Wednesday, June 1, 2011

The Average Joe's Guide--Part B

I know it's really late to be posting on my blog. I probably look ridiculous. But I've had really bad pain tonight and I just can't go to sleep. I've tried painkillers, heating pads, hot soup, a hot bath, but nothing is helping. So I thought I'd start writing a little and then post in the morning--well, here's what came of it:

So for today we're going to go over ulcerative colitis. I've only known that I've had this disease for a little over 6 weeks. I'm not sure how long I've had it--I've had the problems for a long time, but can only remember when I stopped ignoring them, not when they actually started. But I've had less time to intensely research it like I have endometriosis. Being the nerdy scientist type, I can't help but learn everything I can about my body, what's working and what's not working. Not in a hypochondriac crazy way but in a "I can't possibly find out more stuff about all this crazy stuff" kind of way. I can't express how fascinating it is to figure out what's going on in my body. To help explain all these bizarre happenings that have just wreaked havoc with my body and caused more pain and disruption than I ever ever imagined! Well, I've been conducting my research with ulcerative colitis, and I might not know as much about it as I do endometriosis, but here's what I do know.

Ulcerative Colitis is one of the two major types of inflammatory bowel disease (the other type being Crohn's). Sometimes this disease is confused with irritable bowel disease, which has some similar but much less severe features. As my GI doc once agreed, IBD eats IBS for breakfast. Ulcerative colitis is an inflammatory bowel disease of the inner lining of the large intestines and rectum. It causes inflammation, reddening, and ulcerations (holes in the lining). This causes excessive and often painful bowel movements, diarrhea, mucus and blood in the stools, and lots of pain. It's associated with inflammatory problems in other parts of the body as well and low grade fevers. Not to mention weight loss. Ulcerative colitis ranges from mild, moderate, severe, to fulminant. (BTW, I have moderate ulcerative colitis--totally treatable but still sucky. I'll post pictures when I'm less lazy!). The symptoms wax and wane based on whether it's a dormant period or flare up of the disease (flare up meaning more inflammation/holes and thus more symptoms).

Treatment for ulcerative colitis is aimed at treating the inflammation in the GI tract. This is done with medications that work sort of like ointment for wounds on the outside of your body. I currently take 7 of these types of pills every morning. And during flare ups, which is when the symptoms are disrupting your 'normal' life, you take lots of prednisone--a steroid that operates as an anti-inflammatory. I used to have to take a ton of it, but am now off of it, yey! Signs that indicate degree of a flare up and need for extensive or mild treatment is based on… bum da da duuummmm! BMs. How many, how solid, how painful, how much blood--fun fun stuff. When you're at 10 a day, that's when it's bad. 4-6 a day is better. 2 a day and you're golden. IF your body can't respond to the medication, or if you get colon cancer, which is more likely with this disease, then you have to have your colon removed. It's the last thing you can do for your body in response to the disease--luckily, I'm not there.

Surprisingly, even though ulcerative colitis is an autoimmune disease that attacks the lining of the GI tract, flare ups are not caused much by what you eat. Of course this can vary for individuals, but for most, diet is not much of a factor during periods of dormancy. However, during a flare up, you have to be careful not to eat things that irritate your already inflamed colon. For example, I'm a little lactose intolerant, which wouldn't be a problem, but the reactions of my body to lactose cause a ton a pain during my flare ups. Also, heavy fats (i.e. saturated and trans) make my symptoms worse, because it's hard to digest. I knew things like butter or ice cream made me feel sick--I wouldn't want to eat heavy foods because they gave me digestive problems. But everyone just made fun of me and said I was scared of getting fat. I'm glad I listened to my body and just let people continue to make fun of me. Pretty much, for now, I keep a food journal and eat what my body wants.

Ulcerative colitis and Crohn's disease affect about 0.1% of Americans. Not common, but not rare either. People discover they have Ulcerative Colitis at either ages 15-25 or 50-60--two common 'age blocks' for flare ups to first start. I started having problems a few years ago. But onset is gradual, and I honestly didn't start having more serious problems till this past year. I honestly thought I just had IBS. And even though I ate 3,000-4,000 calories a day, and was still losing weight, none of my doctors were concerned (they just kept asking if I was anorexic, which got really frustrating) so I again called myself a hypochondriac. The extreme bouts of pain I had, digestive problems, lack of nutrients in my blood--it was something to be dealt with and ignored.

After my diagnosis, I started learning a lot of people around me had some form of IBD. Well, ok, not a lot, but the fact that I wasn't completely alone was reassuring. I even was going to attend a support group (but the night of their meeting I had a bad pain flare up and couldn't leave the house). But the point is people have this. People we all know--and they continue to live their lives and deal with it. It doesn't mean that they don't struggle with it or that their lives weren't made unnecessarily more complicated by it. It sucks. It really does. The pain and symptoms are really bad at times. Cry all day on the toilet bad sometimes. But l can keep living my life with it. If I keep taking my medications, watch my diet, get routine check ups to keep a vigilant eye out for cancer cells, I will be okay.


  1. GIRL! I just read all this and dang!!! I'm so sorry for what you're going through and wish I could just come hang out with you and talk or play cards or something to help keep your mind off just pain sometimes! You're awesome and so strong and I hope you get feeling better asap!!! And get your toosch down to Utah! Love you and miss you! The other Ash (Ashley Russell) ;)

  2. Thanks Ashley, you are super sweet, I wish we could hang out too! We still have more harry potter musical to watch ha ha. It probably looks like a lot to read it... okay, it feels like a lot ha ha, but you know what, I am actually managing. Not in the super strong way though, just in the 'not ready to lie down and whine about it' way ha ha. I love you and miss you too, I am bummed that we just started spending time together and then my body gave out. Well I will be SO much healthier when I come back, you won't even recognize me :)


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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.