Our patients’ stories: Life after ulcerative colitis

When he was younger, having ulcerative colitis was tough on William
When William Tulip was 10 years old, he was excited to leave on a weeklong school trip, but his body had different plans. On day two of his adventure, he got violently ill and had to return home early. For the next few weeks, severe bloody diarrhea and abdominal cramping made his life almost unbearable.

 

His mother Karen suffered as well, namely because doctors couldn’t seem to pinpoint what was wrong with her son. During a weeklong stay at a local hospital, William was tested for salmonella and other bacteria, but nothing could account for his condition. William was then transferred to Children’s Hospital Boston, where doctors quickly scheduled a colonoscopy which indicated that he suffered from ulcerative colitis (UC). Initial treatment involved steroids and several medications; at one point, between meds and supplements, he was taking up to 50 pills a day. Some of these treatments provided temporary relief, but nothing seemed to help for very long.

By the time William was 14 he felt as if he had exhausted all of the available medication treatments, and decided he wanted to undergo surgery to end his ulcerative colitis once and for all. After much planning, doctors at Children’s scheduled a three-surgery procedure that involved first removing his colon and giving him an ostomy, then constructing an artificial large intestine, or pouch, out of parts of his small intestine, before finally removing the stoma and reconnecting his small intestine to the pouch. The decision to undergo such a massive procedure may have been too much for most kids, but William was confident that it was the right path for him.

“I’m a very straightforward person and I definitely get that from my mother,” he says. “It may not make me the easiest kid to be around all the time, but in this case it really helped. Knowing that I wanted this operation and I was ready for it took a lot of the guessing out of the hands of my doctors and parents.”

Thanks to surgery at Children’s, William no longer displays symptoms of UC

The three-part surgery was done by doctors Bradley Linden, MD, director of Minimally Invasive and Computer-Assisted Pediatric Surgery at Children’s, and Children’s Chief of Surgery Robert Shamberger, MD. All together it took 10 months to complete, but once finished William was relieved of all of his symptoms, and no longer required any medication.

William may be rid of his UC, but says having the condition has played a big role in the person he’s become. “Growing up with a chronic illness was really eye-opening because even at an early age I really understood that not everything in life is perfect or fair,” he says. “In may sound weird, but in some ways I’m glad I had this experience because it’s made me a stronger, more rounded person.”

One of the more defining aspects of his childhood was a trip to Camp Oasis, a summer camp for children with Crohn’s disease and ulcerative colitis run by the Crohn’s and Colitis Foundation of America (CCFA). William says being surrounded by other children who understood exactly what he was going through was an amazing experience. Having previously only known one other child with UC, William often felt isolated by his condition. But after his first summer at Camp Oasis he had several new friends to support him.

“It was the single most life changing experience I can remember,” he says. “Without CCFA and Camp Oasis, I would have never met some of my best friends.”

At Camp Oasis kids with Crohn's disease and ulcerative colitis can enjoy summer camp with other campers who understand what they are going through

Though she was initially hesitant about sending William so far from home, Karen was quickly convinced that Camp Oasis was the perfect place for her son. “Meeting other kids with his condition, both more mild and severe cases, had an amazing effect on him,” she says. “He came back less anxious and had so much more confidence. It was like a whole different kid.”

But William’s battle with ulcerative colitis wasn’t all self-realization and summer camp. There were plenty of hard times as well. He missed an average of 30 days of school every year.  At one point during treatment he was out of school for more than a month straight. Thanks to help from Janis Arnold, MA, LICSW, a clinical social worker who works closely with Children’s Gastroenterology program, William had an educational accommodation plan (known as a 504 plan) put in place, allowing him to make up the work he missed without having his grades suffer.

His GPA may have been protected, but the weeks and months his condition kept him away from friends and family took an emotional toll on William. There were times during his treatment that he felt very depressed, but hid his feelings from his mother because he didn’t want to upset her.

“As parents we do so much to protect our children, but sometimes they try to protect us by holding in their pain,” she says. “When I realized that was the case with William I was floored. It was a big wake up call, but it got us talking even more, which is the most important thing.”

Parents of a child with chronic illness are often so preoccupied with the financial and medical needs of their child that the emotional strain the illness has on the entire family gets lost in the shuffle. Karen says she’s witnessed this first-hand and wants to remind parents in similar situations the importance of getting together as a family to talk about what’s happening. She says by talking openly and making an effort to not let the illness define their lives, a family can thrive, even under less than perfect circumstances.

“Having a child with a serious medical condition impacts the entire family, but that doesn’t always have to be a bad thing,” she says. “In some ways, it can bring you closer together. That kind of bond lets you really appreciate the important things in life which can make the whole ordeal less overwhelming.”

 

 

 

 

 

 

 

  • Ansanchez98

    Thank you for sharing, we are going through something similar with our daughter . She is also 14 is tired of all the medication.  We are considering surgery, would like to know more about how William is doing right know, any complication after surgery. How long has it been since surgery, he looks verygood.
    Thank Sanchez Family

    • Tulip Family – UC

      William is doing GREAT!  He is on zero medications.  He is so very happy he chose the surgery – and we, as his parents are too.  I remember how afraid I was prior to the first surgery.   – and how relieved I was 2 days later, when he looked so well – he had color in his cheeks, and his eyes were not drawn with pain anymore.- The surgeons had a challenging time during the 2nd surgery -creating the internal pouch – but they were successful.  He now is great 99.999% of the time.  Do not let fear alone stop you from considering surgery.  My son’s quality of life prior to the surgery was not very good overall, as he was so sick, so often, and now his quality of life is great.  I hope your daughter is better.  William  is happy to talk with anyone considering this surgery.