IBD patients reveal what they’d tell someone new to ulcerative colitis

When you’re first diagnosed with inflammatory bowel disease, it’s nice if you can talk to someone who knows what it’s like to live with the condition.

Of course, that usually doesn’t happen. IBD is not exactly rare — about 1.6 million Americans have it, with 70,000 new cases diagnosed each year, according to the Crohn’s and Colitis Foundation of America. But unless someone close to you happens to have it, and has opened up to you about it, you’re likely to face the condition alone at first.

That’s why many of us gravitate toward online forums and groups dedicated to IBD. There are in-person support groups, as well. IBD patients want to now how to handle the practical side of the disease, such as how different foods might affect it, how to prepare for bathroom “emergencies,” and what questions to as our doctors. And we want to know how to cope with the emotions that come with having a chronic condition.

Nothing beats the voice of experience and, fortunately, many longtime patients are happy to share what they’ve learned. We asked our Twitter community: “People with ulcerative colitis: What advice would you give to someone newly diagnosed with UC?”

We received some great tips addressing all aspects of having IBD. The one theme that runs through all of the advice is self-care: You have to look after yourself! If that means canceling plans, taking a few extra minutes of your doctor’s time, or being annoyingly picky at the dinner table, then that’s just what you have to do. Whatever it takes to be well.

Have a look at what the Colitis and Crohn’s HQ Twitter community said, and feel free to jump into our social media discussion! It’s an excellent way to connect with others who understand what it means to have IBD. Also be sure to check out our other recent articles on topics such as the worst things about having Crohn’s or ulcerative colitis and the most ridiculous things people have said to you about your condition.

Take time to figure things out. Patience and a positive attitude go a long way.

1.

Be patient, remission is possible. Keep a food journal to find trigger foods, stress is a big factor. Research where bathrooms are ahead of time. Drugs seem scary but give you your life back. Find a GI you like and trust. It will be ok!

— Jennifer Marks (@jennjmarks) February 4, 2020

2.

Don’t feel like you have to figure everything out at once. Coping with a chronic illness can be very overwhelming, and it is a constant learning process. You are doing your very best.

— Lauren Nolan 👸🏼 (@LaurenNolannn) February 4, 2020

3.

Be patient it can be overwhelming at first especially with tests , treatments. routine is important find what works for you. Keep things in perspective & always stay positive. 💜

— Keith Bruce (@KeithBruce14) February 4, 2020

4.

That you won’t always feel as poorly as you do on diagnosis day. They told me I would have the condition for life but not that with meds I would have times of being ok. Also the fatigue is real when you need a day take one.

— Tracy (@Sobrightstars) February 4, 2020

5.

Try to make light of the situation and try to remain upbeat. You’re going to have good days and bad days, cherish the good days, try not to let the bad days affect you too much, surround yourself with supportive people/networks and stay strong 💪

— Tom (@TommyBoy04) February 4, 2020

Educate yourself using reliable sources, including your doctor.

6.

Look at your diet and lifestyle. I was eating gluten free foods, high fibre, nuts,seeds all were rotting my gut. I was also stressed out which doesn’t help either. Not all medication suits you & you might have to try a few before you find one that works.

— Mo Ackroyd (@MissTMo) February 4, 2020

7.

Take a day at a time. Follow prescriptions religiously and if you notice something unusual,discuss it promptly with your doctor.

— Ngigi Wangere (@joe_joe_ngigi) February 4, 2020

8.

Do lots of research, watch what you eat, go plant based diet, do research on your GI, find a good support group, no alcohol 🙏 🙏

— Ken Salehi (@SalehiKen) February 4, 2020

9.

Search in trustworthy places. That one person got well on a diet of Indonesian marshmallows is same as one person winning lottery.

— Gut Knowledge (@gut_knowledge) February 4, 2020

Get to know your body, and trust what it’s telling you.

10.

Do what feels right for you and your body. Everyone is different. It might take awhile to figure out a lifestyle that works for you but once you find it, it will work out!

— Alexa 👽 (@alexalauretano) February 4, 2020

11.

If you need to rest just rest as much as you can it really does help

— Ashleigh Moore (@pinkmonster4) February 4, 2020

12.

Learn your body.. especially your potential triggers & don’t let anyone tell you what’s best for YOU because it’s not them that has to live with it 🙂

— Lisa Barnes (@LiseMB3) February 4, 2020

13.

Don’t let people pressure you into eating or drinking anything you think or know will bother you. Trust your ‘gut’.

— 🌲®️👕🕴🏻🌪🌴🍦🥐 (@ArtisticRick) February 4, 2020

14.

Listen to your body, if its telling you to rest then rest. As time passes you’ll start to read the early signs that something’s going wrong and will be able to intervene to ease it. For me, the first sign of a flare is a feeling of anxiety so I increase my meds.

— Lloydy (@Lloydyy22) February 4, 2020

15.

No 2 days are the same. Just because your having a good day dont stretch yourself too far or do too much you will pay for it the next day. Also biggest thing for me is fatigue. Thats worse then the pain as it never seems to go away. Stay strong xxx

— Ceri Donoghue (@pinkieceri) February 4, 2020

16.

Try where possible to keep active/ doing the things you enjoy. The boost of released endorphins is a surprising help. As well as all the above of trusting your own body and what it tells you.

— Matthew Eckett (@MattyEckett) February 4, 2020

Plan ahead!

17.

always find the closest bathroom in public

— Vespo (@VespoTweets) February 4, 2020

Pay attention to the emotional aspects of having a chronic condition. Don’t be afraid to seek help.

18.

Especially those diagnosed young I would recommend to fully open up and talk about it. It’s a big weight to carry on young shoulders to get told that kind of news.

— Mark Anthony Murphy (@murphy__1985) February 4, 2020

19.

Therapy to talk about how the disease changes your life is a must. Don’t be scared to tell people.what you have. Try to find therapies or outlets that help you relax. Acupuncture is incredible for it. I got 3 times a week!

— IG: RealDJYoshi (@DJYoshi) February 4, 2020

Stand up for yourself and be proud of who you are.

20.

I learned very quickly that I had to become my biggest advocate. You are the only person that really knows if something is wrong. If you feel like the doctor is missing something TELL THEM. I could have prevented many hospital stays if I would have spoken up sooner.

— Lex (@sexilexi___) February 4, 2020

21.

Don’t be embarrassed about it. I was always embaressed people would think less of me somehow. But by talking about it I found I gained a lot of support. Also diets are all different and not everything works for everyone. Listen to your own body and be your own advocate.

— zommbunnee (@Zommbunnee) February 4, 2020