Day 13 #NHBPM – Write about something taboo

Nov13

Poop, bum brownie, dookie, turd, water log, and the all time favorite, doodie. Have you guessed what I am going to talk about today?

When it comes to IBD, there is no shortage of taboo subjects. Pretty much everything surrounding the diseases are not pleasant to talk about, especially the acts surrounding the disease. No one talks about going to the bathroom, especially if you’re a woman. It is seen as an unattractive thing and most women will never touch the subject.

But what do you do when you life all of a sudden revolves around the bathroom. I think about the Humira commercial where you see this person walking in a circle always being near a bathroom. That is what Crohn’s and Colitis does to a person. Whether we like it or not, our bowls take over our lives.

No one really ever wants to talk about their poop. I agree it is disgusting and not something pleasant to talk about. But after you have had some bowel accidents you learn to live with it. It’s amazing that we are so obsessed with the food that goes into our mouths but once we swallow it, we forget all about it. The food gets digested and turns into that taboo subject.

So why are we so skittish to talk about dropping the kids off at the pool (one of my favorite sayings). I think it is because it is deemed a filthy and unclean act and we as humans want to be clean. We live in a society where we take daily showers and use hand sanitizers. When we eat things like lobster, we wear plastic bibs to keep us clean and use wet naps afterwards to clean our hands. Now I used this example because lobsters are considered unclean. They live at the bottom of the ocean and eat the poo of other animals. Have you ever wore a bib when you ate a salad or wiped your hands using a wet nap after eating a hamburger?

The thing with poo is that our IBD lives revolve around it whether we like it or not. For a lot of us, it is in the form a diarrhea. With diarrhea come urgency. People with IBD have little control over their sphincter muscle. When we have to go, we have at most one minute to get to a toilet. Many people don’t understand that. I have read so many stories that start off, “We were riding in the car and I said I have to go. My spouse said, I will pull over at the next exit” What that person doesn’t understand is that the next exit could be miles away. We don’t have that time. Now truly means now with us.

Lately I have been hearing more stories about people having accidents or going on the side of the road. More and more people with IBD are starting to open up on the subject. I love it because we are all in the same boat. I think we have all been there at one point. Talking about it gives us comfort to know we are still normal. It also helps take away the stress associated with it.

Another thing about poo, is that it can tell a lot about our health. Doctors can use it to find out if we have certain ailments or diseases. They can see what our body is digesting and what they aren’t. Now I am reminded of the song from Scrubs…and I will end it with the video and lyrics.

Everything Comes Down To Poo Lyrics – Scrubs

J.D.: Hey, Ms. Miller — we just need a stool sample
Patti: Why do you need a stool sample if you think I’m just a nut?
Turk & JD: ‘Cause the answer’s not in your head, my dear — it’s in your
butt!
J.D.: You see….
Everything comes down to poo!
From the top of your head, to the sole of your shoe
We can figure out what’s wrong with you by lookin’ at your poo!
Turk?
Turk: Do you have a hemorrhoid or is it rectal cancer?
When you flush your dookie down, you flush away the answer!
J.D.: It doesn’t really matter if it’s hard or if it’s loose
We’ll figure out what’s ailing you, as long as it’s a deuce!
Yes!
Everything comes down to poo!
Nurses: Everything comes down to poo!
J.D.: Cardiovascular and lymphatic, yes, the nervous system, too!

All across the nation, we trust in defecation!
Everything comes down to poo!
Turk: If you want to know what’s wrong, don’t sit and act so cool
Just be a man and eat some bran, and drop the kids off at the pool!
Robed Woman: My stomach hurts
J.D: Check the poo
Limping Woman: I sprained my ankle
Turk: Check the poo!
Bloody Shoulder Guy: I was shot!
J.D: Check the poo!
Delivery Guy: A homeless guy threw poo in my eye!
Turk: Check the poo!
Delivery Guy: Mine or his?
J.D: First him, then you!
It may sound gross, you may say “shush!”
J.D. & Turk: But we need to see what comes out of your tush!
Because!
All: Everything comes down to poo!
Whether it’s a tumor or a touch of the flu!
J.D. & Turk: Please, won’t you pinch us off a big, fat clue!
Turk: Our number one test is your Number Two!
All: If there’s no breeze, light a match please!
Everything comes down to —
J.D.: Doo-doo!
Turk: Doo-doo!
J.D.: Doo-doo!
Turk: Doo-doo!
All: Everything comes down to … poo!

Day 5 – Write a #ListOf3 Things that you’re thankful for / excited about / or inspired by

Nov5

For today’s post I had the choice to write about a Health Activist Soapbox or this…and I think a lot of people will choose the soapbox so I am going with this one.
List of 3 things. Oy. Where to start. I think of talking about 3 of one topic I will talk about one of each topic.

Topic 1 – What am I thankful for? Very strong question and with Thanksgiving just around the corner this is on my mind. I have gone through so much this past year and there is so much to be thankful for. The most recent thing is that I made it through hurricane Sandy without major issues. I can say I am still alive and in pretty good health. I have a job in times when unemployment is high. But my answer to this question…I am thankful for my doctor. First..if you haven’t yet, go read my previous blog on day 3……….ok, your back. Now you know where I am going. I am thankful for my GI doctor. So many patients have doctors that don’t listen and worst off don’t care. A lot of docs just seem to go through the motions and don’t seem real invested in your health. My doctor though is different. He listens. Not just to what I have to say but he listens to my advice. He doesn’t spew advice from medical books. Instead he bases his thoughts on current research. Recently I wanted off Humira and wanted to try out Low Dose Naltrexone. He had no experience with the med, knew nothing about it as a treatment for Crohn’s, yet he did his own research, listened to my concerns and decided to work with me on a solution to healing my Crohn’s. I don’t know if the medicine will help or even if I will be able to tolerate it long-term but my doc is letting me experiment with it and he is learning at the same time. He is great for all that he does and I can tell that if he takes the time to do research for me then he is doing it for other patients also. And for these reasons I am very thankful to have found him.

Topic 2 – What am I excited about? This up coming year I am excited for so much. First, instead of walking in the Take Steps walk I want to volunteer. I want to be able to give back some. Also, I am not great at fund-raising so this is my way of helping out my cause. I am excited to work at the walk and talk with others affected with IBD. But my excitement doesn’t end there. In 2013, for the first time, I want to volunteer my time at Camp Oasis. This is a camp that is held for a week in the summer for kids with IBD. Most of the staff and medical team have IBD and the kids can look up to them and see that there is hope to living a normal life. This is the reason I became a health activist. I grew up alone with my disease. This year I said to myself that I didn’t want anyone to have to go through what I did. I wanted to help people, especially the kids know that they are not alone. What better way to do this than to talk directly with them at Camp Oasis. I hear so many stories from people on how much fun it is working there. I want to finally experience this joy and if all goes well..I will. Just thinking about it now gets me excited.

Topic 3 – What has inspired you? For me it isn’t a what but who. Again, if you read my blogs, you probably know this answer already. So go ahead and look back over my previous blogs. If you don’t have time, just look at the guest post I did for WEGO Health. All the names are there. Sara, Kelly, Maggie, Charis, Jackie. These were just the first batch of people to truly inspire me to speak up and do what I now do. As time goes on, I have met other people and heard their stories. Now I have other people inspiring me….Alyssa, Pat, Amanda, Michael, Peter, Claire, and so many others. Now, I don’t want to put last names because I don’t know who wants their name out there..but if you run in the circles I run in, you probably know these names.

Day 3 #NHBPM – A Conversation with my Doctor

Nov3

Day 3 – I like this topic. I have talked about this one also but I would love to reshare it because it can give people hope.

About 3 months ago, I decided I wanted off Humira. I was getting really bad psoriasis on my legs and it was starting to spread to my stomach. I had had enough. I knew the conversation with my GI doc was going to be rough. First, I have been on pretty much every type of medicine out there so there wasn’t really anything left for me to try. Second…what doctor wants to hear that a patient is refusing their current treatment.

I did a lot of research beforehand on a new drug therapy and I decided that I wanted to try Low Dose Naltrexone or LDN. It has been gaining popularity within the IBD community for having great results with little to no side effects. That was what I needed because I seem to get all the side effects. The main problem though is that it is not a standard treatment for Crohn’s right now and is still considered experimental. I felt like I had tried all the conventional therapies so maybe it was time for something new. I printed out some information and a case study done on the drug and brought it with me to my appt.

Needless to say, the morning of my GI appt, I was very nervous. I didn’t know what my doc would say or think. He started out talking to me about how I am and then did his exam. Then we got down to brass tactics. I told him I was at the point where I need to control the psoriasis first rather than the CD so I wanted off Humira. Before he could talk me out of it, I went into suggesting LDN to him. He then told me he was familiar with the drug (as a low dose form) and he doesn’t currently have any patients on it and he has never used it. My heart sank. But…(wait, did he say but..) he would do some research into it and let me know within a week. I was shocked at this. I have never had a doctor say he would research something just for me. I think every doc should do this for every patient…I just never had it done before. All my past doctors were know it all docs who didn’t want to hear anything.

I was so excited. I was going off Humira, had a doctor that cared, and might get something that will really help me. A week went by…and I heard nothing. I knew my doc was going on vacation so I gave him another week. After 2 weeks, I messaged him and he told me that he would do it. YEAH!!!

When I went back to him about another 2 weeks later to get my script, we talked a little. Now I never gave him the information I had because I didn’t want to be pushy and scare him. When he said he would do the research, I knew he would find the same info. I however brought it with me again just in case. He did admit that this was all new to him and he wasn’t even sure just how much to prescribe. Thankfully I did my research and was able to help him with that. After I told him…he then says that the dosage matched what they used in the study. I think he really knew and was testing me to see if I really looked into the med. Gothcha doc 🙂 So we talked a little more about this and afterwards I got my script.

I walked out of his office head held high. I was in new territory now and was proud of myself for sticking to my guns. But what I learned from all of this is that you should never ever ever be afraid to talk to your doctor. I think your treatments should be a 2 way street. You should have as much say as your doctor. I have been very lucky to have found such a great, caring and resourceful doctor. He is open to suggestions and doesn’t think that he knows it all.

And that is my message to everyone. Talk to your doctor. Sometime they will be stubborn and when they get like that, insist some more. Don’t ever back down or give in. Remember, your body is your body…not theirs. You know your body best and how you react to things. Make your voice heard. And if your doctor won’t listen to you…find another one. They truly are a dime a dozen.

Goodbye Conventional, Hello Unconventional

Sep25

3 Weeks ago, my treatment for Crohn’s made a change. I took my last shot of Humira. That was my final attempt at a conventional treatment. Since 1988 I have been treating my Cronh’s with conventional medicine. I have run the gambit and tried every catagory of medicine there is with no luck. I have a mild case of Crohn’s and yet I still can’t get into remission. My gluten-free diet has helped but I am not 100% there yet. Humira was the last real medicine to try and that has now failed. So, it is time to get off the road and look for another route.

After doing some research I found that Low Dose Naltrexone (LDN) was being used as a treatment but as far as IBD is concerned, it is still experimental. There are a couple of small studies done and they all have looked promising. For anyone that doesn’t know what LDN is, Naltrexone is a medicine usually used in high doeses of 50 mg. It is used to block the feelings of opiates. Mainly, the drug is used to help people get off drugs. It blocks the feelings they get from the drugs so they can take something like heroin and not feel the effects from it. LDN is the same drug only in a low dose form..4.5 mg. LDN helps to boost the immune system and has been shown to help fight inflammation. No one is sure just yet how it is fighting the inflammation which is why it hasn’t been approved yet. More studies need to be done but a lot of doctors are now starting to get behind this drug.

One theory I have as to why this hasn’t been looked at widely yet is that it is an inexpensive drug. You can get a 30 days supply for $15 (without insurance). That means that no one is really making money off of it..so why would anyone reasearch it. There is no money to be made. A second theory which I just thought of yesterday is that a lot of the meds for IBD lower the immune system. On the whole, the scientific community has been looking at lowering the immune system to treat IBD. LDN raises and helps the immune system. This is going against what the scientist have been researching…so this would prove everyone wrong.

When I first talked to my GI, I mentioned going off of Humira to start LDN. He had never heard of LDN as a treatment and was hesitant. Yet, he wanted to do research on it. I gave him some time and about 3 weeks ago he told me that it was experimental but he would try it out. He has no other patients on the med so this is new ground for both of us. I am very happy that I have a GI that has an open mind and isn’t scared to try unconditional methods.

Yesterday, I got my script and was very happy. I was nervous to take the pill as I don’t know how I am going to react to it. The first couple of nights it is said it can cause insommnia and I did wake up at around 3:00 am and couldn’t fall back to sleep. This is suppose to go away after the body gets used to the drug and in fact it is suppose to help you sleep. I can’t wait until I get used to the drug. Overall, there are no side effects which is why I wanted to use this med. The worse that can happen is that it doesn’t work and I get a bad flare.

The only other major effect to this drug, is while I am on it, I can’t take opiate pain killers. This worries me in case I ever have to have emergency surgery but for my colonoscopies, I can just stoip taking it for a couple of days.

I know a lot of people don’t know too much about LDN so I am going to try to write about my experiences as they happen. So on day one, I am normal but tired. No sleep will do that. Day 2 will probably be the same. Wish me luck as I want the insommnia to pass fast and hopefully by the weekend I can sleep again.

Stay tuned for my journey down this new road. I am sure it will be a great adventure.

Inspiratation – Where do you find it?

Aug6

Recently, I watched a video from a fellow IBDer and she was talking about seeing other people do amazing things like running races and she was at a point in her life where she couldn’t do those things because of her fight with IBD. I wrote her a letter to help cheer her up and as I was writing it, I realized how much of an inspiration she really had been to me. She was one of the first people I watched on YouTube when I started flaring last year. She showed me that even though we have a chronic illness and it can affect us greatly at times….we should still live our lives.

When I wrote her, I also came to another realization. I have never had a mentor in my life. Whenever I had started a new job, so one ever took me under their wing. I never really had anyone I could say that I truly looked up to. But, she really changed my life and I always find myself looking at what she is doing and try to be a little like her or more specifically, try to be like her in helping people with IBD. To this end, she has kind of been like a mentor to me even though she didn’t know it.

Now, she isn’t the only one that has inspired me. There are so many people out there and if you look back over my blog, you will see who they are. Some of them I have written about. Others, I have included in my “Follow Friday’s”. There are so many great people out there advocating and giving me inspiration to get on with my life.

Recently, I have been starting to flare again and I felt some depression setting in. As usual, I started to withdraw within myself like I used to. But then I saw that video and wrote my online friend. I wrote her to cheer her up but it also was very therapeutic to me. I was able to get some things off my chest. Realizing how much of an inspiration she was in the past, helped to inspire me again. So, I am back fighting again.

Next week is a big part of the battle for me. I see my GI and I will be asking him to switch my meds from Humira to LDN. Since this isn’t a typical treatment for Crohn’s just yet, it will be a battle, but I am ready. If I let the depression sink in, I wouldn’t be able to have the conversation with my GI and argue it effectively. But thanks to my inspiration..I am going in guns blazing.

So, now I ask…..who are your inspiration. I would really love to hear back from you on who inspires you. Whether it is just to continue your fight with IBD, or someone who pushes you to blog, or helps you to get out and about with your life. Is your inspiration a person, a group of people, or a website?

I want to leave you with a quote I found online about inspiration:

“Inspiration is like picking up one of those blinky things in a video game that makes you invincible for a while. You can do anything, go anywhere, and you don’t have to worry about it.

Those blinky things exist in real life too. It may be a picture, or some words, or a sound, or an idea, or a mistake, or a moment. Whatever it is, pick it up and run with it. Run with it like you stole it.

You can’t bottle up inspiration. You can’t put it in a ziplock, toss it in the freezer, and fish it out later. It’s instantly perishable if you don’t eat it while it’s fresh.

Inspiration is a magical thing, a productivity multiplier, a motivator. But it won’t wait for you. Inspiration is a now thing. If it grabs you, grab it right back and put it to work.”

And just incase you are reading this and trying to figure out who my inspiration is…I wasn’t going to say because I don’t like to mention people’s names on here …but it is Sara from Inflamed and Untamed.