Diseases, illnesses, and accidents can all make us concerned and worried for the future. We worry about how we feel and our quality of life. We also worry about how we will afford any medical care we need, or missed time off from work. Problems with our health can be extremely stressful on ourselves and our family. These worries are multiplied when the diagnosis happens to your child. We wish we could take away their pain and suffering, as seeing your child enduring these things is heartbreaking. We wonder how our child came down with such a disorder and we want to do something about it.
Ulcerative Colitis – What is it?
These sentiments are especially true if you child has been diagnosed with ulcerative colitis. This condition is an inflammatory bowel disease in which parts of the intestinal tract are inflamed and irritated. Ulcerative colitis is more common in older children and young adults, though it can happen at any age. This disease also affects both genders equally. In the Unites States, 2 out of every 100,000 children between the ages of 10 and 19 are diagnosed with ulcerative colitis. In addition, between 20 and 25 percent of all ulcerative colitis cases are in patients under the age of 20. (10)
Symptoms of Ulcerative Colitis in Children.
If your child has ulcerative colitis, he or she may have chronic bouts of unexplained fevers, diarrhea and/or constipation, cramping, stomach pain, or even stools containing blood or mucous. These are all very concerning symptoms to see in a child. To make matters worse, if ulcerative colitis is not diagnosed and treated correctly it can cause growth and development problems in children. These symptoms can lead to embarrassment and social awkwardness, decreased quality of life, children not wanting to participate in normal activities, as well as other health, nutrition and hydration issues.
To obtain an accurate diagnosis, doctors usually perform a colonoscopy with a biopsy. This allows them to visualize what is going on in the bowel and send the tissue to the lab for further testing. In patients who have ulcerative colitis, the lower digestive tract will appear inflamed and irritated. Blood testing can also be done to further help confirm the diagnosis.
Getting a Second Opinion
As with other illnesses and injuries in children, it can be important for parent’s to seek a second professional opinion. With nutrition, growth, debilitating pain, weight loss, and even quality of life at stake, you owe it to your child to confirm his or her diagnosis of ulcerative colitis with a second medical professional who specializes in the field of gastroenterology. If the second doctor confirms the diagnoses, he or she may suggest treatment options that you feel may be better for your child. You or your child also may simply find that you have a better rapport with the second doctor and decide to stick with them as your care provider for ulcerative colitis.
Treatment of Ulcerative Colitis in Children
When your child is first diagnosed with ulcerative colitis, treating the current symptoms is of utmost priority. Your child may be given a course NSAIDS. If those don’t help they will prescribe steroids like Prednisone to help the body and bowel calm down and return to a more normal state. This will decrease or eliminate any pain and diarrhea your child is experiencing. Once your child receives these steroids it may take a few days to a couple of weeks for them to feel better. Prednisone can have some severe side effects so research it or ask your pharmacist. Never pull your child off of Predisone without slowly reducing the dosage. Talk to your gastroenterologist or your pharmacist. If your child has become dehydrated due to diarrhea, he or she may be prescribed intravenous fluids, or encouraged to drink a lot of liquid like Pedialyte http://pedialyte.com/. Dehydration can be very serious.
Once your child’s acute symptoms have been managed, he or she will be started on maintenance medications. Maintenance medications include several different classes of drugs in order to keep symptoms at bay and your child functioning at their best. Your child will most likely be on anti-inflammatory drugs to reduce the chances of abdominal cramping and diarrhea. Make sure you read up on the side effects and watch for them. My son almost died because a reaction to a UC drug so read the possible side effects and know what to look for, just in case. For more severe cases of ulcerative colitis, your child may also be asked to take steroids, antibiotics, and possibly other medications that work to suppress the immune system, call immunosuppressants.
It may take some time to discover the right combination of medications and their dosages to keep your child feeling healthy and well. This is a process, and although it can seem tiring and overwhelming, it will help your child lead the most normal life as possible. Unfortunately, ulcerative colitis is a life-long disease in some children, and sometimes the effectiveness of medications may decrease and create a need for a need medication plan. Once your child’s ulcerative colitis is well managed, he or she will need follow up appointments about every three to six months, as long as they are not having flare-ups. Flare-ups will require additional appointments and a possible change in medications.
There are also alternative treatments. See a natural medicine doctor about dosages.
Probiotics are very important to maintain the good bacteria in the colon.
UC doesn’t have to be lifelong, even if a doctor has told you so. Read more about the Causes of Ulcerative Colitis on this site. Parents have written to me and told success stories. One said their child was cured with the antibiotic Rocephin that was given to her child at the Cleveland Clinic. One mom kept her child in remission with natural supplements. Another mom said her child was cured with eliminating certain foods from her child’s diet after do some allergy tests. My son went into remission for 2 years while taking a special aloe vera supplement, relapsed and then he had a 5 year remission after treated him for parasites which cause ulcerative colitis symptoms. We had his stool tested at a world Dr Omar Amin and his renown laboratory. Most labs aren’t equipped or techs aren’t trained in what to look for. Parasites mutate. You may want to check the lab out if you think that may be the cause of your child’s UC. Parasites can be found in the stools of dogs and cats so be careful of your child’s hygiene if you have pets.
Children must stay out of daycare/school until they have been treated adequately for parasites and can no longer spread the infection. While they recover, encourage your child to drink plenty of fluids to avoid dehydration.
My son’s doctors did not believe he had parasites because he hadn’t been out of the country. They did not take into account the fact that most fresh produce we buy comes from other countries without the sanitation laws that we have. Try to remember what your child had been doing right before they were diagnosed. Check out Causes of Ulcerative Colitis on this site to help jog your memory.
While treatment with medications is always preferable over surgical intervention, there are times when a child will not respond to medications, or will stop responding to medications that once worked. When this happens, surgery might be the best option. Approximately 20 percent of children with inflammatory bowel disease will need surgery. (2) Surgery generally involves removing all or part of the colon or rectum. Since the ulcerative colitis disease lies within the colon and rectum, surgery often cures ulcerative colitis.
This type of surgery is usually done in two parts. During the first surgery, the colon and rectum are removed and a portion of the small intestine is use to replace the rectum. The surgeon will also make a temporary opening in the abdominal wall. This hole is small and the tip of the small intestines is brought to the hole to allow for drainage of waste. This is called an ileostomy. Approximately two to three months later, your child can return to surgery to have the ileostomy removed and the ileum attached to the new rectum. After this surgery your child will begin to have bowel movements in a regular manner again. Do your research. You are your child’s champion. If you are not comfortable with the surgeon or the hospital look for another one. Don’t worry if you think the surgeon will be angry or you will hurt his feelings. He will forget about you soon enough with all the other patients he has. Your job is to protect your little one, nobody else. Surgery should be the last option if nothing else helps. Research, research, research.
Support in Managing Your Child’s Ulcerative Colitis
There should be a collaboration of professionals working towards helping you and your child control their disease, be healthy, and maintain the best quality of life possibility: family doctor, gastroenterologist, immunologist, and alternative health professional, a nurse specialist, a social worker, a registered dietician, and a nurse educator. At times this team may also include a professional counselor to help you, your child, and the rest of your family work through any emotional needs that may come up. Managing ulcerative colitis, especially in children, can be overwhelming and stressful. This team of professionals is comprised in order to give you and your child the best outcome possible.
Support for Parents of Ulcerative Colitis in Children
Parents of children ulcerative colitis face many stressors. They can feel isolated from friends and family who do not know what it is like to have a child with this disease. They worry as to what their child’s prognosis is and if the condition will be long term. They worry about their child’s quality of life and overall health. They also may have financial or spiritual concerns. For additional support for you and your child, there may be parent or child support groups in regards to living with ulcerative colitis. The CCFA offers support.
A Guide for Parents http://www.ccfa.org/assets/pdfs/parents_guide_brochure_final.pdf
Healing Well is a forum that also will be helpful, though stories of success are few and far between because those who have been healed or are in remission don’t visit the site. So keep your focus on finding help and do not get depressed when reading about the non-successes. There are many moms posting there also.
You should also reach out to your caregivers to find support within your community. Many large hospitals have support groups where parents can reach out to other parents in similar situations. Social workers can be a good resource for finding, or even starting, one of these groups. You may not know anyone else whose child has this diagnosis, but you are not alone and there is hope.
Check out these success stories: