Tuesday, December 23, 2008
Christmas is my favourite holiday. By far. I love spending time with my family and friends. I love the lights and the music. I love the traditions like decorating the tree, putting up the Christmas village, and making chestnuts. Over all of these heart warming events is the general feeling that fills the people throughout the city. People give generously to fundraisers and charities. They wish you a Happy Holidays with genuine feeling. They smile more. There's a hint of what humanity could be, if we could figure out how to carry this good will in our hearts the whole year through.
I like giving gifts to people. I put a lot of thought into the gifts, and wrap them carefully. I'm always so excited to watch someone open a gift that I picked out. I also try to carry a few extra $5 bills in my wallet for the various charity collections around. Giving is just fun.
During the holidays I like to sit back sometimes and just become a quiet observer during the Christmas drama: the debates, arguments, jokes and laughter. While I sit quietly watching the whirlwind around me I remember how thankful I am to have such a supportive family. This year, I have an extra reason to be thankful. Just a few months ago I was in an agony of pain. I had just learned I have Crohn's Disease and was going through a surgery, a course of dreaded Prednisone, and more pain than I have ever experienced. But today, I'm feeling great. I can feel deep inside that things are still not 'right', but my pain is gone, my surgery wound is closed, and I can physically live my life as I choose. See, there is always hope!
Life is fleeting. For those with a chronic illness, we also know that periods of feeling well can also be fleeting. This fact only makes them more valuable, and underscores the need to make the most of what we are capable of doing right now. I know many of my readers are in pain at this very moment; but do you feel well enough to sit carefully on the couch and visit with family? Can you snuggle up with a hot-water-bottle and a loved one and watch a Christmas movie? Even if it is limited- the things that you can do now are precious and worth being thankful for.
The Holiday Season is exactly what you make it. So, this Christmas, I challenge you to ignore the materialism and stay in your budget, avoid family drama and just enjoy the presence of those you love. Remember your blessings, share what you can, and hug the most crotchety person in the room. Make your Christmas this year, the best one yet.
Merry Christmas and Happy Holidays to You! Thank you for reading!
Thursday, December 18, 2008
- "There's little scientific evidence to show whether it is truly effective or which patient population it helps."
- "It's getting mixed reviews from both patients and physicians."
- Some people are actually helped by this diet, and are vocal supporters. But the percentage of people it helps versus people it does not help is unknown.
- There is the potential for nutritional deficiencies on this diet.
- You should never stop current treatments and replace them with trying a new diet plan.
- You should always consult your doctor and continue regular monitoring when trying a new diet plan.
- This blog receives frequent comment-spam and emails trying to blatantly push the Specific Carbohydrate Diet, as well as some that are vague and friendly, but if you follow their links or suggestions far enough it leads to SCD websites. This makes me suspicious. And annoyed. *
- Different diet plans help or bother people differently. Two people with Crohn's Disease may have totally different food sensitivities. The SCD may in fact just happen to coincide with what helps some people. Just like my diet of no dairy, fibre, spice, acid, caffeine, or gassy vegetables helps me.
- Keeping a food and symptom journal will help you determine foods that worsen or improve your symptoms. Take this journal to your doctor for help analyzing it.
Now, all you SCD fans out there, feel free to post your stories here, but DO NOT include links. Note that I will NOT publish SCD slanted comments in other posts on this blog, so you can stop spamming this blog already.
* Let the comment flaming begin. Note that I will NOT publish comments that contain SCD links. Period.
Wednesday, December 17, 2008
Saturday, December 6, 2008
I was reading Alicia's blog (I'd Like To Buy a Bowel) and I've been just utterly amazed and inspired by the fact that she's feeling great and doing all kinds of running and marathon training and... wow. That girl rocks. I was thinking that, when I have periods when I feel well, I don't want to just take them for granted and let them pass me by like I have in the past. I'm going on about 15 years now of on and off resolutions to get in shape. And this is it! While running is not an option right now (I'm looking out at 4 inches of snow on the ground) and I'm not really a fan of running, but I wanted something easy that I could do throughout the day and keep track of. So, December 1st I set myself a goal of doing 5,000 jumping jacks before Christmas. Now... when I set that goal I didn't have a cold, so it's now become more challenging. But basically I have to average 200 per day till Christmas. Since I've been sick, I now need to step up my game. However, the great thing is that I can do a few at a time in the morning, sneak them in the washroom at work, in the evening and spread it out so it's doable. I have a dry-erase marker keeping track of my progress on a big mirror by my front door. I'm currently at 700! Yeah, that's actually not so good, I'm behind, with only 18 days to go, I now need to average 240 per day! Yikes!
But anyway, this is just a fun little way of motivating myself and maybe others around me to join in. I hope to set a new goal for January. And the Christmas gift to myself will be to feel better, have more energy and to be proud of myself for sticking with it. With a chronic illness you have to make the absolute most out of the good days as you possibly can. We can do it!
Oh, and all this snow, Christmas lights, wrapping paper, music and more has got me in a festive mood! So, I just want to say Merry Christmas and Happy Holidays to everyone! Get out there and give generously of yourself, and share as much joy, laughter, and friendship as you can!
Sunday, November 30, 2008
*** 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.
Thursday, November 27, 2008
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.
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.
Thursday, November 20, 2008
*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!
Sunday, November 16, 2008
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.
Friday, November 14, 2008
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.
Wednesday, November 12, 2008
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.
Tuesday, November 11, 2008
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.
Sunday, November 2, 2008
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.
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.
Thursday, October 23, 2008
Monday, October 20, 2008
»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
I've been living with Crohn's for many years, but only recently received an official diagnosis. When that happened, the first thing I did was try and hunt down some books which would provide helpful advice for dealing with Crohn's disease. So far I've found several books with medical information including treatments, as well as a few recipe books. But I haven't found much information on dealing with the day-to-day living with Crohn's that so many of us are facing. So, I thought I would share some of the things I've learned so far, here on my blog.
It seems to me, that the first step to helping yourself, is to know yourself. Really know. That means recognizing your positive attributes and your negative ones. It means seeing how you live your life- what's important to you, and what is maybe being neglected. From what I've seen in myself and other people, including what I've read... there tends to be 4 main categories under which our various activities can be grouped. These are the often mentioned: physical, intellectual, emotional and spiritual. I've noticed that each person gives more or less attention and focus to certian groups over others. The great thing is that this is what makes us all unique- none of these groups are better than the others.
For example, my brother is definitely physically focused. He's a personal trainer and the condition of his body is very important to him. He enjoys exercise, is very careful about what he puts in his body and he always dresses very well. He loves to learn about nutrition, fitness and health. He's very knowledgeable about these topics and his career as a personal trainer is perfect for him. This area is what makes him happy.
On the other hand, I definitely put my intellectual side first. I read a lot and love to learn. I'm drawn toward activities that are interesting or informative. I tend to fill my spare time with activities that are mentally stimulating or interesting: like reading, and various projects. My most neglected side is physical. While I'm thin... I consider myself to be a bit out of shape - no endurance at all. Every time I try to start a new workout plan, I lose interest.
I imagine people live their lives with their various focuses in a sort of diamond shape. At the top is your primary focus, at the bottom is the least one and the two others are somewhat even around the middle. Or maybe one is higher than the other. Mine looks kind of like this:
This diagram also gives some points that fall under each category to give you more of an idea of how I imagine the categories are split up. Your diamond might be a totally different shape- you might have two primary focuses. It doesn't even have to look like a diamond.
The point of all this... if you're still with me... is to make sure that you are giving all four areas of your life some attention. For example, I almost always neglect my physical side, and my emotional side sometimes gets short changed. For example when I get so caught up in my own projects and busyness that I haven't seen my friends in a while. What I'm trying to say is that while various areas of your life may be more important to you, and may receive most of your attention... you must take care of all these aspects of yourself to be happy and healthy. Crohn's disease, or any chronic illness can affect all these areas of our lives, and we can sometimes become so focused on our disease, that the areas of our lives that were already at the bottom of the totem pole are neglected even more.
While my recent battles with Crohn's have brought me closer to my friends and loved ones, giving my emotional side a new increase in attention, my physical side is still left out in the cold. Which is why I'm starting a very light new work out routine consisting mainly of stretches and very light exercise just to get me moving again. I'm also planning on checking in with my family doctor to get some blood work to check my nutrient levels, and to also see a dietitian soon.
At the same time, I've been very focused on my slowly healing surgical wound, and my various Prednisone induced side effects... so physical problems have really been occupying my mind. With a chronic illness, we need to be very careful to find a balance between taking care of ourselves physically, and not becoming overly obsessed or depressed about our physical troubles or difficulties. When you're in pain or running to the washroom a dozen times a day, it can be frighteningly hard to think about anything else- but the key is to do it in small steps.
My future posts in this series will contain some tips grouped under each of the 4 categories I've discussed. Thanks for reading, and in the meantime... take a moment to think about the areas of your life diamond- write it down. What's important to you? What gets neglected? What do you enjoy and what do you avoid? Where do you know you want to improve? The answers to these questions are different for each person. My next posts will have tips related to Crohn's in each category, to help you manage this disease- so that you can get past having your life on pause due to Crohn's and you can instead give at least some of your attention to the rest of your life- and finding the right balance.
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Tuesday, October 14, 2008
I don't mean to knock the book- it was a good read. However it was a bit sad, and did not have the practical advice I was craving. Honestly, I think I could write a better guide to coping with Crohn's myself, and I'm toying with the idea of writing a short e-book and giving it away for free. Let me know what you think folks.
Interested in this book?
Friday, October 10, 2008
It's about 7 weeks since my surgery to have an abscess which formed around a perforation (fistula) in my small bowel drained. The 5.5 cm abscess was drained, I was put on antibiotics for a couple weeks (done now) and my now empty abscess hole was packed with gauze and I was discharged under the care of a home nursing agency. Thank god the government pays for this service! Over the last 7 weeks, the wound has been packed with a smaller and smaller amount of gauze, Silvercell, Iodosorb and various other cool products which fight infection and promote healing. I'm also now applying for a new product called Prisma that contains collagen. Anyway, what once was a large wound into which about 2 feet of gauze was packed... is now a 1.5 cm deep hole as narrow as a tooth pick. Needless to say, packing this narrow hole is rather painful, but it's necessary to ensure it heals from the inside out. Luckily I'm down to having a nurse come only 3 times per week. Thanks to Iodosorb which fights infection and lets me keep the same gauze in there longer. Keeping a wound warm, moist, and un-bothered is the best way to help it heal. Frequent fussing is not good. It also allows me to go in to the office to work on days I don't have a nurse (I work from home on the days a nurse does come). Thankfully I've been able to continue to work full time.
While my wound is slowly healing... it still requires me to have a good size bandage on my abdomen which collects the blood and other oozing fluids. I'm struggling with the fact that this makes me feel hugely unattractive. Sometimes it even smells like stew for some reason (no, I don't eat stew), which compounds this problem 100-fold. I'm sure my wonderful boyfriend is noticing that I've been more distant, but I find it nearly impossible to feel attractive and affectionate with a big stinky bandage on my stomach covering a sore, gauze filled wound. I don't know what I would do if I ever needed an ileostomy or those other nightmarish procedures. That is my absolute biggest fear at this point. I try to think of it as being better than suffering pain or even dying... but it's still a horrible fear.
To make matters worse, my relationship is still on the new side... so I feel horrible that I can't be my normal outgoing, upbeat, and affectionate self. Especially since he's been so supportive and positive about this whole ordeal, and seems totally ok with having a Crohn's-y girlfriend. I feel like I'm just putting my life on hold, waiting for the wound to heal so I can move on with my life, the further medical tests I need, and the treatments my doctor wants to try. It's all riding on this wound, so it's become a hated nemesis. I just wish I knew if there was still any stool present in the drainage, like there was at first. Then I could at least know that the fistula had healed. But now with the blood, the brown Iodosorb and the yellowish natural wound fluids, it's too hard to tell if there's any stool present. Maybe that's the stew smell? I don't think so however, and my nurses say it looks good and that if there is any stool, it's a minuscule amount. So I guess that's good.
Besides my wound troubles, I'm still fighting with the side effects of the Prednisone despite having been off it for a few weeks now. My hair is still falling out in alarming amounts, I've got extra acne and fuzz on my cheeks. Not cool. So if I'm feeling unattractive- you can understand why. I'm obsessively wondering when these things will go away and if they will at all. Will my hair thicken back up? Will the peach-fuzz fall out or do I have to wax it out? Etc. It's maddening.
I've also been making a few trips to the washroom each day. Mild diarrhea has returned, but nothing like that described by other Crohn's sufferers. But enough so that it makes me dread having to use the restroom at someone else's house. Luckily it's about the same as it has been for the last 7 years of my life, so I'm not too put out by it.
Luckily my pain level has been about a 1 to 3 out of 10. So that's pretty darn good. I think most of the pain is coming from the wound and not the internal Crohn's thankfully. So pain is not a very big issue for me, but tiredness is. I've always had a problem with going to bed early enough. I tend to get deep into a book or something that makes me lose track of time. So, even though my recovery requires EXTRA sleep, I'm still probably not even getting enough for a normal situation. Part of my plans for the short term is to get to bed earlier. I'm yawning way too much.
Overall I think I've been feeling pretty good physically. It's the emotional things I'm struggling with. Feeling kind of ugly, and not knowing what my future holds with this disease are particularly hard. Luckily when I get too sad about it, I can look on the Bright Side at all the things I have to be thankful for, and that helps turn my mood around. From reading other blogs I also know that it could be much, much worse... so I'm thankful it's not.
Crohn's is hard, both physically and emotionally, but when I read stories of other sufferers, I am always inspired by their courage and determination. It's partly because of that inspiration as well as from a desire to be proactive and help find a cure... that I'm going to be organizing a fundraiser shortly. It will go through the official CCFC and CCFA websites, but I'm going to collect a tally of the donations that people make. I am setting up a web page all about it, and a form people can use to tell me about their donation so it can be added to the tally. Once I have this ready, I'll post it here. So if you're planning on making a donation soon... just hold off and you can join my little group donating event! Stay tuned!
And to everyone reading my blog- thanks for visiting- and stay tough! Your comments and messages mean a lot- thanks!
Tuesday, October 7, 2008
Most of them have been to a doctor multiple times. In some cases the test showed up clean, in other cases they refused to go for the more unpleasant tests. Reminds me of myself a few years ago. While I'm feeling fairly good, and getting the treatments I need, my friends are suffering on and off without answers. So, I've put together a list of tips and things to tell your doctor about to help get a diagnosis.
• Go for all the tests your doctor needs. They aren't so bad- even the dreaded colonoscopy is a big nothing- I was knocked out the whole time. This is so important- these tests are the only way to get a firm diagnosis.
• Keep a symptom journal. Record everything you eat, your fatigue level, stress level, pain level, bowel movements and a description of them. In all the gross detail you can manage.
• Tell your doctor about how long you've been experiencing these symptoms -to rule out short term causes like the flu or food poisoning.
• Describe any other problems you may be having even if you think they are unrelated. Examples are: skin rashes, joint pain, muscle pain, headaches, dizziness, fatigue, trouble concentrating, etc.
• Describe your pain on a level of 1 to 10. One being barely noticeable, and 10 being the worst pain you've ever experienced in your life.
• Tell the doctor about all medications and vitamins or natural remedies you are taking.
• Insist that your doctor be proactive in sending you for tests and trying treatments. Don't let the doctor send you home feeling like you are just doing this to yourself with stress, or that it's a natural part of life, or that there is no answer. Get a second or third opinion if necessary.
Suffering in silence is no way to live. Our medical system, especially in Canada is open to everyone and despite occasional wait times, the quality of care is excellent. Even if you are diagnosed with a disease like Crohn's that has no cure, there are still a large number of therapies and treatments that can greatly improve your quality of life. Don't be afraid to stand up and demand the help you deserve.
Monday, September 29, 2008
Add on top of that, the fact that I'm suffering from some mild Prednisone withdrawal symptoms. Fatigue, sore muscles and joints, nausea. I feel 'off' the last few days. Just great.
My plan is to wait for my nurse to come today, which should be any minute now, and consult with her on what I should do. Call my GI and try to get an appointment in the next few days? Go back to the hospital ER? Do nothing and monitor my temperature and heart rate (signs from my first abscess)? I don't know!
I called one of my best friends last night in the middle of a full blown panic melt down, and she calmed me down and said there's no use getting worked up over what could be nothing. She advised that I gather as much info as possible and consult with those in the know. So I think talking to my nurse and GI will be the best ideas. I just need to avoid freaking out till then. In the end, it is what it is. Freaking out won't change my condition- I just need to meet each challenge head on, and deal with things as they come. Crohn's sucks, but letting it turn me into a blubbering basket case will mean the terrorists have won. *cough* I mean, the disease will have won. *small attempt at a grin*
Well, my nurse advises me to monitor my pain and temperature and if either gets worse, to call my doc for an appointment. It also occured to me that this might be my 'regular' Crohn's disease flare up pain returning now that the Prednisone is leaving my system. Either way, I think a trip to the GI sooner rather than later to discuss my options is in order.
By the way folks, there's another witty Crohn's blog in town: http://jennisguts.blogspot.com/. Check it out. What is it about us Crohn's girls that drives us to write nutty posts about our bowels for the world to read? Haha. Hopefully though, our blogging is helping someone in some small way.
Thursday, September 25, 2008
Thursday, September 18, 2008
Actually, I was feeling agitated about all this enough last night that I went to the weekly meditation group meeting that I haven't been to in almost a year. It was nice to be surrounded by calm, content people. The woman who gave the initial talk also had a good point that was relevant to my current issues. She discussed the need to be objective when viewing our thoughts and emotions. To be able to SEE ourselves feeling bad, observe that, realize that "Hey, I'm really down today", accept that, let ourselves be down, but then let the emotion or negative thoughts pass. Don't cling to them. Don't hold on and throw yourself a pity party. So yeah, I'm blue today.... but tomorrow I'll be 'bright' yet again. In fact, I'm feeling a little sunnier already. Where's that vacuum?
Tuesday, September 16, 2008
For me, it was one of those occupations where I thought that I knew what it involved. Sure, nurses help patients and doctors. Simple. Or so I thought. If there's one thing I've learned in my two stays at the hospital, and my current use of home-care services… it's that nurses are awesome. They are heroes. The are the REAL caretakers of patients. If a doctor is the engineer of a skyscraper, nurses are the builders who get their hands dirty and do the real work.
For both of my stays I spent some time in the ER with the ER nurses, and then I was admitted and was under the care of the nurses assigned to my floor and wing. Two shifts- a night nurse and a day nurse. Then there were the nurses who came in for special reasons, like taking blood samples, and the nurses and technicians at the various test labs, like ultrasound, x-ray, etc.
Entirely across the board I was blown away with how hard these men and women work. How kind and patient they are. Being in a hospital is typically unpleasant, but they made it just a little more bearable. Nurses have to do the real dirty work. From bathing the woman in the bed next to me, and helping her use the toilet. To monitoring my bathroom outputs, and answering my endless questions about my IVs, drugs, bandages and more. Doctors may get all the glory (and they have my thanks as well) for pronouncing the diagnosis and prescribing the treatments, but it's the nurses who do the actual CARING for the patient.
My home-care nurses (one main nurse and a few who occasionally sub for her when it's her weekend) are equally kind. They are careful and precise, friendly and knowledgeable. In fact, I've grown quite fond of my primary home-care nurse.
I can't say thank-you enough. In fact, I'm always profuse in my thank-yous. I say please. I ask nicely. I say that I appreciate their help. I give compliments and ask about whether they enjoy their jobs. This in contrast to one woman in the bed next to mine during one of my stays who was outright rude and demanding. I was even told by one nurse who was wheeling me down the hall for yet another test, that she noticed that one nurse had written in my chart: “pleasant”. How sad that a pleasant patient is rare enough that the nurses make note of it.
Being sick sucks. Nothing will change that. But I ask all my readers to try and give a smile and a thank-you to the hard working nurses who are trying to help. I now know how much they deserve our appreciation, and I have a new found respect for the nursing profession. And to all the nurses who have taken care of me, what more can I say, but Thank You.
Saturday, September 13, 2008
My current regimen includes:
- Prednisone: a corticosteroid which reduces inflammation. It has all kinds of nasty side effects and I'm happy to be down to 10mg per day from my initial 4 weeks of 40mg per day. This is commonly the first thing that people are prescribed because it's powerful and effective.
- 5-ASA (5-Aminosalicylic): An anti-inflammatory which targets the intestines. A common treatment for Crohn's which has much fewer side effects. 1500mg twice per day.
- Iron (Ferrous Gluconate): My iron levels were low as of my last blood test. They must have been low for my whole life because I now feel more alert and less sensitive to the cold than I have in... as long as I can remember. 300mg twice per day.
- Multi-vitamin with Ester-C: Important to make sure I'm getting proper nutrition. The Ester-C is a non-acidic vitamin C which doesn't irritate my stomach. One per day.
- Calcium and Vitamin D: 1000mg per day. Prednisone leeches calcium out of your body so this is important. Plus I don't eat dairy, though I do drink fortified rice milk.
- Vitamin B12: Makes me feel much more energetic. My inflamed section of bowel is where this is normally absorbed. So I want to make sure I'm getting enough.
- Percocet (Oxycodone): As needed for pain. This leads me into the second part of this post... on not being a hero.
Not Being A Hero
There's one area in your life where you really shouldn't try to be a hero, and that's pain management. To understand where I'm coming from, let me explain that I was raised by parents who look upon any kind of medication as a last resort. I can take a single regular strength Tylenol and feel relief from a headache- that's how sensitive I am to it because I never take it. So, when I was prescribed Oxycodone for the pain of my Crohn's flare up, and later my surgery to drain an abscess... I was very reluctant to take it. My first experience with the pain meds they gave me - Tylenol 3s was that it caused constipation and just made me feel worse. And for some reason, in my head I felt that if I was taking medication for pain, somehow I was losing to the Crohn's or it was worse than it was. Like there was an invisible line that I was crossing by taking a pain pill.
Boy was I set straight. My boyfriend, family and friends all called me out on my nonsense. Even my home-care nurse looked at me dumbfounded when I told her, only a few days after my surgery, that I had only taken half of a pill in the last 24 hours. She looked at me all maternally and said "Dear, you just had surgery, take the pills so you can feel a little bit normal.".
So, I relented and when my pain was up, I took a pill and while it made me sing random songs... over all it had few side effects, and made me feel much better. Today, I'm pain pill free b/c my pain level is thankfully quite low.
So, my fellow sufferers, if you're at all like me- cut it out, and take the pain pill. You deserve to have whatever relief you can get.
Don't forget- only take medications as directed by your doctor!
Friday, September 12, 2008
• I've been working from home, but maintaining full time hours at the computer.
• My new Xbox makes it very easy to stay up half an hour later. Ok, more like an hour.
• I've had about 2 months of Prednisone induced insomnia.
• Now that the Prednisone is down to 10mg per day, I'm not getting the artificial energy that comes from it.
• I haven't been napping or sleeping any extra for the last 3 weeks to aid my body's recovery.
So, yeah, it's my own fault. A smart person would be getting some extra sleep to help her body recover. Sleep more silly girl! Ok, I am now vowing to start getting some more sleep. No one will make fun of me for going to bed at 9:30pm instead of 10:30pm right? Right!
Thursday, September 11, 2008
Ok, if you, dear reader are suffering from Crohn's, some other illness, or just dealing with one of the many possible sources of suffering in our lives, I have a project for you. Go grab a piece of paper and a pen. Yes, real paper, don't use your computer- having a physical result helps. Now, at the top write a title like "My Blessings", or "Good Things In My Life". Next, write the numbers 1 to 20 down the margin. Now, I want you to fill that list with all the bright sides in your life. Your blessings. I know you have at least 20. If you fill 20, add 5 more. Keep doing that till you just can't rack your brain for more. Fold up the list and carry it with you, it might take a few days to complete it, and it will change with time. The items can be big and serious, or small and light-hearted. To help you out, here are a few random items from my list of over 50:
- Parents that love and support me.
- An amazing super-hero, dragon-slaying husband.
- My beautiful baby boy.
- The most awesome group of friends.
- A close relationship with my siblings.
- Finally getting a diagnosis, and starting treatment.
- A country that is free, and has free health care.
- My intelligence and love of learning.
- My Xbox360. Who needs mobility to have fun! :)
- Being able to work from home as needed.
You get the idea. Now you can jazz up your list with some coloured pens, and keep it with you. When things get bad, and the weight of your illness feels like it's tainting your soul... whip out that list, and remind yourself that it's not ALL bad. In fact, there's a lot to be thankful for.
Now, I'm not saying to just count your blessings and it will ease your suffering; there's nothing I hate more than the "Don't worry, be happy" advice (which I get from a surprising number of people). But I do believe that we sometimes lose ourselves mentally in our symptoms, and we can add to the suffering of our illness. There are so many positive things in my life to think about.
I hope this helps at least one person. Then I could count that as a Bright Side of this blog! Post some of your own blessings in the comments below!
Wednesday, September 10, 2008
I'm packing on the carbs - bread, pasta and rice to help gain weight, and eating lots of protein to help aid in my wound healing process. But it's just not cutting it. I'm almost wondering what more I can do. Plus trying to eat at least some non-fiber rich vegetables each day. Luckily eating the foods I am currently eating does not cause me any discomfort, but it is hard to eat when stool is leaking out of a hole in your abdomen. Like some cartoon character that gets stabbed with a sword then drinks some water and it squirts out the hole. Ok, not exactly like that, but you get the idea. It's horrifying. Luckily that has improved greatly in the last week, so I'm trying to eat even more. But really, when your diet is limited to rather bland foods, it's quite challenging. I haven't put on any weight in 2 weeks. Not good. I'm going to have to ratchet it up a notch. Time to boil even more pasta... sure wish I could stomach fatty foods- I'd love something deep fried right about now. No such luck.
Anyway, my Crohn's saga (cue Star Wars music) began about two months ago, but prior to that I suffered for about 7 years under the un-diagnosis of IBS (Irritable Bowel Syndrome). Sometime in mid July I got what I thought was a flu. Fever, vomiting, felt horrible. I was barely keeping any food down, and watching my fever hit alarming new highs when I discovered a pain in my lower right abdomen, and a strange bump. Worried, I went into the hospital where I stayed for a few days and received all manner of tests including, the key diagnostic test- a colonoscopy (which by the way, wasn't so bad, I was unconscious the whole time). The on call GI doctor, who did the test, and asked me a bunch of questions about my 'IBS' history, informed me that I had Crohn's in a section of my small intestine. He couldn't get into it with the colonoscopy because it was so inflamed. He prescribed me 40mg of Prednisone once per day for 4 weeks, tapering off by 5 mg per week after that. The antibiotics given me at the hospital cured my fever, so they sent me home.
A few days later I was back in the hospital with sever pains... but I was given a new pain medication - Percocet - and told to give the Prednisone time, then sent home. Over the next couple weeks I started to feel slowly better and better. But by the middle of August the pain was getting quite bad, and I stared to notice a visible bump in my abdomen where the pain was. And I could feel something round and swollen in there. Then my fever started to rise and I noticed my heart rate was up. So it was back into the hospital for me.
Turns out that a perforation in my inflamed section of small bowel formed that when to the abdominal wall (skin). This is called a fistula. My body formed an abscess around it and that was the round ball. A big 'ole ball of pus. Lovely. My body was trying to wall off the hole and protect the rest of my body. I was told that it was about 5.5 cm in diameter and had to be drained. I was in agony.
An attempt to drain it via needle and ultrasound was a failure, it was infected and too thick to drain that way. A sample was sent for testing, and I was given lots more antibiotics, and told I would need surgery to drain it! My first surgery ever!
With the support of my wonderful boyfriend and my family... I went in for surgery and it was a pretty interesting experience. I was totally knocked out and woke up feeling sore and disorientated and my throat sore from the air tube. The next day I was given more anti-biotics and informed that I now had a bunch of gauze stuffed in a hole in my abdomen. This is to keep it open so that it heals from the inside out. I was sent home and they hooked me up with a home-care nursing service that now comes once a day to change the gauze packing, and my bandage.
My first day home was a big shock when I discovered (disclaimer- gross stuff coming up in this paragraph!) that there was not only blood, but stool coming out of my wound and leaking out the bandage. A call to the surgeon confirmed that this was normal, as the fistula was still there and it hard to heal those. The hope is that the leakage would get better and better. Gee- nice of them to warn me about this ahead of time. It was quite a shock, and really put a damper on my appetite. Not good, since I've lost 13 pounds, and need to gain it back.
It has now been about 3 weeks since the surgery. I was prescribed a new anti-inflammatory now that the Prednisone is almost tapered off (down to 10 mg this week!), called 5-ASA. I'm feeling pretty damn good. The pain is low, I'm eating. The bowels are moving regularly and solidly, and the wound appears to be healing and the leakage is getting less.
On the down side, it appears that the Prednisone is having horrifying side effects. Early on, when I was at the 40mg I was getting heart flutters and insomnia. Now those are gone but instead I've noticed my hair is thinning. It's frightening, and makes me even more sure that Prednisone is not as viable an option to me in the future. I'm just praying that the hair loss stops once the Prednisone is totally done, and that it comes back!! *cry*
Yesterday I had a different nurse fill in for my regular nurse (who I'm getting rather fond of and attached to- she so nice!). This new nurse is a wound care specialist and she said that gauze is like, so old school, and that she was going to pack me with a new product that contains silver in it and fights infection and encourages healing much better. It's called Silvercel. She said that with this stuff I'll only need a nurse every other day. She also said in 3 weeks I should have seen faster healing- so this will help. Today.... more than 24 hours later, I don't see the shadow of blood through the bandage like I have every other day, and didn't have to change the outer dressing myself. So maybe it has helped reduce the leakage. That would be great! I'm curious to see it when the nurse comes tomorrow.
So... that's my situation. My GI doc wants to send me for more tests once this wound has healed. And the 5-ASA is my medium-term treatment for now. It turns out I have some hardening of that section of bowel, so it may have to come out within a year or two. That's very scary! Thankfully, my boyfriend, family, and friends are all being so amazingly supportive. I couldn't do this without them!
Stay tuned... the saga continues...