I recently attended an event at my local hospital about Inflammatory Bowel Disease or IBD. I went with my mum, Sylvia Waddington and we also met one of our Glorious Food Members at the event.
It was certainly an interesting evening.
We had a talk from Dr Alan Wiles, a Gastroenterologist at the hospital. He discussed several different studies, graphs and results of these studies into Crohn’s and Colitis, including:
- The possible causes of IBD
- Is IBD genetic
- Medications and their efficacy
- The financial cost involved
- Support for IBD patients
- Dietician support and the FODMAP diet
#I wanted to share as much information as I could with you about the evening, however, I am not an expert in IBD and this is only the information that I took in from the evening from the notes I made during the night.
Possible causes of Crohn’s and Colitis (IBD)
That being said, it seems that IBD is partly caused by a failure of the body to respond to a normal immune response, therefore it affects the immune system.
Identical twins are likely to both have IBD if one has it, so there is a familial link, albeit not very strong.
Environmental conditions seem to be affecting IBS in the form of Industrialisation. Dietary compounds are found to be mixed with industrial pollutants which is poisonous to the body.
They have linked the role of the microbiome in IBD. (Our Microbiome is the genetic material of all the microbes – bacteria, fungi, protozoa and viruses – that live on and inside the human body. Fun Fact our Microbiome can weight up to 5lbs) .
The point is studies show that if a child has antibiotics in first 2 years of life they are 2-4 times more likely to have IBD. The use of antibiotics seriously changes the gut bacteria early on in life.
Other worrying information was that taking part of gut out won’t necessarily remove possibility of Crohn’s. However, with a Stoma Bag there is no chance if future Crohn’s. This means a lot of Crohn’s sufferers are opting to have a Stoma bag fitted.
Bacteria in the faeces causes Crohn’s disease within the bowel. IBS clients have increased Ecoli. The bad bacteria goes up. Good bacteria goes down.
#My thoughts on this are, if this is the case, then why not alter the gut bacteria by changing the diet according to the persons specific requirements?
Diagnosis of IBD is also very important however, shockingly:
- 70% of people waited 1 year for diagnoses
- 50% over 2 years
During this time more scarring, more fissures, more irreparable problems! The more likely hood of having to opt for surgery.
Checking for IBD early on and having Colonoscopy and the right blood tests is crucial as you can feel fine but still have issues. Early diagnoses is really key in getting any help that is useful.
#This is where Glorious Food could really help IBD sufferers. Repairing the dietary intake to suit the individual can help to ease the pain and discomfort whilst waiting for a professional diagnosis, hopefully reducing the need for surgery down the line.
The role of medication for IBD is to halt parts of his immune system and stop white blood cells from getting into the gut. Now for the bad news.
Only around 50% of people with IBD will benefit from drugs = mostly less than that
If one drug doesn’t work, the next one has even less chance of working, then the next one has even less chance than that of working. And so on.
Of people suffering with IBD, only 43% of people with Crohn’s and 52% Ulcerative Colitis react well to medications. Some get worse. Some are all over the place. Some have occasional flare ups.
And only 39% of people with IBD will go into Remission and not be bothered with the condition again. Not much help for the 61% that the medication doesn’t work for, but enough for them to still offer the medication. It is certainly a lot more complicated than I originally thought…
Money, Money, Money!
Dr Wiles then discussed the cost of drugs. In the UK, some IBD drugs are as little as £400 a year. However, in the USA the same drugs costs almost 10 times more.
This is important because the UK & USA are entering into a trade deal. Therefore our UK drugs are going to be 10 times more expensive very soon. I believe the point Dr Wiles was trying to make was that the NHS won’t be able to fund these drugs.
#Even more reason to change your diet in the first place and help normalise your gut bacteria.
Future for IBD patients at the hospital
There may be a blood test coming soon that can differentiate between IBD1 and IBD2 (normal or severe) This will help in knowing what drugs to try for which group in the first place.
This means that rather than getting everyone in teh cycle of drug number 1, then trying drug number 2 (which they know has less efficacy after drug number 1). They will be able to go straight to drug number 2 for the less severe IBD cases. Which may work better without having first tried drug number 1.
One thing is clear. More studies need to be conducted on this.
So far, only Inflixomab has helped 39% of people to get to remission of IBD. The rest of the medications are a much lower percentage.
Basically, if you fail to respond to one drug, you’ve less chance of responding to the next one.
Support for people with IBD
The good news is that our local hospital provides tonnes of support in the form of IBD Nurses and even has an Advice Line.
Advice Line NHS (01553) 214642
There is a stay taking place for people with IBD to ensure better help understanding of IBD and help in the future. Google The IBD BioResource and join if you have IBD. Further research and studies can only improve the chances of people with IBD leading a more comfortable and normal life.
The IBD Team are:
The QE also have an Emergency clinic every week. You can be seen within a few days.
There is also a Patient Panel at the hospital to keep them informed of what people with IBD want and need. Other help and support available is:
- IBD Friends West Norfolk and Fens FB page (soon to be renamed)
- There is an IBD Newsletter you can sign up for
- There’s lots of support out there
- Information on the Crohn’s and Colitis UK (CCUK) website on travelling with IBD
- You can also order your‘CANT WAIT CARD’ from CCUK website
Advice to IBD patients is to be open and honest about how you’re feeling. No-one can support you if they don’t know how you are doing.
Current NHS Dietary Advice
The Hospital does have a Dietician and you can get ‘dietetic’ support at any time with your IBD
If intestines are inflamed with IBD then they’ll be impaired in processing nutrients.
The hospital dietician offers general dietary advice (5 portions a day, not 10) and provides an individual services for each person.
LARGE QUANTITIES OF ALCOHOL CAN CAUSE FLARE UPS OF COLITIS.
You may be offered a “LIQUID ONLY DIET” for 2-8 weeks to get help get into remission. It was not clear what would be in this diet.
The FODMAP diet is also sometimes recommended. It can work for some people. This is usually for 4-8 weeks followed really strictly then REINTRODUCE foods and seeing what causes a problem – up to 12 weeks to reintroduce foods back into the diet.
So there you have it, I hope you found it useful.
Once again, this post is based on the notes I took during the evening and something I wanted to share with you.
#In all honesty I found it interesting but a tad depressing. There are so many people I would like to help and it is clear that so much more research needs to be done. I started Glorious Food to provide people with an alternative option (i.e. food) before, during or after the methods currently on offer with our very over stretched NHS.