Humira is an injectable medication that you store in the refrigerator. Doctors prescribe it for a variety of diseases, including Crohn’s disease, ulcerative colitis, rheumatoid arthritis, anylosing spondylitis, and chronic plaque psoriasis. It is what’s known as a biologic drug, meaning it is made of, or includes components of, living organisms. Usually you will only be prescribed Humira, also known as adalimumab, if other treatments have failed to get your condition under control. You take Humira by self-injecting it under the skin one time every two weeks.

The good news is that despite its temperature requirements, Humira therapy offers enough flexibility that it usually won’t interfere with your travels. In fact, if it keeps your symptoms under control, the medication might be just what you need in order to get on the road and enjoy yourself.

Humira Travel Case – UPDATED 2020

AbbVie, maker of Humira, offers a program called Humira Complete that offers a variety of information, resources, and support to patients who are prescribed the medication. One of the perks is a free Humira travel case sent to your door. The company explains that the case designed for when you’re taking a short trip. It comes with two ice packs, as well as informational materials. When placed in the carrying case with the packs, your Humira can be kept cool for a few hours, according to the company.

AbbVie offers this Humira travel case through its Humira Complete program.

Sign up for Humira Complete here. Other benefits of the program include:

• Access to a nurse ambassador to help you take Humira properly.
• Opportunities to lower the cost of being on Humira, such as through the Humira Complete Savings Card.
• Assistance in understanding prescription coverage through your insurance plan.
• A free sharps container delivered to your door with a disposal kit that you mail back.
• Injection support via videos or phone calls or in person to make sure you are successful with Humira. An injection support kit is also available.
• Medication reminders via phone call, text message, or email so that your take Humira on time.
• An app to assist with your Humira treatment, with features such as keeping a log of your injections and a record of your symptoms.

For immediate help with Humira, call 1-800-4HUMIRA (1-800-448-6472).

Travelling With Humira – What You Should Know?

When you’re planning a trip, you might worry about how to keep up with your Humira regimen given that the medication is usually kept refrigerated.

For most trips, you don’t have to stress about keeping on track with Humira, as the medication can be stored at room temperature for up to 14 days.

Fortunately, Humira can be safely kept at room temperature for a full two weeks. That means that for most trips, you don’t have to stress too much about your medication. In a video on the Humira site, AbbVie advises the following:

• Pack only the amount of the medication that you will need while away.
• Record the date when you first remove it from the refrigerator. The carton and the dose tray provide a place to write this information.
• Store Humira in your carry-on bag rather than your checked baggage. (The X-ray machine for security screening won’t harm your Humira.)
• When you arrive at your destination, store your Humira in the refrigerator if possible. If you can’t, then store it at room temperature away from direct sunlight.
• If you don’t use your Humira within 14 days of when it was taken out of the refrigerator, then discard it.

Humira On the Go Kit

Times change, and so does terminology. Humira has been available in the U.S. for many years — it received FDA approval in 2002 — and its marketing has varied in that time. In a web search, you may run across references to an “On the Go Kit” was offered to Humira patients in years past. This was apparently identical or very similar to the travel case offered today. Humira links referencing the On the Go Kit now redirect to other Humira patient education pages.

Humira Temperature – How Long Is It Good At Room Temperature?

In general, Humira should be kept in a refrigerator at between 36 degrees and 46 degrees Fahrenheit (2 degrees to 8 degrees Celsius). It should be stored in its original container and kept away from light until it’s time to inject it.

This screenshot shows an outdated link to the Humira On the Go Kit. Today Humira offers a similar, or possibly identical, travel kit.

However, Humira can be maintained at room temperature, meaning 47 Fahrenheit degrees to 77 Fahrenheit, for a full 14 days. That’s equivalent to 8 degrees to 25 degrees Celsius. After Humira has reached room temperature, it must be used within 14 days, even if it is put back in the refrigerator. If it is not used within 14 days, it can no longer be used; call your pharmacist to find out how to get more Humira.

If Humira has been frozen, it can no longer be used.

Another note about Humira and temperature: For comfort, many people let the medication room to room temperature just before injecting it. This means taking the medication out of the refrigerator 15 to 30 minutes before using it. If you do this, be sure not to take off the cap or cover while waiting for the Humira to warm up. Let the medication sit and do not use any other method to heat it, such as running warm water over it.

Humira Pen Travel Storage

Humira comes in two forms: a “pen” or  pre-filled syringe. A variation known as Humira Citrate-free, which has the same active ingredient but causes less pain upon injection, is also available as a pen or pre-filled syringe. Storage and travel information are the same for all versions.

More information on the pen and pre-filled syringe is available here.

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Humira, also known as adalimumab, is part of a category called biologic drugs, which are made from, or include components of, living organisms. The drug comes either as a pen or as a prefilled syringe. Patients generally inject Humira under the skin themselves once every two weeks. The medication is usually only prescribed to people who have tried other treatments unsuccessfully. It’s used not only for IBD but also for several other autoimmune diseases, including ankylosing spondylitis and rheumatoid arthritis.

Many people who take Humira have no side effects. And when problems do arise, they are typically mild and disappear on their own, according to a patient information sheet from Guy’s and St Thomas’ NHS Foundation Trust. Serious issues are less common.

So what about Humira and fatigue? Does this medication have the potential to sap your energy?

Humira Extreme Fatigue – Does Humira Make You Tired?

Fatigue is not one of the common side effects identified by Humira’s manufacturer. Still, some patients do feel that the medication makes them tired.

Some patients complain of fatigue as a result of taing Humira.

Humira maker AbbVie lists several common side effects of the drug:

• Injection site reactions, such as redness, pain, itching, bruises, and swelling.
• Headache.
• Rash.
• Upper respiratory infection.
• Nausea.

Those are by no means the only potential side effects. AbbVie advises that if you have side effects that trouble you, you should contact your medical provider.

And AbbVie mentions “feeling very tired” specifically in three places in its patient information materials. These references are related to serious side effects or infection.

• Hepatitis B. In people who already carry this virus, Humira may increase the risk of a reactivation. Feeling very tired is a potential symptom of this problem. Other symptoms include muscle aches, vomiting, and lack of appetite.
• Liver problems. One of the serious side effects that the drug can cause is liver problems. Feeling very tired is one potential symptom of such issues. Others include skin or eyes that look yellow, pain on the right side of the abdomen, vomiting, and poor appetite.
• Infection. The company says to tell your doctor immediately if you have symptoms of infection. Feeling very tired is one of the possible symptoms to watch for, along with fever, cough, diarrhea, chills, sweating, and several others.

If you feel you may have any of the serious side effects listed on this page, be sure to contact your physician.

The Mayo Clinic lists “tiredness” and “unusual tiredness or weakness” among “less common” side effects of adalimumab and adds that you should check with your doctor immediately if you experience them.

We posted an informal survey on the Colitis and Crohn’s HQ Twitter account with the question: “For those who’ve taken Humira: Does it make you tired?” We received 143 votes, and the yes/no split was about 50/50.

Below is a sampling of the comments we received.

• No, not at all. The humira works very well for me without any side-effects. @kristafixe
• I almost always feel tired. Difficult to say if it’s because of #humira or not @jenfader
• Yes, I would feel tired for the rest of the day after injecting. @Mark_Mumford_
• Its a difficult question to answer as I’m sure the majority of us are feeling very fatigued before starting humira. If anything the boost of taking humira makes you feel more energetic, purely because its treating the pain and other symptoms, i don’t recall feeling tired. @tombartlett88

As you can see, experiences are all over the map! And it’s not always easy to know where the disease symptoms end and the medication side effects begin.

Somnolence, meaning a strong desire for sleep, and fatigue are among the most commonly reported side effects of Humira in patient reviews at AskaPatient.com, a comparative drug and health information site.

Humira Hangover – Day After Humira Injection

If you visit patient forums, websites and social media pages, you might run across the term “Humira hangover.” It describes a certain discomfort that some patients experience after taking Humira — a feeling not unlike what you’d get after a night of heavy drinking, but in this case you haven’t had any alcohol at all. Of course, “hangover” is a vague terms and describes not a single symptom, but a group of them. Some of them — particularly headache and nauseau — overlap with the common side effects identified by the manufacturer. And, as noted earlier, ulcerative colitis and Crohn’s disease themselves can bring plenty of issues, including fatigue; some of these symptoms are similar to those of a hangover. So perhaps it’s not surprising that some patients would report having a hangover-type feeling.

Still, some Humira users describe the Humira hangover as a distinct experience. Jenna Farmer described it in detail in a post at inflammatoryboweldisease.net. Hers kicked in after the second dose and made her feel as if she’d just done several rounds in a boxing ring. Symptoms included:

• Fatigue.
• Brain fog.
• Achiness.
• “Just wanting to curl up with Netflix.” (Perhaps this could be described as lethargy.)

Farmer wrote that the hangover was most noticeable for the first few days after the injection, but that the fatigue lasted well beyond that. Interestingly, despite being tired, she did not sleep any more than her normal amount. She didn’t feel that the hangover was due to the underlying disease, because she was normally pretty energetic and had not experienced fatigue or brain fog.

The term “Humira hangover” has also appeared in patient reviews at AskaPatient.com.

Keep in mind that people may use the term “hangover” in different ways. While in many cases they mean standard hangover symptoms, there are exceptions. In a post at ankylosingspondylitis.net, the term is used to mean a temporary worsening of disease symptoms — in this case, the pain and fatigue of ankylosing spondylitis.

Humira Side Effects After First Dose

The most jarring aspect of taking Humira for the first time is undoubtedly having to deal with injections, if you’ve never done so before.  And reactions at the site of the injection are the most frequent type of side effect with this drug, according to Guy’s and St Thomas’ NHS Foundation Trust. About 10 percent of people experience this side effect. The most common symptoms of such a reaction are redness, pain, itching, swelling, and bruising.

Allergic reactions can also occur shortly after you take Humira. Symptoms can include a rash as well as swelling of the hands, feet, and face. You might also break out in hives, and you may experience trouble breathing. It’s important to seek medical attention right away if you have these symptoms.

In the case of serious side effects, it’s possible you’ll need treatment and/or will have to stop the medication. But as noted earlier, you might not have any side effects from Humira, and if you do, there’s a good chance they will be relatively minor and clear up on their own.

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Hannah Witton, a YouTuber, posed for photos in her underwear after her surgery for ulcerative colitis. Photo: Screenshot from YouTube.

Getting used to having a stoma was a challenge. One way she learned to love her new body was by embracing the changes. She posed for a photo shoot in her underwear as a way of showing that you can still be body-positive after surgery for inflammatory bowel disease.

The photos were taken by Linda Blacker. A mini-documentary about the photo shoot premiered at the Buffer Festival in Los Angeles.

In a blog post, Witton said her recovery was not always easy and that she had been on an “emotional rollercoaster.”

Watch the video:

Here’s the video description from YouTube: “On 14th January 2018 I had life altering surgery that resulted in my having a stoma. I now have a huge scar and wear a stoma bag, which I’ve decided to call #MonaTheStoma.”

Witton talks about her IBD and her surgery in several other videos on her YouTube channel. Her other content focuses on topics such as relationships, sex, liberation and welfare issues, literature, and travel.

The post Hannah Witton underwear photoshoot: YouTuber poses after ulcerative colitis surgery (Video) appeared first on Colitis and Crohn's HQ.

Ulcerative colitis is a type of inflammatory bowel disease that affects about 1 million people in the U.S. It is an autoimmune disease that affects the digestive system, causing inflammation in the innermost lining of the large intestine (colon). Symptoms of ulcerative colitis can include abdominal pain, cramps, rectal bleeding and bloody diarrhea.

Shown here is the surface affected by ulcerative colitis. Filgotinib is being evaluated as a possible treatment for UC.

This disease can be treated via anti-inflammatory medications and surgery.

Filgotinib is a drug that is being investigated as a possible treatment for ulcerative colitis. It is also being investigated for use in several other conditions, including Crohn’s disease, rheumatoid arthritis, Sjögren’s syndrome, uveitis, ankylosing spondylitis, lupus membranous nephropathy, cutaneous lupus erythematosus and psoriatic arthritis.

The drug was initially developed by Belgian-Dutch pharmaceutical and biotech firm Galapagos NV.

Filgotinib FDA Approval

Currently, filgotinib is still an investigational agent, as it has not yet received approval from the U.S. Food and Drug Administration (FDA) or any other recognized medical regulatory body. As such, it is not available on the market.

But that could soon change.

Filgotinib is a drug developed by Galapagos NV.

Testing is farthest along in rhematoid arthritis patients. Galapagos and another company, Gilead, have been working together to present filgotinib as a safe and effective drug to the FDA. Trials have suggested that filgotinib “is better than methotrexate alone while suggesting it has an edge over AbbVie’s Humira” for rheumatoid arthritis, FierceBiotech reports.

Gilead has also filed for approvals of the drug in Japan and Europe. Filgotinib has been accepted for a marketing review by the European Medicines Agency (EMA). It’s anticipated that approvals will start to come through in the second half of 2020, Fierce Biotech reports.

Applications for approval are based on phase 3 testing of the drug in nearly 3,500 rheumatoid arthritis patients. FierceBiotech reports that the data made available seem likely to win approval for the drug. What’s less clear is whether filgotinib will have clear enough advantages over competing drugs to yield blockbuster sales.

But as noted, filgotinib is being tested for other conditions as well. The drug showed promising results in a recent trial in 1,348 ulcerative colitis patients. At a 200 milligram dose, it led to remission at a higher rate than a placebo did, according to the research.

The findings suggest that the drug could lead to “meaningful and sustained improvement in treatment response with an oral therapy,” said Merdad Parsey, chief medical officer for Gilead Sciences.

Gilead hopes that within four years the drug will be marketed for five disease indications.

Filgotinib Side Effects

Much of the buzz around filgotinib has centered on its promising safety profile. Other drugs in its class — “oral, selective JAK inhibitors” — have raised safety concerns, MarketWatch reports.

Filgotinib is what’s known as a “highly selective JAK1 inhibitor.” JAK inhibitors, also known as Janus kinase inhibitors, are a newly discovered way of treating inflammatory and autoimmune diseases because of their capacity to block signals across multiple cytokines.

Two well-known examples of JAK inhibitors are Xeljanz, from Pfizer, and Olumiant, from Eli Lilly. MarketWatch reports that they are sometimes known to cause serious side effects such as increased chance of infection and cancer. In addition, MarketWatch reports that Olumiant has been linked to cardiovascular troubles.

In research on rheumatoid arthritis patients, filgotinib has been to shown to be as effective as competing drugs and to have a safety profile that is encouraging, according to MarketWatch.

Filgotinib Cost

Cost has long been a concern when it comes to treatment for chronic conditions such as ulcerative colitis, Crohn’s disease and rheumatoid arthritis. In the U.S., insurance plans typically cover treatment for these diseases, but in many cases they do not pay 100 percent of costs, and patients must pay the remainder themselves.

As filgotinib has not yet hit the market, it’s not clear what its cost may be. Fierce Pharma reports that overall sales of the the drug could hit $1.28 billion in 2024.

Filgotinib will be a competitor to upadacitinib, which AbbVie markets as Rinvoq. That drug won FDA approval for treatment of rheumatoid arthritis in August 2019.

The price for a year’s worth of upadacitinib is approximately $59,000, according to Reuters. AbbVie said it was making available a co-pay card and support program so that eligible patients with private insurance could get the drug for $5 a month. A different assistance program from the company would make upadacitinib available for uninsured and underinsured patients.

Filgotinib vs. Upadacitinib

These two drugs are extremely similar, with the same mechanism for treating the same set of diseases. Upadacitinib is a drug manufactured by AbbVie, which was initially a shareholder in the development of Filgotinib with Galapagos NV, but pulled out later in September 2015.

Upadacitinib

It was then that Galapagos associated themselves with Gilead to have a partner in the development and promotion of the drug.

Another difference between the two is that Upadacitinib has already won the race in securing the approval of FDA for usage of the public. This might have given Upadacitinib a head start in the market, but who will come up as the leader of the market in the future will be decided once Filgotinib gets the approval from FDA and enters the market.

The post Filgotinib for ulcerative colitis – UPDATED 2020 – FDA approval prospects appeared first on Colitis and Crohn's HQ.

A recent episode of the British reality show First Dates showed what it can be like. Scroll down to watch the clip.

In the episode, Ruth, age 29, explains that she’s ready to meet that special someone after a period of dealing with Crohn’s disease. She had surgery for the condition last year and now has a colostomy bag that she named “Mike.” She chose a man’s name because in her view, men are full of … well, you know.

Her attitude is positive and she says getting her disease under control has “given me a new lease on life.”

“It’s changed who I am,” she says. “I wouldn’t be the girl sitting in front of you if I hadn’t had the surgery.”

She’s looking for someone who can keep up with her high energy level and hold his own against her sharp wit.

As for romance, Ruth hasn’t had the best luck so far. She explains that she’s dated nine men in the past year but has trouble getting past the fourth date or so.

“You just don’t hear from them,” she says. “You get massively ghosted.”

On this first date, Ruth meets a guy who show lots of interest, understanding, and compassion. He’s a big fan of her positivity.

But are they a good match? Ruth doesn’t seem so sure. At the end of the episode, we learn that she found him a bit loud and felt that he was talking at her rather than to her.

Watch the video:

It’s interesting that Ruth made the bold decision to bring up her condition on the first date. Some people like to get the information out there right away, before developing emotional attachments, in case the other person turns out not to be understanding. But many others wait a bit later to have the discussion, hoping to first figure out whether there is a connection.

There’s no right or wrong approach, but it’s always a good idea to determine whether you can trust a person before sharing highly personal information. When you have a chronic disease, the screening process becomes perhaps more important than ever, and you need to choose someone who can be supportive and handle the ups and downs of your condition.

The episode was not the first time a “First Dates” participant had Crohn’s disease. In 2017, Mandy went on a date and fell ill during dinner. Her date had no problem with her health condition and was eager to see her again.

“I don’t judge anybody because of something like that,” he said. “I’m not put off by her ailment. It’s more about her, herself, and she seems a nice person.”

Unfortunately, Mandy, like Ruth, didn’t feel a spark.

Watch the clip:

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Put simply, many of us feel exhausted some or all of the time. Scroll down to read what our Twitter followers had to say about fatigue and how they combat it.

Of course, everyone gets tired sometimes, whether they have inflammatory bowel disease or not. The difference here is that the lack of energy is way beyond what’s to be expected after a long day. The fatigue that sometimes comes with IBD can be extreme, and it is not necessarily relieved by sleep or rest. It can have a major negative effect on all aspects of your life, including work and relationships.

Have good days and bad. Takes about 2 hours in the morning to get going then by 6pm exhausted. If I do lots one day the next day can’t move no energy. I have Crohns.

— Paul Dobson (@pauldobo64) March 12, 2020

Crohn’s! I’m constantly tired and nothing helps, not even sleep. My b12 injection takes the edge off though. I am so jealous of people who don’t feel like a walking zombie!

— Rachel Schacter (@Rachyshax) March 12, 2020

More than 75 percent of people with IBD feel fatigue during a flare, Crohn’s and Colitis UK reports.

Why does IBD make you feel so tired? During a flare, fatigue can simply be the body’s reaction to inflammation and being sick, according to the IBD Clinic at the University of Alberta. Some other factors that come into play include sleep problems, anxiety and pain.

Some Crohn’s and ulcerative colitis patient also develop anemia, which can further sap your energy. And the digestive symptoms of IBD can lead to nutritional deficiencies that drain your energy, Crohn’s and Colitis UK notes.

Crohn’s here. If I know I’m getting enough sleep, I boost my iron intake, and make sure I’m also getting B12 and Vit D.

— Bethany L Persons (@bethanylanell) March 11, 2020

Unfortunately, it’s not always clear what causes fatigue in a given IBD patient. The exhaustion sometimes continues even after other symptoms are under control. (Some researchers estimate that close to half of IBD patients in clinical remission still deal with fatigue.) That may be related to lingering inflammation, according to the IBD Clinic. Or it could be connected to IBD treatments.

So what can you do about it? For starters, get tested for any possible nutritional deficiencies, such as vitamin B-12 or iron, and correct them if need be. Other than that, most measures come down to self-care. Recommendations from Crohn’s & Colitis Australia include:

• Stay as active and fit as possible. This isn’t always easy, but the better shape you are in overall, the more energy reserves you’ll have.
• Take a look at what you’re eating. A diet that includes a good balance of complex carbohydrates such as oatmeal, along with plenty of fruits and vegetables and protein, is likely to help you maintain your energy levels. Simple carbs of the type found in cookies and cakes may provide you with an energy boost followed by the “sugar blues.”
• Avoid overdoing it. Learn your limitations and try to manage your responsibilities at work and home based on what you know you can do. Try to make time for breaks and for activities that help you regain your energy, such as yoga or massage. Remember to put your health first not only when you are in a flare, but all the time.

Don’t be afraid to cancel plans and rearrange your schedule if necessary!

Crohn’s disease. I am constantly exhausted. I might have to cancel plans/skip gym so I can nap and/or have an early night.

— R (@_rileyrd) March 11, 2020

On Twitter, we asked: “Do you ever experience exhaustion due to your IBD? How do you deal with it? (Please say whether you have ulcerative colitis, or Crohn’s.)”

Below is a sampling of what our followers said. Be sure to join the conversation on Twitter.

Yes, I have significant exhausion regularly, I don't have any great way of dealing with it. I have however, got good at searching streaming services for interesting movies although usually nap before watch them. Oh hope someone has something better #Crohns

— PUFFER FISH (@puffdfish) March 12, 2020

I have UC. I deal with fatigue by resting.Only do one small job at a time. Example; Iam sowing my seeds for the veggie PLOT, I can only do one veggie sow a day. Maybe dust one table. I no longer worry. Iam now retired.I know I could not go to work. Have failed at all attempts PIP

— lydia denton (@lydiadenton1) March 11, 2020

Crohn’s and yes I do suffer exhaustion at times. I force myself to walk 30 minutes every day regardless

— ML Goodacre (@MLGoodacre) March 12, 2020

i have UC and honestly i don’t have a healthy way of coping with exhaustion, i just sleep all day the days that i can :/

— diana (@dicchocola) March 11, 2020

Crohns and I have a b12 injection every couple months, it helps abit.

— Emma (@meowalfieoscar) March 11, 2020

Just dig deep and push #crohnsiscray

— Nic (@NicG02) March 11, 2020

UC. Sometimes sleep works. Sometimes in the morning forcing myself to walk my son to kindergarten works.

— Gut Knowledge (@gut_knowledge) March 11, 2020

Yes.. I have UC and am on Entyvio.. I am a fitness instructor and that helps plus I take naps when I can!

— shari (@73Weed) March 11, 2020

Crohn's and caffeine or laying on my left side for about an hour

— Sevenlances (@Sevenlances) March 11, 2020

UC – paleo diet and regular exercise have done wonders for my energy levels and have helped w exhaustion. Vitamin D supplements also. Learning when and how to say no and take a rest is also crucial. Otherwise it builds up and it’s way, way worse.

— Maura Leary (@MauraL33) March 12, 2020

Absolutely! Try to cut out as many starchy carbs as possible, high fat or sugar foods… But to be honest anything I eat feels like it is killing me from the inside. Everyday I'm exhausted. Eat small snacks & rest often. No lactose or gluten can help too.
#crohns

— Oriana White-Creativity for Wellbeing (@OrianaWrites) March 12, 2020

I have CD, and experience severe fatigue a few times during the year! The last time I needed an iron infusion, it helped but the levels dropped very quickly and needing another 1 soon. B12 injections help but only very slightly.

— Jacinta (@jacintacahill) March 12, 2020

Crohn’s. Have been on Remicade for 11 years and it has given me my life back. Yes to exhaustion. Semi-retired so easier for me to nap/rest. Interesting to read comments and how some people can eat fresh fruits/veggies. That would send me to the ER.

— Cheryl B. Lesher (@CherylBLesher) March 12, 2020

Ulcerative Colitis. I sleep whenever I can but I haven't found anything else that really works.

— Michelle B (@MBeblowski) March 12, 2020

(Crohns) there's only one way to deal with exhaustion that is planning. I know that going out one day will likely wipe me out for a day or two afterwards. So I try and get as much done as possible and then not stress too much when I need to rest.

— Aspi(r)e (@Aspie01787322) March 11, 2020

UC for me. Fatigue is not controllable IMO, however can get spikes of energy from wrong food types which puts on the weight, and also causes bowel issues. Important to try and keep peaks and troughs as level as possible – not easy.

— Rich Dyer (@richdyer) March 11, 2020

Crohn's. I'm actually experiencing chronic fatigue right now. I'm absolutely exhausted, had belly pains since yesterday midday and feel sick. No idea what triggered it and nothing helps. My next plan is to find an acupuncturist.

— Leigh D (@LeighMaximoff38) March 11, 2020

Yes, ulcerative colitis. When I'm feeling exhausted, I try to prioritize what really needs to be done and let other things go. I have only so much energy in a day.

— Stacey (@StaceyDelilah) March 11, 2020

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Some people find that diet doesn’t affect their condition too much, or at all. Others are exquisitely sensitive to certain foods. But what those foods are varies greatly from person to person. And beyond the issue of individual differences, there’s another point to consider: Foods that are fine for someone in remission might cause problems during a flare.

There’s no particular diet plan that has been demonstrated to help IBD. The best approach is to monitor your symptoms carefully and see if you can identify patterns based on the foods you’re eating. A food journal can be a useful tool to help you keep track. The goal is to limit or eliminate as few foods as possible so you continue to get balanced nutrition.

That said, there are some general guidelines for when you’re in an ulcerative colitis or Crohn’s flare and for when you’re recovering from a flare. For example, if you are experiencing diarrhea and abdominal pain, a low-residue diet may ease your symptoms. And you may be better able to tolerate smaller meals at more frequent intervals, helping you to get enough nutrition.

As you begin to get better, it’s best to gradually reintroduce foods to see what works best. A few items that work for many people are oatmeal, white bread, apple sauce and mashed potatoes. Check out this page from UCSF Health for more tips.

The Crohn’s and Colitis Foundation also offers some helpful advice on diet and IBD. For example, taking extra care in planning and preparing your meals can be a major element in helping you deal with flares and get proper nutrition. Keep a ready supply of foods that you know work well for you in a flare, and use basic cooking methods such as steaming, boiling and grilling.

We wanted to get a sense of which specific foods cause problems for our readers. So we posted the following question on Twitter: “What’s a food you absolutely cannot eat anymore because of IBD? (Please say whether you have ulcerative colitis, or Crohn’s.)”

As you might guess, the answers were highly varied. Remember that what holds true for one person might not be the case for someone else. It’s best to talk with your doctor if you have concerns about your diet.

With that in mind, here’s a sampling of what readers shared. Head over to Twitter for a more comprehensive view of potentially problematic foods.

Nuts and seeds are a bit of a theme.

1.

Since being diagnosed with Ulcerative Colitis, I can no longer have dairy, corn, nuts and anything with gluten.

— Twanz Ruckus (@IAmTwanz) February 7, 2020

2.

Ulcerative pancolitis- nuts , sweetcorn ,onions, brown bread, seeded bread, stuffing, cereals-weetabix.

— tracy (@tracyjcox) February 7, 2020

3.

Nuts/seeds. I have ulcerative colitis.

— Michelle B (@MBeblowski) February 8, 2020

4.

Crohns Fruit/baked beans/fiber/smoothies/nuts/if i do eat these is results in chronic diarrhoea and pain in small bowl .

— Pattayabars (@pattayacam) February 7, 2020

5.

Can’t eat nuts (especially peanuts) due to Crohn’s.

— Kenzie Burns (@kenzie_burns) February 7, 2020

A lot of people mentioned dairy.

6.

Crohns – Dairy, green fruit & veg, spicy, fatty or fried food

— Lisa Barnes (@LiseMB3) February 7, 2020

7.

Have crohns and I avoid dairy..

— Jacinta (@jacintacahill) February 7, 2020

8.

Crohn’s(small bowel): Nothing Citrus, Dairy, roughage like salads, definitely no apples of any kind, Caffeine, or Pork.

— Cori (@medpepper) February 7, 2020

Fruit was noted quite a few times.

9.

Crohn’s small bowel : anything fibrous ,veg ,fruit, wholemeal, nuts,seeds

— Runsforcoffee agrees with A.M racism is poison (@Runsforcoffee1) February 7, 2020

10.

Salad stuff, sweet corn, mulled wine, I don’t know why, too much fresh fruit, granary bread or multi grain anything, small amount of meat okay. Crohn’s, right hemocolectomy surgery 35 years ago.

— Carol Elena M (@CarolEMartin19) February 7, 2020

In some cases, very specific fruits wreak havoc.

11.

Ulcerative Colitis- I just can’t tolerate clementines anymore

— Jacqueline Hyslop (@JacquelineHysl2) February 7, 2020

12.

Apples, and I miss them lol

— Sam (@trbledtimes98) February 7, 2020

13.

Crohns. No more pineapple, rhubarb, brown bread, raw vegetables to name a few

— Heather Fitzpatrick (@__heatherfitz__) February 7, 2020

Certain vegetables made the list, too.

14.

Corn. Broccoli. Brussel sprouts. Ileocecal crohns.

— B. Nix (@BennyRoubaix) February 7, 2020

15.

Raw carrots and chickpeas (sadly)

— Sheila Harrington (@sharrington_k) February 7, 2020

16.

Crohn’s: Brussels Sprouts and Broccoli for me. Which is a shame, because they were my absolute favorite foods. If I do eat them, I run a 50/50 risk of developing a small bowel obstruction, which puts me in the hospital for several days. Leafy greens also irritate me now. So sad.

— Cody Westfall (@Avogato_Rolls) February 7, 2020

17.

Since being hospitalized in September of 2018 because of Crohn’s disease I haven’t had broccoli nor cauliflower (both of which I enjoy) because it makes me violently ill.

— Maegan Chavez (@maedae523) February 7, 2020

Spicy foods cause problems for many people.

18.

UC cant eat anything spicy, cherries, blue cheese, milk, orange juice, whole grain anything

— Shannon Mennie (@Snanm) February 8, 2020

19.

I cant eat spicy foods or dairy product because of my crohns

— Cody Elliott (@cdale1215) February 7, 2020

And popcorn is off limits for some.

20.

Crohn’s: popcorn

— Jenn (@electricself) February 7, 2020

21.

Colitis: corn, popcorn, spicy food

— Ashana Patel (@ashanapatel16) February 7, 2020

22.

Peanuts and popcorn
Crohns Disease

— paul buckley (@irishbucka) February 7, 2020

And a wide variety of other items are in the no-go zone.

23.

I have UC and anything with malt will irritate my guts A LOT. Hard when the Aussie favourite hot chocolate is Milo (malted chocolate drink) and hot chocs are life

Malt is also a hard one because it can be sneaky and in things like bread products, sauces, and more! Fun!

— Hate my guts (@IBDcanSmyD) February 7, 2020

24.

Crohns: For some reason, I get bad gastro discomfort from eating Italian ice. I also run into issues with seeded foods (bread, watermelon, etc.).

— John Flesch (@ganggreen82) February 7, 2020

25.

White Pudding, Black Pudding, Fish Suppers I’m guessing it is the high levels of sat/tri fats #ulcerativecolitis

— Mike Byers (@mkbimaging) February 7, 2020

26.

Cereal any kind. crohn’s, small bowel

— Victoria Threadgold (@mrs_t75) February 7, 2020

27.

I’m still learning as recently only found I have Crohn’s but so far I know that pizza () aggravates it, dairy, spicy food and rich sauces. Basically everything nice

— Knotted Knits (@knits_knotty) February 7, 2020

28.

Red onion too often one day fine but if I have it two days in a row not so fine ulcerative colitis

— Steph (@rosiesteph) February 7, 2020

Which foods bother you? If you haven’t commented already, be sure to join the conversation on Twitter. (And don’t forget to follow us!)

The post Colitis and Crohn’s patients talk about the foods they absolutely cannot eat appeared first on Colitis and Crohn's HQ.

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

The post IBD patients reveal what they’d tell someone new to ulcerative colitis appeared first on Colitis and Crohn's HQ.

“I literally cannot believe you just said that.” Image by Robin Higgins from Pixabay

It’s understandable that people don’t know what inflammatory disease is all about. Most of us didn’t, either, until we were diagnosed with it.

The issue is that some people don’t seem willing to learn. Sure, certain people in your life are likely to be wonderfully understanding and empathetic. Be sure to let these people know how much you appreciate them! Others, however, can come across as almost aggressively ignorant about your chronic illness. This can include friends, family members, romantic partners, colleagues, you name it. Sometimes even medical professionals aren’t as well-versed in IBD as one would hope.

We asked our growing Twitter community: “What’s the most RIDICULOUS thing someone has said to you about your IBD?” Look through the answers below and you’ll probably feel frustration and, at the same time, an odd sense of relief that you’re not alone in hearing some of these deflating comments. The unwelcome dietary advice, the blatant misunderstandings, the accusations of being crazy … it’s all here!

Let’s hope that we can increase public awareness about IBD in all its forms so that, someday, people won’t say hurtful or dismissive things about our conditions anymore. Until then, it’s best to develop a thick skin, educate others when possible, and vent with others who do understand. Be sure to follow @colitiscrohnshq on Twitter to find lots of folks who know exactly what you’re going through.

And be on the lookout for Part 2 of this article series, where we’ll bring you even more utterly ridiculous things that people said to IBD patients.

Some people are pretty sure that your IBD isn’t the big deal you think it is.

I think it’s all in your mind. Are you sure you’re not just anxious?

— Sheila Harrington (@sharrington_k) January 21, 2020

Many people confuse Crohn’s and colitis with something else. Something quite a bit less serious, and more fleeting.

Oh, I had that ONCE!

— Justine Mower (@jussiemow) January 21, 2020

Poof, it’s gone! (I wish …)

You’re looking well has the crohns gone ?

— Andrew Horton (@villandrew) January 21, 2020

Despite a lack of medical or scientific training, lots of folks think they know what’s causing your disease. (Hint: They believe you’re doing it to yourself.)

“Is your vegetarianism anything to do with it?”

— Ellis Creez (@EllisCreez) January 21, 2020

They’re pretty sure it’s because of the way you eat.

My father: you got UC, since you eat out a lot!

— Ken Salehi (@SalehiKen) January 21, 2020

So many misconceptions.

The Top 5 Things Said To Me:

1. Have you tried changing your diet and exercising?

2. It’s all in your head.

3. If I’ve never heard of this illness, it doesn’t exist.

4. If I kiss you, can I catch it?

5. I’m sure it’s a stomach bug and you’re being traumatic.

— Twanz (@IAmTwanz) January 21, 2020

Sometimes even doctors have weird ideas.

From a doctor: That apparrently all my rectal bleeding and terminal ileal inflammation are a result of anxiety/depression.

From well meaning civilians: Have you tried manuka honey/cannabis/yoga/accupuncture…. the list goes on.

— Sam B (@crohns_999) January 21, 2020

Cures, cures, everywhere cures.

Have you tried having a cup of tea without milk or have you tried herbal tea

— Steph (@rosiesteph) January 21, 2020

If only it were this simple.

Aloe vera will cure your gut issues. #stupidcomment

— Jennifer Marks (@jennjmarks) January 21, 2020

Or this simple.

Eat some crackers, you’ll be fine! #crohnsdisease #jpouchlife

— Jami Star (@Jamistarme) January 21, 2020

There’s a lot of minimizing going on.

1) oh ya I have IBS you just need to cut out dairy and u will be fine!

2) your too young to health problems, you will get over it!

3) stop being such a wimp its not that bad – 1 week later- emergency surgery then spent a month in intensive care due to sepsis!

— sam (@sam_marie1985) January 24, 2020

Apparently if it’s not immediately visible, then it must not be a real disability.

Use your own toilet, these ones are for people with disabilities.

— M e l a n i e (@mellowe19) January 21, 2020

And perhaps it’s not even real at all!

“ You don’t look sick. “

— Hope ☤ CST (@TheSassyScrub) January 23, 2020

Even friends and family can be really insensitive.

A friend asked me if I liked being sick. In the matter of did I enjoy it? I replied with a big fat no!!!

— Jessica Rose (@JessicaSteelle) January 22, 2020

Pretty sure you don’t actually know how I feel.

“The other day I was in the bathroom for two hours from eating Chipotle I know how you feel” pic.twitter.com/AyMcndtSZE

— meësh (@mushkabarton) January 21, 2020

Ugh.

My dad told me it was a belly ache and to stop being dramatic, I nearly died 3 weeks later and was hospitalised for 3 entire weeks. He was recently diagnosed with Ulcerative Colitis.

— emmy (@youmemmatsix) January 21, 2020

At times, you get accused of making life inconvenient for those around you.

You use too much loo roll (which i pay for) pic.twitter.com/fXH66rE4H5

— Ed P (@EdPapworth) January 21, 2020

It’s can make you feel like burden.

“ What another toilet stop”

— rita ditch (@chop1960) January 22, 2020

It even happens at work!

Manager to me “Why do you spend so long going to the toliet? Can’t you control it or wait until it’s more convenient to others in the workplace ?”

— Mark Stannard (@MarkStannards) January 21, 2020

People point out supposed “bright sides,” and that’s not always helpful. At all.

“Well it’s a good way to lose weight. I wish I could be as slim as you” …..I looked hideously thin and skeletal at the time.

— Jeanine H (@J9JSM) January 21, 2020

Believe me, you don’t want to lose weight this way.

Oh yeah I had a woman who had gastric sleeve surgery go off. At time I had a servre flare lost 50kg in 50 days and ended up in emergency surgery at end. While I was losing weight getting diagnosed she complained to her Dr I was losing more weight than she was.

— PUFFER FISH (@puffdfish) January 22, 2020

My personal favorite: the implications that you’re crazy.

Runner up: You are skinny and happy. You don’t look sick. What’s your doctors name and how long have they been a doctor?

Winner: it’s all in your head. I think if you just ignored it, it would go away

— Court. (@c_singleton23) January 21, 2020

People say this stuff all the time.

“you’re making it all up”
i nearly died after struggling for a year and ended up in a coma for a month, not expecting to live past it. all because i “was making it all up”

— kylie (@kylie_honestly) January 21, 2020

Or maybe you just love drama?

That I love the attention I’m getting from it when I’m lying on the work couch in pain, and I should recognize how much my sickness puts me in the spotlight

— Carolin Sachgau (@carosachgau) January 21, 2020

But we as out patients know what we’re dealing with, even when others don’t understand.

It’s all in your head and that was from a doctor,2 life saving operations later,can truly say it’s not all in my head having crohns for 34 years think I know best doc

— . (@olivebeatt) January 22, 2020

Sometimes all you can do is laugh.

So if you don’t eat fruit because of Crohns does that mean you can’t have fruity pebbles? (It’s stupid but it is funny. I don’t have the brightest friends)

— JohnnyCrohns (@JohnnyCrohns) January 22, 2020

The post 26 ridiculous things that people actually said to Crohn’s and ulcerative colitis patients appeared first on Colitis and Crohn's HQ.

Crohn’s and Colitis Headquarters has built an active community on Twitter at @colitiscrohnshq, and it’s a great way to find out what people think. We asked our Twitter followers: What’s the WORST thing about having IBD?

This article isn’t meant to be a downer. As noted, most people with IBD can still be happy and productive, with some adjustments. But when you’re having a flare, it’s easy to get depressed, and it helps to know that there are plenty of people out there who “get it.”

Here’s what people said:

1. The Constant Uncertainty

It’s frustrating to feel that you’re not in your control of your life.

Having to cancel plans when a flareup starts. No matter how many times you explain to family or friends what’s happening with you they don’t understand or believe you.

— Twanz (@IAmTwanz) January 1, 2020

When you have IBD, your condition can change with no warning whatsoever.

The uncertainty. You’re feeling good one day and the next day might be a different story.

— T!m (@Goober99_) January 1, 2020

2. Bathroom Issues, of Course

If you have Crohn’s or colitis, you know this all too well!

Is during a flare up having the worst wind and having to go to the bathroom every time you have wind in case of accident . That and the soreness from going to often sometimes resulting in anal fissures etc

— The one&onlyNonie! (@noniedougal231) January 1, 2020

Going to the bathroom can take over your life during a flare in a way that most will never comprehend.

Stairing at bathroom walls

— DJack (@DjackFOC3) January 1, 2020

It can be quite embarrassing at times.

Being heard on the toilet

— Sabrita Dale (@SabritaDale) January 2, 2020

By necessity, figuring out where the nearest bathroom is becomes an obsession.

Urgency when flaring, and having to know where all restrooms are located just in case. Secondly, people’s lack of understanding of the disease….even though I have tried to educate them.

— Jennifer Marks (@jennjmarks) January 1, 2020

3. The General Cluelessness of People Around You

You can never assume that friends and family understand what you’re going through.

People not understanding just how completely it takes over your life

— Tatum (@Ma2adams) January 1, 2020

As a rule, they have no idea.

People not actually understand what your condition is!

— CHLᎧE (@ChloeP96) January 1, 2020

They often think you just have minor digestive problems.

Some people still – after 30 plus years – don’t realise it isn’t just a jippy tum.

— Jackie Rainford (@JackieRainford1) January 2, 2020

And unfortunately, many don’t want to learn more.

The fact that it is both invisible and taboo. You don’t look ill but when you try to explain the symptoms, the subject touchess things most are uncomfortable talking about. So its then easier to hide it to make things less awkward. It’s a catch 22 situation.

— Laura Bauld (@LaLaBauldie) January 1, 2020

4. Having to Watch What You Eat

For some people, IBD brings dietary limitations.

My diet. Can’t eat vegetable, nuts, a lot of fruits, anything whole grain. Going out to eat sucks

— Brady Lake (@Bradyhockey25) January 2, 2020

5. The Exhaustion

IBD has a way of sapping every last bit of your energy at times.

The fatigue is horrible. Literally feel drained and its just bangit hits feel hollow with nothing inside. Migraines are another pleasant side affect im experiencing. . #WEFIGHTON pic.twitter.com/ijEzFjIjGu

— Ed P (@EdPapworth) January 1, 2020

It pretty much hits us all at one point or another!

Fatigue. Thinking you can go about your day then feeling exhausted walking to the next room

— Jim Dawkins (@jimmyJAD16) January 1, 2020

6. The Pain

When you’re having a flare, IBD can hurt. A lot.

The worst thing about having Crohn’s is the pain. The physical pain is excruciating and extends from your digestive system outward, but there’s emotional pain as well. What you’re going through extends from you to those around you.

— Stephanie (@MissBension) January 1, 2020

7. The Way It’s a Hidden Disease

You can’t necessarily tell from the outside that someone has Crohn’s disease or ulcerative colitis.  Sometimes people have a hard time understanding that you’re sick.

The fact that it’s an invisible disease. People never really understand how debilitating it is because we look healthy on the outside.

— Jessica Rose (@JessicaSteelle) January 2, 2020

Nobody wants to look ill, but it’s hard when people just don’t get what you’re going through.

“You look fabulous!” Said to me after I’ve sat on the toilet since last nights supper until 5am and afraid to go to sleep in case my depends leak.

— ML Goodacre (@MLGoodacre) January 2, 2020

8. The Fact That It Affects So Many Aspects of Your Life

IBD can touch just about every aspect of your life, including work, family, romance and social activities.

Missed opportunities. Not being able to travel, missing/cancelling plans, not doing your dream job, not being able to eat out/do the same range of activities.

— Susan H (@Susanthecrohnie) January 1, 2020

Travel can be a particularly big issue!

Being afraid to be in a car for a long amount of time

— Crohnie Pants (@wannabehxc) January 1, 2020

9. The Treatments and Diagnostic Procedures

We need them, but sometimes we hate them.

Infusions!!! Every time I have to put everything on hold to spend hours in the chair and lose work and copay $$!!

— Bill N (@MemRibMan) January 1, 2020

Colonoscopy prep is no one’s idea of a good time!

Drinking prep before a colonoscopy!(only because I’m going through that right now) but canceling plans and people not understanding why you may need to cancel

— Haley Stearns (@haleyyy_6) January 2, 2020

10. The Complications and Related Conditions

IBD sometimes brings along unwelcome “friends.”

Going to the emergency department last night with haematemesis and melaena ranked as a new low. Colonoscopies are a close second. Enteropathic Ankolysing Spondyloarthritis isn’t much fun either…

— Sam B (@crohns_999) January 2, 2020

That’s because IBD and its treatments affect the body in so many ways.

Combined with side effects from medications, it really is an all-encompassing illness: The endless list of GI issues, but also fatigue, additional sickness from immunosuppressants, nausea, headaches, etc.

— Lauren Nolan (@LaurenNolannn) January 2, 2020

11. The Combination of Everything!

This isn’t exactly a separate item, but let’s face it: Sometimes it all hits at once and that’s when IBD really takes on a life of its own.

The unpredictability.The fatigue.The anemia. The mental issues.The pain. The lack of understanding of the illness. The expectation that you HAVE to get better. The… it’s hard to pinpoint one single element as our lives get turned upside down, so many factors. #ulcerativecolitis

— Matilda Blixen (@Matilda_Blixen) January 2, 2020

The post The 11 worst things about having Crohn’s or ulcerative colitis appeared first on Colitis and Crohn's HQ.