Inflammatory Bowel Disease: The Voice of IBD

Inflammatory Bowel Disease: The Voice of IBD

The Voice of IBD

Don’t miss The Voice of Inflammatory Bowel Disease – A manifesto for young people, created by young people aged 18 – 30 living with IBD in Ireland.

The manifesto not only gives an insight into what it can be like living with IBD, but also identifies critical challenges for this group and calls for action by the Government, employers, healthcare professionals and the general public.

An initiative of the Irish Society for Colitis and Crohn’s Disease (ISCC), this manifesto was supported by Abbott and Vhi Healthcare.

 

Inflammatory Bowel Disease Pictures Slideshow: A Visual Guide to IBD on MedicineNet.com

Inflammatory Bowel Disease Pictures Slideshow: A Visual Guide to IBD on MedicineNet.com

Blog Statements-Are real life accounts of peoples experiences with IBD which has been researched from IBD sufferers

I feel the main foods that tend to aggravate my stomach are the following:

Lactose

Soya

Gluten

Garlic

I have also been told to stay off oranges, plums and pork.

It is such a two sided illness.

Some days are fine and the next you can be in such pain.

And you may have eaten the same food on both days.

I was checked for gluten intolerance to which I got a negative result however I do feel pain when I eat gluten product sometimes so I may possibly have gluten sensitivity.

I feel the worst about my condition is you never know what your bowel movements will be like, for example you may be constipated and passing blood in your stools and within the hour you have diarrhoea.

Therefore you avoid foods such as bananas which are said to promote constipation but also avoid physilium which prevents constipation as you do not know what your bowel movements will be like.

Symptoms:

Cramps

Sharp pains in stomach

Bloated

Trapped wind

Nausea

Advice:

I feel that peppermint tea relaxes my stomach immensely and works better then the numerous tablets i have been on.

For those suffering from constipation, drinking a cup of warm water in the morning helps bowel movement.

If no diagnosis has been reached, endoscopy and colonoscopy can help eliminate or identify some possible causes.

For me it eliminated gluten intolerance, no polyps  and also did a biopsy to identify cancerous cells.

Woman, 21


I was first diagnosed with Crohn's Disease 34 years ago at the age of 21. The first symptoms I had were abdominal pain, diarrhoea, loss of appetite and weight loss. Occasionally I felt nauseous and feverish. I went to my G.P. first and he took some blood tests. He made an appointment for me to see a Consultant. I was admitted to hospital a few weeks later. I had several different tests done-Endoscopy, Barium x-ray, Colonoscopy.

Eventually I was diagnosed with Crohn's Disease and put on medication. Since that I have had several flare-ups and frequent trips to the hospital. When I have a flare-up I find if I cut out high fibre food things improve slightly. I try to keep to a fairly bland diet, no fried or greasy food, nothing spicy and no junk food. But unfortunately sometimes it does not matter what diet I stick to it does not make any difference.

In 1996, I had major surgery where I had part of my bowel removed. There are times when I find it difficult to cope with the unpredictability of IBD in my everyday life. There are frequent trips to out patients and several admissions. I find travelling abroad on holidays difficult.

Eating out in restaurants can be particularly diificult everything seems to be hot and spicy and this can be very restrictive. I have also found it difficult to hold down a permanent job as tiredness and lack of energy are a major problem for me.

It can be a very debilitating disease both physically and emotionally. But despite all this I think I cope fairly well with Crohn's Disease.

Woman, 56


I was diagnosed with Ulcerative Colitis around 5 years ago now. I had never heard of this disease before and was very unsure of what it actually was or what it would entail for me for the rest of my life. About 10 years ago I was diagnosed with rheumatoid arthritis around the age of 15 this meant frequent trips to the doctor and it was on one of these visits about 5 years ago that I just happened to mention that i was passing blood.

As it was a very sensitive subject and I did not know what exactly was wrong with me I was reluctant to seek advice. Eventually I was sent in for a colonoscopy where I was told I had ulcerative colitis. I was given a prescription and sent off, not knowing what this disease even was.

As time went by I continued to take the tablets asacolon but was always tired and run down. I could spend hours on end in the bathroom. Eventually I was admitted to hospital as my haemoglobin was at 7.3 where it should normally have been around 15 for a woman. I was obviously losing blood without realising it. I had to have a blood transfusion. My weight had dropped significantly and I went down to 6 stone.

After 10 days in hospital I was sent home with a whole new list of tablets both for the arthritis and the ulcerative colitis. I had to be given drinks to build myself up again. I now go to the hospital every 8 weeks for an infusion and every other week I am either in the doctors or going to see a specialist.

I find that I can handle foods fairly well. Some days I can eat anything but will pay for it at a later stage. I find alcohol does not agree with me at all but as a 25 year old it is hard not to indulge. It just means I will suffer for the fun il have. I find citrus fruits test me especially apples and oranges. Fried foods especially rashers and sausages can effect me at times. Dairy produce can produce unsatisfactory outcomes, yet as there is a history of osteoporosis in the family it is important for me to consume calcium. You get use to eating a restricted diet but there are times when il just take the chance but regret it the next day.

I believe I lead a relatively normal life yet hospital appointments seem to take up all my free time and once a flare up occurs it is very difficult to deal with if you are at work. One day recently I kept having to run to the bathroom but had to explain to my boss that it was due to "something I ate". The embarassment factor is , a major part which I am slowly learning to overcome. I just hope that with such a long road ahead of me that I can continue to lead a normal life.

Woman, 25

Featured ulcerative colitis patient discussions on symptoms and signs experienced

I was diagnosed with ulcerative colitis last month after I was admitted into the hospital with severe diarrhoea and bile vomiting. I went to the doctor twice and they said I had caught a bug and it should pass with antibiotics. After three weeks of abdominal pain and not being able to eat, I figured I'd better go to the hospital. They said the same thing as the doctor and sent me home with more potent antibiotics. Three days after no changes, I was back in the ER and was admitted for five days. After a colonoscopy they diagnosed me with ulcerative colitis, and now I’m on mesalamine (Asacol), medicated enemas, and steroids in an attempt to get it under control. After four weeks now, I'm slowly getting better. My stools are getting more formed, and my cramps are usually in the afternoon while I'm at work because I'm trying to hold my stools. The only thing now of concern is my liver counts are elevated, so I have to take weekly tests to keep an eye on that. I feel 75% better than when I went to the hospital, but I'm ready to get my life back to some sort of normality.

I have had ulcerative colitis for over a decade now. First symptoms were uncontrollable diarrhoea, bloody stools and mucus. I thought I was dying. My doctor put me on sulfasalazine(Azulfidine) at that time. I barely have any symptoms at all now. I stopped eating dairy!! That did half of the trick. I can have some dairy now. Less refined the better. So diet, exercise and Azulfidine have made me almost totally free of symptoms for over many years now.
http://www.medicinenet.com/ulcerative_colitis/article.htm

At the age of 58, I developed a chronic diarrhoea, severe cramps and weight loss. I went to my local G.P. who took stool and blood samples and presribed medication. When the medication was not working I was referred to a consultant. After thorough examinations, more blood tests, barium meal, barium enema, endoscopy and colonoscopy the consultant diagnosed me with Crohn's Disease. He referred me to a gastroenterologist. I was prescribed a medication for my complaint. During this time I had no inclination to eat (smell of food and cooking would sicken me). I was also quite weak and spent most of the time in bed and slept a lot. I was out of work for 6 months. The medication began to work and all was grand. Then  four years later the Crohn's came back with a vengence. Same story-diarrhoea, cramps & weight loss. No appetite and felt weak and cold. This time the specialists knew what they were dealing with. My medication was altered and I was put on steroids. This time I was out of work for 8 months and like before it gradually got back on track. I had not been hospitalised for either of these episodes but I was quite ill. Then four years later my appetite began to wane. I had soreness in my lower stomach. The doctor initially thought it was a hernia. I was rushed to A&E and admitted with an abcess on my bowel. This time I had no diarrhoea or cramps. The abcess burst and I got toxaemia. I had to have emergency major surgery but with specialist care, good doctors, nurses etc. I was out of hospital in four weeks. It took some time to recuperateand many visits to my health nurse and the hospital.
I do not need to go back to the hospital for a few months. I am still on medication and i will continue to be. The gastroenterologist and dietician told me to try all foods and eliminate whatever does not agree with me. I would always have had a good appetite but never one for spicy or hot food or gravies. So in that regard I am lucky not to be too restricted with my diet.
I feel very good and feel my strength is being restored gradually. I do not work anymore and feel I can lead a normal life despite my condition.
I would advise anybody with my initial complaints to seek medical advice as soon as possible.

Man,
65

All About IBD

To find out more about the Inflammatory Bowel Disease disorders, view this video:
http://www.youtube.com/watch?v=Lp-bqF1sjKw&feature=related


Between 1-1.5 million people have Ulcerative Colitis (UC) or Crohn's Disease (CD) in Europe. Exact figures cannot be formuated in Ireland at present but it is clear that the numbers are increasing.


The exact cause of IBD remains unknown. Genetic and Environmental factors seem to play a part as well as diet, infective agents, smoking and stress. Whilst risk factors such as appendectomy, oral contraceptives, diet, breastfeeding, infections/vaccinations, antibiotics and childhood hygiene have been explored they have demonstrated inconsistent findings.

Nutrition is especially important in CD as weight loss is a common symptom of the disease. Many patients experiment with their diet which may lead to excluding major food groups, for example, dairy products (Skelly, 2009). However, there is no empirical evidence for food exclusion and foods from all elements of the food pyramid are recommended. However, in times of flare-ups dieticians recommend resorting to a low residue diet. Residue is the total material that is left in the bowel after food has been digested and absorbed and therefore foods high in residue must be avoided in times of flare-up (Irish Nutrition and Dietetic Institution , 2005)

In CD, the most common initial presentation is chronic diarrhoea with abdominal pain, fever, anorexia and weight loss. The abdomen is tender and a mass of fullness may be palpable.

In Ulcerative proctitis inflammation is confined to the rectum and for some people rectal bleeding may be the only sign. Others may have rectal pain, a feeling of urgency or an inability to move the bowels in spite of the urge to (tenesmus) (MFMER, 2010). Procotosigmoiditis involves the rectum and the lower end of the colon, known as sigmoid colon. In left-sided colitis inflammation extends from the rectum up the left side through the sigmoid and descending colon. Pancolitis affects the entire colon causing bouts of bloody diarrhoea, abdominal pain, fatigue and weight loss. Fulminant colitis is rare, life-threatening and affects the entire colon. People affected by this may be at risk of colon rupture and toxic mega colon (MFMER, 2010).

In general, the traditional approach has been to palliate symptoms, to induce periods of remission and dampen the immune response component of inflammatory and autoimmune disease using anti-inflammatory agents such as steroids (Caffrey, 2009).

Chief Executive Officer of Crohns and Colitis Foundation of Canada (CCFC) (2010) proclaimed:
“...these are diseases that have an embarrassment factor and one of our challenges is to lift the veil of silence on these diseases and educate people because these are profound lifelong diseases”.

About this Blog

Hi,
As part of my B.Ed 4 Home Economics research dissertation I am conducting research on Inflammatory Bowel Disease and in particular focusing on the two main diseases Ulcerative Colitis and Crohn's Disease.

As part of this research I am looking to identify:

• the growing prevalence of IBD within society
• some of the causes of IBD
• symptoms of IBD
• treatments currently available and future therapies as well as
• identify how society can raise awareness of IBD.

 

If you or anyone you know suffers from the disease please feel free to leave a comment for example:

• -What foods you find aggravate the condition?
• -What symptoms did you first present with?
• -What treatments are you currently receiving (are these treatments working)?
• -How would you promote education of the disease to raise awareness?
• -In general comment on how you lead your life living with this condition.