Scheduled Group Online Crohn-ies Chat

Hello everyone!

*** Calling All Crohn's Sufferers! ***

After being disappointed to learn that my local CCFC chapter does fund raising meetings, but not support meetings, and since I've recently 'met' several other Crohn's bloggers who all have their own unique experiences but are all supportive and awesome people, I've decided to organize a scheduled online chat, open to people with Crohn's Disease or who know someone with Crohn's. The chat will be at a scheduled time and will be through a website with a chat room set up. It will be invitation only though, so we don't have the general public stumbling in. I would like to create a positive and supportive event where we can all share stories, provide encouragement and answer each-other's questions.

I'm hoping that we will have these periodically if all goes well, so even if the date/time of the first one isn't convenient for you, there will be other chances. If you're interested in receiving an invite (a link / password), please send me your email address by emailing me (brightsideblogger at gmail). Tell me a little bit about who you are (are you a fellow Crohnie or do you know someone with Crohn's?). I will collect the email addresses of interested people and will send out the info once it's set up. I'll post the date and time here once it's decided on, and I've received enough interested people.

Please note, that family-friendly language is to be used at all times and I will ask that people stay on topic, and do not post advertisements in the chat. There is a certain diet that claims to "cure Crohn's", this is not scientifically proven and linking to sites about this diet or "pushing" this diet during the chat will not be tolerated. I'm hoping to create a friendly and safe atmosphere where we can share our experiences. Thank you for understanding.

Again- if you're interested in being notified about the location when it happens, please email me.

Crohn's Tips - Part 3: The Intellectual Side of Crohn's

Contents
Crohn's Tips Part 1: Introduction
Part 2: Physical
»Part 3: Intellectual
Part 4: Emotional
Part 5: Spiritual
Appendix: Crohn's Tips: Food

• Download the latest edition of the full guide as a PDF: http://www.brightsky.org/crohns-tips-guide.php

Taking a smart approach to your chronic illness can have real benefits for you, both mentally and physically. The bad news is that you can't cure yourself, but the good news is that you can turn having Crohn's from a scary confusing situation, to a manageable bump in the road. You can go from being a victim, to living a full, happy life. This section contains tips for things you can do from an intellectual perspective, including learning, organizing and acceptance.

• Learn the facts: the very first thing you should do is eliminate any confusion or general questions you might have, and take away some of the ominous mystery of your diagnosis by learning everything you can from reputable sources. Go to your local library or bookstore and pick up some factual books about Crohn's Disease such as Crohn's and Colitis: Understanding the Facts About IBD by Hillary Steinhart. Knowing what it is, the treatment options, and what is ahead of you can help you face and accept your situation. It's probably not as scary as you thought, and will keep your imagination from inflating your worries.

• Avoid sketchy information: There are a lot of websites out there that claim to know how to cure you. Special diets, miracle vitamins and other unproven 'solutions'; but there is currently no real cure. Make sure you know the difference between reliable websites and books, and those which are pushing an agenda or product. Always get your information from multiple sources to be sure about it, and then check with your doctor before taking any action, trying any diet, or taking any vitamins or medication. Also be aware that spending too much time on forums and blogs can leave you with the impression that there is no light at the end of the tunnel. Remember: people who feel awful may want to post on forums, but people who feel great might be too busy to post their success stories; so online, Crohn's Disease may seem worse than it is.

• Keep a personal medical binder: In this binder keep all the information sheets from the pharmacy about your medications, a list of your doctors and their contact information. Your current medications and vitamins. Information sheets about hospital stays and surgeries. Write down a list of questions for your next doctor visit. When you get home from a doctor visit, record everything you remember that he or she told you (or bring your binder to the appointment and jot down notes while you're there). Keep a symptom journal and record what you eat, how you feel, your pain level, temperature, washroom trips and irregular medications you had to take. This may seem silly, but having it all together in one binder or folder will be a lifesaver when you're trying to remember whether some feeling is a symptom of one of your medications and whether it's serious or not. It also helps to recall the advice of your doctors long after you would have forgotten, or to watch for a pattern of symptoms or worsening pain. Once I was brought to the hospital in an ambulance and had the sense to bring the binder with me. It helped to speed up my admission to the ER because the admitting nurse could fill out my paperwork quickly from my binder notes, rather than ask me questions through the morphine haze.
  

• Keep your medical information in your wallet: Keep a folded sheet of paper in a visible spot in your wallet that says Medical Alert on the outside. Inside record your emergency contacts, doctors, medications and allergies. Also record your diagnosis of Crohn's Disease and any recent surgeries. Consider purchasing a Medical Alert bracelet or necklace. Also give this information to a loved one in case it's needed.

• Keep your medical receipts: You may be able to claim medical expenses on your income taxes.

• Watch your state of mind: Keep an eye on your thoughts. Are you making problems seem bigger than they are, or are you ignoring serious issues? Are you following the advice of your doctor? Are you sadder than usual or possibly depressed? Are you avoiding the situation or refusing to ask for help?

• Remember to be thankful: Every single person (that includes you!) has something to be thankful for. In the thick of a Crohn's flare up it can be hard to remember that there is more to life than pain, washrooms and food you can't eat. Stop for a moment to make a list of all the good things and people in your life. Compliment yourself. Try not to let your Crohn's Disease taint the rest of your life too.

• Accept yourself: You have Crohn's Disease. That is a part of you, but it's not all there is to you. Accept what you can't change and gather the determination to make the best of the precious life you have. Mental attitude can mean the difference between misery and happiness. Look in the mirror and vow to live life as fully as you are able, and to find joy where you can. When Crohn's gets in your way, take things one day at a time and you'll get through it.

• Help find a cure: Check out the CCFA (www.ccfa.org) or CCFC (www.ccfc.ca) websites to learn how you can get involved with helping to fund research, raise awareness, or support others in your community. Every little bit helps.

• Have fun: Make sure you aren't thinking about your disease all the time. It can gnaw at the back of your mind constantly. Don't let yourself get caught up in this pattern. Take a break and relax. Talk to friends. Do something you enjoy. Watch a movie. If your mind is constantly churning, try techniques like meditation or talk therapy to clear your thoughts and refocus yourself.

Having a chronic disease can be scary. But being smart, organized and accepting can clear the confusion and reduce or eliminate your fear.

If you have intellectual side tips to add, feel free to post your comments or feedback here. Stay tuned for the next part in this series.


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You may only copy, share and distribute this work under these terms.

Wound Healed (ish) !!!!

Today, the nurse discharged me from the home-care agency. My wound has healed over (woo!) though it is still tender and sore, at least it's now dry and light pink.

*dances a jig* WOO! YEAH!

I'm happy to reach this little milestone, it gives me more freedom to take care of myself and not have to be home on a given day waiting for the nurse. Not to mention the joy of being able to shower daily now! Yeah! Though a small part of me (ok, a big part) is going to miss my nurse, and is a little scared to no longer have someone looking out for me on a weekly basis and answering my questions. It was reassuring to have someone who I could turn to if I had a worry. Now I'm left with having to phone Dr. GI and get his receptionist, leave my question with her, then wait sometimes more than a day for a response. Bah! Oh well. Time to be brave!

I'm going to continue checking my temperature, weight, pain level and the look of the wound on a weekly basis- my little collection of medical papers and journal has become quite an interesting duo-tang of Crohn's-y goodness. *laughs*

Anyway, I want to tell my fellow Crohn's sufferers out there- don't lose hope! And take the small victories when you can get 'em!

Dear Crohn's Disease

Dear Crohn's Disease,

You suck. And I mean that in the strongest sense of the word. You're painful, gross and embarrassing. If that wasn't bad enough, you're also incurable and difficult to treat. No one likes you. Really. Despite all that, you decided to take up residence in my beleaguered abdomen. Sometimes I look down at myself and imagine I can see you lurking around with shifty eyes, working your evil schemes. Sometimes when I'm alone and overwhelmed, I wonder 'why me?' and the tears come.

However, here's the thing, something you don't know. I have this amazing gift- life. It's precious beyond measure and I only get one. I have no idea how long or short my life will be. Where it will take me, or what's in store for me. But I do know that I have this life. It's mine, not yours. So guess what? I'm not afraid of you. I'm not your victim. I'm not at your mercy. I have this life, that is more valuable than anything, and I'm not going to waste it. You, as challenging and difficult as you are, cannot stop me from living my life to the best of my ability. Maybe you might slow me down, or affect my options and choices, but I am still going to live my life as fully as I can. I'm going to face you head on, deal with your schemes, and move forward. You will not be a shadow over my life. I have a choice, and I will always choose to live my life on the bright side; with hope, family, friends, love, joy and compassion. As long as I have those, you are powerless, and I am free.

Topsy Turvy

A strange mood hangs over me today. A nurse came today (the head wound care nurse this time) and she assessed my wound and said it looks great and that it's almost closed. She reduced my nurse visits to once per week now. So I suspect my time of having regular home nurse visit is soon to come to an end. This should be excellent news- and it is. However, a small part of me doesn't want to lose the comfort of having a trained nurse come to my home a few times a week. Whenever I have odd pains or concerns, discussing it with my nurse has usually relieved my concerns.

For example, yesterday I was back up to a spike of pain around 6/10. I was feeling bloated, and wasn't making my usual 5 trips to the washroom. So naturally I was concerned. I took half a pain pill and used a hot water bottle and mild stool softener and today I feel a bit better. I also mentioned it to the nurse who reassured me that the Barium from my small bowel follow through could cause a bit of constipation. So it's nice to have that kind of access to someone with knowledge. It's also nice to be taken care of. She checks my vitals, asks about my symptoms and oohs and aahs over my slowly closing wound- telling me how well I'm doing. Maybe it's childish- but I'm going to miss that motherly attention. This is probably heightened by the fact that my nurse is such a sweet kind woman. But, I'm healing up, so it's time to move on and face the future bravely and nurse free (soon).

I think I know why I feel compelled to blog about my Crohn's. It's because no one really, truly wants to listen. And people really don't know how to console someone with a chronic and often gross disease. No one wants to hear about my bowel activities- and I don't really want to tell them. But when I go into generalities about feeling scared or sad, my family and friends, for the most part, don't know how to respond. Their response is often a generic: "don't worry, you'll be fine." or "It'll get better, you'll see.". As much as my loved ones are trying to help, they really aren't. And I don't blame them. I'm the sick one and even I wouldn't know what to say to myself. I think what I really want is someone to listen, without changing the subject to an unrelated topic, or to what's wrong with them, or whatever. Or to lecture about what they think I should be doing. I understand their discomfort... I bet it puts their own mortality in perspective, and, hell, who wants to hear about diarrhea and cramps even if I do put it in general, non descriptive terms. So, I'm not mad or disappointed in my support network, I just... hell, I don't know what I want. I do wish my local chapter of the CCFC had support group meetings, not just fundraiser planning meetings.

Anyway, obviously I'm feeling a little blue. I have always fought a personal tendency to wail against the unfairness of life, or to focus on the things I don't have rather than all the things I do have. I guess I just have to remember my own advice to count my blessings. And maybe explaining my need for a open ear to my family and friends would help them, to help me.

Explained: Small Bowel Follow Through

Today I had my first Small Bowel Follow Through. This is a test that allows the doctor to see an x-ray of your small intestine as the Barium you swallow moves through and shows up very clearly on the x-ray. It wasn't too bad after all, and for me it took less than an hour.

The day before, I had to eat a light early supper and then no more food. Then, nothing to drink after midnight. When I was called out of the waiting room, I was initially told to change into a hospital gown, but when the technician saw I was wearing athletic pants (no metal) she let me leave my clothes on. I was brought 2 cups of thick, chalky white liquid Barium that looks a little like white paint. I'm not going to lie, it tastes gross and feels grosser. Even with the faint fruit flavouring. My body just does not want to swallow something of this bizarre consistency so I really had to concentrate to get it all down. That took me about 10 minutes of fighting the urge to gag and ignoring the rumble in my stomach.

Then I was brought into the x-ray room and asked to lay down on a platform. I had to hike up my bra so the metal in it wouldn't interfere and they lowered a camera arm over my abdomen. The tech took an x-ray of me lying flat on my back. When she looked at it she was surprised how far the Barium had moved already and she moved the camera down toward my mid stomach a few inches and took another shot.

Then I was returned to my chair in the hall outside the X-ray labs and waited around with my Mom for about 20 minutes. Then I was brought back in, this time to a different x-ray lab (just a coincidence I think) and two techs this time took images of me rolling over on either side, the tech had a little wand thing to press down on my stomach gently. I could even see the video of my insides on a monitor next to me and could see my insides squirming around (wish I had been wearing my glasses for a clearer view). I'm amazed how much your insides slosh around when you are laying still! The fact that I could see video however means to me, that I was being constantly bombarded with some level of radiation. Not cool.

After a few images were snapped and a bit of moving side to side- that was it. I was allowed to go home. I did ask the first technician how many x-ray tests like this it would take to affect my ability to have children some day. She looked at me with wide eyes and asked- "Are you pregnant??". I said no, but I want to know if all these tests I'm having will make me infertile. She said, "oh, you don't have to worry about that at all. How many x-ray tests have you had like this?" I said about 4, and she smiled and said "oh, you don't have to worry about that at all". So I feel better about that.

When I got home I started drinking tons of water as instructed... and a little over an hour after I first drank the Barium, it started leaving my body (ahem to put it nicely). It's pretty gross, but because your body does not absorb it... and it's a liquid (or maybe it's a fine powder mixed in a liquid- it IS a heavy metal after all) your body just passes it through without digesting or absorbing it. I'm not concerned about how fast it passed, b/c my breakfast didn't follow it in the same amount of time. So no worries here. Update: 48 hours later it's still not all out of my system. And I did get some bloating and a bit of pain a day after. My system did not like the Barium that's for sure. Found this quote:

"Following the examination, barium may cause constipation. The patient may be advised to drink plenty of fluids and eat foods high in fiber to expel the barium from the body." (mcghealth.org)

Overall the worst part is drinking the Barium. It's not a scary test after all- and it does give your doctor a good view of an otherwise difficult to access part of your digestive tract. So if you're scheduled for one- don't worry, it's not too bad.

Small Bowel Follow Through Tomorrow

Today I'm feeling pretty nervous. I'm going for a Small Bowel Follow Through tomorrow morning. So no food for me after dinner today, and nothing to eat or drink after midnight. The test involves swallowing some stuff that is visible on an X-ray, usually Barium, and then having an X-ray picture taken every 15-30 minutes or so until it travels all the way through my small intestine. I've read that the test can take anywhere from 1-4 hours! I'm not worried so much about the test itself, other than how long is it going to take (and feeling bad for asking my Mom to come with me, before I knew she would be sitting around for hours!). Although I'm not really happy about all the radiation I've been getting lately (I hope it doesn't affect my ability to have children some day).

What I'm most worried about is what the results of the test will show. My doctor wants to use this test to see if I have other sections of inflammation, or if it is just the one short section. I've been clinging to the hope that it's only in one small spot... and I really don't want that hope to be shattered. These results will also determine what my future treatments will be. Oh boy.... deep breath! I'm scared.

Crohn's Tips - Part 2: The Physical Side of Crohn's

Contents
Crohn's Tips Part 1: Introduction
»Part 2: Physical
Part 3: Intellectual
Part 4: Emotional
Part 5: Spiritual
Appendix: Crohn's Tips: Food

• Download the latest edition of the full guide as a PDF: http://www.brightsky.org/crohns-tips-guide.php

Anyone suffering a physical illness can attest to the fact that physical problems and issues are first and foremost in their minds. Sometimes we can get so caught up in caring for our beleaguered bodies that we put the rest of our lives on the back burner. Pain is a hard thing to ignore. Crohn's pain is a complicated beast to tame, and since there is no cure for Crohn's, it can become a question of managing rather than eliminating it. This can be disheartening, but luckily there are options- both medical and otherwise. In this section of my Crohn's Tips series I will list some suggestions, tips and strategies for dealing with the physical effects of Crohn's. Some of these you have probably read countless times, but hopefully a few will be new and helpful.

• Get a pit bull of a doctor: Make sure your gastroenterologist is giving you all the tests available to diagnose your condition, and is trying out the many therapies available to you: drugs, diet, surgery and more. "It's all in your head." and "You'll just have to live like this." are not acceptable answers. Discuss medications for pain and diarrhea. If your doctor is not a go-getter then get another one, or insist on the tests and treatments yourself. This point can make all the difference.

• Take the pain meds: When I was first diagnosed and suffering with pain in the 8-9 out of 10 range I was rarely taking the pain medication I was prescribed. Somehow I thought that was giving in, or crossing an invisible line into being 'really' sick. My doctor, nurse, boyfriend and family all convinced me I was being a fool. Now I'm not afraid to take the pain-relievers if I need it. It's about quality of life. Be smart though: only take what you are prescribed and follow the directions carefully. Pain medication can be habit forming. Tell your doctor what you've been needing to take.

• Ask about pain management: There's no reason to be suffering chronic pain without exhausting all your options. Your doctor can refer you to a Chronic Pain Specialist who can suggest more strategies than just pain medication. These include a beneficial diet, exercise, techniques like heating pads and more. You may also want to explore homoeopathic treatments like massage and aroma therapies, meditation, acupuncture/pressure, herbal remedies and more. Don't accept "live with it" as an answer. The website pain.com has a variety of information about dealing with pain and a search form for pain clinics in your area.
  

• Eat: While eating can trigger your symptoms, avoiding food is not an option. Eat what you can as often as you can. Make maintaining your body weight a priority. You body is trying to do it's best to fight off the problems- it needs fuel to do so. Had surgery? Increase your protein intake to help heal your wounds. Talk to a dietitian to make sure you're getting the proper nutrients. Talk to your doctor about the possible need for supplements. During the times when you're feeling well, cook in bulk. You can cook a dozen pork chops or chicken breasts and freeze them after cooking; then take them out as needed, add some water and microwave. A healthier 'frozen dinner' than the boxed kind- and cheaper!
  

• Keep a symptom journal: Buy a notebook and each day write down exactly what you eat, your symptoms, pain (intensity and location), describe your bowel movements and frequency and times. Record your stress levels and fatigue levels as these can have an effect. This journal can be vital in finding triggers for your worst symptoms. Bring it to your doctor too because this can help him/her to treat you. The value of this journal can't be underestimated- it's how I discovered that dairy was a primary trigger for me- but the symptoms didn't show up until 2 days AFTER eating dairy. I would never have clued in if I had not seen the pattern on paper.

• Ask for help: Can't lift that big jug of water? Feeling too exhausted to grocery shop? Just need someone to hold your hand or make you some soup? Ask for help- you'd be surprised how quickly your friends and family step in. Someday you can return the favour.

• Simplify your life: To much busyness can be exhausting and can worsen your symptoms. Know what is important and what isn't. Each day try to tackle the most important of tasks and don't stress about the rest. If the garden doesn't get weeded, or the Halloween decorations stay up a little longer, it is not the end of the world.

• Take lots of me time: You may be a parent. Or a business person. Or a member of a team or club or other group. Don't let your obligations stop you from having a lot of down time. Just read a book or watch some TV. Take an extra nap. Fatigue and stress can amplify your Crohn's symptoms- so make sure you unwind- often. Learn to say no.

• Get enough sleep: Your body is fighting a war, and you need sleep. Fatigue can amplify your symptoms and make you miserable. Make sure you're going to bed early enough- trust me... that TV show is not more important than your sleep. Make this a priority. It will improve your ability to function during your waking hours.
  

• Buy a hot water bottle or heating pad: Warmth on your abdomen can soothe pain and discomfort. The rubber water bottles you fill from the tap are my personal favourite. They can relax muscles, calm your digestive system and help you fall asleep. A cheap, versatile tool. A warm bath can help too.
  

• Make an ERPK: An Emergency Roadside Potty Kit. This tip was provided by Jenni at: Jenni's Guts. Keep a pail, some plastic bags, toilet paper and extra underwear in your car- it may not be a pleasant thought, but better safe than sorry.

• Keep moving: Try to do what little exercise you can. Go for a short walk down the street or just around your room. Stretch gently. Keeping your body healthy overall will help speed your recovery time from surgeries and help your body fight infection. Our bodies were built to move so even if your digestive system is out of whack- at least the rest of your body can be in good shape. Take it easy and only do what you can physically handle. Check with your doctor before doing strenuous exercise.

• Buy some comfortable clothes: Before I had Crohn's the only pants I owned were jeans, PJs and dress pants. That didn't give me very good options for the times I was in the hospital or recovering from surgery. Buying some soft, loose, comfortable athletic pants and some soft long sleeve shirts meant that at least my skin was feeling good, and I didn't look terrible either. Trust me- you deserve this. What other people think is irrelevant.

• Buy the expensive toilet paper: Do not skimp. Get the ultra soft. Seriously, you deserve it. Oh, and a dab of petroleum jelly (Vasciline) used externally can help with rawness.
  

• Discuss your Crohn's with your significant other: Pain, drug side effects, bathroom trips and more can all put a damper on intimacy. Make sure your partner is aware of your fears, concerns and self consciousness- so that he or she knows it's not their fault you feel less than eager. Hopefully together you can work through it and handle any bumps along the way.

• Know where the washrooms are: Most Crohn's sufferers do this by instinct. Mentally map out the locations of washrooms when you go to a new place. Avoid places that have no washroom facilities, and bring some anti-diarrhea medication with you at all times.

• Keep a couple personal travel wipes with you: You can often find these hygienic wipes marketed to women, but guys- trust me you'll love 'em too. It's nice to feel fresh when needed, especially before some impromptu intimacy.

• Keep your medical information in your wallet: Write down your Crohn's diagnosis, current medications, recent surgeries, doctor and emergency contact numbers along with any allergies, and keep it in your wallet. You never know when it may be needed.

• Keep your medical records organized: File the drug information printouts you get from the pharmacy. Write notes after each doctor visit and record everything they told you. Keep a little diary of your treatments, tests and symptoms. Write down all your doctor and drug information and a list of questions for your next doctor visit. Having all this information at hand can be so important- it's easy to forget what each doctor tells you- but having it written down can give you peace of mind.

When you are first diagnosed and in the middle of a painful flareup, it's easy to start asking "why is my body doing this to me?", and to start feeling like you're at war with yourself. Don't get trapped into this outlook. You body is your vehicle for your life and it's the only one you've got. It's trying it's best to fight off the problem, but just can't do it. Take care of your body as well as you can- if you smoke, get some help to quit. If you drink, cut back or stop completely. Get what little exercise you can manage, and eat healthy foods that don't trigger your symptoms.

Learn to listen to what your body is telling you. We get constant signals from our bodies telling us when we are thirsty, hungry, tired or sore. Telling us when certain foods disagree with us or when we feel the urge to get up and get moving. Our bodies tell us when they are full, and when they are hurting. Somehow, society has created a trend where we ignore what our bodies are telling us. We keep eating when we're full, we stay up when we're tired. You know what I'm talking about. Learn to pay attention to your body's signals, feelings and appearance; so you can know what's normal for you, so you can recognize symptoms earlier.

Our digestive systems might be having a rough time- but don't forget that the rest of your body needs to be taken care of too. In addition to treating your body right... don't forget to spoil yourself once in a while. Maybe that means a nice long bath or an extra nap. Or maybe a manicure or a massage. Whatever you're going through, don't let it become a battle with your body which can lead to a slippery slope of self-loathing. Remember that it's not all bad and that with careful attention to your physical well-being, your Crohn's can be managed and you can live a full life.

Do you have other tips to add to this list? Feel free to comment or send me your own tips. Stay tuned for the next segment in this series.


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You may only copy, share and distribute this work under these terms.

Question: How do you count visitors to your blog?

Do any other bloggers out there know if there's a way to view how many visits you get to your blog? An add-on or setting or something? Just curious. Comments are a poor way to guesstimate.