Misunderstood

Sometimes it's hard to deal with an unseen disease. What I mean is that from the outside, I don't really look sick, I'm not in a wheel chair or I don't have a cast on any of my limbs. If one would look close enough, they would notice that I often look tired, but that is the only real indication that I am sick. While I may look healthy on the outside, I feel horrible on the inside. I don't think people understand when I make excuses to stay home and not participate because they don't know I am sick. And telling them I am sick is just as frustrating because I don't want to have to explain my illness. I'm not one to whine and complain to people, except to my husband or close family members. I don't think it's anyone's business. But then I feel like people think I'm weird. And then I believe that I am weird. Do I shy away from having to socialize because I am sick or is it because I hate to socialize? After a while, I don't know.

I wonder if other people with a chronic illness feel the same way—misunderstood.

Cheers and good health!

Colitis Chick

My mad colon

Technorati Tags: ulcerative colitis,chronic diseases,coping with colitis

Playing Football with Colitis?

Can a person really play football when they have ulcerative colitis? I'm posing this question because I needed one of my doctors to fill out my jury duty excuse form and I was completely caught by surprise by something he said. Since I had an appointment already set up with my doctor that treats me for colitis, I had him fill out the form. He said that he didn't think that ulcerative colitis would be a good enough excuse to get me out of jury duty because there are guys that can play football with the disease. Wow, really? First of all, I would rather play football then go to jury duty. Who wouldn't? But I have to know if this is something that is common because I sure don't think I could play football with colitis, but then maybe I'm a lot sicker than most people get with this disease because I also have a secondary complication that may or may not be related to the colitis. I'm beginning to wonder if I am an oddball though. I have to wonder if these 'guys' are young because that would make sense. Someone in their twenty's would probably be in better overall health than someone in their forty's. It probably also depends on whether there is a secondary condition present like in my case.

I don't think my doctor was being sarcastic, but I don't know. He filled out the form for me. After I left the doctor's office, it had me wondering though if he thinks like my dad. My dad believes in 'walking it off' when you are sick or hurt. And then I felt like maybe I am being a baby as far as my illness goes. Maybe I should toughen it out. I think maybe I over think things too much and this probably doesn't help me stay healthy. I shouldn't care what other people think. Everyone is different when it comes to how they handle an illness. There are some people that are really sick and can still maintain an active lifestyle. I guess I'm not one of those people and maybe I just need to accept it. I have already tried to keep doing everything I used to do and when I do that I end up feeling sicker because I over did it. I think it's about knowing your body and knowing what you can and can't do. And not what other people think you should do. I just need to remember that.

If there is one perk from having a chronic illness, it’s being able to get out of jury duty. At least I hope so.

Cheers and good health!

Colitis Chick

My mad colon

Technorati Tags: ulcerative colitis,football,coping with colitis,jury duty excuses

Colitis is a Systemic Disease

Apparently, I am a medical anomaly. I have a case of ulcerative colitis, but of course, it can't be a normal case. My colitis affects other areas of my body: mainly my lower back joints. I also have chronic pain all over my body that may or may not have to do with colitis. Who knows? My doctors certainly don't know. From the beginning they were scratching their heads when I ended up in the emergency room with severe back and leg pain, symptoms that pointed to a herniated disc, but that made no sense because I had not been involved in any accidents or falls.

The back pain had been building for weeks and not responding to any anti-inflammatory meds and then I started to have an electric shock down my backside and leg that indicated sciatica. Then one day the pain got much worse and I couldn't lift my arms. My leg pain was so bad I wanted to chop my leg off. Not kidding. I had also been having pelvic pain on and off and flu-like symptoms, including a strange itchy rash on my back. Whatever kind of flare up I had it was really bad, bad enough to make me unable to walk or do anything for about six months. I couldn't feel most of my right leg—it either hurt like hell or it felt like my leg was asleep. When doctors finally got around to doing any blood tests whatever caused the flare was long gone except for a bladder infection. I was diagnosed with reactive arthritis or Reiter’s Syndrome even though I didn’t have some of the main symptoms for Reiter’s. It's obvious that there had to be something else present to cause such a flare—a virus maybe or colitis? This happened in 2000. I wasn't diagnosed with colitis until 2007, but I had been suffering from chronic pain, back pain (Sacroiliitis) and fatigue all those years. Doctors back then kept asking me if I had any diarrhea, but I hadn't. I did, however, complain of constipation.

I recently read something about colitis and how sometimes it presents as constipation. So have I had colitis all that time, but didn't have the 'normal' symptoms until much later? It's possible. My doctors now think there is a connection.

I also found out that colitis is a systemic disease and can affect areas outside the colon, including the mouth (ulcers), eye inflammations, Musculoskeletal complications like Seronegative arthritis which can affect one or two large joints or smaller joints like hands and feet, Ankylosing spondylitis—arthritis of the spine, Sacroiliitis—arthritis of the lower spine, Cutaneous (relating to the skin) inflammation of subcutaneous tissue involving lower extremities and Pyoderma Gangrenosum—painful skin lesion, Deep venous thrombosis and pulmonary embolism, Autoimmune hemolytic anemia, Clubbing—deformity of ends of fingers and Inflammation of the bile ducts.

http://health.learninginfo.org/ulcerative-colitis.htm

Anyone else have any weird medical stories to share? There's so much that doctors still don't understand about the body and disease. The human body is truly mysterious.

Cheers and good health!

Colitis Chick

My mad colon

Technorati Tags: ulcerative colitis,reactive arthritis,reiter's syndrome,systemic colitis,sacroiliitis,constipation,chronic diseases,inflammatory bowel disease,self help,health issues

Technorati Tags: systemic diseases

To Eat or Not to Eat

This is one of the most important decisions when dealing with ulcerative colitis because eating the wrong foods can really suck. Lately I was wondering if it was normal to feel as if I was trying to pass a boulder every time I had a bowel movement. It got to the point where I was afraid to eat. Then I had a big DUH moment doing a search on fiber and how it affects people with colitis. I learned that there are two kinds of fiber. Never knew that. Soluble fiber is good for colitis; insoluble fiber is very bad for people with colitis. All along I had been eating whole wheat because I thought it was good for me, but guess what? It's an insoluble fiber. No wonder I was having so many problems. Since making some adjustments to my diet, things have been better, but not ideal. I suppose having colitis means that things will never be ideal, but it's better than trying to pass a boulder. Believe me.

This site has a list of soluble fibers: http://www.helpforibs.com/diet/fiber1.asp

Having colitis means having to experiment and see which foods work and which foods cause pain, bloating, diarrhea and/or bleeding. Some of the most common offenders for colitis sufferers are dairy products, greasy foods, sugar, raw onions, raw vegetables and red meat. Those are the worst foods for me to eat.

I discovered that Ginger Ale is something I can't live without. It soothes my upset tummy and I drink it every day. White crackers are another food that I can eat and know that it won't make me sick. I call it my comfort food. Some of my favorite soluble fibers are any rice-based foods, bananas, avocados, flour tortillas, pasta and baked potatoes.

It might take some painful experimenting to find the foods that make having colitis a little bit easier to deal with, but it's worth the effort. Just watch out for that nasty insoluble fiber.

Cheers and good health!

Colitis Chick

My mad colon

Dating, Sex and Colitis

Dating, sex and colitis—three words that you don't usually see together. There are ways, though, to make a date or a love session go smoothly. I like to think that anything is possible by following a few simple guidelines.

I consider myself lucky because when I was diagnosed with ulcerative colitis, I had been married for about ten years so we were well past the embarrassment stage. Everyone with colitis knows all about explosive diarrhea, and if they don't, they learn about it pretty quickly. It's one of the reasons why I don't leave my house during a flare. And if I were dating someone, I would probably stay away until I had it under control. I think it depends on where you are in the relationship. The first date is probably not the time to reveal a chronic illness and it would be wise to eat foods that don't have you running to the bathroom before that first date. If you are at that later stage where you can do things in front of each other without being embarrassed then it's probably okay to be around your mate during a flare.

I think it's much more embarrassing for a woman to be the one with colitis. I mean, men always make loud noises in the bathroom and it never seems to embarrass them, but women are not supposed to do anything that might make them less ladylike. As a woman with colitis this seems unfair to me, but sometimes it helps the embarrassing situation to laugh and maybe make a joke about it. If your date has a terrible sense of humor, you probably don't want to date her/him anyway. Some other things to do to try and mask the sound in the bathroom are to run water, cough or flush the toilet at the right time. Or pray that the bathroom fan is loud enough.

Now, sex could be a different matter because having embarrassing noises and/or other messy incidents might ruin the whole romantic love fest. How come they don't show real life things like this on the Lifetime channel movies? Romance is always so perfect on television and in the movies when in real life, it's anything but perfect. Personally, I wouldn't have sex when I am having a bad flare. First of all, I don't feel well at all when I'm in a flare and certainly don't feel sexy. Again, this depends on the stage of the relationship and whether your mate is squeamish. A couple of things to do to make it a pleasant experience are to avoid eating or drinking anything before the tryst and to put a towel down. This also might be the time for tender sex rather than the ride 'em hard kind of lovemaking. Just a thought. I think in these kinds of situations, humor is the best way to deal with it.

Cheers and good health!

Colitis Chick

My Mad Colon