy | Definition

A colostomy requires a surgical operation in which the cut end of the colon (large intestine) is brought through the abdominal wall to create an opening called a stoma. Digestive waste is then collected in a bag which is fitted over this opening and attached to the skin. It may be possible to reverse this, but this will be dependent on the disease and the person’s history.

A colostomy is usually on the right side of the stomach. It is called a colostomy because it is the colon that is bought through the abdominal wall. An Ileostomy is when it is the small intestine and not the colon, and this is usually on the left side of the stomach.





Malnutrition | Definition

Malnutrition is a serious condition that usually occurs when a person’s diet doesn't contain the right amount of nutrients.

A person with Inflammatory Bowel Disease may have to limit their diet due to disease activity and some find that after surgery, their are certain foods they have to avoid forever. 

Some sufferers may suffer malnutrition due to malabsorption.
  

Malabsorption | Definition

Malabsorption means that the intestine fails to fully absorb the nutrients in food. This is sometimes caused by scarring / lesions from disease activity but can also be due to having part of the intestine surgically removed. Malabsorption may result in malnutrition
















Sunday, 2 April 2017

Setting up your own charity car wash

This page has been setup for those within the #IBDSuperHeroes group that expressed an interest (and anyone else interested) in organising a charity car wash to raise money to fund research in to curing Crohn's and Colitis.

Cure Crohn's & Colitis invest 100% of donations in to medical research to ultimately find a cure for Crohn's Disease and Ulcerative Colitis. Everyone that works with, and for Cure Crohn's & Colitis is voluntary so no admin fees or staff wages are taken from donations.

Don’t forget to click 'going' on the event page so you don’t miss any updates!

Arranging your car wash:
Initially we thought about aiming to get everyone to arrange their own car wash on the same day but we're aware that it's unlikely that would be possible, so instead we have chosen the month of JULY (hopefully the majority will be able to work with this).

The easiest method would obviously be to contact a local car wash to see if you can use their already equipped venue. You may need to enquire which day they are usually less busy (as you may be able to pull in more people) OR when they're busiest (if they're willing to share their already ripe custom for a good cause). Using a car wash should mean that you also have an easily accessible toilet, but it may be worth mentioning to them that you will need this. 

You may need to offer to provide cleaning materials yourself, although they will likely have a supplier that they buy cheap from in bulk so they may be willing to sell you these at trade price, ensuring their usual customers are still getting the products they're accustomed to.

We can provide you with an endorsement letter which introduces Cure Crohn's & Colitis, #IBDSuperHeroes and is on Cure Crohns & Colitis headed paper. This also includes the registered charity number and proves your intent to raise money for the charity, as well as their knowledge of the charity car wash events on their behalf. If you would like an endorsement letter, just send an email to ibdsuperheroes@gmail.com with the subject CAR WASH ENDORSEMENT LETTER.

Rally the troops! Gather as many of your friends and family as you can to help you! You could post in the group and the event page with your location and see if any other IBDers near you would like to get involved!
Supplies you will need: 
  • Liquid Soap
  • Buckets (for washing and collecting money)
  • Brushes
  • Sponges
  • Towels / Chamois / Leathers
  • Hoses with spray nozzles
  • Signs
Bare in mind, as mentioned above that the car wash you use will obviously have all of these already that they may be willing to supply for free or sell to you.
OR, you could request donations in the #IBDSuperHeroes group. This will allow other people to help who would not otherwise be able to participate. (And your event makes more profit!). If you do need to buy supplies, local £1 shops are great places to start or your local supermarket. Check out the below links for some ideas.

JustGiving page and sponsor forms:
Friends and family may want to donate for your efforts, so the images below show you how to create your own JustGiving page, and also how to link that to the #IBDSuperHeroes team page.


When you have set up your pages, post them in the event page and we can share them on the Facebook page, and your friends and family should see your posts too as this event has been created as a 'Public event'.

You can also upload money raised on the day to your JustGiving page.

If you would like sponsor forms to print, we can send them to you. Just send us an email to ibdsuperheroes@gmail.com with the subject CAR WASH SPONSOR FORM REQUEST.

Promoting your car wash:
We have posters ready to add your event details to so that you can promote your event locally and online. 
To request a poster send a request to ibdsuperheroes@gmail.com with the subject CAR WASH POSTER REQUEST. Don't forget to include the address, date and car wash price (Look at local prices and consider charging £1 less).

Create your own public event page on Facebook with the details of your car wash and invite as many friends and family that you can. You can post the link to YOUR event in the #IBDSuperHeroes event page and on the Facebook page wall. We will then promote this for you too. 

Contact local Facebook pages and ask if they can share it for you, add hashtags for local events on Twitter and ask them to share it, add it to any free event listings for your local area and post in local groups. 

Friday, 20 January 2017

Research in to how environmental factors, diet, and the gut micro-organisms contribute to IBD flares

Cure Crohn’s Colitis has committed £125,000 to PREdiCCt : A study looking to increase understanding of how environmental factors, diet, and the gut micro-organisms influence Inflammatory Bowel Disease flare and recovery.

The research is being led by the University of Edinburgh and NHS Lothian and aims to shed light on the everyday factors which could contribute to flare-ups in Crohn's Disease and Ulcerative Colitis patients.

The study will collect data on a monthly basis from 1,500 participants from around the UK, who will be asked to complete a series of online questionnaires which gather data on eating, exercise and sleeping habits, as well as monitoring mental health by recording emotions such as stress and anxiety. Participants will also be asked to provide mouth swabs and stool samples so researchers can analyse their DNA and examine the bacteria living in their gut.

Experts will compare information from those who experience flare-ups within those two years, and those who do not, in the hope that they can identify everyday factors that may influence the onset of symptoms.

Researchers from the University of Aberdeen will provide expertise in diet and nutrition plus analysis of participants' gut bacteria during the study.

Chief investigator Dr Charlie Lees said: "Patients often ask us whether there are any changes to their diet or lifestyle that would help to better manage their symptoms. We hope the findings from this study will give us the evidence base needed to provide better advice for those living with these debilitating diseases."

You can still register to take part in the study! 


#IBDSuperHeroes raises money for Cure Crohn’s Colitis because 100% of donations go to patient centric research, to dramatically improve the lives of IBD patients, and ultimately find a cure for Crohn’s Disease and Ulcerative Colitis. Not one penny is taken from your donations to pay any admin fees or staff costs. Everyone that works for Cure Crohn’s Colitis, does so voluntarily.