So you've been diagnosed with IBD ....... what now?

With the help of a number of people with Crohn's or Ulcerative colitis, I've put together a question and answer section which I hope will help. I've tried to answer some of the questions the doctors can't or won't answer. No one knows what it's like to have IBD quite like an IBD'er does!

What is it?

Crohn's Disease can affect anywhere from the mouth to the anus but most commonly affects the small intestine and/or colon, see diagram above. It causes inflammation, deep ulcers and scarring to the wall of the intestine and often occurs in patches. The main symptoms are pain in the abdomen, urgent diarrhoea, general tiredness and in many cases loss of weight.

Ulcerative Colitis affects the rectum and  the colon (large intestine), see above. Inflammation and many tiny ulcers develop on the inside lining of the colon resulting in urgent and bloody diarrhoea, pain and continual tiredness. The condition varies as to how much of the colon is affected. If the inflammation is only in the rectum it is known as proctitis.

How did the doctor decide what I have?

A doctor may have looked inside the colon using a special telescope (sigmoidoscope or colonoscope). A special X-ray of the large intestine (barium enema) or small intestine (barium meal) may be advised. Barium coats the lining of the gut and shows up as white on X-ray films. Typical patterns on the films show which parts of the gut are affected. More sophisticated tests may be needed if the diagnosis is in doubt, or if complications are suspected. Also, blood tests are helpful from time to time to check for anaemia and other deficiencies.

If you had a colonoscopy your doctor will have looked at where the problems are and taken a biopsy. From this small piece of tissue, and where he took it from, he will have been probably have been able to ascertain whether you have CD or UC.

Ulcerative colitis affects only the mucosal membrane, or inner lining, of the intestinal wall and is limited to the colon.

Crohn's disease affects the full thickness of the intestinal wall and can occur anywhere in the digestive tract, from the mouth to the anus.

Diagnosis of one or the other can be a tricky business and it's not unknown for one doctor to say one thing and another doctor to say another!

Crohn's Colitis is like a combination of the two. It means you have CD that affects the large intestine (more commonly only affected by UC).

Why did I get it?

There have been many theories about what causes IBD but none have been so far proven. The most popular is that the body's immune system reacts to a virus or a bacterium by causing ongoing inflammation in the intestine. People with Crohn's disease tend to have abnormalities of the immune system, but doctors do not know whether these abnormalities are a cause or result of the disease .

Is it hereditary?

IBD is not strictly genetic. To date, scientists have found no specific gene in which a defect or mutation causes it. The chances of a child having Crohn's disease or Ulcerative colitis if his or her parents do is only slightly greater than the chances of any other child having inflammatory bowel disease.

Will I get better?

Crohn's Disease is a chronic illness where there is currently no cure. Some people with Crohn's suffer from one initial flare up, never to be bothered again, whereas others suffer continuously with little or no remission. There are no two cases alike. There are many different treatments and medications which can be tried and which can enable a patient to achieve that much needed remission. Surgery will not cure Crohn's. More on this below.

However with Ulcerative Colitis, if the colon is removed, the patient can be classed as ‘cured' as there will be no recurrence. As with CD there are a number of treatments available which will usually be tried before such drastic action is taken.

Will I die?

In a word, NO!  Years ago, people did die as the illnesses were not greatly understood and suitable drugs were not yet available to treat them. Nowadays, huge progress has been made in the awareness of IBD and how to treat it.

What medications are available and do they have side effects?

    * Aminosalicylates such as Asacol and corticosteroids such as Prednisolone are the backbone of treatment for acute attacks.

    * Aminosalicylate or corticosteroid enemas or suppositories can be introduced into the rectum to reduce inflammation in acute mild to moderate disease affecting the rectum or lower part of the intestine.

    * Disease that is more widespread in the intestine, or is unresponsive to rectal treatment, requires oral treatment to reduce the inflammation in the intestinal wall. Mild disease is treated with aminosalicylate tablets. More moderate disease requires corticosteroid tablets.

    * Severe attacks require admission to hospital and treatment with intravenous corticosteroids.

    * Immunosuppressants, eg Azathioprine are sometimes used for very severe symptoms that have not responded sufficiently to intravenous corticosteroids.

    * Infliximab is used for very severe disease that is not improved by treatment with corticosteroids or immunosuppressants.

    * Antibiotics are sometimes prescribed if there is an additional bacterial infection.

    * Vitamin supplements are recommended in cases where blood samples have shown a lack of one or more vitamins.

    * Medicines to treat diarrhoea can be used if this is a major problem.

    * Nutritional support may be required during active phases, for example with 'elemental' diets that consist of very easily digested food products.

Side effects vary from person to person. A few people experience side effects which are worse than the actual disease so are offered an alternative remedy. Some people experience little or no side effects.

I would always recommend reading the information that comes with your medication and seeking a doctor's advice if you are experiencing unusual side effects.

Will I have to take them for the rest of my life?

In many cases, yes, but again this is different for each and every person. In order to retain remission some people are advised to continue using a maintenance drug such as Asacol. Most doctors will endeavour to wean their patient off Prednisolone as the side effects of long term use can be severe. Patients using an immunosuppressant drug should have regular blood tests to ensure all is well.

There are also some people who are able to retain remission without the use of any IBD treatments but we must stress here that you should always talk to your doctor before trying this route.

What if the drugs don't work?

Some people with Ulcerative Colitis need surgery to remove the whole of the colon if their symptoms do not respond to treatment with drugs. If the colon is removed, the small intestine leads to a stoma (opening on the abdomen or ‘tummy area') for emptying of liquid stool. Or a replacement colon (ileo-analpouch) is created by the surgeon reshaping the end of the small intestine.

In Crohn's, surgery may be required to remove narrowed or damaged parts of the intestine. Unfortunately the possibility of it recurring elsewhere is quite high. If the Crohn's is in the large intestine then the whole colon can be removed as with the Ulcerative Colitis procedure above.

Are there any other associated illnesses/symptoms?

Other parts of the body can be affected in some people (about 1 in 10) in addition to gut symptoms. These include: inflammation and pain of some joints (arthritis); skin rashes; inflammation of the eye (uveitis); liver inflammation.

It is not clear why these other symptoms occur. The immune system may trigger inflammation in other parts of the body when there is inflammation in the gut. These other problems tend to go when the gut symptoms settle, but not always.

Will I be able to work?

This will depend very much on the severity of your illness and in some respects the nature of your work. The majority of people manage to continue in their employment with little or no problems. Some people find they are unable to continue working in the same capacity while others adapt their routines to fit in with their work schedules.

Will having IBD affect my fertility and how will it affect me in pregnancy?

Having IBD does not necessarily reduce your chances of making a baby. However there are some men and women who have CD, and some men taking certain drugs for UC who may find they are less fertile. In very many of these cases something can be done about it.

Research has shown that the course of pregnancy and delivery is usually not impaired in women with IBD. Even so, women with IBD should discuss the matter with their doctors before pregnancy. Most children born to women with IBD are unaffected.

Will I end up with a bag?

Surgery is nearly always a last resort in both CD and UC. R emoval of the colon is considered in the following situations:

1. During a life-threatening flare-up. Removing the large intestine may be the only option if it swells greatly ('megacolon'), perforates, or bleeds uncontrollably.

2.If the illness is poorly controlled by medication. Some people remain in poor health with frequent flare-ups which do not settle properly. To remove the large intestine is a serious step, but for some people the operation is a relief after a long period of ill health.

3.If cancer or 'pre-cancer' of the large intestine develops .

Will I get cancer?

Statistically, individuals with CD have a slightly increased risk of developing colorectal cancer, although not as much of an increased risk as those with UC. Scientists are still searching for the link between inflammatory bowel disease and colon cancer.

For people with Crohn's Disease, the risk of developing colorectal cancer increases over time, as is true for the general population. For this reason, regular screenings - either a colonoscopy with biopsy or a barium enema-should begin about 12 years after initial diagnosis if the disease is confined to the small intestine, and eight years after diagnosis if there is disease in the colon.

In Ulcerative Colitis, the risk of getting colon cancer increases according to how much of the colon is involved and the duration of colitis. Thus, after about 8 to 10 years of UC, especially if the entire colon is involved, the risk of developing colon cancer substantially increases. Regular screening would be similar to those with CD, some doctors like their patients to get yearly exams done after the initial 8 – 10 years.

Does what I eat/drink make any difference?

In many cases, yes. Again, though, this will vary from person to person. Some people find they are unable to comfortably digest dairy products while others will have problems with wheat/ fried food/ spicy food/alcohol/ fruit and vegetables etc. There is no definitive answer to this and patients would be well advised to take care with what they eat and perhaps keep a food diary to try to pinpoint the offending items.

What do I tell people about my illness?

Tricky one this! IBD is one of those subjects that most people find difficult or even impossible to talk about. Everyone tends to develop their own way of describing their illness. Descriptions might vary from a fairly discreet ‘I have a chronic illness which affects my tummy from time to time' to a more detailed ‘I have a life long disease which causes inflammation/ulceration of my colon etc etc'

You will have to decide for yourself just how much you want people to know.

If I go for a new job, should I tell them about my illness?

It's usually advisable to be upfront about an existing illness if you think it may affect you adversely in the job you are applying for. If you are not asked about your state of health then you are not obliged to disclose it. But if you are asked and you decide to withhold the information it can be used against you later.

Will it affect me when I apply for life insurance?

Yes it may, some insurance companies may ask for a higher premium. The Insurance Surgery specialises in providing Life and Critical Illness cover

What about the future, is research being done?

Yes, very much so – the world over. In the UK, a great deal of research is being done into the causes and treatments for IBD. As an example, since 1984, the NACC has funded over 60 different research projects. And in America the CCFA has dedicated more than $80 million to research that seeks the cause and cure for IBD. Just in the last few weeks, a new treatment , currently called ABT 874, has been showing great promise in trials in America.

Research into the causes of IBD is also in evidence globally. A very popular and long running theory is the possibility that Crohn's is linked to MAP (Mycobacterium avium subspecies paratuberculosis) . To find out more about this, look here .

If you think of any more questions to add to this page or see any inaccuracies, please email me at nicolette.gosling@btinternet.com 

 

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'ibd questions and answers' compiled by me, not to be copied and reproduced elsewhere unless permission requested and granted