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Posts tagged “Crohn’s Symptoms

So you want to talk pain?


I came across an article from Catherine Hinton that just may be the best description of the pain from which Crohn’s Disease patients suffer. I usually compare it to being in labor, but not being a member of the fairer sex I’ve relied on descriptions of that pain from my wife (and others).

Catherine begins her description this way:

If you have Crohn’s Disease you are familiar with pain. Not just a ‘pain’, but the whole repertoire of pain sensations that the human body can manufacture. Sometimes you might be treated to a solo rendition that can be quietened down with over the counter meds, but more often than not Crohn’s pulls out all the stops and decides to delight you with a symphony performance that inclues the equivalent of timpani drums and death metal guitars. You might think that the pain is limited to bowels (it is after all Inflammatory Bowel Disease) but oh no, if Crohn’s can drag in other parts of the body, it will!

I highly suggest you hit the link above and read the rest of her description, then share it with your friends and family. It’s both funny and highly accurate!

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Crohn’s Disease: Know your symptoms


As a long time Crohn’s patient, I am often sought out for advice on handling the disease by newly diagnosed patients and their families. And while awareness of Crohn’s is much greater than it was twenty years ago, most people really don’t understand much about the disease or the way it impacts a patient’s life. So I’ve decided to write a four-part document that hopefully explains to new Crohn’s patients and the general public what to expect and how to cope. These posts cover the medical symptoms tips for patients living with the disease and tips for people who know someone living with Crohn’s.

In this post, I’ll cover symptoms.

Crohn’s Disease is, without a doubt, one of the more debilitating medical conditions around right now. For those unfamiliar with it, Crohn’s is an auto-immune disorder that affects the digestive tract. Symptoms include weight loss, frequent (and often uncontrollable) bowel movements, diarrhea, nausea, bloating, intestinal discomfort and pain (which can mimic appendicitis) and fatigue. Symptoms also include the typical aches, pains and fevers usually associated with the flu. Because it is an auto-immune disease, people with Crohn’s often find themselves later developing other auto-immune disorders – for instance, I have rheumatoid arthritis and developed hay fever about 7 years ago. I’ve met other patients who developed even more severe types of auto-immune disorders, such as lupus.

Very little is really understood about Crohn’s. Nobody knows why it occurs – there seems to be a genetic factor (an extra gene is found in about 90% of Crohn’s patients), but nothing has been completely ruled out. Ethnicity, diet and activities all may be related – or maybe not. Likewise, there isn’t a cure. What has advanced since I was first diagnosed 20 years ago is understanding how the disease functions and causes other functions of the body to stop. That has led to better treatment options and generally, a better quality of life for those of us affected. Once, the disease was thought more prevalent in women than men, but the rates of affliction, once adjusted for populations, are actually about the same. Almost every ethnic group is affected, although peoples of Asian and African descent have lower incidence rates than Caucasians.

Odds are if you’re a new patient, then you are in the 16-25 year old range: this is when about 80% of new cases are first diagnosed. (I was 6 weeks shy of my 26th birthday when first diagnosed). That being said, new cases are diagnosed in every age group. Since I’ve no personal experience with pediatric Crohn’s, I won’t pretend to offer advice for anyone looking for information about Crohn’s and young children.

Symptomatically, Crohn’s is similar to Ulcerative Colitis. The similarities often confuse a person only cursorily aware of both conditions, which often leads to them confusing the two. I’ve had past co-workers and current friends often assume that because Crohn’s and UC are related and so similar symptomatically, that they are the same. But when I’ve had severe flare-ups of the disease, they are often shocked when they come visit and find me hooked up to dozens of tubes and wires, all needed to keep me alive and stable.

The symptoms are where the similarities end. Both cause ulcerations (inflamed areas) to appear in the colon, but the ones from Crohn’s disease burrow deeper into the tissue and can appear anywhere in the digestive tract. In my particular case, the upper palate, gums, a section of the small intestine called the duodenum and another called the ileum are affected in addition to two spots in my large intestine and another in my colon. Another big difference: in severe cases of colitis, a type of surgery called an ostomy can be performed, curing the disease (although at a high price). For some severe cases of Crohn’s usually where the tissue is badly damaged), surgery is also done – but removing the affected areas doesn’t cure the disease. It will reappear in another area of the GI tract.

Since Crohn’s patients generally have difficulty digesting food, it isn’t uncommon to find them malnourished even when relatively symptom free (by the way, those of us in the Crohn’s community generally refer to these periods as being in remission). Unfortunately, the type of malnutrition can vary from patient to patient. The reason is because so many different parts of the digestive tract are affected and each part is responsible for processing different nutrients. Regardless, the malnutrition is a major contributor to all types of related problems. Since each part of the body relies on the digestive system to function properly, people with Crohn’s often suffer from other system breakdowns. Their hair, skin and nails can become dry and brittle; they may suffer anemia, dehydration, high blood pressure, osteoporosis – the list includes virtually every other organ in the body. Add in the side-effects from long-term use of some of the more common medications used to treat Crohn’s, and the results can be even more system breakdowns. For example, the use of Mesalamine drugs can lead to excessive (and particularly foul smelling gas). As for myself, repeated exposure to very high doses of corticosteroids has resulted in cataracts and osteopenia (the precursor to osteoporosis). The calcium deficiency from my Crohn’s along a Crohn’s inflammation in my upper palate and the drug cocktail I’m on, resulted in my losing all of my teeth before I was 30 (although, my dentures look damn good!).


Crohn’s Disease: Coping


As a long time Crohn’s patient, I am often sought out for advice on handling the disease by newly diagnosed patients and their families. And while awareness of Crohn’s is much greater than it was twenty years ago, most people really don’t understand much about the disease or the way it impacts a patient’s life. So I’ve decided to write a four-part document that hopefully explains to new Crohn’s patients and the general public what to expect and how to cope. These posts cover the medical symptoms tips for patients living with the disease and tips for people who know someone living with Crohn’s.

In this post, I’ll cover what living with Crohn’s is like.

Once diagnosed with Crohn’s Disease, odds are your doctor gave you some version of “you’re going to need to make some changes.” They probably prescribed a bunch of new medications and told you that you’ll need to take them for the rest of your life. You were told that you’ll need to make some changes to what you eat and what you drink. Since the odds are you’re still young, you’re probably feeling as if life is essentially over. That’s normal, but as I and millions of other “Chronies” can tell you – life isn’t over. It just got more interesting. If you haven’t read through the posts on symptoms and treatments yet, take a few minutes and do so now. One of your best weapons in the fight against Crohn’s disease is education and this is good place to start. I also suggest going through the Crohn’s & Colitis Foundation’s website. It is an invaluable source for information.

Your first major change is that you and your doctors are about to become fast friends. Before my diagnosis, I didn’t have a regular doctor. I was a typical, healthy 25 year old and only went to see one if there was something really wrong – and it had to be really wrong before anyone could force me to step foot into a doctor’s office. The gastroenterologist who diagnosed me was as strange to me as an alien who dropped in from Mars. He was a nice enough guy, but I didn’t particularly like him and because of that, wasn’t sure I should how far I should trust him. So rule #1 about living with Crohn’s: find two doctors that you not only like but can absolutely trust with your life: a gastroenterologist (for your guts) and a general practitioner (for everything else). Because how you handle those relationships will go a long way in determining how well you live your life. In my case, I’ve had the same primary care physician for 10 years now and GI doctor for 8. The reason is not only are they very good doctors, but we have a great relationship. They know me by sight, including my medical history. How well? About three years ago, I had my left knee rebuilt and was in the hospital for the pre-op when my GI doctor was racing down the hall past my room. When she spotted me lying in bed, she put on the brakes, turned around and walked into my room – concerned I was having a flare. Then she made sure my chart mentioned my Crohn’s and that I’m allergic to tetracycline before continuing on to where she was headed. That type of relationship with your doctor is crucial to not only living with Crohn’s, but living well. Besides the peace of mind you get from that type of relationship, it has practical implications. When Cimzia was first approved for use, my GI doctor called me with the news and asked if I was interested in trying it. Had I waited for my scheduled appointment, I would have waited another four months before beginning treatment.

That brings up my next point: make certain you keep all of your medical appointments. Things come up that we never expect in our lives, but it is critical that seeing your doctor regularly. Even if you’re feeling well, your doctor may spot something and be able to put out the fire before it begins. Make certain you take all of your medications as prescribed. There’s a good chance some of them will need to be taken multiple times a day (mine do). A tip: nowadays, almost everyone carries a cell phone. And many of us carry a smartphone. A great way to remind yourself to take your meds is to set reminders on your phone. In many cases, you can synch those reminders with your computer, too.

It’s also important to have a good support network, other than the medical professionals. Friends and family are going to be important as you live with Crohn’s. Some of the people you consider friends won’t want to be bothered with helping out when you’re having a flare – it’s actually a fringe benefit to Crohn’s. You’ll find out who your real friends are and who was just a hanger on. Part of the reason is mental. Nobody may have told you this (although you might have suspected), but living with Crohn’s can have some very down moments. You need to mentally prepare yourself for frequent hospital stays and often feeling like – pardon the pun – crap. There are times when you will be so physically ill you can’t leave the house; having a friend or family member willing to run errands during those times is invaluable. Depressed feelings go hand-in-hand with so often being unable to do much more than run to the bathroom, with the frequent hospitalizations and being isolated. Having friends who are willing to drop by, make hospital visits and just generally keep your spirits up is more valuable than having a million dollars in the bank.

I also suggest finding a Crohn’s patient network, or if you’re ambitious starting one yourself. There are a lot of us Chronies out there – probably more than you imagined. Nobody has an exact count, but it’s estimated that as many as 43,000 people in the United States have Crohn’s. There are also on-line support groups available, such as the Crohn’s Disease Support Network, MD Junction and Daily Strength. Why join a support group? Because while having friends and family is important, it’s also important to be able to discuss how Crohn’s is affecting your life with other people who have experienced exactly what you’re going through. If you’re reading this, chances are you want to find out more from someone who’s been there and done that. Support groups offer that and more.

IF you’ve read this far, you are almost certainly wondering what in the world you did to deserve this. After all, all I’ve written about is that you can expect pain, hospital stays, frequent bathroom trips and finding people to talk to. None of that stuff is fun and you’re probably saying to yourself, “My life is OVER!” Well, now for the good news: your life is hardly over. You’ll need to make some changes, sure, but consider them course corrections. Having Crohn’s doesn’t preclude you from living a full, happy and productive life. If I’m not proof enough of that, Wikipedia has a list of some pretty famous people who also have Crohn’s Disease – and it includes athletes, actors, musicians, politicians and others. The steps I’ve outlined above are just preparatory to living the life you want. Here’s some common, everyday hints and tips for not only surviving but thriving with Crohn’s:

Work

While it’s true that some Crohn’s patients are permanently disabled, the vast majority of us work for a living. And most of our employers are glad to have us, even if it means having to make a few accommodations to allow us to work. The key is to make certain you let your employer know that you have Crohn’s Disease ahead of time. I obviously haven’t held the same job for the past 20 years (who has, nowadays?) and one of my keys to finding productive employment is to always let prospective employers know I have Crohn’s. I may have lost a few jobs because prospective employers didn’t want to bother with it, but I’ve always looked at it as their loss. Your co-workers will understand the reason you take a few extra bathroom breaks during the day, pop pills at odd times and are occasionally late arriving.

Eating Out

Eating out can pose a special challenge for Crohn’s patients. Rule #1 about eating out: avoid fast food. While McDonald’s, Taco Bell, Wendy’s and Burger King are cheap, quick and tasty dining alternatives they play havoc with our insides. They’re just as fast coming out as going in. Like everything related to our diets, you can’t necessarily rule them out forever. But it should be on your “last alternative” list. Rule #2: be proactive about asking how food is prepared and what ingredients are in a dish. I made the terrible mistake of not asking several weeks ago and paid for it for two days. Remember, it’s your health and your right to know what you’re eating. I’ve yet to find a restaurant that isn’t willing to tell me.

Along with eating out is drinking. Again, this is the “anything in moderation” meme. If your friends are going out to get hammered, volunteer to be the designated driver. If you’re having a beer after work with a couple of buddies, listen to your gut. If your symptomatic, it’s probably best to have a glass of water (or ginger ale) instead. If you’re otherwise healthy, one or two drinks is probably ok. But more than that and you will be asking for trouble. And if you’re drinking anything alcoholic, eat something – it helps slow the absorption of alcohol and your stomach will thank you. Trust me on this one – a hangover with Crohn’s is twice as bad as any you ever had without it.

Traveling

There might be no greater horror for a Chronie than being on the road and needing to find a bathroom – NOW – and not being able to find oneThis has happened to everyone with Crohn’s; you’re not alone in this experience. But there are a few tips that can reduce the chances of it happening. First, map your route and the public restrooms along the way. There are some great on-line resources for this, generally localized to your region. If you happen to have an iPhone or Blackberry, download the SitOrSquat app. It’s a terrific resource for finding a public toilet. (For the rest of us, you can text 368266 and get back a list of nearby bathrooms). Tip #2: check with your doctor if it’s ok to take an anti-diarrheal before heading out. If so, then go ahead and pop that Immodium® or Kaopectate®. Third, do your best to use a toilet before leaving.

Even doing all of this won’t prevent accidents from happening. They will, so it’s best to be prepared. I always carry an emergency pair of underwear in my briefcase, along with some baby wipes and one of those plastic bags you get from the grocery store. Most of my friends understand why my briefcase goes with me everywhere (even to the beach, although I don’t take it on the beach). Ladies, you can do the same with your purse.

Dating

Most of what I covered above applies to dating, as well. Your date will just need to be understanding if you need to excuse yourself from the table during dinner, or take a leave of absence during a movie. But one thing to note about Crohn’s is that stress can bring on symptoms – and dating can be a stressful event. As with work, let your date know ahead of time that you have Crohn’s. If they beg off or stand you up, well, then they definitely weren’t right for you, were they? Romantic situations can be difficult (after all, excusing yourself and running to the bathroom can ruin the mood), but you and your significant other will figure those out as you go along.

Starting a Family

One of the most important decisions a person ever makes is if and when to start a family. For a Crohn’s patient, the decision becomes even more difficult. I can’t tell you whether or not to have children, or when the time is right. I can only relate my personal experience and that I wouldn’t trade my three sons for all the tea in China. But things you definitely want to consider include the possibility of passing along Crohn’s (about 1 in 3 Cronies have a family member who suffers). You also need to take into account how well your Crohn’s is responding to treatment and how the additional stress of children may affect you. Finally, while all prospective patients need to take into account their financial situation, Crohn’s patients need to be especially mindful of the fact that as a result of their condition, they may face periods with reduced (or no) income.

Stress

Moderating your stress level is key to living well, either with Crohn’s or without. It’s just that for those of with Crohn’s, we need to pay a bit more attention to it than most people. If you perused that list of famed Cronies, then you’ll notice quite a few of them had stressful occupations. (Imagine the stress Dwight Eisenhower was under, first as the man tasked with defeating Hitler and later as President of the United States!). None of them could reach the pinnacles of their professions without learning to manager stress and the good news is you can, too. Whether it’s working out in a gym, running, prayer, meditation or something else, find it and practice it. For me, it’s a combination of prayer and working out. I work out at least three times a week and every morning starts off with a bible reading and prayer.

Outdoor Activities

If you’re anything like me, you probably enjoy being outdoors and doing things. And there’s absolutely no reason you can’t, even though you have Crohn’s. I played baseball until age and bad knees caught up to me, I’m still an avid bicyclist, I play golf and I still love taking hikes through the woods and spending time on the beach. If you enjoy the great outdoors, just follow the tips for traveling above and you should be fine. If you’re also into organized sports, most leagues are willing to grant you a “time-out” so you can use the restroom.

Ok, I think I covered most situations here. But if you have any other questions, feel free to drop me an email at rayrothfeldt@aol.com.


Crohn’s Disease: Treating the Symptoms


As a long time Crohn’s patient, I am often sought out for advice on handling the disease by newly diagnosed patients and their families. And while awareness of Crohn’s is much greater than it was twenty years ago, most people really don’t understand much about the disease or the way it impacts a patient’s life. So I’ve decided to write a four-part document that hopefully explains to new Crohn’s patients and the general public what to expect and how to cope. These posts cover the medical symptoms tips for patients living with the disease and tips for people who know someone living with Crohn’s.

In this post, I’ll cover some of the treatment options available and the improvements made since I was first diagnosed. But before deciding on a treatment or treatments, discuss all of these options with your doctor. You may want to read to read the section on symptoms before reading this post, so that you understand why certain treatments are used.

When I was first diagnosed in April 1991, there weren’t any truly effective treatments for Crohn’s Disease. The treatments were either drastic – an ostomy – or did their best to mask the symptoms . Medications included a form of sulfa, antibiotics, oral steroids and anti-diarrhea solutions. Since these medications rarely induced remission of the disease (that is, a significant reduction of symptoms), most of us with Crohn’s were hospitalized often. Between 1991 and 2000, I was hospitalized 18 times for Crohn’s or Crohn’s related symptoms. All told, I spent 318 days in a hospital bed during those ten years.

The principle reason treatments were so ineffective was that so little was understood about the disease or how it functions. Fortunately, great strides have been made over the past ten years. Thanks to the work of researchers, current treatments are much more effective. I’ll go through each of these.

Corticosteroids

Corticosteroids are artificial hormones often given to patients in during “flare-ups” (periods of extreme disease activity). During a flare, what happens is the tissue surrounding the disease inflames, causing the extreme pains for which Crohn’s is noted (I’ve joked that I know what labor pains must feel like – my wife actually agrees!). Corticosteroids such as Prednisone, Prednisolone and Deltasone work by reducing the inflammation. These drugs are artificial replacements for the corticosteroids generated by the human body, but are given in much higher doses than the body normally makes. I’ve received as much as 120mg of prednisone a day, or about 60x the body’s normal production. While they are as close to a miracle drug as any for ending flare-ups, they pose serious risks with extended or frequent use. The first is dependence; when receiving such massive doses the body stops producing its own. This is why they are usually prescribed for short periods and ramped down while prescribed. Prolonged use can also lead to cardiovascular disease, osteoarthritis and cataracts. Also, patients taking corticosteroids should note that weight gain and mood changes are common when taking them.

Sulfonamides

This type of medicine is used to help maintain remission. It’s been used since I was first diagnosed, but the delivery of the active ingredients in sulfonamides has improved greatly in that time – meaning lower and less frequent doses are needed for the same effect. The first medication I was prescribed was Sulfasalazine; I had to ingest three 600mg tablets 4 times a day. If you’re not interested in doing the math, I was taking 7200mg every day, without much positive effect. Today, I take 1200mg of Lialda daily. The most commonly prescribed sulfonamide for Crohn’s today is Asacol (or its generic equivalents, Mesalamine and 5-ASA ), usually at a 800mg dose three times daily. The side effects are relatively minor, such as excessive gas and bloating. In rare cases, it can exacerbate pre-existing heart and lung cases. And some studies link these drugs to reduced fertility in men.

Antibiotics

Everyone has bacteria lining their digestive tract. We actually need them to help with proper digestion. But during Crohn’s flare-ups, the bacterial populations literally explode. Nobody is quite sure why, or what the connection may be. Regardless, most gastroenterologists will prescribe one or more antibiotics during a flare-up. The most common is flagyl, given intravenously.

Anti-TNF medications

The first major advance was in understanding the role an antigen called tumor necrosis factor
(or TNF) plays in Crohn’s and the use of anti-TNF drugs in fighting Crohn’s. TNF forms naturally within the body and is one of our immune system’s defense mechanisms against cancer. It works by inflaming the cells around the cancer cells, in essence choking them. Nobody is quite sure why Crohn’s patients suffer this type of inflammation, but studies in the mid and late 1990’s showed that anti-TNF drugs actually reduced the chronic tissue inflammation. Since then, drugs like Imuran or 6-Mercapturine (6-MP) have been introduced. They can’t actually induce remission, but they are effective in maintaining remission once it’s been achieved. The big downside is since they reduce the body’s principle anti-cancer agent, patients taking them are at much higher risk for developing cancers. Recent studies show the possibility that Crohn’s patients who have been on one of the anti-TNF medications for extended periods are at substantially higher risk for a type of leukemia.

Biologics (TNF-A inhibitors)

An offshoot of anti-TNF medications, biologics as used in Crohn’s treatment are designed to essentially “turn-off” the immune system. There are three currently in use: Remicade, Humira and Cimzia. Each has some unique side-effects; ask your doctor about them. In 1998, Remicade was the first of these drugs approved for use in Crohn’s, so it has the longest track record. However, it also has the most common allergic reactions and needs to be administered by IV over a course of several hours. Humira and Cimzia are similar to one another, but whereas a Cimzia injection can last 4 weeks, Humira needs to be injected every other week. Generally speaking, since the immune system is kept in a very depressed state while taking these, the patient is very susceptible to any airborne illness and contracting one can be deadly. If you are planning to take one of these, know the risks and make certain you discuss them with your doctor. I’ve been taking Cimzia for close to a year and it has made a HUGE difference in my quality of life.

Surgery

Crohn’s patients often require surgical procedures. These can range from the relatively benign (colonoscopy for examining the lower GI tract and removing polyps for closer examination) to a full-blown ostomy. Before undergoing any surgical procedure, make certain you discuss all of the implications with your GI doctor and meet the surgical team. You should also try to have a trusted friend or family member with you for these consultations – odds are if you’ve reached this point, the pain has also become nearly unbearable. Whether you’re fighting the pain au natural or with painkillers, you won’t be in the best command of your mental faculties.

Diet

For Crohn’s patients, diet is truly a four-letter word. We obviously need to eat, but many foods (including what can seem like most of the yummy ones) will cause an exacerbation of symptoms. Eat too many of them and you may wind up with a full-blown flare. Match that with the fact that as a Crohn’s patient, you need to ensure good nutrition even more so than most people and you stand a good chance of being baffled by your diet – or going insane J. Your best bet is to avoid foods that are hard to digest, such as nuts, popcorn and seeds. As for everything else, keep a log of everything you eat and if you experience increased symptoms, then avoid it in the future. Personally, I try not to exclude anything unless I’m in a flare – I just make certain my “avoidance” foods aren’t a constant part of my diet.

Also, you may want to consider nutritional supplements if you find you can’t get enough nutrients from eating. These can range from vitamin supplements to more robust liquid supplement shakes, like Ensure or Boost. In any case, working with a registered nutritionist is always a good idea. And one more thing: most Crohn’s patients find eating large meals tend to make them symptomatic. Try to eat smaller meals and eat more often. For instance, I typically eat 6 times a day – I cover this in more detail in the lifecyle adjustments post.

Alternative Medicines

There are quite a few alternative (or herbal) therapies out there for Crohn’s patients. I do not recommend any of them, although parts of them can be helpful. For instance, I find mint tea can help calm my stomach if I overdue it. Regardless, before trying any of them, be sure to check with your doctor and investigate them fully to find out how they can interact with your medications or each other. Just because they’re herbal or all-natural doesn’t mean they can’t have side-effects.

Ongoing Care

Perhaps the most important part of treatment is your ongoing care. Your doctor will likely send you for seemingly endless tests. CAT scans, GI studies, barium enemas, X-rays, colonoscopies, blood tests and more are part of the typical “Crohnie’s” regimen. Undergoing these and maintaining your relationship with your doctor are crucial in keeping Crohn’s at bay.