This booklet has been produced to help you understand your child’s condition and the treatments that may be used. It also looks at some of the more general concerns that you may have as a parent, and includes suggestions based on the experiences of other parents of children with Ulcerative Colitis or Crohn’s Disease.
This booklet has been produced to help you understand your child’s condition and the treatments that may be used. It also looks at some of the more general concerns that you may have as a parent, and includes suggestions based on the experiences of other parents of children with Ulcerative Colitis or Crohn’s Disease.
I was diagnosed with Crohn’s disease at a very early age; 11-years-old to be precise. Since then I have been on a rollercoaster in terms of severity of symptoms and quality of life and this all while continuing with my college education. Just before the final year of my degree, I had a major flare and anything I tried to do to improve my health proved ineffective. I had exhausted all options in terms of drug treatment and with a narrow stricture in my colon, my only option was surgery.
Rakhee Patel at graduation
In October, 2013 I had a reversible loop-ileostomy formed.
I named my stoma Richard Parker after the tiger from ‘Life of Pi’ because Richard Parker was necessary for survival and his presence was temporary. I adjusted to having an ileostomy pretty quickly – I only had a stoma nurse show me how to tend to it one time and that was it! Although I recovered from my operation extremely well, it soon became apparent that this surgery was not enough for my body to shift into healing mode.
The symptoms of Crohn’s continued to worsen, and I was begging the surgeon to remove my whole colon to make my ileostomy permanent. And in November, 2015 that’s exactly what he did. At this point, I was weak emotionally, mentally and physically so recovery was slow and difficult. However, I can say that this surgery was worth it. Although I’m not symptom-free, I feel so much better than I’ve done in a long time! Honestly, I can’t even remember ever feeling this good. And my stoma? Most of the time I forget it’s even there, and in case you were wondering this one has remained nameless.
I pay a lot of attention to my mental health.
Controlling your mind while experiencing serious illness is no small task, but I certainly am learning. I am not ashamed to say I have seen three different counselors over the past couple of years all of whom have helped me in different ways. It took some much needed guidance from a few wonderful mentors, lots of self-study and regular meditation for me to finally reach a stage where I have learned (at least partially) how to control my emotions.
Photo by Fotograf Dorte Kjaerulff
I decided to shave my head to raise awareness.
In June, 2014 I organized a private fundraising event called Rakhee Is Shaving Her Head, in aid of Crohn’s & Colitis UK. It was a huge success and we raised thousands of dollars for a truly great cause, but this was not my main reason for shaving my head. I wanted to be heard. I also wanted to prove to myself that despite being ill, I could still make a valuable contribution to society.
I am proud to share my experience of living with a chronic illness and ostomy to show others with similar conditions that you can be completely open about such invisible issues and still be socially accepted.
How Soon After Ostomy Surgery Can I Resume Normal Activities?
This article is sponsored by
In the months after your surgery, exercising can really help speed up recovery, as the physical activity gives you more energy and makes you stronger and better prepared to deal with illnesses. Also, exercise can prevent complications related to sitting or lying down too long.
Are there limits to what I can do?
Until your ostomy and abdominal area are fully healed, physical activities can put you at risk for a hernia. A parastomal hernia is a bulge that forms if the bowel is pushed through a weak area in the abdominal wall, which normally holds the bowel in place.
To reduce the risk of a hernia, you should avoid any kind of heavy lifting (anything more than 7-8 pounds, really) for the first six weeks after your surgery.
What is a good activity I can start with?
Walking is a good way to start; it is an easy, gentle way to get back into exercise. Even though you may be used to playing sports, it can be a good idea to start out slowly – especially if you recently had your surgery.
Whether you walk inside (i.e. up and down stairs), or outside in the fresh air, it is an activity that you can gradually increase in both speed and distance. And soon your strength and endurance will return and you’ll be ready to do more challenging exercise, just like before.
Note: Check with your doctor or your stoma care nurse before you start exercising, or increase activity level. What’s good for one person may be too much for someone else.
How can I motivate myself to get started exercising?
It is never easy to start a new habit. But if you sense that your mind is trying to make excuses before you start exercising, try to make a point of not listening to the excuse and act on your decision instead. Instead, listen very carefully to your body afterwards – almost everyone feels better after exercise.
After surgery, it’s natural to want to get back to your everyday life as soon as you can. Going back to work may be part of that and, with a bit of planning, there’s no reason why it shouldn’t be possible.
Talk to your employer and discuss your options as soon as possible. It may be possible to return to work part time; this could be particularly helpful when you first go back as you may still feel tired and need time to get used to new routines.
A few weeks before you go back, do a few trial runs where you dress and plan your day as if you were going to work. Think about your diet and when and how many times a day you may need to change or empty your pouch. This will help you to establish routines and plan your day accordingly.
Most importantly, it will make you feel prepared.
Thinking ahead tips:
Speak to your employer as soon as you can
If possible, build up your working hours gradually
Check the available changing facilities at work
Pack a small changing bag that you can take discreetly to the bathroom
Do trial runs before you start work, thinking about diet and clothing, etc.
If your company provides healthcare insurance, check whether your condition affects the policy
For more information on finding an ostomy system that fits your body and lifestyle, visit Coloplast.
This information is for educational purposes only. It is not intended to substitute for professional medical advice and should not be interpreted to contain treatment recommendations. You should rely on the healthcare professional who knows your individual history for personal medical advice and diagnosis. Source - OSTOMYCONNECTION
How did you resume or start your exercise regime after your surgery?
Have any of you tried the remedies listed here? Did they work for you?
Saturday, 21 January 2017
Former Miss Scotland finalist on the battle with ulcerative colitis that changed her life
A FORMER model and Miss Scotland finalist claims her looks have been ravaged by a debilitating medical condition.
Paula O’Neill was one of Scotland’s most beautiful women until her stunning looks were dealt a blow by a debilitating disease which affects around 146,000 people in the UK.
She has developed ulcerative colitis, a condition which has no cure.
She was prescribed steroids to help, but they have a host of side-effects, including giving her a “moon face” appearance.
Paula says side-effects are the least of her worries, as she just wants to be well again.
With regards her changed appearance, the Dundee 25-year-old says: “People who know me didn’t know what to think. I’m sure some of them thought, ‘Paula’s really let herself go!’
“One minute I’m far too thin and the next I’m a big girl, but it’s the medication that caused it and, believe me, it’s a price well worth paying.”
PaulaPaula had enjoyed a glamorous career as a model, taking part in exciting assignments and swimwear photo-shoots.
Her striking looks and slim frame made her a Miss Scotland candidate.
Five years ago she took her place in the beauty pageant’s glittering finale in Glasgow and things couldn’t have looked better.
The former Emirates cabin crew worker had just landed a place to train as a nurse in Dundee when the disease hit.
Paula was in severe pain off and on for two years, with stomach cramps, vomiting, cold sweats, and weight loss.
“At one point I lost a stone in just four weeks,” she said.
“I was so ill my weight plummeted from 8st 9lb to 7st 9lb.
“I couldn’t eat. The most I could manage sometimes was an ice pole or some jelly.
“I was going to the toilet 30 to 40 times a day and the stomach pains were unbearable. I was so frail and ill.
“This had been going on for two years. No one knew what was wrong with me.”
She added: “I was always told it was irritable bowel syndrome and I shouldn’t eat spicy food or have fizzy drinks.
“I was so ill.
“I went to my GP again who got me an appointment at Ninewells Hospital for a colonoscopy, – where they put a camera inside you to see what’s happening.
“I was in hospital for nine days and was given steroids by IV.
But these weren’t working so I was put on a drug called Infliximab and, within a day, we knew this was working for me.
“Instead of going to the toilet 20 times a day – I was going five times. It was great.”
Model Paula O’Neill has suffered from a mystery illness. The medicine she needs has made her increase weight But she had to continue the steroids and gradually reduce the dose from 40mg to 5mg, and that’s what changed her appearance.
Paula said: “They have side effects such as ‘moon face’, ‘camel back’ and ‘apple belly’ but that’s the least of my worries. I just wanted to be well again.
“My face was all bloated and I do have a hump of retained fluid between my shoulder blades.
“Everything puffs up but that will go when I stop the steroids.
“I feel ulcerative colitis –inflammatory bowel disease – is such a taboo subject. It’s like an invisible illness and some people just think you’re lazy or being over-dramatic.”
For someone who used to work in an industry dominated by looks, it’s no doubt been difficult.
But, thankfully, Paula says people have been kind.
“I was never trolled or bullied about my changing looks, but I know people were curious,” she said.
“I heard comments through the grapevine, but I also heard that people I don’t really know we’re messaging people I do know, asking what was wrong with me.”
Paula O’Neill (Andrew Cawley/Sunday Post)Fortunately Paula knows the benefits of good make-up and a visit to the hairdresser.
“When I’ve got my hair done and my make-up on I look fine,” she added.
“I don’t look as though I have a chronic lifelong illness where day-to-day tasks, journeys or outings take a lot of preparation.”
There is no known cause, and no known cure, but with treatment it can be kept under control.
UC is one of the two main forms of inflammatory bowel disease, the other is Crohn’s disease.
Paula says it can easily “take over a sufferer’s life”.
“They don’t know what causes it and although it can be treated with medication, finding something that works for you can be a bit hit-or-miss.
“Hopefully I’m now much better and should be able to control this with an IV drip every eight weeks at hospital for at least a year.
“It seems to have taken over my life. I’ve been off work now for 14 weeks and I’ve been in and out of hospital.
“After my weight went down to 7st 9lb, I was put on steroids and it shot up to 9st 9lb.”
Paula modelling Throughout her fight, Paula has felt indebted to the NHS.
“The drugs I’ve been given cost thousands and thousands of pounds in other countries,” she added.
“And the care and attention I’ve had from the medical staff at Ninewells Hospital in Dundee has been fantastic.
“I’m now working in healthcare at Ninewells and the first time I was admitted was into my own ward.
“It should have felt strange knowing everyone, but I was just so grateful to be in hospital.”
With her symptoms now coming under control, fun-loving Paula says she’s greatly looking forward to her first summer sun holiday in ages.
“Next week, I’m going off to Ibiza on holiday and for the first time in my life I’m having to think about wearing a swimsuit,” she said.
“I’ve never given that a second thought before as I’ve always been a slim girl, a size six or maybe an eight.
“I just want to get better and live my life as normal and, thankfully, that might happen now.”
There is no cure for colitis
Ulcerative colitis (UC) causes inflammation and ulcers in the inner lining of the large intestine, where tiny ulcers develop which may bleed and produce pus.
There is no known cause, and no known cure, but with treatment, it can be kept under control.
UC is one of the two main forms of inflammatory bowel disease, the other is Crohn’s disease.
UC is a chronic condition which means it’s ongoing and lifelong.
Symptoms include painful stomach cramps, diarrhoea, tiredness and fatigue, feeling feverish or unwell, loss of appetite and weight loss.
Around 146,000 people in the UK – one in 420 – have this. It can start at any age but most commonly appears for the first time between the ages of 15 to 25. It affects men and women equally.
It is often compared to Crohn’s disease but they are completely different.
Crohn’s can affect any part of the digestive tract. UC only affects the colon and rectum.
For most sufferers the most important part of organising a day out, is to know where the nearest toilets are.
Patients living with Inflammatory Bowel Disease (IBD) have a strong message they’d like to share with the rest of the world: IBD is not the “stomach flu.” Not even close. Gastroenteritis, as the stomach flu is officially known, is most commonly caused by a virus. I will be using the terms interchangeably.
While viruses make you feel completely awful and will knock you down for a day or two, generally, they aren’t serious. Once your body fights it off, you can go back to your life as though nothing happened. Unfortunately, the same cannot be said of IBD.
Stomach Flu Symptoms
The most common symptoms of gastroenteritis are nausea, vomiting, watery diarrhea, a low-grade fever, and abdominal cramping. These symptoms can generally be managed with over-the-counter medication until the virus runs its course.
IBD Symptoms
IBD and the stomach flu share a few symptoms. But the symptoms with IBD are much more severe and last much, much longer. Symptoms include, nausea, vomiting, fever, abscesses, anemia, bloody diarrhea, constipation, eye problems, skin problems, severe abdominal cramping and urgency (to name a few). While IBD is treatable, that in no way means that it is easier to live with.
IBD Treatment
Treatment for IBD varies from person to person and can often take a very long time to figure out which treatment works well for which patient. This trial and error period of medications can go on for weeks or even years. The medications can also stop working after a little while and the patient may be forced to start the process all over again. Many patients will require surgery at some point.
Duration of the Stomach Flu
The duration of gastroenteritis generally lasts about three days. In more severe cases, it can last up to ten days. Again, because it’s a virus, it cannot be treated and must run its course. But the point is, the stomach flu has an end. It does not last forever and rarely does anyone with gastroenteritis end up in the hospital. Sadly, the same cannot be said of IBD.
Duration of Inflammatory Bowel Disease
Inflammatory Bowel Disease is a life-long condition. There are a lot of treatment options out there (and those treatments are constantly growing), but there are no cures for IBD. Some IBD patients are fortunate in that they flare once and once the disease is under control, they’ll never flare again (I actually know a couple of people like this). But the majority of patients go through periods of remission and flares. The IBD journey is more than likely a roller coaster ride for the rest of their lives.
Most patients that I know have multiple trips to the ER and hospital. Patients are often needing to go to the doctor to check their vitals, get their medications, have scans, colonoscopies, etc., etc. Some patients require permanent ports to deliver their medications.
Being Sick is Difficult
The bottom line is that being sick is NEVER fun. No matter what the illness. But living with a disease is much more serious. It’s a lot more complicated than gastroenteritis. We know you mean well when you’re comparing your virus to our disease… but we have to be honest… it’s extremely frustrating.
We seem to be in denial of the primary cause of Ulcerative Colitis, a brutal Inflammatory Bowel Disease. This video uncovers a cause and the cure. TO BE CLEAR, not the only cause!
2. Here is another one showing the more meat subjects ate, the more Hydrogen Sulfide was in their gut. If they ate twice as much meat, they got twice as much hydrogen sulfide. (http://ajcn.nutrition.org/content/72/...)
Study connecting Hydrogen sulfide to ulcerative colitis with quote:.
"Sulfide has been implicated in the pathogenesis of ulcerative colitis and may damage the colonic epithelium in several ways."
(http://www.nutritionjrnl.com/article/...)
Study that followed 60,000 people for a decade: "High total protein intake, specifically animal protein, was associated with a significantly increased risk of IBD" (IBD includes ulcerative colitis) (http://www.ncbi.nlm.nih.gov/pubmed/20...)
And here is another one: "A diet high in protein, particular animal protein, may be associated with increased risk of inflammatory bowel disease and relapses." http://www.ncbi.nlm.nih.gov/pubmed/22... (diet and risk of inflammatory bowel diseases).
Study in the american Journal of Clinical Nutrition states that, "Fiber could have one of several preventive roles either through an effect on microflora metabolism, on transit time, by diluting colonic contents, or by adsorbing toxic materials."(http://ajcn.nutrition.org/content/32/...)
Interesting article...What are your thoughts on this?
5 Things New Patients Experience (but are afraid to talk about)
The life of a newly diagnosed Inflammatory Bowel Disease (IBD) patient is filled with a lot of frightening and uncertain things. Even right before you are diagnosed, life can be frightening and uncertain. There are things you are too afraid to talk about. Things you don’t want to think about. But I say it’s important to go ahead and get these things established and out of the way so you can get on your way to establishing your new “normal” and the right treatment plan.
Diarrhea/Constipation
I realize that IBD is more than symptoms in the bathroom… but for many of us, that’s where the symptoms begin. Before I was diagnosed, I couldn’t say any of these words without feeling really embarrassed. Poo is taboo in most civilized societies. Who talks about their bathroom habits? I say, the sooner you start talking about it, the better. You need to be able to tell your doctor what’s going on. It can be embarrassing to talk about, for sure. Some people will ask you about your symptoms, and if you’re not comfortable telling just anyone, that’s ok. I would suggest you might even offer up the cause for the diarrhea/constipation. “I have bleeding, ulcers, and inflammation in my digestive system,” would be a good start.
Colonoscopies
I remember when I was going through the diagnosis process. I remember when my doctor wanted to schedule me for an emergency colonoscopy. Wait, what!? I fought it, too. I was in denial. I don’t need a colonoscopy! I’m too young for that!!! How very wrong I was. I did need to be scoped. I was just afraid. If they hadn’t scoped me, they never would have gotten me properly diagnosed… and I’m sorry to tell you, but as of now, it’s the absolute best and most accurate way to get diagnosed. No one, and I mean NO ONE, who is experiencing bad symptoms, is too young to get a colonoscopy.
Blood in Your Stool
Not every IBD patient experiences blood in their stool. For some, it’s just a little blood, for others, it’s a lot. GI bleeds can lead to anemia. Anemia can put you in the hospital… or worse. Again, this is something every patient needs to discuss with their doctor. Blood in your stool is not normal. Even with IBD. Blood in your stool is a warning sign that something serious is going on and you need to make sure you and your doctor work together to get it resolved.
Exhaustion
When your body is fighting a chronic illness, it saps you of your energy fast. This can be frustrating. You may find it hard to tell other people that you are tired all the time. It might be because you don’t want to admit it. Or maybe you are afraid they won’t believe you. Whatever the reason, you can’t deny the fact that you get tired quicker than the average person. And you know what? It’s not your fault.
Guilt
It’s easy to feel guilty when you’re sick a lot. You can often feel like a burden to your family and friends. Or you feel guilty for having to skip out on events or parties. Please try to give yourself a break. Be gracious. You are fighting a hard battle. You have to make adjustments. It’s ok to not feel ok sometimes. It’s ok to ask for help! There’s no shame in it. Try not to let it get you down. And remember you are not alone in your battle. There are 5 million people world-wide who are living with IBD every day. Support is out there.
If I were to give you any piece of advice, it would be this: be open and honest with not only others, but yourself. Realize your limitations and accept them. You are not a bad person for being sick. It isn’t your fault. In your moments of weakness (and you will have them), remember what you do have, instead of what you lost because of your illness. Remember who your true friends are. And listen to your body. It is designed to tell you what you need when you need it.
Mesalazine - the most well known brand of which is Asacol is the first line of attack in both the treatment and maintenance of Ulcerative Colitis. It is part of a family of drugs called aminosalicylates - and can be delivered either orally or as an enema (know as topically - to the "outside" surface of the bowel). The drug is not effective immediately - and it is usually 2-3 weeks before the full benefits are seen.
Oral Mesalazine/Asacol
Oral mesalazine tablets used to treat Ulcerative Colitis are coated with an enteric coating. This coating protects the drug through the stomach and small intestine - and releases it when it reaches the less acid environment of the Colon. This form of mesalazine works best when the stools are reasonably solid - as when there is severe diarrhea the drug often passes through the colon with the enteric coating intact - so the drug isn't released.
Mesalazine Enemas
Mesalazine enemas are used to get the mesalazine directly in contact with both the rectum and descending colon. The best are probably Asacol foam enemas - capable of reaching nearly the whole of the descending colon. So long as these enemas can be retained for a reasonable time before you pass them they are extremely effective. They are particularly useful in the case of diarrhea - where oral mesalazine can become less effective
Colazide
Colazide is a more precise way of delivering mesalazine to the colon than enteric coated tablets. The enteric tablets rely upon change of acidity to release the drug - meaning that it can often be released in the small intestine. Colazide is mesalazine chemically bound to prevent it's absorption. Bacteria only found in the colon attack this chemical bond - and release the mesalazine.
There is fairly high confidence that there is little connection between poor diet and Ulcerative Colitis/Inflammatory bowel disease (IBD). This should not be confused with Irritable Bowel Syndrome (IBS) - caused almost entirely by a poor diet high in processed foods and low in dietary fibre.
In spite of this diet has a large part to play in minimizing the effects of Ulcerative Colitis - and in the treatment of flare-ups. Care must be taken though with Colitis - as a good diet for a person with colitis differs slightly from that of a person without colitis.
There is much confusion in the advice given to people about dietary fibre and ulcerative colitis. To understand this properly it is important to appreciate there are two distinct types of fibre. One - soluble fibre should be encouraged when suffering from colitis - the other - insoluble fibre tends to inflame colitis and should be avoided.
Insoluble Fibre - Detrimental for Colitis
Insoluble fibre is generally bad for ulcerative colitis/IBD sufferers. This is the type of fibre that most people would associate with a high fibre diet. Examples of this type of fibre include -
Wheat bran/wholemeal bread/bran flakes etc.
Cabbage
Broccoli
Sweet corn
Skins peel of vegetables such as apples and grapes
This type of fibre passes through the whole of the digestive tract without being digested - and hence has a tenancy to adhere to the wall of the colon when it is inflamed. This irritates the colon - and hence will aggravate any colitis. As a rough guide if you can see particles/undigested matter in the stool this is insoluble fibre.
Soluble Fibre - Beneficial for Colitis
Soluble fibre is very helpful for colitis and differs from insoluble fibre in that it is broken down/digested in the large intestine/colon. This produces a soft stool and good motions - but does not produce the type of particles that adhere to the bowel wall and cause inflammation. Good examples of soluble fibre include
The body of fruits - e.g. peeled apples, peeled pears
Peeled Vegetables - e.g. peeled potatoes and carrots
Oat bran - e.g. porridge/Ready Brek
White rice
Fish Oils and Ulcerative Colitis
Fish oils - especially from oily fish such as sardines and sild have been shown to have a beneficial effect on colitis. This is because they help to reduce inflammation generally - and they also have a topical effect on the bowel as they pass through. In order to include fish oils in the diet it is recommended that actual fish be used rather than dietary supplements. Sardines especially are very cheap, nutritional - and contain large amounts of the required oils.
Dairy products and Ulcerative Colitis
Those that suffer from ulcerative colitis should avoid excessive amounts of dairy products such as cheese/cream etc. This doesn't mean that they have to be avoided totally - just some common sense used. I would suggest that probably about 2-3 ounces in a day is about the limit. Quantities beyond this are likely to lead to lactose in the colon - which will encourage unhelpful bacteria and inflammation.
Foods to Avoid when you have active Ulcerative Colitis (Flare Up)
There are a number of foods which are best avoided during a flare up of Ulcerative Colitis - or when Colitis is active (i.e. blood or mucous in the stools). These are mainly foods that either include a high amount of insoluble fibre - or very high amounts of dairy fats-
Cabbage/sprouts
Cauliflower
Broccoli
Sweet Corn
Mushrooms
High Bran fibre items - such as wholemeal bread, and high fibre cereal
Raw onions
Tomatoes - especially the seeds
Soya Protein (TVP)
Onions - Especially raw onions
Cheese/cream (tends to cause excess acid/irritation in the gut)
Some of you may like or not like this clip, but what it tells me is how many people are looking for more information on this...the number of people that are affected by IBD. Everyone has their own story...whether they are suffering themselves or affected by a friend or close family member who is.
What do you think of the clip? Let me know if you watch the full documentary!
Wednesday, 11 January 2017
Experiencing some bowel trouble?
Not been to the doctors yet?
When you start experiencing problems, it's embarrassing and if you're anything like me, you'll think 'Oh it'll be OK and it'll be fine in a few days'.
Well, early on, even after you've been to the doctors, it will pay you to start keeping a food diary to help identify patterns and any specific foods that can trigger the feeling.
Maintaining a healthy lifestyle – eating well, getting enough exercise, and keeping bad habits to a minimum – has benefits for everyone. When you have IBD leading a healthy lifestyle can also help manage your symptoms and keep you feeling well.
People with IBD will often have:
Loss of appetite: As a result of feeling unwell, pain and nausea as well as diarrhoea
Weight loss: As a result of diarrhoea and poor appetite
Altered fluids, nutrients, and electrolytes ('salts') absorption due to inflammation in small intestine and/or colon
Diet-related flare-ups (in some people)
A well-balanced diet can help to prevent nutritional deficiency, particularly in patients with Crohn’s disease.
Diet is not the cause of IBD, but certain foods may trigger a flare-up or make symptoms worse. Those triggers can vary widely from person to person and no one type of food or beverage aggravates symptoms for all people with ulcerative colitis or Crohn’s disease.
Although there is no ‘magic’ diet that works for everyone with IBD, a healthy diet generally will help you manage your IBD and reduce the effects of flare-ups.
A healthy diet is more about what you keep in your diet, rather than what you cut out. If you exclude foods but find no real difference in your symptoms then you can try to reintroduce them back into your diet.
To determine which foods tend to provoke symptoms and flare-ups, it can be useful to keep a food diary. This can help you to see how your diet relates to your symptoms.
In general, people who have either ulcerative colitis or Crohn’s disease should:
Eat smaller portions regularly. Divide the daily intake into 5-6 smaller portions and eat every 2-3 hours. This is better than eating less frequently but larger portions. Smaller portions will help to reduce the load on the digestive tract, helping it to digest the food better
Reduce intake of fat. Fats can increase instestinal peristalsis and so crampy pains. Reducing oils, butters, hardened fats and margarines, cream but also desserts and filled biscuits can help to reduce fat intake
Reduce intake of simple sugars. These are found in honey, desserts, cakes and concentrated fruit juices. They may cause or increase the chance of diarrhoea
Reduce or avoid intake of milk and dairy products. Milk and dairy products (milk, cream and processed cheeses, less in yogurts both full-fat or low-fat) can aggravate symptoms of IBD. They should be avoided during flare-ups and then gradually re-included in the diet according to your personal tolerance for dairy products
Avoid preserved meals and semi-finished products
Avoid savoury and spicy meals
Avoid artificial sweeteners – in particular sorbitol – that may cause or increase the chance of diarrhoea
Avoid nuts and seeds
Avoid greasy and fried foods, which can cause gas and diarrhoea
Restrict foods high in fibre, such as fresh fruits and vegetables and wholegrains, as these can aggravate symptoms (especially when the intestines are inflamed). During a flare-up it is necessary to avoid oat flakes and corn flakes as well as legumes, vegetables and fruit with high fibre content (in particular cabbage, sprout, citrus fruit, plums, grapes and apricots). Served fruit and vegetables need to be peeled, cleared of seeds and heat-treated (e.g. stewed apples are suitable)
Cook high fibre foods before eating: Rather than eliminating these necessary foods from your diet, thoroughly cook fruits and vegetables, and avoid eating them raw
Avoid foods that can cause gas such as beans, cabbage, broccoli, caffeine, and carbonated drinks
If a particular food causes problems, talk to your healthcare provider or dietician before permanently eliminating it from your diet. You may need to add a vitamin or mineral supplement to replace necessary nutrients.
Next steps:
Speak to your IBD specialist to see whether you would benefit from discussing your own situation with a dietician or nutritionist
Read up on healthy eating guidelines
Create a shopping list incorporating foods you have learnt about and think you may enjoy
Discuss with your family or housemates what changes you may be making to your diet
Do I need to eat differently during a flare-up?
During a flare-up, you may want to give your intestine a “rest” and restrict your food intake. However, as a result, you may miss out on important nutrients, in particular, proteins that help the body to cope with the inflammatory process. Moreover, some medicines (mainly steroids) may interfere with protein metabolism.
You may find it easier to digest food if it is mashed up or pureed.
Once your flare-up has been resolved, it is important to reintroduce any food you avoided in the space of 3-5 days one at a time.
Is there a special way to cook my food?
To help to reduce pressure on your digestive system, foods should be heat-treated and easily digestible. Stewing, steaming, braising or moderate grilling are all good ways to cook food. You should avoid frying where possible.
What is a healthy, varied diet?
The basic principles for diet in IBD are the same as those for the rest of the general population. This means that the diet should include a mixture of carbohydrate-containing foods (potatoes, pasta, rice, bread, oats, corn), protein-rich foods (meat, fish, milk, eggs and cheese) and lower amounts of fat, particularly animal fat. Together with fruit, vegetables and fluids, these provide the energy, vitamins and trace elements that are necessary to ensure good health.
Should I avoid milk?
Some people cannot properly digest lactose, the sugar present in milk and many milk products, regardless of whether they have IBD. This is because they do not make enough of a digestive enzyme, called lactase.
Poor lactose digestion may lead to cramps, abdominal pain, gas, diarrhoea, and bloating. If you are unsure about whether you have lactose intolerance, ask for a “lactose tolerance test” to identify the problem.
If you have ulcerative colitis or Crohn’s disease, you can also try limiting dairy products and seeing if that makes a difference. If you think you are lactose intolerant, you can try adding lactase supplements to help your body digest this type of food.
Dairy foods are a good source of nutrition, in particular calcium and protein, so you should, where possible maintain intake of this food group.
Do I need to take extra vitamins?
People with Crohn’s disease in particular may need to take vitamin supplements since the condition affects the small intestine, the area responsible for absorbing vitamins from food.
Vitamin B12 is absorbed in the lower ileum. If you have ileitis (Crohn’s disease that affects the ileum), you may need to take injections of vitamin B12, because your body cannot absorb enough from your food.
If you are on a low-fibre diet, you may not be getting enough of certain vitamins common in fruits, such as vitamin C and may need to take a supplement.
In general, it is probably worthwhile for most people with IBD to take a multivitamin preparation regularly.
If you suffer from maldigestion or have undergone intestinal surgery, other vitamins, particularly vitamin D, may be required especially in non-sunny countries, and calcium intake may be necessary. Steroid use and Crohn’s disease itself are linked to bone thinning and osteoporosis, so adequate calcium and vitamin D are very important.
In general, people with IBD do not suffer from mineral deficiency. However, calcium, phosphorus, and magnesium supplements may prove necessary in people who have extensive small intestinal disease or who have had substantial lengths of intestine removed through surgery. Iron therapy is helpful to correct anaemia. Oral iron turns the stools black, which can sometimes simulate intestinal bleeding.
How much fluid should I be drinking?
Since people with inflammatory bowel disease often experience diarrhoea, there may be a risk of dehydration and eventually kidney problems. Initially, dehydration and salt loss create a feeling of weakness. If your fluid intake does not keep up with diarrhoea, your kidney function may be affected.
Patients with Crohn’s disease can have an increased incidence of kidney stones. For these reasons, people with IBD should consume ample fluids, especially in warm weather when skin losses of salt and water may be high.
Are there supplements that I can take?
At present, there are numerous experimental studies to see if supplements have a benefit in inflammatory bowel disease. Examples include:
Fish or flaxseed oils, in the diet or as supplements, have helped fight the inflammation in IBD
Complex carbohydrates (e.g. psyllium) that are not digested by the small bowel, may stimulate the bacteria in the colon to produce short-chain fatty acids, which help the mucosa (the lining) of the colon to heal itself
L-glutamate is believed to nourish the lining of the small intestine and may be helpful in healing in early Crohn’s disease
Probiotics (e.g. Lactobacillus preparations and live-culture yoghurt). “Good” bacteria may help to restore balance to the intestinal bacterial (microflora). Live yogurt can be very helpful in aiding recovery of the intestine
There is still a lot of research needed to see how such supplements may help in both ulcerative colitis and Crohn’s disease.
Treatment with certain minerals (selenium, calcium), vitamins (folic acid) and medications (the 5-ASA drugs seem to fulfil this role for many with IBD) to prevent colorectal cancer is still a developing field, and there will be more about this as new research studies are published.
Exercise
If you are experiencing a flare-up of your ulcerative colitis and Crohn’s disease, you may not feel like exercising, but you should not use your symptoms as an excuse not to exercise.
Staying active is good for you psychologically as well as physically. Osteoporosis, a condition where bones become weak and brittle, is a possible complication of IBD. There is evidence to show that exercise builds up bone and helps to prevent osteoporosis. If you are able to exercise, you will not be at risk of ‘over-doing it’ just because you have IBD. You will have a pretty good idea of what types of exercise you can and cannot do.
Remember:
You don’t have to engage in intense activities to gain benefits
Less intense activities (many of which can be done near toilet facilities) can include stretching and toning, walking, swimming, cycling and golf
Engaging in more strenuous activities regularly when you are feeling well is perfectly OK – there are a number of elite athletes with IBD whose condition doesn’t prevent them from competing at the highest level
It's interesting to me that this suggests one of the environmental factors that can predispose someone to having Crohn's is antibiotics.
I believe my Ulcerative Colitis was triggered by strong antibiotics. Bizarrely, I am now on antibiotics for life having developed bronchiectasis, following my colectomy.
Have you any of you felt a connection to your illness being caused by antibiotics?
Monday, 9 January 2017
Introduction - Inflammatory Bowel Disease
Inflammatory bowel disease (IBD) is a term mainly used to describe two conditions, ulcerative colitis and Crohn's disease.
Both ulcerative colitis and Crohn’s disease are long-term (chronic) conditions that involve inflammation of the gut (gastrointestinal tract).
Ulcerative colitis only affects the colon (large intestine), while Crohn’s disease can affect all of the digestive system, from the mouth to the anus.
It’s sometimes difficult to tell the difference between the two main types of IBD. If this is the case, it’s known as indeterminate colitis.
There are other, less common types of IBD called collagenous colitis and lymphocytic colitis. The inflammation can only be seen using a microscope, and so they’re known as microscopic colitis.
What are the symptoms?
The main symptoms of ulcerative colitis and Crohn’s disease are similar. They include:
Not everyone has all of these symptoms, and some people may experience additional symptoms, including vomiting, anaemia and high temperature (fever).
The symptoms of IBD can come and go. People may experience periods of severe symptoms (flare-ups), and go through long periods when they have few or no symptoms at all (remission).
The exact causes of ulcerative colitis and Crohn’s disease are unclear. It’s thought that several factors may play a part, such as:
genetics – there is evidence that you are more likely to develop IBD if you have a close relative with the condition
disruption to the immune system (the body’s defence against infection) – inflammation may be caused by the immune system attacking healthy tissue inside the digestive system while fighting off a virus or bacteria
There is currently no cure for ulcerative colitis or Crohn's disease. Treatment aims to relieve symptoms and prevent them from returning.
Mild ulcerative colitis may not need treatment as symptoms can clear up after a few days.
Medicines used to treat ulcerative colitis or Crohn's disease include:
aminosalicylates, or in more severe cases, corticosteroids – to reduce inflammation
immunosuppressants – to reduce the activity of the immune system
An estimated 20% of people with ulcerative colitis have severe symptoms that often don't respond to medication. In these cases, it may be necessary to surgically remove an inflamed section of the digestive system.
Around 60-75% of people with Crohn’s disease will require surgery to repair damage to their digestive system and treat complications of the condition. Read more about treating ulcerative colitis and treating Crohn’s disease.
Who is affected?
It is estimated that IBD affects about one person in every 250 in the UK. There are around 146,000 people with ulcerative colitis and 115,000 with Crohn's disease in the UK.
IBD is usually diagnosed in people in their late teens or early 20s, but can affect people of any age.
IBD is more common in white people than in black people or those of Asian origin. People from an Eastern European Jewish background are most likely to be affected by IBD.
If you’ve recently been diagnosed with Crohn’s Disease or Ulcerative Colitis, you'll be hearing a lot of new words that might sound like a different language.
Crohn's and Colitis UK have a great 'A-Z' listing that will explain all the main medical terms used in the diagnosis and treatment of Inflammatory Bowel Disease (IBD). Click here.
When I was diagnosed with Ulcerative Colitis, I was in my thirties, married with a young family. I slowly deteriorated and drifted in and out of depression - why me...why now...will I be healthy enough to enjoy life with my kids as they grow up? I'm pretty positive on the whole, but inside, I didn't manage those feelings very well.
I'm not sure if meditation or music like this would have helped, but I wish I had tried it. They are certainly helping life taste sweet now!
Have you any stories about how you cope or have coped with similar 'Why me?' feelings?
Can turmeric prevent or treat cancer?
This page is about turmeric and cancer. There is information about
Turmeric is a spice that is often used as a food flavouring in Asian dishes. It belongs to the ginger family. It is also known as Indian saffron, jiang huang, haridra, haldi, as the major ingredient of curry powder 2, and as a bright yellow orange food colouring agent (E100).
Turmeric grows in many Asian countries such as India. It has been used for many years in some herbal remedies. The main active ingredient is curcumin or diferuloyl methane.
Currently there is no research evidence to show that turmeric or curcumin can prevent or treat cancer but early trials have shown some promising results.
Research into preventing cancer
A phase I clinical trial looked at giving curcumin to 25 patients with pre cancerous changes in different organs. This study seemed to show that curcumin could stop the precancerous changes becoming cancer.
Research has also shown that there are low rates of certain types of cancer in countries where people eat curcumin at levels of about 100 to 200 mg a day over long periods of time.
Research into treating cancer
A number of laboratory studies on cancer cells have shown that curcumin does have anticancer effects. It seems to be able to kill cancer cells and prevent more from growing. It has the best effects on breast cancer, bowel cancer, stomach cancer and skin cancer cells.
A 2007 American study that combined curcumin with chemotherapy to treat bowel cancer cells in a laboratory showed that the combined treatment killed more cancer cells than the chemotherapy alone.
A 2007 American study in mice seemed to show that curcumin helped to stop the spread of breast cancer cells to other parts of the body.
Doctors think that curcumin stays in the digestive system and is absorbed by the cells in the bowel. To find out more, a small study in the UK looked at how curcumin is absorbed from the human gut into liver cells. This study looked at how much of the curcumin is absorbed into both cancer cells and normal cells. This was a very small study of people with bowel cancer that had spread to the liver. They were given curcumin for 7 days before surgery.
During the surgery doctors removed liver tissue and they then then measured the levels of curcumin in the tissue. The results showed that the level of curcumin absorbed into the liver was not high enough to have any anticancer effect. The researchers suggested that future clinical trials of curcumin should focus on preventing bowel tumours. Several studies have shown that curcumin taken as capsules does get absorbed by the gut and is present in the blood. But the amount in the blood is small.
An American phase 2 study reported in 2008. 25 patients had curcumin treatment and 21 had tumours that could be measured. In 2 patients their tumours shrank or remained stable. In some patients their levels of particular immune system chemicals that destroy cancer cells went up. But the researchers found that blood levels of curcumin were very low because it is not well absorbed from the gut. Scientists have since developed injectable, fat soluble forms of curcumin which may improve the results.
These studies look promising but we need to do more clinical trials in humans before we will know if curcumin has any potential to treat cancer in people.
A trial is currently under way in Puerto Rico to find out whether curcumin can shrink precancerous growths in patients with a genetic disorder that greatly increases their risk of bowel cancer.
It is important to remember that turmeric used in cooking is very safe. But we don't know how safe curcumin is when used for medical reasons. So far, research studies seem to show that it causes few or no side effects. But we don't know much about the side effects of taking it in large amounts to treat or prevent cancer.
There have been some reports of stomach pain if too much turmeric is swallowed and skin problems if it is taken for a long time. For these reasons we recommend that if you use curcumin for reasons other than in cooking, you should talk to your doctor first.
Risks of turmeric supplements
The Medicines and Healthcare products Regulatory Agency (MHRA) has issued a warning about the turmeric based food supplement Fortodol (also sold as Miradin). Fortodol has been found to contain the strong anti inflammatory drug nimesulide. Nimesulide can cause serious damage to the liver and is not licensed as a medicine in the UK. The Food Standards Agency in the USA states that taking products that contain unknown amounts of nimesulide could be very harmful.
Fortodol and Miradin are sold in the UK and on the internet as food supplements. The FSA advises anyone taking these products to stop doing so immediately, and contact their doctor if they have any signs of liver disease. The signs include jaundice, dark urine, nausea, vomiting, unusual tiredness, stomach or abdominal pain, or loss of appetite.
Interesting article on turmeric! My Mum swore it had healing powers when I was a kid and it was always the 'go to' first aid product for cuts and grazes! Have you any experience of being treated with curcumin - good or bad?
The uncomfortable and distressing condition known as IBS, or Irritable Bowel Syndrome, is something that affects about a third of the population at some time.
IBS is so disturbing for around 10 per cent of the population that they are forced to seek medical assistance.
WHAT EXACTLY IS IBS?
Irritable Bowel Syndrome is the name given to a collection of uncomfortable and often distressing conditions that cause disruption of the digestive system - the gut. Symptoms include stomach cramps, spasms, pain, diarrhoea and constipation, bloating, swelling, and trapped wind.
Though it can affect anyone at any age, it most often affects those below the age of fifty. It also affects women more than it affects men.
IBS can cause such disempowering and distressing feelings that it has been linked to increased suicidal behaviour.
CAUSES OF IRRITABLE BOWEL SYNDROME
IBS is provoked when the nerves and muscles of the bowel fail to function as they should.
Medical researchers and doctors are unsure of the actual cause of IBS. It is acknowledged that stress and anxiety play a role, and also hormonal imbalances can play a part. Certain foods can also trigger a sensitivity that aggravates this condition.
When consulting your doctor with symptoms of IBS, he or she may recommend a variety of different tests. These could include tests such as those for lactose intolerance, and food sensitivities. Other laboratory tests and examinations might include - X-rays, CT scans, colonoscopies, and lower GI tests.
While the medical approach focuses on the symptoms themselves, there is little or no emphasis on the cause of those symptoms.
One 2011 study conducted by the Mayo Clinic found that the effects of psychological and emotional traumas may contribute to IBS in adults. Further, researchers from London's Holloway University confirmed that stress, anxiety and emotional upset worsens the symptoms of IBS.
HYPNOTHERAPY FOR IBS
There seems little doubt that the mind plays an important role in IBS - and so the mind must be involved in any solution to the problem.
Research has demonstrated that hypnosis therapy - hypnotherapy - is an effective means of managing and treating Irritable Bowel Syndrome.
Using advanced hypnotherapy techniques and strategies, IBS can be successfully treated and the discomfort greatly eased. The hypnosis therapy process usually involves four to six sessions, depending on how you respond, with perhaps one or two follow-up sessions a few months later.
The good news is that if you, or someone you care about, have been experiencing Irritable Bowel Syndrome - IBS, then advanced hypnosis therapy can provide real help.
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