Thursday 11 January 2007

Crohn's - the symptoms, related problems and treatments

What is it?

Crohn's disease is known as an inflammatory bowel disease(IBD). It is also thought to be an auto-immune disease, where basically the body attacks itself. It is chronic (life-long) and incurable, and it is also very serious. People CAN die from crohn's.

Crohn's basically is inflammation, which can present anywhere from the mouth to the anus, all the way through the digestive tract. Most commonly however, it affects the lining of the small and large intestines. When inflammation is present, it can cause ulceration, bleeding, swelling, and can cause narrowing and obstruction. There are many many symptoms of Crohn's disease including: pain, diarrhoea or constipation, vomiting and nausea, severe weight loss, bleeding from the rectum, joint and bone pain, mouth ulcers, skin rashes, eye problems, and extreme fatigue. There are also alot of problems which can occur which are as a result of the effects of Crohn's (eg. if someone cannot absorb the nutrients they need from food, or from some of the medications that they have to take). Commonly anaemia is a problem, and increasingly people are getting diagnosed with osteoporosis as a result of prolonged steriod use. However, there are numerous other problems which can also occur.

Who can get Crohn's?

Anyone can get Crohn's and at any age, although it most commonly seems to occur in younger people in their late teens or early twenties
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Narrowing in the intestines

If narrowing occurs in the small intestine it is serious as it can stop food passing through, and as the walls of the intestine are damaged by the disease, nutrients cannot be absorbed properly, if at all, and the person can suffer from severe malnutrition and lose a lot of weight. Also, the narrowing can cause vomiting, because food simply cannot get through where it is supposed to and so there is a backlog and it just comes up again. The aim is to try to suppress the inflammation so that it does not cause any more damange in the body, but sometimes people fail to respond to treatments and it is difficult to control the disease. If a person is able to tolerate certain drug treatments and their bodies respond well, then they may enjoy some periods of remission. However, for many it is a very different story, and they suffer every single day with the awful effects of Crohn's, and end up having many operations. Some cannot work for long periods of time, or not at all as they are just too ill. Some find it hard to maintain relationships and can end up feeling really isolated. For some it is a never-ending battle.

Permanent narrowing/scarring

If the inflammation is not treated with medication, then it can lead to scarring of the intestines, which is permanent damage. It is basically hardened inflammation. This scarring is a permanently narrowed part or parts of the intestine, causing severe problems with food and other nutrients. When this occurs, major surgery is often the only option, to either remove (cut out) or refashion (eg. stretch) the part of the diseased and scarred intestine. This can be a fairly long process, depending on how bad the damage is, and also how many damaged pieces there are. Sometimes, it is necessary for the person to have an ileostomy bag fitted (where a hole is made in the abdominal wall, and the intestine is pushed through a hole and is visible, and is where faeces are expelled from the body and collected into a bag which is attached/stuck onto the skin). Sometimes an ileostomy may only be a temporary measure in order to give the intestines a rest, but sometimes it is required for life. Whenever someone has this procedure, it can be quite a shock and can take a lot of adjusting to as it is life-changing.

Drugs to control Crohn's disease

There are many drugs available to help control the inflammation caused by Crohn's disease. There are various anti-inflammatory drugs (which are basically non-steriodal), and these can be used for patients with mild to moderate disease, or sometimes in conjunction with other drugs. There are also steroids (often a not so favoured option by patients because of the MANY both short term and long term side-effects). There are also immunosuppressant drugs, which basically suppress the immune system. These can work well in some patients, but the downside is that their immune system is lowered quite considerably and patients are then vulnerable to all sorts of bugs and infections. Regular blood tests are needed to check white cell counts in these cases. There are also some antibiotics which can sometimes be particularly useful following major surgery, but can only be used for short periods of time. And then a bit more recently, there is another immune suppressant drug which actually directly kills certain cells in the body which produce inflammation. This drug is known as Infliximab (or Remicade). It is a very expensive drug and is given as an infusion, where the patient has to attend the hospital often as a day patient to have it infused directly into a vein over a number of hours. Infliximab is often given to patients who have exhausted all other medication routes to no avail, although is now starting to be used more freely on newly-diagnosed patients and newer-patients to try and ensure that their disease is kept under control. Some patients only have this drug a few times and then stop it and are well again. However for many others, they will have to continue on it indefinitely. Also some people can survive having it just 8 weekly, whereas others have to have it more frequently like every month. It depends on the severity of their crohn's disease.

More about Infliximab (Remicade)

Infliximab is still a relatively new drug and as a result there is still a lot to be discovered as to how exactly it might affect a person longer term and caution has to be used. However, already there are a long list of known possible side-effects, some of which are shorter term, or immediate (ie, when the drug is actually being infused, some people have very severe/life-threatening allergic reactions to it), and some are more longer term. It is very important for someone on this treatment to be extra careful about coming into contact with germs, as catching something could make them very ill, and once someone has developed an infection, he/she cannot have their treatment if it falls around the time they are due, as it could have serious consequences.

Infliximab can also be quite complicated in that if a patient has to stop being on it for some reason (eg. because of surgery, or because they have an infection), if it is left too long for the next infusion, antibodies can be made, and then the body will reject it. Also, some medics believe that infliximab can delay wound healing or cause bleeding, and so this can cause problems, especially if someone is having surgery. So there are many factors to consider.

However on the positive side, Infliximab does seem to have helped a lot of people with Crohn's, and often where all other drugs have failed, it has been successful.

Elemental/liquid diets for Crohn's disease

Quite often, when patients are struggling nutritionally, because of the body's inability to absorb nutrients, patients are put on elemental diets which are basically liquids which contain all the necessary nutrients required for a balanced diet, but are all broken down already, to aid absorption. Sometimes patients use these diets as just a supplement to their normal food, but others are fed like this completely and do not consume normal food at all (at least for several months at at a time). Some patients require a feeding tube so that they can be drip-fed. These diets can really help with children especially, because it should help them to get the right nutrients they need to grow and develop properly.

What's the future?

Well I guess none of us really know, but there is always research going on, and all us Crohn's sufferers can do is to hang in there, and keep hoping and keep positive that one day a cure will be found. PLEASE!!

27 comments:

Cally said...

Hi Miss P,
You explain this so well, nice and simply for a very complicated topic.
Mr P says you've had a tough weekend, hope it's improving a little now they have identified the problem.

As always, kisses for you and good wishes to your wound, may it continue to heal.

ps. remember the garlic on the feet, all the goodies will get absorbed through the skin into your bloodstream and no need to digest, should help infection and speed wound healing.

Cally said...

Rutharoo, we love you!
Thought you may like this blog- www.crohnshelp.com/blog/

Getting telephone overload recently, I knew I was pushing it but was having such a good time chatting with you. Hopefully I'll feel more able soon, but till then I'll be thinking of you every day cause I know things are tough just now for you. Kisses xxxx

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