Living with ulcerative colitisUlcerative colitis affects many areas of life. As a patient, you have the opportunity to actively influence the course of the disease through certain lifestyles.
Information and tips for living actively with ulcerative colitis
Ulcerative colitis will be with you throughout your life. However, you can reduce the associated restrictions. Various treatment options can alleviate symptoms. And you also make an important contribution.
Ulcerative colitis is not curable. As a first step, it is therefore important to accept the disease as part of your life. This may sound banal. But only if you come to terms with your disease, you will learn to live well with it. Get comprehensive information about the disease pattern and which concomitant diseases can affect people with ulcerative colitis. This will give you confidence about many aspects of the disease that you may initially find frightening. You will not feel helplessly at the mercy of the patient, but can help make and support important decisions, for example, about therapy. You can improve your quality of life by adopting an appropriate lifestyle. Influencing the course of the disease positively. Decisive factors are, for example, diet, sport or stress.
Knowledge takes away uncertainty
Ulcerative colitis occurs in most cases between the age of 15. and 30. The disease appears in the first year of life – probably in a phase of life in which you are in the process of making plans for your future. You may be at the beginning of your professional career or planning to start a family. The diagnosis will always raise many questions. Raise uncertainties. How will the disease affect your life, especially when an ulcerative colitis flare-up occurs?? What you have to consider? What effects the disease can have on your job or your partnership? What to keep in mind when traveling? One thing first: You will not have to forego professional success or a happy family life and fulfilled leisure time. We have a lot of useful information for you. Put together suggestions as well as practical tips for dealing with ulcerative colitis. We also keep you up to date on new developments here.
On the road
Are you drawn to faraway places? Ulcerative colitis is no reason to miss out on your dream vacation. Finally, you can leave the stress of everyday life behind you for a while on vacation and recharge your batteries. However, for the most carefree journey possible with ulcerative colitis, there are some important points to keep in mind.
This includes, among other things, your disease activity. In a symptom-free phase, there are virtually no limits to your travel plans. However, during a flare-up, it may be better to choose a nearby destination or postpone your vacation. The hygiene standards of your destination also play a major role. Get detailed information about local medical care so that you can receive the best possible care in case of emergency. Discuss your travel plans with your doctor well in advance so you can consider all the relevant details together.
Do not check in medicines
When traveling with ulcerative colitis, it is advisable to keep your medications in your carry-on luggage. So they are always handy. Can not get lost. Also remember to pack sufficient reserves to bridge any delays such as flight cancellations or traffic jams.
You are planning a flight? You should make separate preparations for pens, syringes or medicines requiring refrigeration in your luggage. Medications that require refrigeration, such as biologics, are best carried in a cooler bag in your carry-on luggage, as the low temperatures in the cargo hold can destroy the active ingredient. Please also always refer to the package insert and consult your attending physician or pharmacist if you have questions about storage and transportation. A doctor's certificate of medication requirements can prevent misunderstandings at customs and security checks. Make sure that all important information is written on the certificate in at least German and English, and preferably also in the local language.
The refrigerator special
Keep in mind that the power supply to minibars or refrigerators in hotel rooms may be tied to a main switch that you must activate with your code card. If you are refrigerating your medications there, check in advance that refrigeration is secured, otherwise the preparations could get too warm and break down.
Taking certain medications can make you more susceptible to infections. Depending on your vacation destination, you should therefore also think about travel vaccinations. A precise and timely coordination with your doctor is very important. Live vaccines may not be used with certain drug therapies, other vaccinations must be given more than once. Plan with enough advance notice here to make sure you don't run out of time.
Pay attention to the time of taking
If your travel takes you to a different time zone, the time difference will also affect your medication regimen. Many preparations are taken once or twice a day. To avoid taking it in the middle of the night when there is a time difference of several hours, shorten the period rather than lengthen it. So you take the medicine before going to bed. Then return to your usual rhythm. Agents that you do not use daily should be taken at the same interval and time as at home. Ask your doctor or pharmacist about taking medication in connection with the time difference.
People with inflammatory bowel diseases are particularly susceptible to gastrointestinal infections. Therefore, you should be cautious when traveling with ulcerative colitis. Remember the basic rule "Boil it, cook it, peel it or forget it!" ("Boil it, cook it, peel it, or forget it!"). Before peeling a fruit, wash the fruit first, then your hands. Refrain from eating lukewarm or raw foods, as well as ice cream, ice cubes and raw milk products. Also be aware that in many hot countries, fresh fruit in supermarkets is sprinkled to keep it fresh and appetizing. This water can also contain germs. Drink only beverages from original sealed bottles, no tap water. You should also not use the latter for brushing your teeth. Regular hand washing further reduces the risk of infection. Be prepared for all eventualities. Please discuss with your doctor or pharmacist how you should compile your travel pharmacy.
You should have a health insurance cover in any case on vacation. If your German health insurance does not cover you in your vacation country, you can take out travel health insurance. In principle, however, you should make sure before signing a contract that you can also make a claim if the insured event is related to your chronic illness. Often this is excluded.
There is no special diet for people with ulcerative colitis. However, a balanced, healthy diet with everything that is good for you contributes significantly to your well-being. The current phase of the disease and any complications play an important role in the diet for ulcerative colitis. During an episode, be especially careful to keep your body hydrated, nourished and caloric. Avoiding fiber to a large extent can help to protect the inflamed intestinal mucosa. Reach for white flour products rather than products made from whole grains at this time. Easily digestible and pureed foods are particularly well tolerated.
In the case of complications such as narrowing of the intestine (stenosis), fiber-rich foods can also cause discomfort, in addition to dietary fiber. To prevent pain or even intestinal obstruction, you should therefore avoid asparagus, fennel, leaf spinach, pineapple, nuts, grapes or citrus fruits. In acute phases of illness, you may no longer be able to supply your body adequately with a light diet.
Adapt your diet to the phase
In order to prevent deficiencies, you can switch to drinkable food in these cases. The nutrients contained are broken down so that the intestines can absorb them more easily. If this option is not sufficient, the food can be fed via a stomach or small intestine tube, in very rare cases also intravenously.
In the symptom-free period, a simple rule applies to the diet for ulcerative colitis: You can eat anything that is good for you. A food diary can provide information about which foods you tolerate well and which you tolerate less well. Take time to eat. Thorough chewing can relieve your digestive organs. It is also usually easier to eat several small meals throughout the day than a few large ones.
The basis of a healthy diet is sufficient fluid intake. They should be eaten between one and a half times a day. Drink two liters. Still mineral water is particularly digestible. Can provide the body with important minerals at the same time. In between, you can also reach for low-acid juices, mild tea or coffee. Make sure your diet is high in fiber. Fruits and vegetables are important sources, but you should avoid flatulent varieties. Others can have a laxative effect; you can reduce this by peeling or cooking them. Whole grain products also contain dietary fiber. They are also important sources of protein. Finely ground, they are usually better tolerated. Milk and dairy products provide your body with calcium. To avoid infections with certain bacteria, especially listeria, you should avoid raw milk and raw milk products. The following does not only apply to the diet for ulcerative colitis: Meat is a good source of nutrition. Sausage should not be on the menu too often. Strongly spiced, smoked, cured, breaded, spicy or fatty meat is not easily digestible. Tender, lean varieties are the better choice. Are particularly well tolerated when cooked, grilled or steamed.
Fish is a healthy alternative to meat. Contains omega-3 fatty acids, which are considered anti-inflammatory. However, pickled, fried, breaded or smoked fish is often less well tolerated by people with ulcerative colitis. Raw fish, for example as sushi, is not suitable because of the increased risk of infection. In principle, you should make sure that your meals are prepared with a low fat content. Use high-quality fats such as virgin olive oil or rapeseed oil.
You do not have to give up sugar and sweets. In the interest of a balanced diet, however, you should enjoy fatty, sweet foods consciously and in moderation. It is known that sugar substitutes are not completely absorbed by the intestines and may cause flatulence or diarrhea.
Are sport and ulcerative colitis compatible??
The answer is simple: Yes! Exercise has no negative influence on the course of the disease. Can also not trigger a new relapse. On the contrary: although the effect of exercise on chronic inflammatory bowel diseases has hardly been researched so far, recent studies indicate that you can positively influence the course of your disease by regular exercise.
Improve your strength, endurance, flexibility and coordination. This in turn has a positive effect on your musculoskeletal system. Your cardiovascular system. You also get your metabolism going in this way. Blood prere and respiration also show positive effects. By exercising regularly, however, you will not only strengthen your body, but also your mental balance. You reduce stress hormones. Can thus increase your stress tolerance. This will also have a positive impact on the way you are handled.
Don't overdo it – less is more
When it comes to sports and ulcerative colitis, it is particularly important to know one's own limits. Do not overtax your body, be considerate of your condition and the activity of your disease. Complications and concomitant diseases of ulcerative colitis also play a role. Basically, you can do any kind of sport with inflammatory bowel disease.
However, you should discuss which one is best for you with your treating physician before you start training. Just two to three light workouts a week can increase your fitness and overall well-being. If you have not been very active so far, approach it rather slowly. Rather than going all out, complete several small sessions and allow yourself breaks. You will see: After the first successes, the next workout is all the more fun.
During a flare-up or in case of complications, you should allow your body to rest. Don't overexert yourself and take a break from training when you feel like it. If you have recently undergone abdominal surgery, you should not strain your abdominal muscles excessively. Caution also applies to possible external influences. If you have an ostomy, a corsage can protect the sensitive abdominal area. If ulcerative colitis also affects your joints, it is better to choose a type of sport that is easy on the joints.
Ulcerative colitis: relationship and sexuality
In the case of major changes, such as those triggered by the chronic inflammatory disease ulcerative colitis, it is important that both partners allow themselves time to accept and deal with the new situation. In the best case, you can get to know and love each other anew in this way.
For reasons of better readability, we only use the term "partner" in the text. Of course partners are meant.
A happy relationship is one of the most beneficial things there is. It can provide strength, security, belonging and many carefree moments. But now you have been diagnosed with ulcerative colitis. And this can certainly throw a partnership out of balance. The good news is that there are some behaviors that can help you continue to have a good relationship. For example, these: Try to continue living as normally as possible in your partnership. No, this does not mean that you should ignore your illness – but it also does not have to become the dominant topic in your relationship.
Conversations help to clear up conflicts
Perhaps you only feel the desire to retreat into your own "snail shell" to deal with the consequences of the disease on your own. However, a pronounced unification can cause a relationship to falter. Even if it is well-intentioned not to burden your partner too much – sooner or later he may feel excluded or rejected by you.
Involve your partner and help him understand that – despite your illness – you are primarily responsible for yourself and that too much care is not always good for you. The challenge is to find a balance between these opposites. Talking to each other and being open about one's own feelings and needs is an essential basis for trust and a relationship at eye level.
It is also important to make sure that everyone in the relationship takes time for themselves now and then. This helps to recharge your batteries and stay with yourself and your own needs. Then again, use the times together when you feel physically well and do something together. Beautiful experiences strengthen the relationship.
And if the moment comes when an episode of the disease interferes with your plans, you may have to make arrangements for childcare or household help? Then a lot of understanding is needed from both sides. Because then you may have to deal with feelings of disappointment and bad conscience. Long-planned vacations can fall through due to a relapse of the disease, as can visits to restaurants, theaters or cinemas. In the event of an episode of illness, childcare or household help may also have to be organized. In these cases, use the help offered to relieve yourself or your partner.
And what can you do if you notice that no open conversation between you and your partner is possible? Then it can be helpful to seek professional help as a couple. Even if only one partner is ill, both have the need to experience appreciation and sympathy and to be taken seriously with their concerns and worries. How the partners can give this to each other can be the content of such a couple therapy.
Enjoy tenderness and togetherness
Sexuality is an important element in many relationships. Many people who are diagnosed with ulcerative colitis ask themselves: "Will our sexuality now be restricted by my disease?? And if so, how to deal with it? The good news is that you will probably be able to continue to enjoy your sexuality as before during periods without symptoms.
However, as soon as you are in an acute phase with diarrhea and abdominal pain, you may feel less desire for tenderness and togetherness than in symptom-free times and as your partner. This can last for several weeks. But these are only phases – no reason to turn away from tenderness and sensuality in your partnership in general. It is important that you then talk to your partner about the subject and openly express your situation in words. This is better than feeling obliged to do something when you don't feel like it at all.
And then there is another aspect that may lead to sexual problems between partners: an altered body perception of the person with the disease. This can be caused by visible scars after an operation or by the insertion of a stoma (artificial intestinal outlet). For some, this has a negative effect on their own self-esteem. And not only on that – because psychological problems. In turn, feelings of shame can block desire. Here, too, it can be helpful to seek psychotherapeutic help, either alone or together with your partner.
Talk to your doctor if you no longer feel any desire for sexuality. He can help you not only with physical complaints, but also with sexual problems. The reason: disturbances of sexuality and desire can be caused by the disease itself as well as by possible side effects of various medications.
Sexuality has many facets
However, you can also become active yourself and make a contribution to improving your sex life. To do this, you and your partner should detach yourselves from the idea that sexuality only means sexual intercourse. Because it is much more than that. For example, warmth. Experience security. Cuddling, caressing, kissing, massaging – without the demanding claim for more – can also be very beautiful and gratifying, if both partners allow it.
One idea for an appropriate atmosphere can be to ban "pleasure killers" like pharmaceuticals from the bedroom – they don't really have a stimulating or eroticizing effect on the nightstand. Instead, place a few scented candles instead. A warm bath with candlelight and music or even a gentle massage with fragrant oils not only contribute to foreplay, but also help to relieve stress. Your love life can only benefit from this.
And what about contraception?
In phases of severe diarrhea, i.e. mainly during an acute episode, it is important for women with ulcerative colitis to be mindful: Birth control pills may not be effective enough because they linger too briefly in the intestines. This may prevent the active ingredients from entering the bloodstream. Intermittent bleeding is a sign. Then alternative contraceptive methods, such as condoms, should be used. In any case, the choice of contraceptives should be discussed with the gynecologist. As soon as this has been clarified, you can turn to your togetherness in a much more relaxed way.
Balancing ulcerative colitis and your job
You may have only recently found out that you have ulcerative colitis and are now looking for ways to cope with it on the job as well. If you inform yourself and become active yourself, you will create the best conditions for this to happen. You are in the middle of your professional life. Have been diagnosed with ulcerative colitis? Then you might think about how you can manage a surge without it having a negative impact on your job. Or how to restructure your work life so that you can work as comfortably and efficiently as possible despite being ill.
Your considerations are not unfounded, because ulcerative colitis can have a major impact on your daily routine. It may already help to make sure your workplace is close to a restroom that you can reach on the spur of the moment if needed.
Initiating colleagues – yes or no?
You should consider how to deal with possible physical complaints and absences from work due to illness, and also whether you want to tell your colleagues and superiors about your illness.
Being open can make many situations easier and avoid misunderstandings – for example, when you call in sick, are absent because of regular doctor's appointments, or if you simply have to go to the bathroom more frequently. And it may also mean less stress for you if you don't always have to hide the effects of your inflammatory bowel disease (IBD).
However, telling the employer is uncomfortable for many people or they are concerned about possible consequences. And unfortunately, not every supervisor has the understanding or foresight to see the benefits that a dedicated employee can bring to a company.
On the other hand, an open approach creates the opportunity – even with ulcerative colitis – to stay with the company for the long term. This is the only way to find individual arrangements for you in consultation with your boss. Even small changes can remove obstacles.
You could ask your boss for more flexible working hours. One option, for example, would be to reduce your working hours when you are feeling less well, and then make up for this time later on. Or you may ask to be allowed to work from home. More and more professionals are using a home office .
Before considering how you might introduce changes in the workplace, first talk to your works council or an occupational health and safety representative, if one exists. They can advise you on how best to proceed.
Ultimately, it is your personal decision whether, when and with whom you talk about the disease. Please weigh up possible pre-. Thoroughly assess your disadvantages in advance.
In any case it is important to know your rights and possibilities. There are different forms of support, which are regulated by social law. For this it is also worthwhile to consult the integration office. It can give you advice as an employee. Acting as an intermediary with the employer.
Embarking on a new path
If the illness prevents you from carrying out your previous occupation as usual, it is important to create new perspectives. There are many possibilities. But there is one thing that is particularly important on the way to an optimal workplace: personal initiative! Because change often takes courage and also costs strength. Support for the maintenance of working capacity. Employment is regulated by law in many ways. However, which claims exist and can be implemented always depends on the individual situation. A consultation with a lawyer who specializes in employment law can provide information about what options are available in your individual situation. But there are other important points of contact for advice and support.
Since 2001, the laws and regulations for people with disabilities have been laid down in the Social Code IX. You can apply for the determination of a degree of disability (GdB). Even if it is difficult for many to have it officially confirmed that a CED also brings disabilities with it, this also has advantages.
What does the legislator understand by disability?
But first it is important to clarify: What does the legislator understand by a disability according to the Social Code IX? This includes limitations in physical function, mental ability or emotional health that are likely to last longer than six months.
Even though many people associate the terms "severe disability" and "handicap" with misconceptions and negative feelings, they are the basis for being able to claim the rights and benefits offered by the state.
Having a disability is not the same as being in need of care or helpless. Even a person who, like you, stands in life and takes care of himself can have a disability.
Depending on how severe the limitations caused by your CED are, the degree of disability (GdB) is determined. From a GdB of 50 there is a severe disability. A severely disabled person's card can be ied. Here's a quick overview:
Without significant restrictions GdB 20-40
With minor restrictions GdB 50-70
With moderate limitations GdB 80-100
With severe limitations
From a GdB of 25 there is a tax allowance, the amount of which depends on the GdB. This provides compensation for the costs caused by the illness.