Tuesday, May 31, 2011

The Average Joe's Guide--Part A

What is endometriosis? or ulcerative colitis? Pretty much everyone knows what asthma is--so many people have it that I admit that unless I'm sick, I don't feel like a special sick case. I take my meds, watch my peak flow, and am pretty much OK (unless I'm living in Utah, where the air quality has been killing me--living there has been horrible for my health). Allergies are hard, I have to keep my living space super clean, and the attacks can be scary but other than that, it's not that bad. It's manageable. I can still be healthy with it.

But the other two? Those aren't so simple. And less common--especially together. Others still deal with them. But they're both such spectrum diseases, and the fact that they coexist in the same area makes them ridiculously tricky. And if you don't know what they are even separately--well, here's my explanation. I'm studying neuropsychology, which means I've got a fair college background with anatomy and biology, and I hope with that headstart I can write my understanding of the disease down clear and concise. But I'm afraid I can't explain them without somewhat interlacing my experiences and feelings. Hope that's ok :).

First, for today, endometriosis--here is a basic explanation. Warning, this is a female disease of the uterus--I've given the least detailed/graphic description possible, but if 'lady parts' gross you out, then don't read it. It's a scientific explanation though, a basic one too.

It's estimated that up to 10% of women have this disease--which is significant, considering how unknown the disease is. It's become increasingly common the past couple decades, due to better diagnosing techniques and (suspected) effects of environmental toxic dumping of chemicals and additive hormones in foods. We're poisoning ourselves! But what is it?

This is a disease where tissue, much like the kind that periodically lines the inside of the uterus, grows outside the uterus. These cells start growing in small colonies (implants) all sorts of places, such as the outside of the uterus, fallopian tubes, ovaries, intestines, rectum, bladder, pevlic lining--pretty much anywhere in the abdominal cavity it can migrate (depending on how aggressive it is). From these small initial colonies, these cells can grow into larger implants, that can cause scar tissue, huge masses and/or adhesions that stick organs to one another. Meaning the uterus could be stuck to the intestines by these endometrial tissue adhesions (scar tissue bridges between the two). Theories that explain endometriosis range (as it is still not understood) but according to my doctor, the most current notable theory argues that normally the immune system can clean up stray endometrial cells, but in those with endometriosis, something has caused a failure in the clean up. This would explain why it more frequently co-occurs with other autoimmune diseases.

The primary problems with this disease are wild hormones, pain, and infertility.
The exact cause and effect nature of hormonal disruption for this disease is complicated. The endometrial implants release hormones into your body, the worst of which are pro-inflammatory and increase an already painful situation. Mood swings are intense and women with endometriosis are more likely to struggle with intermittent depression. Menstural cycles are insane--(somewhat graphic warning for the next sentence if you're male ha ha)--by 'heavy and long mensturation' I suppose they are referring to my 3-5 week periods and the fact that no normal birth control has managed to stop them.
The pain is awful. Cramps are so bad that leaving bed is not always an option. They overwhelm my nerves and walking around is sometimes impossible because I am cramped up from my chest down to my ankles. All my muscles and intestines knot up and I'm embarassed to say how much I cry at times from pain. Even aside from cramping, when it's other times of the 'month', pain is still an issue. Abdominal and back pain is chronic. And with the severe scar tissue problems I've been having, I have screamingly bad pain in my lower right abdominal quadrant that requires me to pretty much live on oxycodone. For the past 2 1/2 months. The more I move around, the worse the pain gets. Certain foods make the pain worse. Stress makes the pain worse. The chemicals the endometrial implants shed irritate my organs. And the pulls and tugs of these adhesions hurt my body so much. Hurt hurt hurt, pain pain pain, I feel like that's my life.
The last primary problem is a bit sensitive to talk about. Endometriosis can cause infertility, but it doesn't always cause it. No one knows if the disease has made or will make them infertile until they start trying to have children. Sometimes having children can greatly relieve symptoms. But I'm 22, not married, and not interested in starting having children until I'm 28-30. So that's not an option.

Endometriosis is currently impossible to cure. Treatment options include pain management, hormone therapy, and surgery. Surgery becomes necessary when scar tissue and implants have become severe enough to interfere with normal life. Also, scar tissue and hormone problems of endometrisosis increase rates of ovarian cysts, especially large ones, and sometimes surgical removal of them is necessary. If they rupture, it's incredibly painful and can be life threatening. When surgery isn't yet an option, pain management is carried out, with anti-inflammatories like advil and occasionally narcotic pain killers. Hormone therapy is preventative and long term. It's meant to stop or at least moderate the growth and perioidic shedding of the endometrial It can involve, for more simple cases, simply taking low dose birth control 3 weeks out of the month. Some involve hormonal implants. For severe cases, and what I'll likely end up doing, doctors administer shots of a drug called lupron, which induces temporary menopause. It causes the endometrial tissue to shrink up and die, and when you go on birth control after, it can keep it from growing back. So they remove the scar tissue with surgery, control the growth afterwards with hormones, and maybe I'll have a normal life again.

That's my explanation of endometriosis--I'll do ulcerative colitis tomorrow, that's a lot to write!

Monday, May 30, 2011

What it means to be sick

I have felt so trapped in bed and my body these past couple months, especially this past week, that I felt like there had to be something I could do to escape. I won't go over the hundreds of things I have tried (and many I still do) to maintain my sanity. I'm proud that I've already filled up half a journal, taken up sewing again, and started writing in my book again. I'm not proud that I'm in too much pain to do yoga, that going out to lunch with friends is overexerting myself, and that I've spent thousands of hours watching movies and playing the Sims. But I am trying stuff, and this is another thing to try. Talking about the pain and frustration I feel with these illnesses is too hard for me, and I struggle with asking for help or sharing what I'm going through. I can't bear when people pull away right in front of me or the absence of compassion where I can see it. I wish I was stronger, but honestly all my energy goes into overcoming these problems inside of me. So I figured I could blog, put some of these feelings out there for family, loved ones, friends to see, and form their own reactions and opinions without risking hurting my feelings. May sound pathetic, but it's the truth, and for any of those who have experienced the isolation, pain, and frustration of chronic illness, you know what I mean.

Where to start? What to say for a first post? Perhaps that deep down, I knew something was wrong for a long time. But I had an intense belief that I was a hypochondriac and often, almost always, ignored or at least belittled strong warning signs that something was not working in my body. I would take care of small little things and pretend those were the big problems of my life. I remember when my Mum had to convince me to go to the hospital the first time I had a severe asthma attack. And the only reason my chronic appendicitis was discovered was because of the 7 cm cyst next to it. Or how my shoulder surgery wasn't scheduled until I lost control over two of my fingers in my left hand. I just have never been able to trust warning signs from my body. Increasing fatigue and pain over the past several years was brushed off. It's so difficult to admit that something may be wrong, that you can't stop severe illness, that even if you live healthy, exercise and eat right, your body may still have issues.

Well, last year I was finally diagnosed with endometriosis. It had gone rogue, tissue growing in places and causing pain where it never should, and it explained so many things. But all that was given was a VERY temporary fix and, surprise surprise, things came back again. For the past several months I often had to stay home from school, work, social engagements and church because I could barely get out of bed. I kept waiting for some doctor to fix me, but it didn't happen. I was battling something that required more attention than a once a month check up, but here I was still thinking I was some hypochondriac that had brought this on herself. That if i stopped being such a baby, the pain would shrink back. Because it wasn't really that bad.

In mid-march, I started having such awful pains that leaving bed for anything but school became impossible. I began living on percocet and attended the doctor's office and ER more than my classes. Worst part was, my doctor's were incompetent and uncaring. They distrusted my reports of pain and would not listen to my symptoms. My parents were going wild with frustration and started to find their own doctor, in Portland. One day, April 13th, I couldn't get out of bed. I was sobbing from pain and defeat, in front of my roommates even, not caring how embarrassing and childish it was, and called my parents. I flew home that night (wheeled to and from the gates because I could barely walk through security). Dropped out of school, a week before finals, threw my life plan out the window, to get the medical treatment I desperately needed.

With all the severe symptoms I was having, the doctor (one who finally KNEW what he was doing!) wanted to prep for surgery immediately, and follow up with aggressive hormone therapy. He had strong evidence to believe the endometrial tissue had grown through my intestinal wall and that I may even need parts of my colon extracted and resectioned. To prepare for this possibility, I was sent to GI specialist for an urgent colonoscopy that week.

Waking up from the procedure, I couldn't believe what I was hearing. There were ulcers in my colon. No there weren't. I have endometriosis. But there were ulcers in my colon. Yes, I have endometriosis, but I also have either ulcerative colitis or Crohn's disease. That's what the doctor said. I waited for him to leave the room and then I hunched over and cried. I wasn't coming in to get another diagnosis, I was looking for help for the disease I was already incapable of coping with. I felt so blindsided and overwhelmed, I couldn't stand it. It explained some of the pain I'd dealt with, severe digestive issues, not to mention losing 20 pounds and being unable to gain any back, but I didn't care, I couldn't handle any more bad news. When my mum showed up to pick me up, the GI explained to her what medications they'd start to get the inflammation down, but that no surgery for endometriosis could be done until the the inflammation in my intestinal tract was controlled. There were too many risks for death or complications, it would have to wait.

Ulcerative Colitis and Endometriosis. Two inflammatory autoimmune diseases that wreak havoc in the abdominal cavity that have been making my life hell for who knows how long. They've kept me in bed for two months now. They're keeping me in bed now. I had to withdraw from another semester and have just been waiting for surgery to be granted. I've had enough pain, nausea, tests, complications and delays to last me a lifetime. But it's only been a couple months and it's not going away. I'm trying to adjust my life, my attitudes, my beliefs and behavior to these problems--admit that they're there and take care of myself. It's a work in process.

Maybe this is a bit depressing for the first post. But this is where I started too. Hopeless and miserable and faced with problems you don't expect when you're 22 years old. I miss my old life so badly. I miss hockey, running, biking, yoga, singing, acting, performing, research, school, volunteering, succeeding in life, doing worthwhile things that made differences in my life and those around me. I miss not being in pain all the time, not feeling isolated by the circumstances that have separated me from my peers. But rather than just sulk in my misery, I've done whatever I can to help me reach a state of normalcy. I still have really bad days. But I have some okay and some good ones too.

This experience has changed me and physically, mentally, emotionally and spiritually, and I'm certain, for better or worse, I will never be the same. And I want to share as much of that journey as I can (and feel comfortable sharing of course) with those who might care to know.

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About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.

Thank you for stopping by, I wish you strength in your health, struggles, and happiness.