INFORMATION: Little Vitamins for your Brain

As I have stated in previous posts, the most useful source of information about my Crohn's disease, besides my doctors, has been the Internet. Yes, the Internet, in all its spam-filled, keyboard-warrior, opinionated, misguided glory. While the 'Net is rife with misinformation about any-and-every topic known to man (and even some topics that aren't known to man), there are still some dark, quiet corners of the web that harbor endless seas of useful, truthful, and supportive information. And as you will learn, some of these little hidden gems are making a huge impact on the awareness and forward-process of treating and curing Crohn's and Ulcerative Colitis. I'd like to share some of my personal favorites.

THE BASICS: These sites are generally thought of as the leaders in information about CD/UC:

• CCFA.org - The Crohn's and Colitis Foundation of America (based in USA)
• CrohnsAndColitis.org.uk - Crohn's and Colitis UK (based in United Kingdom)
• CrohnsAndColitis.com.au - Crohn's and Colitis AU (based in Australia)
• IFFGD.org - International Foundation for Functional Gastrointestinal Disorders (worldwide) 
• Mayo Clinic Crohn's Disease (based in USA, useful worldwide)

LIVING WITH CD/UC: Useful, applicable, real-life tips, tricks, and stories:

• Crohn's & Me - excellent starting point for newly-diagnosed; you can also sign up for the free Crohn's Advocate e-magazine.
• CrohnsAndColitisInfo.com - another great starting point for newly-diagnosed or caregivers
• About.com - tons and tons of information! Links, videos, articles, studies... you name it! 

COMMUNITIES: Find other Crohn's and Colitis patients, share experiences, tips, and stories:

• Facebook Group: Crohn's and Ulcerative Colitis Support Group - You must be approved by the group's owner to join this group; it's a private group, so anything posted here will NOT show up on random friends' Facebook news feeds. I am part of the admin team, and I am very proud to say this is my daily go-to source for information and support. You will likely make new friends and learn about aspects of Crohn's and Colitis you've never heard of. (With all community groups, abide by the house rules at all times to avoid potential conflict!)
• Reddit Crohn's Disease - beware, Reddit is not for everyone. As with any website that is run by its members, you may find some posts or items disturbing. However, there are far more useful and helpful (and sometimes even funny!) posts here.
• Crohn's Zone - community forum. Similar to any forum-based support group, you sign up to participate in discussions with other members. I happen to really like this one because they offer useful articles as well as member posts, and even have a Schwag Store.

PARTICIPATION: Take part in clinical studies, fundraiser events, and research opportunities:

• ClinicalTrials.gov - registry and results datatabase of publicly and privately supported clinical studies of human participants conducted around the world. Search for your condition or location from the main page.
• World Health Organization (WHO) Clinical Trials Registry - similar to the one above; worldwide.
• Chronology - A really unique website which gathers and reports user-based data about chronic health conditions. The more information you give them about your personal condition, the more useful the research can be.
• 23andme DNA IBD Study - as of the date that I'm posting this blog, this study is still accepting new participants. The kit and ancestry info is FREE for participants: you must be diagnosed with a form of IBD, and you must consent to have your DNA information recorded and researched. Even if you don't have IBD, you can still purchase a DNA testing kit and have your ancestral results sent to you. Your DNA may also help guide future genetic studies for countless medical conditions!
• GYGIG - Get Your Guts in Gear: A non-profit fundraiser for IBD awareness and research through multi-day bicycling events around the U.S. 

SPECIALTY SITES: 

• Friends of Ostomates - for IBD'ers with accessories such as colostomy or ileostomy bags.
• IBD U - for children and teens with IBD
• Traveler's Assistance - a worldwide resource of assistance for traveling with medical conditions
• Toilet Finders! - For Australia or New York City, interactive maps to locating public restrooms. There may be other sites out there for various locations - use Google to search for a site.
• Food & Cooking - There are MANY sites out there devoted to the dietary restrictions of Crohn's and Colitis. Some of my favorites are The Colitis Cookbook, Coping Well with Home Enteral Nutrition, and the Specific Carbohydrate Diet (SCD).  
• Caregiver's Network - Sometimes, those who help us need a little help too.

MOBILE APPS: there are lots out there, these are just the ones I am using:

• PoopLog (Android) - Track your bowel movements using the Bristol Stool Scale. Includes options to attach photos and notes to give to your health practitioner.
• GI Monitor (all platforms) - Log and analyze symptoms, medications, meals, and pain levels.
• AnyTimer Pill Reminder (Android) - set completely customized reminders for your phone to remind you to take meds at any time of the day/week/month, for however long you need to. As a bonus, you earn AchieveMints for using it. 
• GI Buddy by CCFA (Android & iTunes) - similar to GI Monitor, with various logging and interactive uses.

My list of links above is nowhere near exhaustive or complete. These are just some of my favorites that I wanted to share with you. A great source for even more links with a wide range of topics can be found here: HELPFUL LINKS. There are links on that page to direct you to assistance programs, insurance information, medical journals, and much, much more. 

The Internet has become the world's most loved and hated engine for sharing information. Unfortunately, just as in real-life, there are wrong turns you can take online that can lead you to spam, misinformation, or false data. Use the 'Net at your own risk, and be cautious of any information you gather. Always, ALWAYS ask your doctor or other health professional if you are ever unsure!

I hope these links will help you as they have helped me. What are your favorite websites or apps for your Crohn's and Colitis support? Please share in the comments!

Get Well Never

Any Crohn's patient can tell you, there are good days and there are bad days. We all strive to have more good days, but those bad days always sneak their way in.

Today, I'm having a good day! The shingles outbreak seems to be less painful and guts are *gasp* behaving. That, or I'm just getting accustomed to pain.

My pain tolerance has grown over the years, thanks to Crohn's Disease. While most people would find this to be a positive trait, I'm scared of it. I find myself putting up with pains that would place most people into the fetal position on the nearest bathroom floor. Ignoring these pains and aches could be detrimental to my health.

That's most likely how I ended up with two fistulas in my intestines. These things are extremely painful, and the beginning ulcers would have been extremely painful. But I wrote off the pain as if it were just Crohn's being Crohn's, contracting my guts and making me uncomfortable. Early intervention may have prevented those ulcers from becoming fistulas.

Feeling too much pain, vomiting too much, or having an overabundance of ANY symptoms should never be taken lightly. But when you go for weeks, months, or even years with persistent pain, it becomes second nature. I'm sure there have been many times when I should have gone to the hospital to address my symptoms, but I chalked it up to "just another flare."

So, please, fellow Crohnies and UC Buddies, consider every symptom you experience, and really think it through before ignoring it or writing it off as "nothing." Symptoms are the warning signs of problems, and we need to take care of them before they take over our bodies!

Be seen by a health professional as soon as humanly possible if you experience:

• Unusual or new pain
• Fever - even low-grade fever can indicate infection
• Sudden weight loss (more than 10 lbs in one week)
• Bloody vomit or stools

These symptoms are not uncommon for Crohnies, but they can indicate something serious brewing in your body.

Obligatory disclaimer: The contents of this blog are of my own education, experience, and opinions. In no way should any information in my blog be used in lieu of proper medical or nutritional care. Use common sense.

LIFE, POSTPONED and An RN's Point of View on Abdominal Surgery

Thanks to this sudden outbreak of shingles, the surgeon has postponed my surgery until I am cleared by my regular physician. It's too risky to perform surgery on someone with a viral outbreak, or any kind of infection for that matter.

In the meantime, I will continue to update my blog! I am keeping all of the details of my medical "adventures" as transparent as possible, because that's what will benefit others the most.

I would like to share a message I received from a very good friend of mine, who is a nurse. She has spelled out, step-by-step, what to expect from abdominal surgery, or any major surgery. This message has given me the most clarification, understanding, and reassurance, and I hope it will do the same for you.

• "I'm sure you heard a lot of 'it really depends on what we find when we get in there', and that seems to be true. My textbooks are aimed at the pre and post op ends rather than the surgical end as nurses don't need to know all of that, but it offers a bit more of what you are looking for. I figure I will give you best and worst case scenarios, and how to deal with worst case (I am going to leave out the obvious worst cases of death and whatnot and just mention the ones that do not get covered with every surgery)
  Starting with general abdominal surgery, best case (and most common), you will wake up with fuzzy memory and no pain, the pain will slowly return as meds wear off. You want to let your nurse know the pain is returning BEFORE it gets out of control as it is much easier to control pain at a steady rate than to try and play catch-up after it has reached a certain limit. Worst case, you wake up in post op recovery and have a significant amount of pain (this generally only happens if you wake up before they expected and is fairly rare), in this case I will not need to tell you what to do, you will do it, but just in case you are the very rare quiet type with this level of pain, don't be. The more vocal you are about being awake and in pain the faster someone will realize the issue and fix it. In the best case you should have something called an 'incentive spirometer' next to your bed, you breathe IN through this (everyone wants to blow on it) to encourage yourself to take deep breaths you can mark off how well you did on it as a level to beat next time. This has been shown to be surprisingly effective in preventing post op pneumonia and pulmonary embolism, which are higher risk in abdominal surgeries due to the 'discomfort' involved in taking deep breaths and coughing. You will likely be encouraged to cough, this clears out all the junk that settles in your lungs due to anesthesia, this WILL hurt. The best advice I have is to ask for an extra pillow or bring a small square pillow from home to kind of hug while you cough, it helps brace the abdominal muscles so it feels less terrible, again, stay on top of pain so this wont be so bad. You will obviously have weight restrictions but they will likely want you up and walking far sooner than you are interested in doing so, this helps your guts wake up, but it also helps prevent every blood clot related complication you can think of. Try to do it if you can, if not, let them put the SCD (leg squeezing air things) on you, you will hardly notice them after an hour or so.
  Specific to your surgery. You may be kept on TPN (IV fluid that has all the nutrition you could need) for a couple days to rest your bowels, you may have an NG (naso-gastral) tube to suck out any gas or mucous so the bowels can rest, you may have an NG that is feeding you and fuck resting your bowels, and you may be on a liquid diet. This all depends on how mobile your guts are, how much poking at them needed to be done, and how inflamed they were. The worst case here is actually slightly more common with bowel to bladder fistula because there is more inflammation involved, this is a temporary stoma (two actually) both sides of your guts may be ending on the outside just until they calm the hell down, then they go back in and put them back together (a quick and dirty procedure) These can be sore, but more often they are disturbing to people for a body image reason. You may or may not have drains coming out of your belly, these types of drains are generally more annoying to people than painful (so says my patients) and are usually removed within a couple days which is quick and described as a weird feeling, sometimes a burning feeling, but rarely painful, it happens so fast it would be similar to having an ear pierced where you notice the quick tinge of pain but it is already done (I've removed them, patients often don't even know I did it). Due to the bladder involvement, and the possible nutritional options, you may have a catheter for a couple days, good news, you don't have to get up to pee in the middle of the night . Worst case it may be on irrigation, this is a fairly rare situation with this surgery, but if you develop bleeding from the wall of your bladder they often put irrigation on to allow you to pass clots, it's cold, and it can make your bladder spasm so you think you have to pee all the time. If you have an NG tube either for decompression or feeding you want to keep the area of your nose where the tube touches clean and dry, seriously, not even a little bit kidding. This tissue can breakdown in hours, and you don't want a lopsided nose, let them monkey with it even if it feels clean to you. You will likely be asleep when it is placed, but if not, make an attempt not to punch the nurse, the eye-watering part is quick if you can force yourself through it. Removing the tube is less bothersome, but keep in mind a tube gets dragged across your gag reflex and puking and heaving are not uncommon. As gross as that sounds every single person I have had with a tube has said 'the puking and gagging on removal was well worth it to have the thing out and get to have a drink of anything, everything, just give me a thing to drink'. As far as the pain goes, it can be significant BUT the doctors know this and they want you to be active and getting better, they will do what they need to to provide pain control (get use to being asked to rate your pain on a 1-10 scale every time you open your eyes), be honest about your level of pain, and ask for relief before it gets to be too much. Abdominal surgeries effecting the bowel are tough because the bowels are slowed by the medications for pain, but remember that the complications from not participating in activity are WAY worse. 90% of your nurses will understand that this is a particularly tough incision to deal with since every movement involves these muscles and they will offer you plenty of pain meds, there is always one nurse who thinks everyone is 1: an addict, 2: going to become an addict, or 3: going to overdose on the same dose they have has for days... ignore her bitchy attitude (everyone else on the floor does) advocate for yourself. Last but not least, be prepared (and let [family] know to be prepared) for an emotional reaction no one warned you about (umm, well almost no one). You are well aware you will have a scar, but open abdominal surgeries leave an incision in a spot nearly impossible to NOT see during bandage changes and they can look really bad at first. Knowing this, knowing it will get better, knowing you are loved, none of that may matter. It is a kick in the teeth to see on your own body and can really have an impact at first, add to that you will likely be barred from eating that emotional wave away and there are people all around all the damn time, your sleep is interrupted, you're uncomfortable... just be ready for some teenager in PMS level emotions."

I have slightly edited a few items of the above message for clarity, but as you can see, she was extremely clear on what to expect. I am so grateful for this outline from the point of view of someone who directly cares for surgery patients. Let me know if you find this helpful!

Shingle Bells!

In yesterday's blog post, I talked about some of the seemingly unrelated symptoms of Crohn's Disease. Today, I am a walking demonstration of a strange manifestation due, in part, to Crohn's: SHINGLES!

I noticed this painful spot behind my ear (pictured) this morning, and had pain radiating across my scalp and down my arm. I went to the urgent care clinic as soon as I could, because I knew any kind of infection might prevent next week's surgery.

Shingles is not caused directly by Crohn's Disease. Crohn's has weakened my immune system, allowing the virus which causes shingles to present itself in a most painful, ugly way.

I have yet to find out if my surgeon will cancel the plans for surgery next week. In the meantime, I'm hiding from babies, pregnant women, and anyone who's never had chicken pox, so they don't get shingles from me.

Symptoms of Being Awesome

When people think of Crohn's Disease or ulcerative colitis, the first thing that comes to mind is constantly running to the bathroom, and being doubled over in pain. These seem to be the "standard" symptoms for sufferers of these diseases, and sadly, that's as much as some people know about the disease.

But there are so many more symptoms of CD & UC, some of which are so bizarre, it seems to be a different disease altogether. I'll organize this list similarly to how I organized the foods list; here are the most common symptoms of Crohn's:

• Abdominal pain - it can affect just one area of the abdomen, or the entire abdomen. 
• Diarrhea
• Fever and night sweats
• Nausea
• Vomiting
• Extreme bloating - makes you look pregnant
• Bleeding (internally, or in the intestines, visible only when you use the bathroom)
• Severe heartburn or acid reflux
• Extreme lethargy
• Open sores near the mouth or anus
• Sudden weight loss
• Joint pain and swelling
• Muscle deterioration

There are also some "side" symptoms that come with the disease:

• Anemia - iron, B12, and other nutrients that the body can not absorb naturally
• Depression
• Anxiety and fear
• Energy loss
• Low libido
• Trouble swallowing
• Stunted growth in children with the disease

When Crohn's really wants to be an asshole, these symptoms can take place:

• Fissures - sores or cracks in the intestine, usually near the anus
• Fistulas - one or more organs ulcerate and attach to another organ; most common fistulas are colon-to-skin (literally a gaping wound on the abdomen), colon-to-intestine, colon-to-bladder, and colon-to-uterus in women
• Intestinal blockage - the intestine becomes so swollen, it causes a complete blockage. Nothing can move through, and this usually requires surgery
• Perforated bowels - can spread infection throughout the entire body

All of the symptoms listed above tend to come and go with Crohn's sufferers. During a "flare," the Crohnie may have one or more, or even ALL of the symptoms listed. Typically, flares can be treated with medication, and eventually put in to remission so that the person can return to a somewhat normal life. Flares can last anywhere from a few days to several years. I, for instance, have had one of my fistulas for over 2 years. Medication isn't helping, so it's time for surgery.

Now, I want to talk about the not so common symptoms of Crohn's Disease. Some of these are so strange and seem like they can't possibly be related to Crohn's. But remember, Crohn's Disease is an autoimmune disorder. That means our immune systems are obnoxious little bastards who think it's fun to throw curve balls, just to confuse us (source: I made that part up). 

Here are some of the weird, bizarre, contradictory symptoms of Crohn's Disease: 

• Itchy hands and feet - it's the kind of itch that seems to be so deep inside, scratching is futile
• Erythema nodosum - painful, itchy red bumps on the calves and shins, usually along with swollen ankles
• Eye sores
• Psoriasis and/or eczema
• Nail clubbing - fingernails become too large and too curved; typically have pits and waves in them as well
• Sudden blisters on the hands and feet
• Excessive salivating
• Vertigo
• Neuropathy (numbing & pain) of the hands and feet
• Random, uncontrollable cursing and swearing

Ok, so that last one was just for fun, but it happens! The last list includes things I have personally experienced, and discovered to be secondary symptoms to my Crohn's Disease. As you can see, Crohn's can manifest itself in a myriad of ways. In no way are my lists complete, and I would love to hear from others what their symptoms are. Please feel free to comment below or use the contact box to let me know!

Must Be Something I Ate

In this post, I want to talk about foods that Crohn's and ulcerative colitis patient can and can't eat. As you will learn, that is a very general statement. But first, I want to make a few things clear...

One of the most common misconceptions about Crohn's Disease and ulcerative colitis is that it's caused by foods we eat. As if eating some sinister combination of foods will cause anyone who eats it to become gravely ill. I would like to clear that myth up right now, in a way that should be easy for anyone to comprehend.

Crohn's Disease is a disorder of the immune system. In people with the disease, the immune system thinks the digestive system (anywhere from mouth to butt) is a foreign object, and tries to attack it. This leads to severe swelling, bleeding, and pain as our bodies try to "fight off" something it shouldn't be. Basically, it's a civil war between body functions. What a person eats will not determine whether or not they get the disease. 

That begs repeating:

WHAT A PERSON EATS WILL NOT DETERMINE WHETHER OR NOT THEY GET THE DISEASE.

It's extremely difficult to determine what causes the disease to become active in someone who carries the disorder. In fact, years of medical studies have still not pinpointed exactly what factors cause the disease to "activate." Some theorize it could be certain types of pollution, various medications, or pure luck. A popular theory is that genetics determine the exact moment the disease will become active, and studies are ongoing.

With all of that said, let's talk about FOOD!

If you came here hoping to find a list of foods you can offer to your Crohnie friends, I'm terribly sorry that I can't provide that to you. No one can. There is no one-size-fits-all diet for Crohn's sufferers. But, I can give some perspective from at least one point of view - mine.

I'll start with the most common trigger foods, which seem to cause symptoms for many people with the disease. These are NO-NO foods for me:

• Nuts - any kind
• Seeds - any kind
• High-fiber foods, such as whole grains
• Most fresh fruits, especially apples (including applesauce), strawberries, grapes, and raspberries
• Fresh greens, like lettuce, spinach, or cabbage
• Vegetables with seeds or "skin," like corn, peas, and small tomatoes
• Vegetables with stringy insides, like celery or bean sprouts
• Beans - any kind (although, I can get away with eating green beans sometimes)
• Spicy foods

As you can already see, eating "healthy" is really difficult for me because all of the healthy foods make me sick. Here are a few other seemingly random items I have discovered I shouldn't eat, that aren't as common as the above items:

• Bacon (yes, it's OK to cry)
• Red meat
• Some fried foods - still trying to determine if it's a certain type of oil
• Popcorn
• Peppers - all kinds, even the sweet variety
• Onions
• Highly-carbonated beverages

I won't lie and say that I NEVER eat the foods in the lists above. Sometimes, I bargain with myself: If I eat this, will it be worth the pain/fever/trips to the bathroom or possibly even a trip to the hospital? It's a gamble. Sometimes I win, sometimes I lose. But I also do this to keep trying foods that once triggered my Crohn's, to see if my Crohn's will now allow me to have them. 

At one point, I could not digest any cholesterol. ZERO. All meat, eggs, and dairy made me violently ill with vomiting. (It was a trip trying to narrow down the diet to figure it out, too, trust me.) After about two years of a strictly-vegetarian diet, I started to reintroduce animal products, one by one. I can now consume dairy products, eggs, and even some poultry and fish/seafood! Sorry, animals, but this girl is hungry, and you're edible. 

The cows and pigs remain lucky at this point. 

The things I CAN eat will be in another post, for another time. It's a sad list, because it's short, and it's full of all of the things that make other countries hate America. Until then, please feel free to comment with your trigger foods, or questions about certain foods. 

It Takes Guts

Since my official diagnosis of Crohn's Disease in 2002, I have found the Internet to be my most useful tool in learning about the disease itself and, most importantly, other people's experiences with the disease. The Internet helped bring me from feeling awkward and alone to feeling like I was part of a community - a part of something bigger. I no longer had to suffer alone, and I quickly discovered that many of my own experiences were completely normal among a large population of fellow Crohnies. I have come to depend on the net-izens of the Crohn's community to gauge my own expectations, and for support when I need it most.

I want to give back.

Sounds simple enough... anyone can donate to Crohn's organizations, like the CCFA, or participate in fundraising activities like the GYGIG Ride. But these weren't the things, people, or activities that helped me the most. I wanted to be able to help people directly, one-on-one. I wanted to give the same reassurance and support I had received over the years from fellow Crohnies.

That's where this blog comes in.

I decided to create this blog to chronicle my Crohn's Disease experiences, in hopes that someone will benefit from the information, or just not feel so alone. I invite you to read my experiences, share info, ask questions, and be curious!

It takes guts to put up with this disease, its symptoms, the endless sea of medication, and life as a Crohnie in general. We are a force to be reckoned with!