Abandon Hope… To Be Happy?

CrohnoHopeWhen illness blocks your way in life, how do you respond? Do you keep pursuing your goals, hoping that you can overcome that obstacle? Or do you accept your situation, and find other things to aim for? A study claims that to be happy, you have to give up hope.

People with inflammatory bowel disease often need surgery, and in some cases that will mean a colectomy – the removal of the colon. In some cases, that operation can be reversed — making the ostomy temporary. In some cases, the operation is permanent.

In 2009, team of economists published a study titled “Happily Hopeless”, reporting that people with permanent colostomies were ‘happier’ than people with temporary ostomies. The study got a lot of press, with reports claiming it shows that sick people who give up hope are more happy.

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Are Pain Meds Bad?

CrohnoPainPain is common among people with IBD. For many of us, it is the most debilitating symptom. Yet we are often told that pain medications will make us worse. Are pain meds really that bad?

By “pain meds”, I mean opiates and opioids: sometimes called ‘narcotic pain killers’. Opiates are natural chemicals from the poppy plant — the same plant that produces poppy seeds. Some popular prescription opiates include codeine and morphine.

Opioids are similar drugs made by synthetic means. Some popular prescription opioids include oxycodone (in Oxycontin and Percoset) and hydromorphone (in Dilaudid). Heroin is also a very popular opioid, but it is illegal most places.

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Are You Bullied At Work?

CrohnoBully

People with IBD sometimes have problems with the demands of full-time work. Whether it’s fatigue or pain or bathroom breaks, an ordinary work day can be very difficult. According to a recent study, there is yet another way work can be stressful: workplace bullying.

The study, published in BioMed Research International, looked at 700 patients (all in Italy). Of these, 397 had inflammatory bowel disease. The other diseases included autoimmune arthritis and psoriasis. To define the problem, the study authors provided subjects with following definition:

bullying takes place when one or more persons systematically and over time feel that they have been subjected to negative treatment on the part of one or more persons, in a situation in which the person(s) exposed to the treatment have difficulty in defending themselves against them. It is not bullying when two equally strong opponents are in conflict with each other

Subjects completed a survey that asked various questions about their health, and about workplace bullying.

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Which Natural Therapies Work?

CrohnoNaturalMany people with inflammatory bowel disease turn to ‘natural therapies’ — sometimes called ‘alternative medicine’ — to manage their symptoms. Are any of these therapies proven effective?

To find out, the Australian government reviewed 17 different therapies, including yoga, homeopathy, reflexology, and Tai Chi. Their goal was to determine which therapies should be eligible for government insurance rebates. The review looked at the medical literature for evidence supporting each therapy, especially randomized controlled trials (RCTs).

The report of the review process is available online. For the most part, the reports says, “there was not reliable, high-quality evidence available to allow assessment of the clinical effectiveness of any of the natural therapies for any health conditions.” There just wasn’t enough information to prove the effect of most therapies.

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Which Over-The-Counter Meds Help?

CrohnoOTC

People with IBD often take over-the-counter (OTC) medicines and supplements in addition to their prescriptions. While there is lots of research on prescription drugs, it is hard to find reliable information on OTC products.

Crohnology members, of course, have access to our treatment database. There you can find information and rankings for many popular supplements. Vitamin B12, Probiotics, Iron, Vitamin D, and digestive enzymes are all highly rated (although B12 may include people who receive injections).

In decades of dealing with the disease, I have tried dozens of OTC products, mostly with no success. A few, however, stand out as being truly helpful. These are not official endorsements, but just a partial list of medicines I have found effective:

  • Bean-O: this supplement is basically a digestive enzyme, but it totally changed my relationship to vegetables. Bean-O works by breaking down the plant matter that causes gas for most people. For me, that plant matter causes cramping and diarrhea. Taking Bean-O has helped me rediscover salads and other raw veggies that were missing from my diet. I started small and built my way up to full servings, but now I have no problem digesting veggies if I take Bean-O before.
  • Loperamide: this is the active ingredient in Immodium, the anti-diarrhea medicine. I take four every evening, to keep my guts quiet through the night. I know this causes cramping for some people — it used to, for me — so this is definitely one to talk to your doctor about.
  • Melatonin: I also take melatonin every night to help me sleep. Melatonin is a hormone your body is supposed to make naturally to regulate your sleep cycle. I take it an hour before bedtime, and it helps me fall asleep.
  • Diphenhydramine: this is the active ingredient in Benadryl and Unisom, and is often used by IV for hospital patients having trouble getting enough sleep. I don’t take it all the time, but it is a real help if melatonin isn’t enough to get me to sleep. Usually half a Unisom quick-melt lozenge is enough to help me sleep without being groggy the next day.
  • Pectin lozenges (Luden’s): most cough drops and sore throat lozenges have ingredients that mess up my guts. Pectin lozenges help — not as much as medicated drops, but enough that it’s worth having them.

It is a good idea to talk to your doctor about any OTC medicine you want to try specifically for IBD, and definitely remember to list all meds — OTC and Rx — among your current medications when filling out forms.

What OTC meds and supplements have worked for you?

 

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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