Gut Guide

I was diagnosed with Ulcerative Colitis (UC) in 2019, and my journey since then has been full of ups and downs as I’ve tried to manage this chronic illness. Over the past five years, I’ve explored various IBD treatment options and, unfortunately, had to undergo two surgeries. Finding the right treatment has been a constant struggle—every medication seemed to work for a few months before losing its effectiveness.

Here’s a look at the IBD management strategies I’ve tried, and my personal experience with each one.

1. Mesalamine: A Temporary Solution for Mild to Moderate Ulcerative Colitis

Mesalamine is often used to treat mild to moderate Ulcerative Colitis, and it worked wonderfully for nearly a year. However, due to an insurance change, the cost skyrocketed to over $1,200 a month. Financial constraints are something I don’t think people talk about enough when it comes to chronic illness management—it’s heartbreaking when what’s best for your health becomes unaffordable, and you’re forced to switch.

If you’re struggling with the financial side of IBD treatment options, know you’re not alone. It’s important to talk to your doctor about alternatives or access programs that might help with costs.

2. Balsalazide: Getting Symptom-Free Before Pregnancy

This oral medication was my go-to when I needed to get symptom-free before pregnancy. While I never quite reached clinical remission, it was the closest I had come at that point. But after giving birth, my symptoms returned—blood, weight loss, loss of appetite, and severe abdominal pain. It was time to try something else.

If you’re living with IBD, you know how unpredictable flare-ups can be, especially during significant life changes like pregnancy. This experience taught me that IBD management is about finding what works best for your unique body at each stage of life.

3. Entyvio Infusions: Targeting the Gut with Biologics

Entyvio is a biologic infusion that targets the gut specifically. I was hopeful about this one because I had heard great things about it. But, as with many treatments, it didn’t work quickly enough, and my health started to rapidly decline. I ended up in the hospital, severely malnourished and in urgent need of fluids. It was time to try again.

One thing I’ve learned throughout this process is that IBD management requires a lot of trial and error, and it’s okay to keep seeking the right fit. If you’re wondering how to prevent ulcerative colitis flare-ups, it’s not always about one treatment—it’s a combination of lifestyle, diet, and medication that can make a difference.

4. Remicade Infusions: Finding Some Relief After a Long Wait

Remicade, another biologic, was my next option. I started it in the hospital, and after a week, I began to feel slightly better. It took a couple of months to see the full effects, but eventually, I noticed significant improvement—less blood, less urgency, and my appetite came back. I was able to have a fairly normal, healthy pregnancy while on Remicade, and it worked well for nearly two years before a flare-up returned.

When I asked myself, “How do you know if your IBD is getting worse?”, I realized the importance of listening to my body. For me, symptoms like urgency, blood in stools, and weight loss were clear signs that my condition was worsening.

5. Prednisone (Orally): The Frustrating Steroid

Prednisone is commonly prescribed to reduce inflammation during a flare-up. However, for me, it never seemed to work. Even at 40mg, I didn’t feel any relief. The side effects were tough to deal with, and I just couldn’t seem to get ahead of my symptoms.

I learned that stress and IBD often go hand in hand, and it became evident that managing my stress levels was as important as managing my medications. Managing stress and IBD is a key part of long-term disease control. Stress exacerbates symptoms, so practicing stress-relieving techniques like mindfulness, yoga, or simply taking breaks is vital.

6. Mesalamine Enemas: Not an Easy Option

Enemas are never fun, and they’re especially uncomfortable with UC. I was prescribed Mesalamine enemas after prednisone didn’t seem to help. Unfortunately, these didn’t do much for me either, and I struggled with both the discomfort and the lack of symptom relief.

This made me think about how to prevent ulcerative colitis flare-ups—I realized that while medications can help, consistency in lifestyle changes, diet, and stress management plays a key role, too.

7. Prednisone (IV): Trying Another Route

After the oral prednisone didn’t work, my doctor suggested trying an IV. Normally, this method helps more quickly, but unfortunately, it didn’t make a difference for me. It seemed like my body had become resistant to prednisone altogether.

8. Colectomy: A Life-Changing Decision

After failing multiple medications, my GI recommended a colectomy—surgery to remove my colon. With a family history of colorectal cancer and the fact that my disease was active for so long, the risk of cancer was increasing. For my health and quality of life, this was the best option.

If you’re wondering if you can live a normal life with IBD after surgery, the answer is yes. While it can be scary, my life has dramatically improved since the surgery. Don’t let the idea of surgery scare you off—sometimes it’s the fresh start you need.

9. Proctectomy: Taking the Next Step for Long-Term Health

Eventually, I also needed a proctectomy to remove my rectum and anus. Due to my family’s history of rectal cancer and a complication called diversion colitis, this surgery was necessary. Since these surgeries, my life has drastically improved. I feel like a new person, and I’m so grateful for the changes they’ve brought.

Final Thoughts on IBD Management and Living with IBD

I’ve definitely been through the wringer with treatment options, but I’ve learned that there are so many options available, and more treatments are being developed all the time. If one medication doesn’t work, there’s a good chance another will. And honestly, surgery, while terrifying, is not the end—it can be a fresh start. If you’re going through something similar, hang in there. You’re not alone, and there is hope ahead. You can live a normal life with IBD, even if it looks a little different than you imagined.

Unveiling the Reality of Living with Inflammatory Bowel Disease (IBD)

From mysterious symptoms plaguing my childhood to the life-altering diagnosis of Inflammatory Bowel Disease (IBD) in my early twenties, my journey has been a rollercoaster of uncertainty and challenges. Let's delve into the harrowing symptoms and experiences that come with this often misunderstood condition.

Many Toilet Trips Per Day With Urgency:

• On my worst day, I was rushing to the toilet 20 times a day.

• Sudden urgency left me with mere seconds to reach the toilet, disrupting every aspect of my life.

• Even minimal food intake triggered urgent bathroom dashes, highlighting the severity of my condition.

Bleeding From Your Bottom

Witnessing blood during bathroom visits was a stark indicator that something more serious than Irritable Bowel Syndrome (IBS) was at play.

Fatigue

The relentless battle within our bodies leads to profound exhaustion, making even simple tasks like showering a daunting challenge.

Stomach Agony

The excruciating stomach pains felt like internal stabbings, reminiscent of the visceral portrayal in the movie "Alien," inspired by a filmmaker's own battle with Crohn's Disease.

Constant Diarrhoea

Enduring persistent diarrhea, regardless of dietary choices, accompanied by potential mucus in stool, underscores the disruptive nature of IBD.

Other Unusual Symptoms:

• Mouth full of ulcers

• Sore Eyes

• Hair Loss

• Sudden Weight Loss

• Skin Conditions

• Mental Health Struggles

• Sore Joints

In Conclusion

The multifaceted symptoms of IBD can impact various facets of life, necessitating vigilance and proactive healthcare measures. If you resonate with these experiences, seeking medical advice and utilizing tools like the Flarecare app for symptom tracking can pave the way for better management and understanding of this complex condition.

It feels like both just yesterday and so long ago that I was diagnosed with Ulcerative Colitis. After years of uncertainty and fighting for answers, I finally knew what was going on. Waking up from my colonoscopy and hearing the diagnosis was both a relief and a little overwhelming. It was comforting to have an answer, but at the same time, I didn’t know much about the disease or what my future would look like.

Looking back, there are a few things I wish someone had told me when I first got my diagnosis:

1. Ulcerative Colitis is a lifelong journey.

Ulcerative Colitis is an autoimmune disease that affects the large intestine and rectum. While some people go into remission and stay symptom-free for years, others—like me—may find themselves in remission for only a few months at a time. The key to managing IBD effectively is to stay on top of treatments and care, even when you feel good. Regular monitoring and lifestyle adjustments are essential to prevent flare-ups.

2. There are many IBD treatment options out there.

From medications and steroids to biologics and even surgery, there are more ways than ever to manage Ulcerative Colitis. The medical world is constantly evolving, and if one treatment doesn’t work, there’s a good chance another will. IBD treatment options are vast, and it’s all about finding what works for you. When medical treatments stop working, surgery may be an option, which sometimes involves removing the colon and rectum entirely. Always keep exploring new treatments with your healthcare provider.

3. It’s ok to prioritize your health during flare-ups.

IBD flare-ups can feel all-consuming. During those times, it’s so important to put your health first. Resting, staying hydrated, and managing stress (as much as possible—easier said than done, I know!) can make a huge difference. Don’t feel guilty for saying no to things that might make you feel worse. I found comfort in taking long baths, using heating pads, and binge-watching my favorite shows. These small acts of self-care can be crucial during challenging flare-ups.

4. You are not alone in the IBD community.

Finding a support system when you’re dealing with a chronic illness like Ulcerative Colitis is so important. There are online communities full of people who understand exactly what you’re going through. Sharing experiences, venting, and receiving support from others who get it was such a lifeline for me. You can also find in-person IBD support groups through organizations like the Crohn’s and Colitis Foundation. IBD community support can be a game changer, reminding you that you’re not in this battle alone.

I’ve learned so much along the way, and while the journey isn’t always easy, you’re stronger than you think. Keep going, and know that there are brighter days ahead!

Frequently Asked Questions (FAQ)

● What triggers an IBD flare-up?

Flare-ups can be triggered by a variety of factors, including stress, certain foods, medications, or even infections. It’s important to track IBD symptoms and work with your doctor to identify triggers specific to you.

● What is the best way to reduce IBD symptoms?

A balanced IBD diet, proper hydration, managing stress, and regular medical check-ups are key to reducing symptoms. Medications and biologics also play a major role in symptom management.

● How can I manage stress with IBD?

Managing stress is crucial for people with Crohn’s disease and Ulcerative Colitis. Meditation, yoga, and even deep breathing exercises can help reduce stress levels. It’s also important to rest when necessary and not overextend yourself during flare-ups.

● Can you live a normal life with IBD?

Many people with Crohn’s disease and Ulcerative Colitis live fulfilling, normal lives, especially with the right treatment plan and support. Staying proactive with your health and seeking the proper care can make a huge difference.

● What foods trigger IBD symptoms?

Common foods that may trigger symptoms in people with IBD include dairy, high-fat foods, spicy foods, and foods that are hard to digest. Working with a dietitian to create an IBD-friendly diet can help manage symptoms.

● How do I get involved in the IBD community?

There are plenty of online platforms where you can connect with others who are living with IBD. The Crohn’s and Colitis Foundation and other organizations also offer local support groups.

Final Thoughts on Managing IBD

Living with Ulcerative Colitis or Crohn’s disease is undoubtedly challenging, but it doesn’t mean you can’t live a full, meaningful life. The right treatment options, a balanced IBD diet, proper stress management, and a strong support system are all part of the equation. Remember, you’re not alone on this journey, and there are always new treatments and strategies emerging to help you feel better.

Stay connected, stay proactive, and remember that brighter days are ahead.