I Am the Boss of my Body

So its been a few weeks since I have updated my blog simply because the Crohns is extremely active right now and I have just been to exhausted.
But I have been reading a lot of message boards and online discussions about this disease and living with it, and I have to say, I am appalled at some of the incredible things people believe about their disease simply because a doctor told them or simply brushed them off.
Here's my thinking. Its MY body. I live with it, I wash it, I feed it (if I CAN eat), I rest it (sort of). I am in this body 24/7/365 and I have to deal with the effects of not just a disease process, but side effects from medication and the fabulous onset of peri-menopause. So I think, and believe strongly, that I am the one responsible for my body. So when someone, yes, even a doctor, tells me something, I research it. I want to KNOW, in grand, in depth detail, what I put in my body, what is happening with my body and what I can do to help heal my body.
I am amazed in this day and age of information that anyone would ever simply blindly take as gospel anything a doctor says. Don't get me wrong, I adore my doctor. He is amazing. He's intelligent, and caring, and excellent in his field. But when he says, lets try this ABC medication. I just don't say "okay". I ask what the effects are, what the rate of success has been, what interactions it has with other medications. I go online to trusted sites and read the information there, and I talk to other people who have taken that medication and ask what their experiences are.
And this goes to the idea of taking charge. One thing that a lot of people with chronic illness experience is a sense of lack of control. Their body is going haywire and they have no control. So TAKE control. Learn everything you can about your disease and your treatment. Be proactive. Be the boss of your body.
If I feel uncomfortable taking a medication I tell my doctor No. "GASP!!" Yes. I actually can tell my doctor No. Its MY body.
For example. We tried a medication called Imuran. Its a chemotherapy drug that has had some success as a treatment for Autoimmune diseases particularly Crohns and Ulcerative Colitis. Now, I was hesitant because as soon as I heard the words "chemotherapy" my warning bells began screaming and I think I even saw red lights flashing in my brain. But he assured me that he's used it with success and it was worth a try. We attempted 3 different times with 3 different doses and every time I ended up with serious infections. One time I even had M.R.S.A. in my FACE. So this last time, I started developing new infections on my hands and so I called him and said I am not taking this any more. The world didn't stop, no one called me a nut job, no men came and took me away. My doctor simply said okay. He recognizes that I will be the one to make the final decision about my care.
There is no excuse for ignorance especially with the one life we have and with the incredible amount of information available. Own your body. Own your disease. Be the boss of your body and your care.

Pain Pain Go Away....

So I had to call the doctor the other day to renew my pain medication prescription. I hate doing it because I can't help but feel like I am being judged.  I am extremely lucky in having a doctor who understands that I do have chronic daily pain and the medical need to control it.

 But not all doctors are that way and many folks like me, who deal with diseases like Crohns which are extremely painful, unfortunately suffer and only get relief when we get so bad we have to head into the emergency room and even then, we usually get treated with doubt about our level of pain. As if we are coming in only to get a fix of pain meds. Sadly, there are people who take advantage in order to get pain meds which in turn hurts those of us who genuinely need to get some pain relief.

In this society, its sad to think that because we take pain medication, many will automatically label us as addicts. 

Let me clarify a few things. 

I am in pain every single day of my life. Its real. Its horrible and it can be debilitating. Have you ever had one of those large, white ulcers in your mouth that no matter what you do, just hurts until it goes away? Well imagine those 100 times worse from one end of your digestive tract to the other. Open, weeping, bleeding, infected sores. Inside your body. Now, remember how it feels to have the flu? The body aches, the joint pain, the chills with the fever? The all over bone deep tired that no amount of sleep can fix? Well, take that and multiply it by 100 and there you have every day of my life.

Now. Tell me I don't need pain medication? Sure, I would really rather NOT take it. As it is, I take a very low dose of a non-addictive opiate that just takes the worst of the pain off so I can still function but doesn't give me total relief. See? I still feel the need to explain and justify myself even in my own blog!! 

Having pain every day, day after day, week after week, is damaging to your body, it effects the heart, the muscles, your blood pressure and your mental health. My doctor understands the need to treat the WHOLE body and mind. Along with my Crohns medications, and my pain medication, I take a anti-spasmodic for the gut, extreme doses of antacids, and anxiety meds because along with everything that happens to my body from this disease, it also effects my mind and my panic attacks became so bad I actually had what they called a "cardiac event". 

So, before you immediately roll your eyes, or judge someone who is on regular pain medication, know that for every real addict out there, there are also real people suffering real pain from real diseases. 

Why I Hate Diets

One of the biggest pet peeves I have found for a lot of us folks dealing with a bowel disease, is the assumption that diet is a key to the "cure". I understand that when people bring different diets and ways to eat healthy to my attention, they are doing it because they care and genuinely think they are helping. And that is very appreciated. BUT, the reality is that every single person who has Crohns or Ulcerative Colitis, has a different reaction to foods. There are no two of us alike. Because diet, what we eat, only effects our symptoms. It does nothing really for the disease process itself.
One thing everyone needs to understand...there. is. NO. cure. YET. I can guarantee that anyone you talk to who fights this has tried every possible diet configuration known to man, and some we make up for ourselves. I have even ate straight baby food and still wear a vitamin batch in the hopes of getting something good into my system.
If someone says to you, or you read in an advertisement, that a certain way of eating "cured" them of their disease. Frankly, its a huge, heaping, steaming load of bullshit. Again. there is NO cure. Bowel problems are one symptom of a much larger disease process. This is our immune system turning on us. Not our gut. It just happens to be right smack in the line of fire.
What we can do, and most of us have done, is keep a detailed journal of foods we eat, symptom we experience, our environment, our mood, what was happening at the moment. And we can usually quickly find things that are triggers for worsening symptoms. By learning from that and by taking very strong medications, we can sometimes achieve whats called remission. But for most of us that is a rarity. The best we can do is control the symptoms and hope for one good day at a time.
For example, when I am in a bad flair, anything I eat bothers me. A glass of water will cause the tell tale rumble and cramping pain. Literally. Water.
Some days I can eat tomato, some days they make me deathly ill. Dairy doesn't bother me even though many claim staying lactose free helps, processed foods destroy me, others live on canned soup. Gluten free does seem to help, but that is probably because a large part of the bowel has trouble with gluten in a healthy person. For someone who has short bowel, or ulcerations, or strictures, the irritation is multiplied. But that doesn't mean all of us do well on gluten free. I know someone who lives on wheat toast and raw oats.
So why does it bother us when someone says things like "have you tried (insert diet/appliance/supplement)?"
or "I read about someone who was cured by eating/not eating (insert food)..."?
It bothers us because it makes us feel like its assumed we haven't tried everything possible. That if we just did this one thing, we could be disease free. Do you not think that after 25+ years of battling this disease and 13 surgeries, I would do anything ANYTHING if I knew it would help?
Please consider your words when talking to someone with this problem. Because we struggle with things like just simply needing a shoulder to cry on, or a friend to NOT ask if they can help. Crazy I know. But sometimes we just want the disease to be ignored and to be treated like anyone else. I went to dinner with some friends last night. Everyone was very sincere in asking how I was feeling. Then we had dinner and not one person commented on what I was eating. We laughed, we joked and for a few hours I felt normal. That's what we need. Friends. Friends who trust that we are doing what we can to help ourselves and know we will ask for additional help if needed but who recognize that we simply want to make the most of every moment we can.

Who Could Ever Love Me and My Wonky Gut?

I belong to several support groups and one of the most common conversations is about relationships. Friends, Family or Romantic. Can we REALLY be loved with all the terrible things our bodies go through? Why do my friends all disappear after a while? What do I say and do with the people who shun me or try to offer advice?
I can say from years of experience, it is VERY possible to be loved. The tricky thing is that, when we are dealing with a chronic illness, particularly whats called an "invisible illness", meaning we don't always outwardly look sick, we have to realize and take into consideration that all those around us are effected. Your children, parents, partner, friends, co-workers. Everyone. And not everyone is supportive or understanding. And we have to be okay with that and let them go and move on. The reality is that our sickness can and does cut us off from the world on occasion. We have to cancel commitments at the last minute, take off work, not answer that phone call or email because we are so sick its all we can to do get through a day. Not everyone can cope with that.
I know personally, I have lost friends and even a husband because of dealing with Crohns Disease. My husband was cool with the good days, but not strong enough to deal with the bad. Yes, it hurt. It hurt a lot. I felt like I was less than, not worthy. then I realized something. I am NOT less. I am more. I am strong and I AM lovable. His loss. Not mine.
And honestly, nothing is better at weeding out the people who are toxic and showing us who are the ones we love and cherish for life, then times of adversity. One thing someone said to me once really resonated with me, "If they can't hang with you during the tough times, they don't deserve to hang with you in the good."
Harsh? Maybe. But life is harsh, no matter if you deal with illness or not.
Many people are well meaning, but don't really know what to say or do. And so many what to help or think what we are dealing with can be "fixed". A complaint a lot of "Crohnies" have is people who say things like "what about this diet?", or "maybe you need to sleep more?", or "but you don't LOOK sick?".Its so difficult to not take offense and immediately get our guard up. Remember, most people are genuinely interested in helping. So smile and thank them and maybe consider what they say. Or better yet, teach them about your disease. Yes, there are always those negative people who say snide remarks or doubt us, or that every present "one upper" who's been sicker than you and who ate only Kale for a week and is "cured". Let that crap roll right off your back. In the long run, do they really matter?
I am extremely fortunate in my life. I have family who love me and who are supportive in my health and life 100 percent. I have a small, tight group of friends who also understand and support me. And I have a partner who not only supports me but is my biggest cheerleader, confidant, sounding board and comfort. He is unfailing in having my back.
It's possible to have all that. I have found that the one thing that really counts is owning who you are. Trust in yourself, be confident, congratulate yourself every day for making it through that day. Moment by moment that we are breathing, and we are fighting and we are educating others, is a moment of success.

Welcome to my Blog!

Since a friend messaged me and suggested I start a blog, I have put a lot of thought into it. I tend to ramble uncontrollably in speech, so my fear is I would in type as well. But, frankly, its MY blog and I will ramble if I wish.
Most people who know me really well, know I battle Crohns Disease every day. I also have Rheumatoid Arthritis which is also no fun. But in my research I did discover that Auto Immune Diseases can, and most often do, come in multiples. Yay!! for my crappy immune system.
So I guess with the first attempt at blogging, I will give a bit of background while attempting not to go to far off course.
From a very early age I always had problems with belly troubles. I remember my Grandmother asking me if I had a "healthy BM" more than once. And while embarrassing as a child, its a discussion I am entirely too comfortable with now. My childhood was not an easy one, which is a story for another day, but I assumed it was why I spent hours in the bathroom it so much agony I literally pulled my hair out.
Fast forward to my teens....
When I was 18 almost 19, I was already married and expecting my first child. During my pregnancy I had problems with kidney infections and my OB/GYN decided to just put me on an antibiotic for the entire last three MONTHS of my pregnancy. Needless to say, bad bad bad idea. But as a young woman completely out of her element, I trusted the doc. Later we found out they had stripped the bacteria in the gut past the point of return.
Shortly after my daughter was born, I began having really serious issues. I couldn't eat without throwing up or having the worst diarrhea in the history of the world. I was back to rocking and crying in pain in the bathroom for literally hours at a time. The doctor originally diagnosed Ulcerative Colitis which is also a serious disease, and began treatment with steroids and sulfa drugs. I did respond for a few months and was doing slightly better. Then when my daughter was 5 months old, it flared back up with a vengeance much, much worse this time. I wish there was a way to explain the pain in a way that people understand. Its like something is burning and cutting and pulling and pushing your insides to the point where its hard to breathe.
I was breast feeding at the time, and due to being so ill and losing so much weight so quickly, my milk completely dried up within a few days. It was so bad, that when my daughter was in a walker, I tied a rope to it and to the leg of the couch so that I didn't have to stand up to chase her down. I had no energy and no strength. I literally crawled down the hallway to the bathroom because standing was more than my depleted body could tolerate. Eventually,right after her first birthday, I went to the bathroom...again in agony...only this time it was trouble. I was bleeding. And not just bleeding a little bit. I was hemorrhaging rapidly. My Mom called the doctors and we rushed in and I was immediately hospitalized. My colon had become necrotic, dead, and was breaking apart inside. The disease was winning. My blood counts continued to drop and the doctors called the family in. I had little chance of surviving surgery, but surgery was all that could save me. On my 20th birthday I went into surgery not expecting to come out again. I had to say goodbye to my husband of 2 years and my infant daughter. I was so sick at that point its more like a foggy dream than a reality. But I did survive surgery. I was in ICU several weeks. They were amazed at my ability to heal but I woke up with a life changing situation. I now had a 2 1/2 foot incision from sternum to pubic bone and a plastic bag stuck to my side. They had to remove the colon so I had an Ileostomy. It was a shock to say the least.  I had never heard anything but whispers and snide remarks about people with a "BAG" and was terrified. Pooping in a BAG stuck on my SIDE?! ugh!!! How could I be loved or wanted or feel like anything but a science experiment?! BUT, I had a choice. Pout and whine and cry or deal with it. I chose to DEAL with it. I had nurses who taught me a lot. I sewed little fabric covers for the bags so I didn't sweat under the plastic on my skin. I wore clothes that masked it. And very few people even knew. It was hard though because I KNEW.
But I wasn't sick anymore. no more pain, no more living in the bathroom, and I could EAT AGAIN! Oh boy. That was not a good thing. I ended up gaining a lot of weight. 6 months after my surgery I was pregnant with my second child and had a perfectly wonderfully uneventful pregnancy and delivery. Even with a bag on my side.
This is not to say it was easy. I still had body issues, I worried people would KNOW (like it was some kind of horrifying thing) and I went into a pretty hard depression that lasted for several years. I was allergic to all the adhesives that the bag and its appliance used to hold it on and eventually I ended up with painfully raw and infected skin around the stoma, which is the opening that comes through the abdominal wall. I stopped being able to really go out because the bag would fall off at the most random moments, which if you are in the grocery store with two young children and you suddenly feel something running down your leg, that is horrifying. Truly truly incredibly horrifying.
I was told I would need another surgery to remove the remainder of my colon and the bag would be permanent and I almost lost it. I was so ready to crawl in a hole and just disappear. But then I found out about a surgery called B.C.I.R. (see bcir.com) which is basically an internal collection pouch made out of your small intestine and you use a catheter a few times a day to empty. No bag. No leaks. No expense. I was SO IN!!
In 1996 I traveled to St Louis and had the surgery that completely changed my life. I can't even explain the immense weight that lifted off after I had this surgery. I was out. In PUBLIC! Amazing. It was a difficult surgery. No lie. Another full on sternum to pubic bone incision along with one that went from the top of my butt crack all the way around to my female bits. AND several small inch to 2 inch incisions for drains all up and down my sides. But. NO BAG!
Fast forward several years. I began having some serious health issues again in 2001. unable to eat, pain, vomiting etc. The doctors thought gallbladder. So I had that out. Pretty uneventful surgery except because of my surgical history, they did a full incision instead of the laproscopic ones. 3 days after surgery I woke up in the worst pain ever and violent vomiting. Back to the hospital. This time it was determined I had serious scar tissue blocking off my stomach and small intestine and ended up in yet another serious, major surgery and stint in ICU. They weren't really sure WHY I had such serious scarring. But for the next few years, the intestinal issues continued and I began having joint pain, swelling, unexplained fevers, fatigue so bad it was all I could do to drag myself out of bed some days.
Eventually things got so bad I had several hospitalizations for dehydration, pain management etc. Had to go to tons and tons of specialists. At the time Crohns was suggested but never really defined as a specific diagnosis.  I did get a definite diagnosis of RA though. Which is an entirely separate problem.
Eventually the Doctor I have now said definitively that I have Crohns Disease. Dealing with this is not easy. This is not a "pooping" disease. This is my body's immune system attacking itself. Along with the gut issues, which include horrible pain, embarrassing LOUD grumbling and nausea and vomiting, come severe joint problems, skin irritations, fatigue from not being able to absorb the nutrients the body needs to function, weight fluctuations, swelling, fevers, circulation problems...and it goes on and on. This is a life long battle.
I have had people say I am so positive and upbeat despite it and ask how I do that. Trust me, I have horrible days. I have days I want to disappear from the world. Days I want to scream and cry and wail. But honestly, what does that do? Even if I feel horrible, and I do almost every single day, if I get out and stay busy and smile at people who smile back, I feel good about that. I feel alive and strong and in control. This disease will not...WILL NOT...destroy my life.