Living with Ulcerative Colitis and Crohn’s Disease
You have just found out you have an Inflammatory Bowel Disease. You have probably never heard about this condition before. And now, you have it. The truth is it is not a disease but a group of diseases that answer by one name. We will talk about it later.
You may have experienced stomach aches, on and off, for a long time before the doctor could find out what was wrong; or you could have been losing weight for no apparent reason. You may also have been sick for a short time before you found you had an IBD. To most adolescents, to know the real diagnosis can mean a relief. That may sound weird, but it’s true. At last, they gave a name to what has been disturbing you. And good news is it is possible to do something for treatment.
Now that you know what it is about, you should know other really important stuff:
1) Nothing you have eaten or done caused the Inflammatory Bowel Disease.
2) You did not catch it from other people.
3) Definitely, you are not alone. There are more than 1.4 million people in the United States with Crohn’s Disease and Ulcerative Colitis and at least 140.000 of them are under 18 years old, just like you.
4) The Inflammatory Bowel Disease is a “chronic” disease, which means it doesn’t go away. But that does not mean you will not have a long and rewarding life and that you will be sick everyday but sometimes you might remember you have the Inflammatory Bowel Disease, because you will feel just fine.
6) Most people who live with Crohn’s Disease and Ulcerative Colitis feel healthy more often than sick.
7) You might have the IBD for your whole life but it does not have to rule your life.
8) Adolescents with Inflammatory Bowel Disease may be what they want to be and do whatever other people can do: go to school, date, go to the university, chose a career, get married, have children, travel – whatever you wish!
9) You CAN live with the Inflammatory Bowel Disease and we will help you learn how to do that.
10) You will have tons of questions about your disease, many of them now and also during your life. Although you are learning a lot about the Inflammatory Bowel Disease, probably more than you have wanted to learned – you might not ask all the questions at once. This is good. No one expect you to get everything at one time. You will be doing yourself a favor by learning in steps everything you can about the Inflammatory Bowel Disease and how the disease affects your body
Your life will change with Crohn’s Disease and Ulcerative Colitis but don’t let the fear of the unknown catch you. Ask your doctor questions and participate in support groups for patients of Crohn’s Disease and Ulcerative Colitis. You already know the expressions “Knowledge is power”. Learn everything about the condition you will live with.
The objective is:
- To inform you about the Inflammatory Bowel Disease.
- To introduce new methods of diagnosis and treatment.
- To help you live with the disease and, mainly, the feelings about it.
What is the Inflammatory Bowel Disease?
As we said before, the Inflammatory Bowel Disease is the general term that nominates some different diseases that produce inflammation in the digestive tract. The inflammation causes pain, swelling, rash and heat. That is why you have diarrhea, cramps and other symptoms. The diarrhea is the most common sign of Crohn’s Disease and Ulcerative Colitis, with frequent visits to the bathroom – up to 20 or more times a day. Sometimes, besides the inflammation, ulcers or sores appear in the intestine. Those ulcers are sores in the intestine tissue that may cause bleeding and pain. They are similar to “herpes simplex” and you may have them inside or around the mouth.
Are you ready for a brief lesson of anatomy? Let’s take a glimpse on the digestive system, which many people don’t care about. Your body depends on this system to receive and absorb food and its nutrients so that it can work. This is what keeps you healthy and growing up.
Going all through the way between your mouth and the rectum, the digestive system represents a lot to the “anatomic” part of your body. In fact, the complete collection of the interconnected organs measures about 10 meters, from one end to the other. However, when it comes to the Inflammatory Bowel Disease, the most important organs are the large and small intestines. You may check how they look alike in the image below:
Types of Inflammatory Bowel Disease
The Inflammatory Bowel Disease includes several different conditions but the two most important are Crohn’s and Ulcerative Colitis.
What is Crohn’s Disease?
Crohn’s Disease may occur in any portion of the digestive tract. However, it occurs more often where the large bowel meets the small bowel. That is where the ileum is, the lower part of the small bowel.
Sometimes, Crohn’s Disease that occurs in the ileum is called ileitis. When Crohn’s affects the colon, it may be called Crohn’s Colitis. When it involves either the ileum or the colon, the condition may be called ileocolitis.
Crohn’s Disease affects all the layers of intestine walls – causing inflammation and swelling, as well as ulcers. Those may cause bleeding and sores that also avoid the absorption of nutrients.
ulcers may penetrate intestine wall, forming an abscess (a pus collection). It may also occur an abnormal connection to other parts of the intestine or other organs. This is called fistula.
If you have Crohn’s Disease, you might have some or all of the following symptoms:
- Diarrhea (sometimes with blood).
- Cramps or abdominal pain
- Loss of weight
All those symptoms may cause you to feel hopeless. Besides fatigue, you may also lose appetite. The diarrhea, cramps and pain may get worse when you eat, due to the increase of stomach activity – so you may not want to eat.
- Nevertheless, Crohn’s Disease is not the same to everyone. Symptoms vary from person to person. Some people feel very uncomfortable and have frequent diarrhea. Others may have only occasional diarrheas and little pain. Sometimes, inflammation and.
What is Ulcerative Colitis?
- Ulcerative Colitis affects precisely the large bowel and the rectum. It is where inflammation and ulcers develop. The inflammation avoids water to be absorbed by bloodstream. The result is diarrhea. If you have Ulcerative Colitis, you may have:
- Diarrhea (frequently with blood)
- Cramps and abdominal pain
- Urgent need to go to the bathroom.
Inflammation and ulcers cause bleeding, and that is why there may be blood in the diarrhea. You may also have nausea, fatigue weight loss and appetite loss. As in Crohn’s Disease, symptoms may vary – depending mainly on the portion of the intestine involved. Differently from Crohn’s, which presents clean sections (not sick sections) in the colon (also called “skipped” sections), Ulcerative Colitis moves continuously all through the colon – without skipped areas.
Ulcerative Colitis that compromises only the rectum is called proctitis. If the disease affects the left side of the colon, it is called left hemicolitis. When it involves the whole colon, it is called pancolitis.
Apart from the intestines
You may also present some symptoms that have nothing to do with the digestive tract. Both Crohn’s Disease and Ulcerative Colitis may cause problems in other parts of the body, way distant from the intestines:
· Arthritis: the joints (usually knees and ankles) may swell, ache and get stiff. Arthritis affects about 30% of people with Crohn’s and 5% of those with Ulcerative Colitis. Medication may help but the problems usually disappear when the inflammation is controlled.
· Thrushes: they look like ulcers. Normally occur during periods of active inflammation in the intestine. Sores disappear when inflammation is treated.
· - Fever: it is an indicator of inflammation so that it is common during symptoms appearance. However, the fever may be present for weeks or even months before the appearance of symptoms. When intestinal inflammation is treated, the fever subsides.
· Eye symptoms: the eyes may get inflamed – red, sore or sensitive to the light. Those symptoms usually occur before the condition gets worse and disappear when intestinal symptoms are treated.
· Skin symptoms: patients may develop skin rashes or painful and reddish fungal diseases in the legs. The treatment of intestinal symptoms heals skin symptoms.
Who can have an Inflammatory Bowel Disease?
People at any age, from children to elders may develop an Inflammatory Bowel Disease. However, it occurs more often in young people, between ages of 15 to 35 years old. About 30.000 new cases are found in the United States every year.
The Inflammatory Bowel Disease is not contagious. To this date, its causes are still unknown – although researchers have very good clues. It seems that the Inflammatory Bowel Disease has a genetic factor.
It seems that other factors may be involved, though. Specialists think that people who develop Crohn’s Disease and Ulcerative Colitis may have some kind of deficiency in their immunological systems. The immunological system is a complex set of cells and proteins that protect the body against bacteria, aggressive virus and other microscopic organisms. You may have had some unknown bacteria or virus that triggered your immunological system so that it was “turned on”. And then, it never turned off. That seems to be a problem with people with Inflammatory Bowel Disease. The immunological system works too hard. Instead of protecting your body from invading substances, it turns around against you- attacking the intestine.
O que causa a Doença Inflamatória Intestinal?
Então, de onde vem e por que você tem a Doença Inflamatória Intestinal? Nesse ponto, as causas exatas ainda são desconhecidas – apesar de os pesquisadores terem pistas muito boas. A Doença Inflamatória Intestinal parece ter predisposição genética.
Mas também parece que existem outros fatores envolvidos. Por exemplo, os especialistas acham que as pessoas que desenvolvem a Doença de Crohn e a Retocolite Ulcerativa podem ter algum tipo de defeito em seus sistemas imunológicos. O sistema imunológico é um complexo conjunto de células e proteínas que protege o corpo contra as bactérias, vírus agressivos e outros organismos microscópicos. Você pode ter tido alguma bactéria ou vírus desconhecido que disparou seu sistema imunológico, fazendo com que ele “ligasse”. E depois não desligou mais. Esse parece ser um problema com as pessoas com a Doença Inflamatória Intestinal. O sistema imunológico trabalha demais. Ao invés de defender seu corpo contra as substâncias que o invadem, vira-se contra você – atacando seus intestinos.
How does the Inflammatory Bowel Disease affect growth?
When children acquire an Inflammatory Bowel Disease, they develop the same symptoms adults do. But there is one major difference. Adults have grown completely so that if their bodies do not get all nutrients needed, they may lose weight; on the other hand, they will look the same.
When children have either Crohn’s Disease or Ulcerative Colitis, they tend to eat less because of cramps and pain. Besides that, the food is not well absorbed so that important nutrients are lost. Moreover, some drugs needed to relieve the inflammation may influence normal growth. This means adolescents may be, for some time, at the same height in growth chart. Children at 14 may look only 9 years old. This can be very difficult, sometimes more difficult to face than cramps and other symptoms that follow the inflammatory Bowel Disease.
Not enough, Crohn’s Disease and Ulcerative Colitis tend to attack exactly at the age of major development and growth. In fact, some children may grow 10 centimeters within only 1 year! Friends’ growth becomes more visible compared to slow growth of adolescents with an Inflammatory Bowel Disease. The good news is children with Crohn’s or Ulcerative Colitis reach their peers at some time although they cannot grow as fast as their friends. With appropriate nutrients and treatment, adolescents with Inflammatory Bowel Disease eventually reach adult expected height. Your doctor will work with you to make sure your growth is one special priority. Meanwhile, don’t let the fact of your being different from others stop your social life. Almost all adolescents have something they don’t like about their appearance. Along with growth delay, it is possible that a puberty delay occurs. This is the moment when your body starts to develop and change, while you stop being a child and become an adult. While your friends may be developing sexually, you may not. But not everyone have the same delay of sexual development. And all that can be controlled with appropriate treatment.
Is there testing to the Inflammatory Bowel Disease?
Either infections or many other conditions may look like an Inflammatory Bowel Disease. Therefore, it is important your doctor be sure that it is not something else. The first time you got sick, your doctor saw you and examined you and asked about your symptoms and if you had already had those symptoms before. He may have asked about your medical and family history, once Crohn’s Disease and Ulcerative Colitis happen in families.
After that, your doctor probably prescribed blood test that can tell whether there are signs of inflammation in the body or some kind of infection. It can also show whether you are anemic (low counting of red globes). The next step usually is to take a stool sample and test it. This is another method to check whether there is some intestinal bleeding. Besides seeing your physician, you can also go see a gastroenterologist – a doctor who is specialized in diseases of the digestive tract, such as Crohn’s Disease and Ulcerative Colitis. The gastroenterologist may perform a test called colonoscopy, which is simply a way of examining the inside of the colon to check the existence of bleeding, ulcers or inflammation inside colon walls. A long thin tube, the endoscope, is inserted in the anus. The endoscope is, in fact, a special kind of video camera connected to a TV monitor. During the exam, the doctor might remove a small piece of tissue from the intestine wall. This procedure is called biopsy. That peace I sent to a laboratory to be examined in details. You will takea mild sleeping pill so that you do not feel any pain or discomfort during the exam.
The gastroenterologist may also perform another type of exam with the endoscope. This time, the instrument is inserted in the mouth and goes up to the esophagus (the tube connects your mouth to your stomach). This exam is called upper endoscopy, being its objective to examine the inside of the esophagus, stomach and upper small bowel to check the existence of bleeding, ulcers or inflammation in any of those organs.
Another exam is called barium study, x-ray of the transit in the intestine. In order to take that exam, you should drink a thick contrasting solution called barium. A series of X-ray is performed while the barium moves inside your body. One person is different from the other, and times vary. The barium appears white in the X-rays – providing a good sight of your intestines.
But even when you have the diagnosis of Crohn’s Disease or Ulcerative Colitis confirmed, the tests don’t stop. You will have to take blood tests on a regular basis in order to check whether you are getting the appropriate nutrients from the food you eat. The doctor also uses the blood test to check appropriate drug performance. Other exams should be repeated periodically so that your doctor can check the progress of your disease. Make sure your doctor explained to you which tests are needed to follow the Inflammatory Bowel Disease. Understanding exams better can prepare you and reduce your level of stress at the time of performance.
How is the treatment for the Inflammatory Bowel Disease?
Since Crohn’s Disease and Ulcerative Colitis are chronic diseases, they demand a long-term treatment. The kind of medication depends on the severity of your condition, the affected part in the intestines and whether you have complications. However, the objective of every drug treatment to an Inflammatory Bowel Disease is to control the inflammation.
There are several different drugs for the treatment of the Inflammatory Bowel Disease. None of them heals the condition but can keep them under control. When your disease is under control, your symptoms disappear. This period of time is called remission. The time without the disease may last months or even years.
There are two main goals in the treatment of people with Crohn’s Disease or Ulcerative Colitis:
1) To control the active disease (remission).
2) To keep the disease in remission.
When the disease becomes active again and you are sick again this is called relapse. Both Crohn’s Disease and Ulcerative Colitis are characterized by periods of remissions and relapses.
As the Inflammatory Bowel Disease varies from person to person, your treatment program will be designed especially for you. Your treatment Will depend on the areas of your intestines that are affected by the disease. Some drugs reach certain parts of your intestines and this is the reason of your doctor’s choice. The tests prescribed by your doctor help identifying those spots so that your treatment can be the most effective and directed as possible. It may take some time to find out which drug or combination of drugs works for you. When you get better, your doctor will be able to change drugs or adjust dosages.
There six typed of drugs commonly used to the treatment of both Crohn’s Disease and Ulcerative Colitis. Some put the condition under control; others keep your disease under control. Sometimes, the same drugs are used for both. The six categories of drugs are:
· Aminossalicilatos: these drugs are related to the aspirin and are more often used to the Inflammatory Bowel Disease. They are usually used to patients of mild to moderate Ulcerative Colitis or Crohn’s Disease to control the inflammation. They include mesalazine, balsalazide, olsalazine and sulfalazine. Among them, it is important to point out the mesalazine, which are better tolerated and efficient in the treatment of mild to moderate episodes of the Inflammatory Bowel Disease. They are also useful to maintain the remission. As for more serious conditions, the mesalazine may be used combined with other drugs. The extended-release mesalazine , with exclusive component “microgranule” in its tablets allows a uniform distribution in the organism with direct action in the spot of the inflammation. The extended-release “microgranules” of are water soluble and make ingestion easier by adults and mainly children and adolescents. The mesalazine presents one very defined function in the treatment of the Inflammatory Bowel Disease, with years of experience that certify its efficacy and safety.
· Corticosteroids: this is the second group of drugs most commonly used to the Inflammatory Bowel Disease. They have a fast action and that is why they are very useful during relapses. Besides reducing the inflammation, the corticosteroids also reduce the activity of your immunological system. The most used drugs in the group are prednisone and metildprednisolone. (By the way, be sure not mix those drugs with anabolizing steroids, that are used – and often abused – by athletes and weightlifters.
· Antibiotics: these drugs help keeping all bacteria balanced, the good and the damaging ones that live inside your intestines. The two Most commonly prescribed antibiotics are metronidazol and ciprofloxacin. They are recommended mainly in the treatment of active cases of Crohn’s.
·Immunomodulators: this class of drugs includes the 6-MP (also called 6-mercaptopurine, azatiophrine and metotrexato). The 6-MP and the azatiophrine are more widely used. As their names suggest, the immunomodulators regulate your immunological system for long-term maintenance.
· Ciclosporine and Tacrolimus: these drugs are also immune-supressors. Ciclosporine and tacrolimus are used in very specific cases.
· Infliximabe: this drug belongs to one only category. It is an antibody that reduces inflammation. It is more effective in people when the IBD has no results with other drugs or to those who present fistula. Infliximabe is applied via intravenous (in one vein) every eight weeks.
· Adalimumabe: similar to the infliximabe, it is recommended to Crohn’s Disease. It is taken every 15 days, with a subcutaneous injection.
Some information about drugs for IBDs:It is no fun taking tablets and you may have a hard time remembering to take them, especially when you are at school or hanging out with friends. Besides that, all these drugs may have side effects. Sometimes, some side effects may feel not so bad, or even worse than the disease itself. Some may cause headache or vomit. Others – like prednisone and some steroids – can make your face swell, giving you a ‘moon’ look. (Hint: Cutting off salt and salty food reduces a lot of the swelling). Steroids may also cause you to feel moody or restless. And they can cause pimples, as if you needed something else to make them appear! The good news is, once you stop using those drugs, the side effects go away. Your doctor will explain to you what you may expect from your medication and how to deal with them.
However, it is really very important that you take your medication as your doctor prescribed. You will fell tempted to abandon them but do not do it!
• Keep on taking your medication even IF you feel perfectly well.
• Keep on taking your medication even if carrying tablets and taking them at regular periods of time is a pain in the ass.
• And remember: these drugs keep you healthy and maintain either Crohn’s or Ulcerative Colitis under control.
Are you going to need surgery?
Drugs are the choice treatment for IBD but sometimes they stop working. Then, the answer is surgery. No one enjoys the Idea being operated on but sometimes the surgery is needed to control the symptoms that your medication cannot control any longer.
If you have either Crohn’s Disease or Ulcerative Colitis you might need to have part of your bowels removed. During the surgery, the surgeon will remove the inflamed part of your intestines and unite both healthy ends. This is called resection.
What is the role of nutrition?
In first place, be sure that nothing you have eaten caused Crohn’s or Ulcerative Colitis. But now that you have the disease, you might need to pay more attention to what you eat than you used to. Making some changes in your diet – particularly during relapses – may help reduce the symptoms, as well as replace some lost nutrients.
Everything you eat affects your intestines somehow. When you disease is more active you will have to observe your diet more carefully. Several food items don’t cause relapses but make the disease worse. Similarly, some foods may help you feel well during relapses. Some people prefer to eliminate dairy products and high fiber items (like fruits and raw vegetables). Others get better after reducing the ingestion of high fat products or sugar items. Again, someone’s disease is different from someone else’s..... Those food items that make you feel worse (or better) may not be the same that make someone else, with the same condition of yours, feel worse or better. It is basically a matter of try and error. Keeping a food diary helps you track the food items that make your disease get worse or better. Once you have found out which products make you sick, keep away from them. Your doctor probably will refer a nutritionist – a professional who specializes in finding out the best diet plans – to create a program that works better for you. Ask for a food diary calling 0800 722 4656.
Of course, you should keep a healthy diet, with fruits, vegetables, fish and low fat meat that work for you. With the help of your nutritionist and knowing your organism you will see that it is easy to find out what you can eat when going out with friends, so that you feel that you belong to the group. If you and your friends go somewhere and you find nothing you can eat there, depending on how you feel at that moment, ask for something you can drink.
When you have a diarrhea, you lose a lot of liquid. For that reason, it is important to drink a lot of liquid so as to compensate for the amount you lost. You also lose many nutrients that are important for your growth. Besides, you may have lost a lot of weight, and now you need to make up. Your doctor or nutritionist may recommend some special beverages or shakes that supply the nutrients you are lacking. They are called “food supply”. They supply vitamins and minerals, besides calories. And they do not have to make intestines work because they are liquid, allowing intestines to have a ”break”.
What is the role of stress?
In the past, people thought that the Inflammatory Bowel Disease was caused by stress. Today, this is not thought so. However, what seems to be true is that stress and other emotional factors may make Crohn’s and Ulcerative Colitis get worse and cause symptoms to appear. That is true for almost all chronic diseases.
Most adolescents experience stress. They need to take tests and do school projects. Besides that, you may not have passed all courses or physical activities and be worried about it – what it can mean to your academic and social life. These are sources of physical and emotional stress. Your disease charges tolls from your body. It may have caused lack of sleep. Thus, the combination of these ‘stressful facts’ weighs on you. And you need to get rid of this stress, the most you can:
· Try to manage stress with a positive attitude.
. Some people believe that learning to do breathing and relaxing exercises can help.
. Regular physical exercises help eliminate stress.
. Have a hobby and find some entertainment you are fond of.
. A broad relationship network (family, friends, teachers and health professionals) may help you reduce stress, too.
. Find your middle term: Keep yourself updated about the IBD but don’t let it rule your life.
. This is your choice: You can either sit there thinking about how Crohn’s and Ulcerative Colitis is ruining your life or do things you want with the attitude you’ve always had about life.
Taking care of your Inflammatory Bowel Disease.
A lot is going on during this period of life of yours. Mainly, it is a transition period. You are not a little child anymore but not an adult yet. It is important that you are independent – thinking and behaving by yourself.
Taking responsibility for your own health is one way of establishing your independency. Anyone has a hard time having a chronic disease such as Crohn’s or Ulcerative Colitis but for a teenager it may be especially tough. So much is happening to you, and now… this! As your condition is for life, you need to learn how to cope with it. You will be soon at college and take care of your life, and your parents are not joining you. Resources at college (and afterwards) will be different from those you are used to. Therefore, the sooner you learn to identify those that can help you, the better.
Having a good doctor-patient relationship is one important step. Your doctor is the person who will help you to become well and maintain it. You both should become partners in your health treatment. It may be difficult to follow all the instructions your doctor give but if it is necessary to keep you healthy, do follow them.
. Keep a diary of your symptoms so that your doctor can check your progress.
. Take your medications according to the program you and your doctor agreed.
. Be responsible for scheduling doctor appointments and talk to your doctor.
It is important to remember that the Inflammatory Bowel Disease affects not only you but your whole family. Your parents will always worry about you and now that you have a condition in course, they might become overprotective. This is normal, and you should try to understand their behavior. Tell them you are taking care of yourself. If they see you are doing it – keeping a healthy diet and taking the medication prescribed by the doctor – they will relax and stop controlling you that much. That does not mean they will love you less but that they believe you are taking charge of your disease. Keep your parents informed when you have abdominal pain or when your symptoms get worse. Tell them also IF the drugs you are taking seem to worsen your condition instead of making it better. Above all, talk to your parents in case you get a little worried or just because you need to talk.
Most adolescents say that having Crohn’s Disease or Ulcerative Colitis has made them grow much faster than usual. You are facing a set of challenges (drugs, diets, activities) that most adolescents don’t need to face. On the other hand, you will become stronger and more understanding, more able to understand others who happen to be facing similar challenges in their lives. For that reason, there are positive and negative aspects in your disease. At least, the IBD certainly will broaden your perspectives.
Can you lead a normal live in spite of the IBD?
The answer is “yes”! There will be ups and downs, for sure. When you happen to be in the middle of a relapse and your symptoms get really worse, life will not seem fair. Let’s face the fact. Having Crohn’s or Ulcerative Colitis is not only stressful and inconvenient. It can also be painful. You might feel sick for a long time or really tired, or both. You might have to face surgery or go to the hospital for some other reason. But those periods will not last forever and in-between them you will probably feel well. Medicine has struggled a lot to provide as many remissions as possible, and it has been successful.
Living with an Inflammatory Bowel Disease.
Bad moment. You might feel that the IBD is happening precisely at the WORST moment of your life. You are involved in school and other activities. You want to practice sports, go out with friends and date. Now this disease is ruining everything. When all you want is to adapt and be as everyone else, Crohn’s or Ulcerative Colitis makes you look as an “ET”. The disease makes you miss a lot of stud you want to do and your friend are doing.
The Inflammatory Bowel Disease can affect your body image, your sense of self-esteem. The Symptoms you have may come from wherever. They are also tiring, uncomfortable and may be embarrassing.
Those frequent diarrheas that follow Crohn’s or Ulcerative Colitis may give you the sensation that your life is all about the bathroom. And speaking of bathrooms, check if you can find one (at school, the movies, the mall or during travels). Besides that:
. Always carry a kit of wet tissues with you.
. Also have soft tissues in case you can’t find a toilet paper.
. Always have an extra set of underwear and a plastic bag to put the used one away.
. Find out where less used bathrooms are so that you can have more privacy
Even when you are at school, it is hard to be calm when you need to run to the bathroom all the time. Sometimes it looks like everybody knows what is going on, and your privacy, so important to you, almost doesn’t exist. But you can find ways of keeping a low profile when taking care of your needs.
This disease is not easy to hide. Truth is you don’t want to hide it, for hiding is worse. This is not about spreading the word about it or hanging a sign on your neck but it can be a good idea to tell your closest friends about it. This will make you feel less lonely with your condition and also make your friends get close to your because you shared something very personal with them. You may also ask for medical help about the best way of explaining what Crohn’s or Ulcerative Colitis is. Some doctors suggest that you explain the inflammation in the IBD like “a sunburn inside the bowels”. The school nurse and your teachers at school should know because there will be times when you will need to miss classes and do class projects and take tests in alternative days. If your teachers are aware of your condition they will simply let you go to the bathroom without you having to ask for it.
You may feel depressed, isolated or ashamed because of your symptoms. Most of all, you might have a bad self image IF you are small and thin or have a swelled face due to steroids taking. You may feel really vulnerable, thinking that your body doesn’t like you. These feelings may stop you from participating in many activities. Talking to your friends, family and your doctor can help you get rid of some of these feelings and help others to understand what is going on.
Speaking about the disease and how it makes you feel can be embarrassing or difficult at the first time, as you usually don’t comment about the activity of your intestines – especially at school. But it will become easier. Talking about the disease will make some false information disappear. Some mates might not have believed you were sick, especially when you seem to be so well. (It is really weird that sometimes you get to feeling so bad and, still, seem to be so well). They can think you are just being lazy when you complain about feeling tired. Some of them may think you have anorexia when you lose weight. When they know the truth, you will feel you took a big weight off your chest. You will find out that people – those who really care for you – will listen and understand. They will be with you when you are great and when you are bad, too.
Don’t define yourself as someone with an Inflammatory Bowel Disease. You are more, much more than Just “the girl or the boy who has Crohn’s or Ulcerative Colitis”. The best way to live with your condition is to accept it instead of denying it. Commit, do what you should to be well, and keep your agreement with your doctor.
Can you date and have an IBD? Of course you can! Having a chronic disease does not mean you cannot have a social life. Tell your girlfriend or boyfriend that your condition means you will have to use the bathroom often. If you think you should get into detail, that’s up to you.
It is also good to talk to other people your age who have Crohn’s or Ulcerative Colitis. You will see you are not alone. You will learn how others deal with their diseases and which strategies they found out to feel better and make their lives easier. You will also be able to participate in support groups, a discussion forum about Crohn’s and Ulcerative Colitis in the internet. It helps a lot to get to know about what other people are going through. However, be careful about not recommended readings in the internet. Make sure the web sites you research for are recommended by health professionals, like your doctor or other support groups of patients of IBD.
You were always active in sports before you knew about your disease, and now? The answer is: when you are feeling well and your disease is in remission, you can do most of the stuff you like and used to. It is a good idea to talk to your doctor first, though.
Living with a chronic disease can mean, sometimes, a lot of work. But that does not mean the disease should rule your life. Some hints that can stop your condition to rule your life:
· Rest a lot, even when you have no symptom.
Keep the diet that works well for you and avoid those food items that don’t.
. Always take your medication prescribed by the doctor, even when you are feeling good.
. Go see your doctor on a regular basis, even when you don’t have symptoms.
Joining a program that works is the best way to make sure that your IBD will not interfere in what you want to do with your life. And, although sometimes it can be hard, try to keep your sense of humour. Laughing is the best medication. It Will help you more than you imagine.
Hope in the future
The good news about Crohn’s Disease and Ulcerative Colitis that researchers all over the world are working to find the cure. Major progress has been achieved during the last 10 years. There are several reasons for having hope! New treatment options are always being developed. When you reach adulthood it is very possible that the cure will have already been found. Meanwhile, the most important thing to do is take care of yourself.
For more information, contact:
ABCD – Associação Brasileira de Colite Ulcerativa e Doença de Crohn
ABCD is a nonprofit organization constituted by patients, Professional Who deal with patients of IBDs and those Who, for any other reason, have offered their services aiming at providing benefits to patients of Ulcerative Colitis and Crohn’s Disease. If you have never joined a group, we invite you to participate. You will probably get surprised. Even if you have no symptoms now and live well with the disease (and most people in the group do), you Will have the chance to provide great help for someone