Sunday, November 27, 2022

Living With Ulcerative Colitis Stories

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Helping Others Understand Your Uc

Our Stories | In My Words: Life with Ulcerative Colitis

In your everyday life, you may have to deal with some aspect of your conditionwhether youre experiencing UC symptoms or not. But just because UC is chronic doesnt mean it has to take over your life. There are ways to help you be your own best advocate and get info to family, friends, coworkersanyone in your life who you think wants or needs to understand the disease.

So, if the moment ever comes up when someone asks about your UC, and youre open to sharing info with others when necessary, here are a few ways to help you be prepared.

  • Learn about UC: To explain the basics of the disease and how it can affect you, a good place to start is to know as much as you can about it.
  • Have information handy: You may want to have resources do some of the explaining for you. You can have printed material, like Ulcerative Colitis 101, or even refer them to a website like this one.
  • Understand your rights: Explore guidelines and eligibility requirements for potential services you may need. There may be means to access reasonable accommodations at school or work through the following laws:
  • Family and Medical Leave Act
  • Americans with Disabilities Act
  • Section 504 of the Rehabilitation Act of 1973

I Remember Experiencing Pure Joy That I Wasn’t Living With Pain And Fatigue

Megan Starshak, 37, went into remission in 2008 after six years of just about constant, debilitating symptoms, she tells SELF. Starshak achieved remission after changing doctors to see a physician experimenting with new treatments at a major medical center in her city.

Starshak says her life changed incrediblya true 180 degrees after achieving remission. It was beyond what I can describe, but I remember experiencing pure joy that I wasn’t living with pain and fatigue, she says. Shes been in remission for more than a decade and has been able to work toward some very big life goals. I earned my MBA and have been growing my career in brand strategythings that take a true dedication of time, mental energy, and networking, she says. Before her remission, Starshak says fatigue severely impacted what she was able to do. Now I can spend extra time learning and working on personal and professional growth. It’s really just that redirection of energy because I’m not zapped most of the time, she says. Shes also an advocate for the Crohns and Colitis Foundation, working to help other people who have been through similar experiences.

For the first few years following her remission, Starshak says she tried to make up for missed experiences by saying yes to every opportunity. Even seemingly ordinary things felt really significant to her, like being able to crash on a friend’s couch and not worrying about taking up their bathroom, she says.

I Was Living With Colitis When I Was Diagnosed With Bowel Cancer

Daisy has lived with Colitis since 2002 and was diagnosed with bowel cancer in 2019.

She shared her story with us for bowel cancer awareness week, and more support is available at the bottom of this blog post.

I collapsed in the doctors surgery after having a blood test, because I was so weak from stomach pains. Id been going to the toilet over 30 times a day and there was blood in my stools. I had my first colonoscopy to double check it was Colitis and see how bad it was. The pictures were awful. My colon was bright red and covered in ulcers, but it was a relief to finally get some answers for the symptoms Id been having.

Over the years I had occasional flare-ups, but it was controlled by medication.

I found my symptoms were worse during stressful periods of my life. In my worst moments I can remember crawling upstairs in pain and cold sweats due to the pain.

However, years passed until around January 2019 I started feeling really unwell and completely drained.

Even walking upstairs was a marathon.

Id had a baby two years before so at first I just put it down to being a mum.

I have regular blood tests to monitor my Colitis, and I remember mine showing that my iron levels were 4. Normal levels are 120-160 so I got rushed immediately to hospital and had an ECG as well as many other tests. I had a blood and iron infusion, was put on iron tablets, and then discharged to recover.

My family is brilliant, so I had a great support network.

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How Do I Spot The Signs And Symptoms Of Ulcerative Colitis

The most common symptoms of ulcerative colitis are abdominal pain and diarrhea, which often contains blood or pus.

Symptoms of the disease typically develop gradually and come and go.

Periods without active disease known as remission may last for months or even years.

Over time, ulcerative colitis can progress to cover more of the colon. This typically leads to more severe disease and greater symptoms.

If left untreated, UC can also lead to a number of complications, including:

  • Malnutrition

How Crohns Impacted My Education

The Ins and Outs of Ulcerative Colitis

I missed a lot of school. But my teachers were very understanding and tried to help me out, especially when I explained my situation. For Year 12 I got special allowances during my exams, because I was allowed to go to the bathroom any time for as long as I wanted and I would get that time that I missed going to the bathroom back, so that I wouldnt be disadvantaged. That really helped thinking about having exams and missing that much time caused a lot of stress. Stress exacerbates my symptoms a lot.

Rachel has a better quality of life now Crohns is under control

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What Should I Watch For After Starting Humira

HUMIRA can cause serious side effects, including:

Common side effects of HUMIRA include injection site reactions , upper respiratory infections , headaches, rash, and nausea. These are not all of the possible side effects with HUMIRA. Tell your doctor if you have any side effect that bothers you or that does not go away.

Figuring Out Which Foods Trigger Flare

As the NIDDK explains, although ulcerative colitis isnt caused by diet or nutrition, certain foods can trigger the symptoms or make them worse in some people. The tricky part is figuring out which ones.

Common ulcerative colitis triggers include dairy, high-fiber foods like fruit, vegetables, and whole grains, spicy foods, alcohol, and caffeine, according to the Mayo Clinic. That said, its really individual. Sam has always loved food and says that when it comes to what she can eat now, I have not figured that aspect out. And its not for lack of trying. I feel like I’ve done everything! she tells SELF, explaining that she tries to avoid various food groups like dairy that can trigger symptoms. It doesn’t mean I don’t ever eat them, but I try to avoid them, she says. I’m definitely still experimenting.

Stacey Bader Curry, 48, was diagnosed with ulcerative colitis in March 2020 and is concerned about giving up foods she loves, as well as alcohol and coffee. I’m trying to focus on what I can eat and not what I can’t eat, she says.

To figure out whether certain foods might be triggering your symptoms, the NIDDK recommends keeping a food diary where you record everything you eat and any flare-ups to help you work out what your dietary triggers could be.

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Diet And Nutrition With Ulcerative Colitis

Maintaining a healthy diet and managing UC symptoms go hand-in-hand. You may need to make certain changes to your eating habits to help prevent flares, manage pain in the digestive system, and avoid UC-related issues such as anemia.

There is no one diet that can cure ulcerative colitis. As one MyCrohnsAndColitisTeam member put it, This disease is not one-size-fits-all, so you will have to experiment to see what works for you and what does not.

Modifying your diet for your specific needs may help reduce IBD symptoms, . It can also prevent nutritional deficiencies and support healing. There is evidence that the IBD Anti-Inflammatory Diet which includes probiotics and prebiotics may decrease symptoms and promote healing in some people with ulcerative colitis. The IBD-AID was designed to provide full nutrition while restoring the balance between helpful and harmful gut bacteria. You may also discover that certain foods, like dairy products, trigger your symptoms and are best avoided.

Learn more about diet for ulcerative colitis, including what foods to eat and which ones to avoid.

Always consult your doctor or a dietitian before you make significant changes to your diet or take a new supplement.

Research And Statistics: How Many People Have Ulcerative Colitis

Jacklyns Story | In My Words: Life with Ulcerative Colitis

People of European descent have a higher risk of developing ulcerative colitis than do those of African or Hispanic descent.

People of European Jewish descent have an especially high risk.

Ulcerative colitis tends to run in families, affecting men and women equally overall. But older men are more likely to develop it than older women, according to the Crohns and Colitis Foundation.

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My Quest For Symptom Relief

Doing everything I wanted to do required reining in my symptoms. Throughout the years, I tried every possible UC medication out there. I took pills, injections, infusions. Some of the medicines would work or give me some benefit, but only temporarily. Eventually they’d stop working.

The only treatment that consistently helped me was a steroid. So I got into a routine. I would try a new drug, and once it stopped working, I would take high doses of a steroid for a while to control my symptoms.

I couldn’t stay on steroids for long because of the side effects. They weakened my immune system to the point where I was getting multiple colds and other respiratory infections. I got shingles twice. Skin warts erupted on my hands. Kidney stones became a problem. But as soon as I’d taper down my dose of the steroid, my UC symptoms would come back. It wasn’t a long-term solution.

As I was trying to tame my symptoms, I was training for one of the most intense endurance races in existence.

Ulcerative Colitis And Covid

The coronavirus pandemic has forced everyone to take extra precautions when it comes to health and safety. This is especially true for individuals with a compromised immune system. Although research shows that people living with UC are no more susceptible to catching the virus than the general population, organizations including the American College of Gastroenterology and the Crohns and Colitis Foundation have issued a number of new guidelines to help limit the spread of the infection. Its also recommended that people with ulcerative colitis get the COVID-19 vaccine.

There are also a number of resources available to help people with UC manage these difficult times from medication assistance to virtual therapy for mental health.

Additional reporting by Jordan M. Davidson.

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Managing Your Work Life With Ulcerative Colitis

Because of the range of disruptive symptoms it can cause, your UC can present difficulties in the workplace whether thats in an office, retail store, or industrial space. You may need to use the bathroom more often than other people, or you may be worried about the impression that gas or bloating make on your coworkers or customers.

There are no easy solutions in this area, but if youre looking for a new job, it may help to ask about policies like working from home, sick days, paid time off, and of course, bathroom breaks. Youll also want to get the best sense possible of whether your potential supervisor, or the workplace in general, is supportive of individual needs and work-life balance.

Although it can be a difficult choice, if your current job isnt compatible with your physical or emotional needs because of your UC, you may need to look for a new job thats a better fit.

For more information on working with UC:

6 Tips for Managing Career Success When You Have Ulcerative Colitis

Brooke Bogdan: Uc Advocate Living With A J

Ulcerative Colitis Symptoms That Should Be on Your Radar

Since having her colon removed several years ago, Brooke Bodgan has been living with a J-pouch, and she has seen a number of health challenges and triumphs. In two stories, she recounts how she got involved in advocacy for UC and how shes adapted to life without a colon.

How to Become a Loud, Proud Advocate for People With UC

Also Check: How Does An Ulcer Feel In Your Stomach

To Strengthen My Relationship With My Husband

When I was first diagnosed, we were only dating. But he stuck with me through it all and . He has been there for me helping navigate the healthcare system. Hes been there for me fighting with doctors and nurses when I wasnt receiving proper care. Hes helped bathe me when I was in the hospital and couldnt do it myself. He held my hair when I was puking my guts out in the toilet. He helped give me my biologic injections because I just couldnt do it on my own. My husband has been my rock and it taught both of us what it means when you say “for better or for worse… in sickness and health.”

What Should I Tell My Doctor Before Starting Humira

Tell your doctor about all of your health conditions, including if you:

  • Have an infection, are being treated for infection, or have symptoms of an infection
  • Get a lot of infections or infections that keep coming back
  • Have diabetes
  • Have TB or have been in close contact with someone with TB, or were born in, lived in, or traveled where there is more risk for getting TB
  • Live or have lived in an area where there is an increased risk for getting certain kinds of fungal infections, such as histoplasmosis, coccidioidomycosis, or blastomycosis. These infections may happen or become more severe if you use HUMIRA. Ask your doctor if you are unsure if you have lived in these areas
  • Have or have had hepatitis B
  • Are scheduled for major surgery
  • Have or have had cancer
  • Have numbness or tingling or a nervous system disease such as multiple sclerosis or Guillain-Barré syndrome
  • Have or had heart failure
  • Have recently received or are scheduled to receive a vaccine. HUMIRA patients may receive vaccines, except for live vaccines. Children should be brought up to date on all vaccines before starting HUMIRA
  • Are allergic to rubber, latex, or any HUMIRA ingredients
  • Are pregnant, planning to become pregnant, breastfeeding, or planning to breastfeed
  • Have a baby and you were using HUMIRA during your pregnancy. Tell your babys doctor before your baby receives any vaccines

Read Also: What Are The Signs And Symptoms Of Ulcer

Favorite Ulcerative Colitis Blogger

Sam Cleasby created her blog in 2013 to raise awareness of IBD and her struggles with self-esteem. Cleasby also has a radio show on BBC Radio Sheffield where she shares about modern family life, including relationships, disability, nutrition, and kids. You can subscribe to her blog via email or follow her on or .

This book by A. Hillary Steinhart, MD, provides dietary strategies and recipes to help manage inflammatory bowel disease. The head of the combined division of gastroenterology for Mount Sinai Hospital and the University Health Network in Torontos Mount Sinai Hospital, Dr. Steinhart worked with the clinical dietitian Julie Cepo to offer well-researched dietary advice for people to maintain health during flare-ups as well as periods of remission. The book is packed with 150 recipes, from risotto to stew, to help anyone with IBD eat well and prevent malnutrition.

Doctors assured Danielle Walker that her diet was not a factor in her ulcerative colitis flares. But after years of suffering and multiple hospitalizations, Walker realized she needed to make dietary changes. At the two-year remission mark, the mom, wife, and self-trained chef began blogging about her experience and sharing recipes to help others struggling with IBD. You can buy Walkers cookbooks on her website, which is loaded with nutritional resources including a blog and videos.

What To Consider Before Joining A Clinical Trial For Ulcerative Colitis

Living with ulcerative colitis: One man’s story

The decision to apply for a clinical trial should be made in tandem with your doctor, since there are many medical factors to consider:

  • The likelihood of UC remission by participating in the trial
  • The possible side effects of the treatment being studied
  • The timing and length of the trial, and how it relates to your current condition

You should also consider whether youre willing to go through a potentially lengthy application process, and you should have a plan for what youll do if you arent accepted into a trial.

For more information:

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Traveling With Ulcerative Colitis

Doing some research and planning ahead of time can help make trips go more smoothly. Here are a few tips:

Talk to your healthcare team about your travel plans. They may be able to offer advice and information about any necessary precautions or immunizations.

Take along your healthcare teams contact information and copies of insurance cards.

Remember to bring enough medicationpreferably in its original packaging. And make sure the sizes of liquids can go through security.

If you have an ostomy bag, make sure you tell TSA personnel before you go through security. Check out the TSAs page for people with medical conditions.

Research your destination. Know as much as possible about where youre going so you know what to expect. Aside from activities, places to stay, and where to eat, you might want to find out about nearby restrooms, when pharmacies are open, and if water is safe to drink.

Your diet when you travel should be as close as possible to your diet at home. Bring along dry, packable foods and follow the same precautions when eating out as you would when not traveling.

Use helpful resources that are availablelike a Restroom Request Card, which can let you discreetly communicate your condition and gain access to restricted bathroomsto be prepared in case you have sudden symptoms away from home.

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