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Tag Archives: inflammatory bowel disease
The Health Activist’s Writers Month Challenge – Day 9 Caregiving
Patients, what advice or tips do you have for caregivers out there – professional or otherwise!
This is a good topic. It is so good that it is a repeat of one I did last year. So, I will pretty much repeat what I said in that post. Also, keep in mind that I am focusing on caregiving to someone with IBD.
First, and this is one of the most important things a caregiver needs to remember, is that the person they are taking care of has the disease, not the caregiver. The patient is most likely scared because they have an incurable illness. What they need most of all is love, affection and some sympathy. They are probably in constant pain and they might not ever feel “normal” again. It is your job to help them get back to normal as best as THEY can.
Second, listen to your patient. Don’t ever assume you know what they are going through or what they are feeling. If they say they have pain, believe them. Sometimes they may seem alright, but mos of the time there is pain within their gut. Think about how you feel when you have a sunburn. Well, Crohn’s is like a sunburn on the inside of the intestines and it is constantly being touched.
Next, don’t try to force feed them. An appetite is a tricky thing for someone with IBD. One day they can be nauseous and not want to eat. Other days, they will want to pig out. Some of this is caused by the disease, some of it caused by the meds. Also, they are going to find that there are a bunch of foods that don’t agree with them. If they want to try a specific diet, let them. If they say they can’t eat a certain food….believe them. Don’t try to make them eat something because it is healthy. Not everything healthy is good for someone with IBD.
Your patient is not going to like the medications that they are on. If they are taking Prednisone, there is a good chance that they will get some depression. You should know right now, they will gain weight. Their face will swell up and this is called a “Moon Face”. Just let them know that it is normal, they are still beautiful and handsome, and that it is temporary. One day they will come off the steroid and their weight will come down. Now, sometimes if they are in a flare, they might lose weight. Try to give them some supplemental foods like Ensure to help maintain their weight. Don’t ever mention how skinny they look. They know they are losing weight and don’t want to be reminded of it.
My last advice I can give is never ever ever say they are sick. They have a chronic illness that will be with them their whole life. They know how they feel and they want to try to look and act normal. To them, it is something that is now part of their life. To them, being sick is like catching a cold or a flu. Having IBD doesn’t mean your life ends…so why should they think they are sick. Treat them as you would treat anyone else. Play with them. Talk with them. Give them hugs and kisses. Let them know that their life will move along and that they have nothing to be ashamed of.
And if ever you have a question, don’t be afraid to ask. Ask a doctor. Ask the person you are giving care to. You can ask me. There is also a huge community or people with their condition online. Turn on your computer and look for them. They will accept you and your patient into their family with no questions asked.
You are now about to embark on a great journey. Enjoy the ride.
The Health Activist’s Writers Month Challenge – Day 8 Animals
If your health condition (or the health condition of a loved one!) was an animal, what would it be? Is it a real animal or make believe?
If my condition was an animal, it would have to be a grizzly bear. Looking at him from afar and it looks so cute and cuddly. It minds its own business and goes along its day having fun and enjoying life.
Grizzly bears are looked at to be carnivores but are really omnivores. My crohn’s is the same. I look like I eat tons of meat but the truth is that my crohn’s like to feed a variety of foods including fruits and veggies.
Grizzly bears have become iconic to the point that we buy little “Teddy Bears” that tend to represent them. When you see pictures of these bears, you just want to hug and cuddle them and that is how my CD is. Most of the time you just want to give it a nice hug.
But when a grizzly get’s mad, look out. To protect their young, they will stand tall with outstretched arms and give out a roar. They will do all they can to scare you and that is just how my Crohn’s is. On the bad days, I will feel like I am dying. My disease will make noises and it will feel like it is standing up inside me trying to rip itself free from my body.
Now, since I want to focus on the cuteness of it all, here are some pictures of one of my favorite animals.
The Health Activist’s Writers Month Challenge – Day 7 Sensationalize!
Share a ludicrous headline or cure. Do a news search and choose a ridiculous headline or proposed cure about your condition and write what you think about it. Can’t find one? Write your own.
Bone-marrow transplant cures girl’s inflammatory bowel disease – http://www.theglobeandmail.com/life/health-and-fitness/health/bone-marrow-transplant-cures-girls-inflammatory-bowel-disease/article6177105/
This article I found online from The Globe and Mail which is a site based in Toronto Canada. To quickly sum up the article, a 4-year-old girl was suffering from numerous health issues, with IBD symptoms being one of the problem. Doctors say she had some form of IBD, but didn’t respond to any treatment. After doing some test they found that she had a rare mutation of her interleukin 10 receptor which is the body’s off switch for inflammation. The way to cure this problem was to do a bone marrow transplant. When they did this, they found that she was cured of her IBD problem.
Now, I don’t say this isn’t a true story. I am sure this little girl is real, was suffering, and is now a lot healthier. I am happy for that. But there are things about this article that I have to hold at length. First, the doctors say she had some sort of IBD but it seems like they don’t know what she had. My question is why not. I know we often get misdiagnosed, but the problem is usually a UC diagnosis that changes to CD. This girl didn’t even get that. So, I question did she really have a IBD problem or was it more of a body inflammation problem.
My second concern is that only 20 patients have had this procedure done. For me, that is to little of a group to start saying that this is a cure. For all we know, this little girl could just be in remission. But again, if the doctors don’t know what she has, how can they say she is cured.
Now I know there are more sensational articles and blogs out there. I chose this one because even though I question some of it…I think that there may be some truth to this and possible a real cure there. I guess I want to believe that there is real hope for a cure for IBD. Bone marrow transplants have become pretty common and I can only hope that one day we get it as a treatment and cure for IBD. The future right now looks a little brighter.
The Health Activist Writer’s Month Challange – Day 6 Letters
Write a letter to your condition – what do you want to get off your chest?
Dear Crohn’s;
We have known each other for about 25 years now. We have had some good days and we have had some bad days. We have laughed together and we have cried. Well, this letter is to put you on notice.
I have learned a lot since the early days. I remember when we were first introduced to each other. It was at L.I.J. hospital and I was just a scared teenager. I thought I was going to be sick forever and then the doctor told me about you. After bothering me for the next 2 years, we called a truce and you left me alone for my college years. I was very thankful for that. What I didn’t like was that you never told me about yourself. You remained a mystery to me and I never really got to know you.
Flash forward many years to the year 2010. For some time now we were reintroduced and you have given me trouble, but I had learned to live with you. Then tragedy struck. Your cousin, Ulcerative Colitis, was very cruel and took my father in law from us. This hurt me very deeply. To add to the hurt, you decided to start causing trouble. For 2011, there was nothing but pain and despair with you. You were nothing but cruel to me. I wanted you gone once and for all.
Little did I know that the pain you were causing would help change my life. When you gave me my darkest days in January 2012, I would see my life change. Your cruelty would cause so much joy in my life. Something awoke inside of me and I decided to finally learn about you. I did my research and while doing that I got to meet some of the greatest people in the world. Not only do they live with your relatives, but they would be some of the most inspirational people I would get to know. They would show me that you don’t run my life but I do. No matter how hard you try to cause me problems, I would no longer let you.
These people you forced me to meet, and I am thankful for that, would give me the strength to fight back. They would show me that the foods you wanted me to eat were not good for me and my health, so I would change. I know you don’t like me being gluten-free because you won’t survive. Sorry, but I have to look after my health.
I know you loved all the meds I was taking because they didn’t seem to hurt you, only me. So once again, I am not sorry that you don’t like the naltrexone that I am taking. Those people you force me to meet, well they told me that this drug would be great for me and would maybe help you make the decision to move out. Sorry, I have to listen to them. You have stayed here for too long.
I know have learned what you are. I have learned that I don’t have to let you run my life. So I am putting you on notice. I know you will never leave me, but you have to leave me alone. I will not take any of your “crap” anymore.
Health Activist Writer’s Month Challenge – Day 5 Aspiration
“If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue. What is your biggest goal that is now possible?
This is a good topic because it helps me to put out there just what I want to do as far as my activism. My goal when I started was to help out others that were in my position, which is growing up alone. I wanted to let people know that they aren’t alone out there with their disease. For years, because I was alone, I kind of ignored my disease. Now that I know there is a huge community out there, I have owned up to it.
So if the sky was the limit and I could do anything I wanted….first I would create a charity (which I am slowly working to do). The main purpose of the charity would not be to find a cure. It wouldn’t be to unite people with IBD. There are so many other charities that do these things. My goal is education. I want to help bring information about IBD to both patients and the general public. I don’t want to say too much about my dreams as I am trying to make all this happen.
Right now, when someone gets diagnosed, the doctor briefly explains what the patient has and then leaves. He might have some handouts that will also briefly describe the condition. After that, the patient is on their own to do the research and seek out help. That is where I would come in. I want to have a way where that person can turn to the charity and have all the info they want right at their fingertips. The info wouldn’t just be of the informative nature. The charity would also help him connect with others both online and in real life with other IBDers. It will help them find doctors in their area. Basically it will be the go to be all for IBD.
Now, I know I can dream big. Reality is so much harder. I have been going at this alone and it isn’t easy. So I am going to use this post as a call. If you are reading this, and you want to get involved and be part of this great movement, let me know. The more help I can get, the faster this dream can be a reality.
Gluten Free Beef Stew
It’s been awhile since I said I would post recipes so, here is another gluten-free recipe which is pretty IBD friendly..or at least for some IBDers.
Being that the temperature has been in the 20’s and I have been freezing my butt off lately, I wanted something that would be satisfying and warm me up. I was getting tired of my usual weekly menu and needed a change. When I was online one day, I saw a recipe for beef stew for a crock pot and I thought, I don’t have a crock pot but I can still make the stew. So, I went out shopping, got the ingredients, and made way to much stew. But is was so worth it because it was soooo good. And the cold will be around for a while so I have meals for another day.
Now, for the recipe, I didn’t measure out anything and it made about 8 servings. This is a dish that exact measurements aren’t needed and you can add whatever you want.
Ingredients:
- 1 1/2 lb cubed steak
- 3 Carrots – peeled and rough chopped
- 6 Celery Stalks – rough chopped
- 1 Parsnip – peeled and rough chopped
- 2 Large Potatoes – peeled and rough chopped
- 1 Onion – peeled and rough chopped (pearl onions work well also and require no prep)
- 1/2 Frozen Peas
- 64 oz Beef Broth
- 2 cans Diced Tomatoes
- Olive oil
- Gluten Free Flour or Corn Starch
Take your steak and coat in either the corn starch or flour. I decided to use flour just out of personal preference. Heat oil in a large stock pot and sear off meat. You don’t want to cook the meat all the way through, just brown it. You are sear it to seal in the juices. Also, you can do this in batches if the pot isn’t large enough.
After the meat is browned and removed from pot, add onions and more oil if needed. Saute the onions until soft and translucent. If you are using pearl onions, do not do this step. They will be added at the end.
When the onions are done, add some flour to make a roux. Cook this for a couple of minutes until the roux starts to brown. Add carrots, celery, parsnip, potatoes, beef, and stock. Stir well. Add any seasoning you like. They can be fresh or dried. I added some basil, oregano and salt. Again this is to your preference. Bring the stew to a boil.
When it boils, reduce heat to a simmer, cover and let cook for about 1 1/2 hours. When the stew is done, add the canned tomatoes and peas. If you are using pearl onions, add them also. Bring back to a boil and remove from heat. If the stew is still thin and not to your desired thickness, make a cornstarch slurry to add to it to thicken it up. Serve with some nice crusty bread.
I Have Reached My Boiling Point
Yesterday I came across an article. It started because I was wondering how voting for the Restroom Access Act, aka Ally’s Law, went in Virginia. I looked it up online. I was appalled at what I had found. The act was defeated without a single vote cast. That means that every politician that had the right to vote on it agreed that it wasn’t worth their time to even discuss. I was outraged by this but was soon about to get even more pissed off.
Continuing my research I found and editorial written for a Virginian newspaper. It was written by Kerry Dougherty and can be found here. Please go read it. I will wait until you finish reading it.
…
So you finished it. I can see how red your face is. I guess she made you as mad as I have been for the past 18 hours. How can someone be so ignorant not only to people with IBD but to me it seems like she is against anyone with a disability.
But lets break down some of what she had to say. First, she writes, “And it marked the death of one more over-the-top, well-meaning measure cooked up by a Northern Virginia Democrat. Another bill that would have attempted to legislate common sense.” – First, does it matter if the person introducing the bill is a Democrat or Republican. What just because a Democrat introduces something it is immediately bad? Next, a bill that would attempted to legislate common sense. Yes, it is common sense and yet it is ignored. Why do we have to fight to use the bathroom. IT IS COMMON SENSE and yet people will still not let you use their bathrooms so yes we should have a law.
“The impetus was an Alexandria teenager who was diagnosed with Crohn’s disease about two years ago. After being barred from the employee-only bathroom in several retail stores, he told his mom he wanted a state law that would make it illegal to turn away someone with a legit medical condition.” Man, this just shows the author didn’t do her homework. HE TOLD HIS MOM—-Ally is a woman, not a man. I have spoken with her and she is amazing. Follow Ally here on Twitter. See, she is a woman.
“If only adults or civics teachers would teach kids that there are better ways to fix problems.” – Um, Ally found a problem and is fighting for the government to back her in her fight against injustice. What better way is there to fix the problem? I would love the author to suggest just one way.
Lastly, the author goes on to tell a story of how she was in a nail salon one day. A woman came in to the place, looking like she was in an emergency and asked to use the bathroom. Afterwards it turns out she stole some wallets. So, now everyone with IBD is being compared to thieves and criminals. None of us can be trusted. WOW!
I have seen a lot of prejudice in my life. I have seen discrimination. I have seen bigotry. This editorial takes the cake though. Just weeks ago the CCFA launched a campaign which so many of us agreed was way to light. It showed that we mainly use the bathroom and that there are no other problems. Maybe if they had used a more aggressive campaign, Kerry would have a better understanding of what we go through every day of our lives. I won’t get into it as that is a whole other post. But Kerry’s ignorance shows the need for more awareness. IBD is still mostly unknown. People think we are making up our symptoms.
Shame on you Kerry. Shame shame shame.
Such a Loving Community I Live In
Last night I went online to check my email and saw I had a mention in Twitter. I shot over to Twitter to see @Caringforcrohns nominated me for a Reality Blog Award. I didn’t know what this was until I read about it, and I have to say that I am honored by it. It just shows how much love there is in our IBD community.
Of course there is a guideline to the award. You have to answer 5 questions which I am more than happy to do.
1. If you could change one thing what would you change? If I could change one thing, it would be teaching doctors how to relate to patients. A lot of doctors don’t actually listen to their patients and treat them based on how they were taught. Many are unwilling to use non-traditional treatments or won’t use the newest methods because they don’t know about it. Doctors need to listen to us, the patients, and if we want to try something, they should learn more about it and support us. Support will ease our minds and this will help the healing process.
2. If you could repeat any age, what would it be? This is hard because I have learned not to dwell in the past. But if I really have to choose, I would be 18 again. I would love to be young and redo my college years. They were care free days where my Crohn’s didn’t bother me that much. I learned so much about my self that I would love to rediscover it all again.
3. What one thing really scares you? One thing that scares me is my lack of good reactions to meds. I don’t react well to almost all the Crohn’s meds out there so there really isn’t much for me to take. If I fail on my current med, LDN, there is nothing for me to try next. That means my Crohn’s can get worse and put me in a hospital. That really scares me. But I have to stay positive and right now, I am doing well. There is no reason to believe this won’t last.
4. What is one dream you have not completed, and do you think you’ll be able to complete it? One of my dreams is to open my own restaurant. Right now, being gluten-free, I notice it is hard to eat out and I would love to open a completely GF restaurant. I don’t know if I will ever get to do it. The one thing that stands in my way is the money. I need an income and don’t have the money to open my own place. It is something I would have to work out…but maybe one day.
5. If you could be someone else for one day, who would it be? Honestly, there is no one I would want to be. I love being who I am and would not change it for the world. I think everyone should like who they are and strive to be the best they can be. Never give up on yourself.
So, enough about me. Now the real fun is here. I get to nominate some other people for the award. Here are my nominations in no particular order:
Alyssa from Love For Mutant Guts – http://loveformutantguts.wordpress.com/ No matter what is going on in her life, she will tell it to you straight. She doesn’t hold back and will even post the most unflattering pictures just to show you what this disease can do to a person. To me that takes guts and no matter how much of them she is missing, she has tons of them.
Sara from Inflamed and Untamed – http://www.inflamed-and-untamed.com/ Sara is probably the most recognized face of IBD. Everyone knows her and has watched her video. But most important is that Sara is inspirational. She has gone through so much and still manages to hold her head high. She manages to lift the spirits of so many people.
Kelly from http://sickgirldiary.tumblr.com/ – What can I say about Kelly. She is so young and has gone through so much. She is yet another inspirational woman who despite all the pain she is in, she manages to give out inspiration to so many people. She maintains her videos and website despite all that she is going through. Anyone that knows her knows that she has a love for life that she will never give up on and I am honored to call her a friend.
Amanda from http://stopthinkingstartwriting.blogspot.com/ – Amanda is one of those people who has been sick for years yet can’t seem to get a diagnosis. She has been in a ball in the corner of the room on the floor with no hope. But a light went on in her and she now has nothing but inspiration for people. Even without a diagnosis, she keeps moving through life and doesn’t let her pain stop her.
Julie from http://www.semicolongirl.com/ – Julie is such an inspiration. Despite have a disease and despite having half a colon, she is still out there being active. She runs a lot and just got involved with the CCFA Team Challenge run in Vegas. She shows everyone that an illness shouldn’t slow you down no matter what.
For the nominees – here are the guidelines in accepting the award.
- Visit and thank the blogger who nominated you.
- Acknowledge that blogger on your blog and link back to them.
- Answer the 5 questions presented.
- Nominate up to 20 blogs for the award and notify them on their blogs.
- Copy and paste the award on your blog somewhere.
So, finally, I want to thank Caring for Crohns again for the lovely nomination. I am loving the love I have found in our community this year and I hope that this next year brings out even more from us.
Day19 #NHBPM – Life & Death
I think everyone thinks about their life and how they live. When you’re a kid you are carefree. You run around playing all the time thinking you are immortal and nothing can hurt you. As you get older, you learn to appreciate life and when you have a family you get insurance.
Growing up with IBD really makes you appreciate life even more. When all your friends are in school or outside playing, a lot of times we are in bed with pain. When kids get together to have a pizza party we are sipping tasteless broth. We look at ourselves in a mirror and ask why. Why can’t I have a normal life..and we start to really appreciate what we do have. After awhile we learn that even though we are sick, we are alive. After you have lived some years with the disease, you see that you can live and start to want to do things. We have all been there. We look at what we haven’t done and think, what can I do to enjoy life. Maybe it is taking up jogging since you can stay local and near bathrooms. For others, maybe it is skydiving for charity. But we learn that just because we have a disease, it doesn’t have to end our lives.
Over time we learn to live with our pains and drug side effects. We know there will be hospital visits and stays in our life. We know there are days we won’t get out of bed…or the bathroom. But we also know we have a life to live and we try to live it to it fullest capacity.
When I was 15, I got sick and was in bed for a week. After I got diagnosed, I went back to school and tried to live a normal life. Within half a year, I got pneumonia and that put me in a horrible flare. I stopped going to school. I never saw my friends. My life was staying in bed watching TV (this is before cable). It was watching certain shows that made me realize I was wasting my life. I found a new hobby while I was sick. I started to love cooking and I was watching a number of cooking and food shows. I then started to realize that if I stayed in bed I would never amount to anything.
So, my parents got me some teachers that would come to my home to teach me. I caught up on my schoolwork and eventually graduated. I wanted to live life again so I decided to chance it and go away to college. I wanted the full experience and yes, I did get it. I decided that I wasn’t going to let my Crohn’s run my life. I got my education and degrees. I met some great people and eventually also me my wife.
Over the years I would have some Crohn’s related issues, but I would always think back to my bed ridden days and vow to continue living life. I would not ever let my disease get to me.
And then my life changed. My father in law lived with Ulcerative Colitis for years. He had it so bad that he had to have his intestines removed and lived with an ostomy for a number of years. I saw life in him. He had numerous problems because of the bag but he always chose to fight on and live. And then his and my world crashed. He was in and out of the hospital with an unknown problem. Eventually it affected his heart too much and he passed away from a heart attack. His ostomy caused him to have electrolyte problems which eventually caused a lot of problems for him.
I say my world crashed because he was an inspiration to me. He always tried to stay positive with his situation and I could only wish to be half a man if I was ever in his situation. During his funeral, his friends would talk about how he was always full of life and had such a drive.
Part of me never grieved for him. I never had the chance. My wife and mother in law were devastated and I had to stay strong for them. I was hurting on the inside but could never show it. As the days went on, it was harder to show my feeling. Here it is a year and half later and I still have the pain. It still is deep in me and I don’t know how to release it. Not only do I hurt because I lost a great father in law, but I hurt to know that one day I can be in that same situation.
Medicine has not helped me over the past 24 years. I am on the last medicine available and even this is experimental for Crohn’s. I know I have a mild case but if I fail on meds and have to eventually go off all meds, my Crohn’s will get worse. Where will that lead me. Will I need surgery? Will I have to have my colon removed? Will I be like my father in law and end up with tons of problems?
No one likes facing their mortality. As I kid I did a lot of dumb things. Now, with my 40th birthday creeping up to me, I look to what I have left in my life. I know that I won’t live forever. My question is how will I live it though. Will I spend each day thinking will this be the day my medicine stops working? Or will I live it like it is my last and have a blast. Right now I take it one day at a time. I try to enjoy the time I have here. I do what I can and try to help who I can in the moment. If I am here tomorrow, then I will continue on. But unlike when I was 6, I know I have an expiration date. Hopefully, it won’t be for another 50 years as I still have a lot to do with my life.
A Guy With Crohn's 