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Ulcerative Colitis:

Your Treatment Journey

Nour Al-Timimi

"I really took for granted the simple joys from before my diagnosis. I felt like my UC had taken away the things I enjoyed doing."

When Nour Al-Timimi was diagnosed with ulcerative colitis in 2011 at age 21, the news "changed her life sideways." She hadn't heard of UC before that point and didn't know anyone with the disease. She was suddenly in new territory.

"Not many 21-year-olds have to think about chronic illness -- what kind of medications they'll have to take, what it means for their future, or how it will shape their life socially, academically, and professionally," she says. "It required a lot of personal growth."

Al-Timimi grew up in a home steeped in Middle Eastern culture, where food was integral to social gatherings. Dishes that she had grown up with were now difficult for her to eat, and the shift affected her both physically and emotionally.

"I really took for granted the simple joys from before my diagnosis," she says. " I felt like my UC had taken away the things I enjoyed doing."

In the years since, Al-Timimi says she's adapted to her new normal. In order to manage her UC best, she first had to accept her body's limitations.

"Once I understood what I could and couldn't do, it gave me a sense of ease and calm," she says. "There are a lot of things in life we can't control and having chronic illness is one of them. But now that I have a deeper knowledge of my body and the disease, I can integrate myself more easily into settings I've always enjoyed."

Beginning the Journey

Al-Timimi's life with UC started one morning when she woke up with severe abdominal pain. Even after seeing blood in the toilet, she dismissed it as "just some kind of GI infection." It was her first day of graduate school, and she was hoping for things to start on the right foot. Stomach pain wasn't part of the plan.

Ulcerative Colitis Symptoms

Untreated ulcerative colitis symptoms typically get worse over time. Most people with the disease start with symptoms like:

But she continued to feel unwell and generally not herself. As each day passed, her symptoms continued to get worse.

"I was having more abdominal pain, and I had no appetite," she says. "Even the sight of food would make me really nauseated."

After 3 weeks Al-Timimi's bleeding got worse, and she finally decided it was time to go see a doctor. Her first stop was her primary care doctor, who told her she had hemorrhoids.

My Diagnosis and Finding the Right Doctor

"He didn't do any kind of examination," she says. "In hindsight, it seems unbelievable that he didn't take a look or do any tests, and then came to that conclusion."

After a few weeks on hemorrhoid cream with no change in symptoms, she decided to go to a different doctor. This time they used a small scope to take a look at what was going on in Al-Timimi's GI tract and saw extensive inflammation. She was quickly referred to a gastroenterologist.

It took another month to get an appointment with a GI doctor, where she was finally diagnosed with ulcerative colitis. In total, Al-Timimi spent 3 months in limbo, with worsening symptoms and no diagnosis.

"It was really rough," she says. "In just that short amount of time, I lost 12 pounds."

Next Steps

Once Al-Timimi and her doctors knew what she was dealing with, they could start treating the problem. Her doctor started her on prednisone, an oral corticosteroid that calms inflammation in the body.

Although prednisone is a common first-choice treatment for UC, over time it became clear to Al-Timimi that oral steroids weren't really working for her. "I took different forms on and off for 5 years, but I just didn't feel like my quality of life was improving at all," she says.

She switched doctors, and her new gastroenterologist told her it was time for a more aggressive form of treatment: biologics. These drugs target specific parts of the immune system to quiet them. Al-Timimi felt unsure. She worried about side effects and was just generally nervous to try them.

But after a serious symptom flare that required hospitalization, she decided she needed to give biologics a try. "I knew I couldn't keep living with flare-ups like that continuously," she says. "It just wasn't practical anymore."

The effect of biologic treatment was drastic. In about 3 months Al-Timimi's major symptoms started to fade, and a year later, she felt virtually normal.

"It was life-changing," she says. "For the first time I could almost remember what it was like before I was diagnosed."

Al-Timimi was in remission for 2 years before a flare prompted a switch to a different biologic that got her symptoms back under control.

Sometimes doctors will combine two types of therapy to increase how well they work. This is called combination therapy. For example, you may be taking a medication that turns down your immune system (immunomodulator) and your doctor may also prescribe a biologic. Combination therapy has pros and cons.

"Combining therapies can increase the effectiveness of UC treatment, but there may also be an increased risk of additional side effects and toxicity," says Reezwana Chowdhury, MD, a gastroenterologist and assistant professor of medicine at Johns Hopkins Medicine.

Your doctor will choose the best treatment option for you based on your individual needs. They may choose from some of the newer drug options available:

"(Biologic treatment) was life-changing. For the first time I could almost remember what it was like before I was diagnosed." Nour Al-Timimi

Janus Kinase (JAK) Inhibitors

These are a newer class of biologic drugs and are considered one of the most promising therapies for UC.

JAK inhibitors work differently from other biologic drugs. They work by going into the DNA and shutting down the process that produces pro-inflammatory proteins called cytokines.

Unlike other biologic drugs that you need to take by infusion or injection, JAK inhibitors can be taken by mouth. This is because they're made of smaller molecules that can be absorbed within the gastrointestinal tract. Common side effects include headache and upper respiratory infection. Rare but serious side effects may include an increased risk for skin cancer, lymphoma, and shingles.

Zeposia (ozanimod) is another type of small molecule therapy, but it's not a biologic drug. Zeposia is the first drug in a category known as sphingosine 1-phosphate (S1P) receptor modulators approved by the FDA to treat ulcerative colitis. You take Zeposia by mouth.

Surgery for UC

There are two typical types of surgery for UC:

Proctocolectomy with ileoanal pouch-anal anastomosis:

This is when the large intestine is removed and the surgeon makes an internal pouch for the elimination of waste.

Proctocolectomy with end ileostomy:

In this type of operation, both the anus and large intestine are removed and the surgeon creates a pouch for waste that is outside your body.

Medications are keeping Al-Timimi's UC under control, but up to 45% of people with ulcerative colitis will eventually need surgery to treat the disease. Surgery for UC involves removing the colon and rectum (proctocolectomy) and creating a new path for waste to leave your body.

You'll need a bag called an ostomy bag to collect waste from your body after surgery. It may be temporary or permanent, depending on your condition.

Sometimes this surgery is urgent. If your medications stop working, you develop a hole anywhere in your colon or small bowel, you start bleeding in a way that is life-threatening, or you get a condition called toxic megacolon that dilates your colon and backs it up with air, surgery is a must.

Surgery can also be elective, meaning you choose it as a treatment option. Your doctor can talk you through the pros and cons and help you decide if it's the right course for you.

"Many people may be hesitant to try some of the medical therapies out there because they've read about all the different side effects or risks, so they opt to have their colon removed because technically, if you take the colon out, you've cured the disease," Chowdhury says.

Before you make a decision, be sure you have all the information you need. You can ask your doctor:

What will my life be like after surgery?
Will I have a bag?
When will I be able to reverse if I do have a bag temporarily?
How likely is it that I will be reconnected and not need a bag?
What will my bowel movements be like?
Will surgery affect my ability to get pregnant?

"If someone told me I needed surgery, my question would be 'Have we tried everything?'" Chowdhury says. "But if you're someone who doesn't want to try everything and you've had the disease long enough and you don't want to deal with a new medication to see if it works or not, that's completely reasonable."

When possible, your surgeon will perform your J-pouch surgery using minimally invasive (laparoscopic) methods. Instead of using one relatively large incision (open surgery), they'll typically make several smaller abdominal incisions through which they can insert the surgical instruments and a long, narrow tube with a camera at its tip (laparoscope).

During J-pouch surgery, the surgeon will:

Remove your entire colon and rectum. They'll keep the muscles and opening (the anus) at the end of your rectum.
Construct a pouch shaped like the letter J from the end of your small intestine. They'll then attach it to your anus.
Make a temporary opening in your abdominal wall (ileostomy) so you can eliminate waste
After about 3 months of healing, they'll do a second procedure to close the ileostomy so you can pass stool normally.

Living With a J-pouch or Ileostomy

After surgery, there will be an adjustment period to your new normal. Most people who have the surgery can return to work and normal activities after the new pouch heals. Here are some important points to remember post-surgery:

After the procedure, you'll spend a brief time in the hospital to recover and learn how to care for your temporary ileostomy. You may get pain medication or antibiotics.

Your doctor may recommend that you drink lots of fluids, such as water or electrolyte replacement drinks, to avoid dehydration and loss of electrolytes. For about 6 to 8 weeks, you should stay away from certain foods, such as those high in roughage. This includes raw fruits and vegetables, nuts and seeds, and popcorn. These foods can irritate the anal area.

If your stool is watery, it may help to eat certain other foods, such as applesauce, bananas, rice, or peanut butter.

For about 4 to 6 weeks after J-pouch surgery, avoid lifting and strenuous activities. After that, most any activity you choose will help you heal faster. The level and type of exercise you choose may depend on the exercises you were comfortable with before surgery.

J-pouch surgery has a few risks and complications, including

Ileostomy blockage
Dehydration
Diarrhea
Narrowing of the area between the pouch and the anus (stricture)
Pouch failure
Infection of the internal pouch (pouchitis)

Pouchitis is one of the most common complications of ileoanal anastomosis. The risk of pouchitis increases the longer the J pouch is in place. Pouchitis can cause symptoms similar to those of ulcerative colitis, including:

Diarrhea
Belly pain
Joint pain
Fever
Dehydration

Lifestyle Changes

Alongside treatment, your doctor may suggest certain ways you can boost your health and manage your UC symptoms with diet, exercise, and stress relief. You can:

Eat smaller meals more frequently.

Avoid foods that trigger flares.

Exercise regularly.

Practice relaxation techniques such as meditation or deep breathing exercises.

Learning to Live With UC

"I prioritize keeping my stress low, because controlling my stress affects how my GI behaves," Al-Timimi says. "When I'm feeling high-stress, I tend to not want to eat, I don't sleep very well, and I'm less likely to exercise. All of those things kind of go together and affect each other."

Getting Support

For many people it can feel embarrassing to open up about a disease that involves bathroom habits. But telling trusted family members or friends what you're going through may help you manage your disease, both emotionally and logistically.

It's common for people with UC to deal with anxiety and depression. In these cases, one-on-one counseling can help. Your doctor can recommend a trained therapist who can guide you through new thinking patterns and tools to help you manage your emotions.

And connecting with others who have it can help remind you you're not alone. You can find groups online or in person through your doctor's office or national organizations such as the Crohn's and Colitis Foundation.

Building a Support System for Your UC Journey

Al-Timimi says it took her many years before she felt comfortable talking to anyone. "Dealing with the disease on its own was really hard," she says. "It felt like talking to people about it would just make me relive it constantly."

Then 4 years ago, she joined the Patient Advisory Council of the Crohn's and Colitis Foundation, where she connected with others who understood life with inflammatory bowel disease.

"I finally found a niche where I felt comfortable. For the first time since being diagnosed, I finally felt comfortable in my skin." Nour Al-Timimi

Learn More About Ulcerative Colitis Treatment

Reviewed By Neha Pathak, MD on Dec. 14 2021

Sources

Nour Al-Timimi, San Diego, CA.

Reezwana Chowdhury, MD, gastroenterologist, assistant professor of medicine, Johns Hopkins Medicine, Columbia, MD.

Cleveland Clinic: “Ulcerative colitis.”

Crohn’s and Colitis Foundation: “Surgery for Crohn’s Disease and Ulcerative Colitis,” “J-Pouch surgery,” “Emotional factors,” “Medication Options for Ulcerative Colitis.”

UC San Diego Health: “Lifestyle Management of Ulcerative Colitis.”

UC San Francisco Health: “Special Concerns for People with J-Pouches.”