Review: My Foreign Cities

MFCMy Foreign Cities is not about inflammatory bowel disease, but it is about illness — and also love and hope. In the book, author Elizabeth Scarboro remembers her sweetheart and husband, a man who had cystic fibrosis. It is an excellent book for people struggling to love — or be loved — despite a serious disease.

The story starts in high school, when Scarboro begins dating a boy named Stephen Evans, who has cystic fibrosis. Initially, it’s not such a bad thing: he has coughing fits, and takes enzymes with his meals, but that’s about it. They graduate, go to different colleges, move in together, get married, and all the while Stephen’s CF is getting worse.

Scarboro is careful to point out that this story isn’t just about Stephen: it’s about her, Stephen, and CF, and the relationship among the three. That deliberate focus saves her from trying to make too much (or too little) of Stephen’s life. The story she tells is loving, trying, and surprisingly joyful.

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What’s The Best Prep?

CrohnoPrep

You probably know how awful bowel prep is. You also might know that there are different kinds of bowel prep, and the regimen can vary from doctor to doctor. So what is the best bowel prep?

Bowel prep — for those blissfully unaware — is the process of cleansing out your large intestine. It is sometimes done before surgeries, but most often before a colonoscopy. Bowel prep is important in colonoscopy so that the colonoscope can record accurate pictures of the internal lining of the gut.

Usually, bowel prep involves fasting for a day — drinking only clear liquids, no red Jell-o — and then taking a laxative to clean out the gut. The laxative typically works by osmosis to force the gut to secrete water, which rinses your insides clean. Osmosis is also how table salt kills slugs, by the way.

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“Now I Was Fearful Even Talking About Crohn’s…”

CrohnoKath2

(This is a guest post from Kathleen, who blogs at Crohnological Order. You can follow Kath on Twitter or like her page on Facebook. She lives in Scotland.)

Shortly following my diagnosis with Crohn’s, after learning little more than the basics from medical professionals, I dipped my diseased toe into researching online. I was nearly overwhelmed, but also dismayed to find almost every aspect of IBD portrayed under a massive cloud of negativity.

I visited forums which professed I would surely die, and how AWFUL my future would be if — by some minor miracle — I managed to grasp my bony hand around some semblance of a life. It was already scary enough coming to terms with not getting physically ‘better’, now I was fearful even talking about Crohn’s, too. Mainly because OMG IT’S TERRIFYING?! — and because there can be such unparalleled jealousy and competitiveness in the medical-world.

I’ve never understood the need to ‘compete’ with your fellow invalids. What does it achieve? This strange culture of ‘competitive suffering’, whereby patients seem inclined to outdo one another with bigger and better scars, tales of more traumatic ops or fewer bits of their insides is such school-yard behaviour it’s almost embarrassing.

I wholly appreciate that this negativity towards your illness is a part of life; it’s not a positive situation to find yourself in, so the natural reaction is to whine and bitch about how terrible the hand you’ve been dealt is.

But as a more experienced patient, I would gently advise using caution when audibly bashing certain aspects of your disease. Doctors, treatments, medications and symptoms may all be completely alien to new patients. Don’t tell them how horrific your experience is when they are already terrified. Bear in mind — even while your bad experience is at the forefront of your mind — not to pummel their experience into insignificance.

Yes, I would certainly say my own blog isn’t filled with endless joy, and I don’t spend my life with Crohn’s Disease skipping through forests with robin redbreasts whistling on my shoulder. But when I write I try to think of what I, as a patient, would want to read. I consider what words might aid my understanding of my disease and help me cope. What might help make someone like me feel less alone?

For starters, I want to feel that I am in positive company. I want to hear practical advice on how to cope with a chronic illness day to day. I want to feel my deepest fears are not singular nor embarrassing. I want to be able to see the good in my life, and try not to blame everything on my illness.

It’s true — of course — that there will always be those who love to wallow in the abject misery of their lives and constantly gripe about anything and everything. There are those people who seemingly choose to be unhappy — but I can’t go for that.

I want to try my absolute utmost to live happily despite my illness. I want to be able to express my pain without fear that I am going to be patronised or told how to behave. I don’t expect that behaviour from outsiders, so I wouldn’t wish those feelings on someone else.

My pain is not the same as Mrs. Smith in Bed 5. So I try not to tell her how to feel. Just because I’m not complaining (and don’t get me wrong: I DO) does not mean I should tell her not to.

I don’t need to give myself a gold star and a lollipop as a reward either – life is hard enough without us competing against one another in the Pain Olympics.

(If we can help you tell your story, see our guide for guest posts.)

Am I Disabled?

CrohnoDisable

People with Crohn’s and Ulcerative Colitis often have symptoms that get in the way of things we want or need to do. But are we ‘disabled’?

Short answer: yes.

The decision whether or not to self-identify as disabled can be difficult. When I first joined online communities for people with IBD, I found many other people who felt that ‘disabled’ was only for blind people or wheelchair users. Some people thought we were not even allowed to use ‘disabled’ restrooms.

It makes sense that some people refuse to let the disease take anything from them. For many people, the stigma of ‘disabled’ is something they do not wish to bear. For a long time, I saw myself as a very able person who happened to have a health issue.

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Where Is IBD Treatment Going?

crohnoGoThe last decade or so has seen dramatic progress in the science of inflammatory bowel disease. Now that progress is being translated into medicines and other treatments, some of which are soon to come to market. A recent paper looks at the directions IBD treatment might take in the near future.

The Crohnology blog has run a couple of posts lately looking at new drugs for Crohn’s and new drugs for UC. For anyone still scratching their heads about some of those drugs [author raises hand], this paper helps us understand the kinds of drugs that are in development, and what they promise to do.

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I Felt Like I Had Failed My Body

CrohnoFogelson

(This is a guest post by Marni Fogelson, who is a Crohnology member.)

When I was diagnosed with Crohn’s — after a difficult and often painful year — I read extensively: books, medical websites, blogs, basically anything that referenced what this disease would feel like and how it would change my life.

Of course, it already HAD changed my life, but I was looking for hopeful stories and reassurances that I wouldn’t always feel like this — “this” being horrible, exhausted, and scared of pain and embarrassment.

Although I eventually felt like I understood the physical aspects of IBD — before my diagnosis I would have been hard-pressed to tell you where my colon even was — it took me much longer to come to terms with the emotional aspects.

I felt like I had failed my body. As an active, athletic person who ate healthy and had no family history of IBD, I blamed myself.

I have two young children, one of whom was adopted from Ethiopia just a few months before my initial symptoms began. I felt like I was constantly falling short of my “good mother” expectations on days when being away from a bathroom for any length of time was impossible, or when I felt like I needed nap time as much as they did.

I worried that the life I loved, with plans for international travel and no need for medication, had vanished more quickly than I could even comprehend.

Through time — and as my disease has (knock wood) calmed as a result of medication, diet, and alternative treatments — I began to develop a healthier relationship with my body. Just as a parent learns that she can’t control her children at all times, I came to terms with the fact that sometimes my disease will act up without good reason. Worrying about it and berating myself isn’t going to help.

IBD can be mysterious and unpredictable, and so many of us try a variety of drastic changes in diet and lifestyle to keep it under control. I try not to take for granted the times that my digestive system actually cooperates, and I control the aspects of my health that I can. Letting go hasn’t been easy, but learning to relinquish responsibility has been valuable in other aspects of my life.

A few years post-diagnosis, I’d like to tell that scared woman — who doubted she would be able to travel, or chase her kids endlessly around the playground, or feel anywhere close to healthy again — that our bodies are capable of amazing things.

I know my current condition is likely to change, and that flares will challenge my mental and emotional well-being as much as my physical. But the knowledge that my body has recovered several times helps me remember that it can again come back to a place of health.

It helps me remember to have hope, and share that hope.

(If you would like to share your story, see our page on guest posts.)

Missing important IBD news? Sign up for the Crohnology newsletter.

crohnoNews

Did you know Crohnology has a newsletter? Every few weeks, we send an update on what we’ve been doing, including stories you might have missed. You should sign up.

We post to the blog twice a week at least. Most of those stories present key research in Crohn’s and Colitis treatment, or new voices from the patient community. Then, once a month or so, we put together a summary of every story we’ve worked on, plus other IBD-related news that caught our eye and anything else we think is important to the Crohn’s and Colitis community.

If you follow us on FB or Twitter, that’s great — we really appreciate it. But the fact is, you’re missing important stories — stories that we worked hard to research and write for you. We know from our stats that FB followers see only 1 in 4 stories, on average, and Twitterers even fewer. You might not see something vitally important to you, and that’s no good.

Instead, sign up for the Crohnology newsletter and never miss a story. It’s free, and you don’t have to be a Crohnology member (although check it out, if you aren’t already). We won’t fill your inbox with spam, and you can unsubscribe any time.

We want you to be up-to-date on the information that helps you manage your illness better. The newsletter is the best way to make sure you have that information.

 

 

What You Eat Affects Your Condition

CrohnoReed (Sean Reed is a Crohnology member.)

It took me seven years after my diagnosis to realize that my doctor lied to me.

I had asked my doctor the same question all recently diagnosed patients ask their doctors: what can I eat, or avoid eating, to mitigate my symptoms?

His response echoed the response many IBD patients hear: there is nothing for you to do differently. What you eat has no effect on your symptoms. Unfortunately, I believed this for many years.

Trusting doctors comes naturally to those who aren’t chronically ill. Medicine, like most of science, seems to be beyond suspicion. Yet each and every patient with IBD takes a different route to the same horrifying realization: the doctors can’t help me, and I am on my own.

This is a very lonely realization, and it hit me three years ago. I then started to question my doctor’s assertion that food has nothing to do with how I feel. I tried a real food diet, eating more meat, fish, vegetables, fruits, and increasing my intake of fermented foods.

It was a remarkable difference. Seven years of medication and I never felt as good as when I started caring what I ate. Three years later I am feeling better than ever, though there is still work to do. Taking control of my health by watching what I eat was incredibly empowering, and gave me a glimmer of hope that there is a light at the end of this tunnel, even if I would have to work long and hard to find what works for me.

This post is not meant to advocate for any single diet, though I am a strong believer in the Paleo/Specific Carbohydrate Diet way of eating. Instead, I advocate for the idea that food plays a crucial role in your health. It is time to stop accepting the canard that food does not play a role in IBD.

To those newly diagnosed, I say: research about the biomolecular structure of the food you eat. Read about the health benefits of various foods. Make informed decisions for yourselves. In addition to simply giving up the foods that make you ill, eat food that is healthful.

Before you eat, ask yourselves what the health benefits are for your body. Stop eating processed junk food, no matter how tasty it is. Examine each and every ingredient.

This is easy to say, of course, but not so easy to do in practice. Beyond the obvious food cravings and social pressures that you’ll have to resist, you also have to wade through confusing and contradictory research on the effects of food on your body.

What is considered healthy? What was considered healthy a decade ago? Why is the answer constantly changing? It is enough to make anyone go cross-eyed. The subject of which research to trust could make for a whole other post — and probably a rather depressing one.

But as long as patients ask whether what they eat is healthful to them, and only eat that which they believe is healthful, they will take control of their own lives and symptoms.

With this control comes something we don’t have when we rely solely on medication: hope for a better future.

If you would like to guest post for the Crohnology blog, please see our guidelines.

Want Some New Guts? It Can Be Done.

CrohnoNewGuts

Ever wish you could trade your intestines in for another set? That’s what some  Crohn’s patients have done, more or less — saying goodbye to their own guts and getting a new-to-you set in return.

The American College of Gastroenterology just wrapped up its annual scientific meeting in Hawaii (our invitation must have gone to the wrong address). The annual meeting is where many of our doctors go to learn the latest gastroenterology science and/or learn to stand-up paddle board.

Among the papers presented beneath the palms and azure blue sky was one titled “Visceral Transplantation is Safe And Life-Saving in End-Stage Crohn’s Disease”, by Dr. Guilherme Costa.

Visceral transplantation means new guts: patients had their intestines removed and replaced with a donor’s, and sometimes got a new liver as well. Of the patients, 45 got new intestines only; 12 got a new liver, too. Getting the liver upgrade made for better results, it turns out.

Before you think, ‘Wow, that would solve all my problems!’, keep in mind the study only covers 57 patients in the last 25 years. Those patients were considered ‘end-stage’, who failed TPN (intravenous feeding) and basically had nothing left to lose.

Those who received the transplants had survival rates of “90% at 1 year, 56% at 5 years, and 43% at 10 years” — which is decent, although a few required another round of transplants. On the other hand, recipients were able to return to their normal diet.

Visceral transplant is not for everyone. While clearly ‘life-saving’ and life-extending, it has additional consequences above and beyond the disease itself. This may be reduced in the near future, as scientists learn to make new organs from patients own tissue.

But even better would be advances in the treatment of IBD that make transplant unnecessary.

On a related note: if you’re not an organ donor, consider becoming one. Probably nobody would want our guts, but there are other bits that could save a person’s life. Visceral transplant would not be possible if there were not willing organ donors in the first place.

(Story via PracticeUpdate.)

 

 

Will My Kids Get Sick, Too?

CrohnoHeritWhether to have kids — and whether those kids will get IBD — is a question that weighs heavily on many people dealing with the diseases.

Several years ago, the questions became a serious issue for me, as I planned to get married. Because I had been told Crohn’s is genetic, I thought that meant I would most likely pass it down to any offspring. I decided to do some research to find out what, exactly, that likelihood was.

So I snuck into a medical library and downloaded every paper I could find about IBD genetics. That was more than ten years ago, so I have updated those results with anything more recent I could find. (Sources are identified with numbers in parenthesis — like this: (1) — and listed at the bottom of the post.)

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