We solve some of the most frequent doubts after the diagnosis of ulcerative colitis

May 24, 2022


When a patient receives the diagnosis of ulcerative colitis many doubts arise around this Inflammatory Bowel Disease (IBD). The main question that patients ask is whether the ulcerative colitis is curable. But that is not the only one. Knowing if they will be able to continue doing their usual life is also one of the major concerns of patients with ulcerative colitis. And because it is a pathology that usually appears in reproductive age, patients in consultations also ask about the possible problems they may have when having children.

In addition, ulcerative colitis does not appear alone. There are other types of manifestations such as the cutaneous ones that appear in relation to the inflammatory disease. That is also a common question. As is the question of where to find truthful and reliable information about the disease. Next we respond to these issues that are of great concern to patients with ulcerative colitis.

Is there a definitive cure for ulcerative colitis?

Ulcerative colitis1 is defined as a chronic disease, which means it is not curable. However, it is controllable thanks to medicines, whichreduce inflammation and heal the intestinal mucosa.  In fact, when patients maintain an adequate therapeutic adherence, remission periods2 are prolonged over time. This means that the symptoms of ulcerative colitis disappear for longer periods of time.

Despite proper follow-up and therapeutic compliance, the patient should be aware that, although he will have asymptomatic periods, he will also experience periods with less or more intense outbreaks3. According to some studies, in order to prevent relapses and effectively treat ulcerative colitis, the multidisciplinary approach to the disease is a basic pillar4. In other words, patients will be treated by primary care, gastroenterologists, gastroenterology nurses and psychologists, among other health professionals.

Will the disease affect my quality of life?

After confirming the diagnosis of ulcerative colitis, patients and their families want to know to what extent the pathology will affect their daily lives. When patients relapse, their quality of life will be affected from a physical point of view (abdominal pain, diarrhea, tiredness), from a social point of view (cancellation of social commitments, loss of work) and from a psychological point of view (sadness, anxiety, stress).

But quality of life is a personal and subjective term, so the degree of adaptation to the disease, its treatment and side effects will be decisive in the perception that each patient has of its quality of life.

For example, a patient with certain symptoms, degree of activity of ulcerative colitis and treatment may feel that his quality of life after diagnosis of ulcerative colitis is higher than that of another patient in the same situation.

It is important for the health professionals to know what each patient’s perception of their illness is. Hence a measure such as the so-called Health-Related Quality of Life (HRQOL) is a very helpful tool. Using Quality of Life questionnaires5 we are able to measure, evaluate and know the impact of a disease on the sufferer.  In particular, one of the most used for its simplicity is the IBDQ-9 questionnaire6: it consists of 9 questions with 7 possible answers.

Can I have children if I have ulcerative colitis?

Another of the doubts that arise with the diagnosis of ulcerative colitis is related to the patients’ desire to have children. The answer to the question of whether they can have children is yes, a patient with ulcerative colitis can have children. In fact, men and women whose disease is inactive or in remission are just as fertile as the general population. They just need to keep in mind some considerations.

In the case of women, it is recommended to plan the pregnancy and make it coincide with a period of remission to avoid complications such as abortions, preterm births or low birth weight. Besides, with proper monitoring and treatment, the course of pregnancy and childbirth can be fully normal. And the newborn can be healthy.

Obviously, when patients are in an outbreak situation or with an active IBD, fertility is reduced. Among other reasons, it is a consequence of the decrease in sexual desire or the discomfort related to the symptoms of the outbreak itself. Intestinal surgery due to adhesion formation and anatomical abnormalities, as well as removal of the colon, may also affect women’s7 fertility.

What types of skin manifestations are related to this pathology?

One third of IBD-related extraintestinal manifestations affect the mucous membranes and the skin. The most common in patients with ulcerative colitis are pyoderma gangrenosum, erythema nodosum and aphthous stomatitis or mouth ulcers (aphthae)8.

Pyoderma gangrenosum is a non-infectious ulcer that tends to start as a painful nodule or pustule that ulcerates afterwards. It is located mainly in the lower limbs, although it can be located anywhere in the body. This skin lesion is treated locally with corticosteroids, although it improves with the treatment for ulcerative colitis itself. Finally, indicate that it may occur before, during or after an outbreak.

For its part, the erythema nodosum also appears mainly in the lower limbs. It is a lesion characterized by painful, warm reddish-violet subcutaneous nodules. Its appearance is associated with an outbreak of ulcerative colitis. The treatment to tackle the relapse also works to treat the erythema nodosum. Likewise, in order to reduce the skin lesion, it is also recommended to rest keeping the limbs high and, sometimes, to use compressive bandages.

Finally, recurrent aphthous stomatitis is an oral manifestation that may occur before an outbreak of ulcerative colitis. It is characterized by the appearance of small open ulcers on the mucosa of the mouth, circular, whitish in color and with a reddened edge due to inflammation. In this case, they also improve with the patient’s treatment for IBD. Ointments or mouthwashes with anesthetics and/or corticosteroids are used as local treatment.

Where to find reliable information on ulcerative colitis

There is a lot of information circulating on the Internet about ulcerative colitis, but not all of it has a scientific and medical endorsement. In other words, not all of it has truthful, verified and correct information. Therefore, when there is a diagnosis of ulcerative colitis, in addition to taking into account some recommendations to find reliable forums on the disease9 , the patient can visit some sites that do meet the conditions to be properly informed about ulcerative colitis.

In the first place, G-Educainflamatoria10 stands out. It is a space created by the Spanish Working Group on Crohn’s Disease and Ulcerative Colitis (GETECCU), an association created to study and investigate IBD and help improve patients’ lives. Precisely for this purpose they created G-Educainflamatoria, a space aimed at patients where very valuable information about Crohn’s disease and ulcerative colitis is offered.

For its part, the Intestinal Inflammatory Disease Group of the Polytechnic and University Hospital La Fe in Valencia, a multidisciplinary group of health professionals specialized in the care of patients with IBD, has created the IBD La Fe11 space. The aim of this initiative is to serve as a reference for patients with IBD and to provide a place where they can solve their doubts concerning these chronic intestinal diseases.

Finally, the Spanish Digestive System Foundation (FEAD)12 is an institution created by the Spanish Society of Digestive Pathology (SEPD) and supported by more than 2,500 specialists in the Digestive System. In their pages patients can find serious and reliable scientific information that helps to improve their well-being and digestive health.

  1. What is ulcerative colitis? – Adacyte
  2. Remission of inflammatory diseases – Adacyte
  3. Ulcerative colitis and Crohn similarities – Adacyte
  9. Forum on ulcerative colitis – Adacyte

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