Monday, September 28, 2009

Have a heart

This article from the Associated Press demonstrates why it is scary for people with UC to travel. I could see something like this happening to me. I wonder if I would be as bold to run past the flight attendant to get the bathroom or if I would just stand there and mess myself.

They should make special considerations for people with UC. The same as the do for people in wheel chairs. There should be private medical bathrooms on airplanes only for those with medical conditions with those people being seated nearby. And the process for planes taking off should be expedited. I know I have sat ON an airplane for 45 minutes just waiting for it to take off. This article has upset me a bit. I feel bad for the man that was kicked off his flight and probably humiliated. I thought about writing a note to United Airline, but couldn't think of what to say. After all they were just following security procedures, which I support, but still... It's tough enough for those of us that urgently have to use the bathroom. What would you say to United?

Putting my fears aside though, I have planned a vacation for next month. I feel my health right now is well enough that with a little extra care I could travel and enjoy myself. I am looking forward to it.

Wednesday, September 23, 2009


Everyone with UC needs validation. This is a cute little movie!

Sunday, September 20, 2009

Set me free, why don't cha babe

Set me free, why don't cha babe
Get out my life, why don't cha babe
'Cause you don't really love me
You just keep me hangin' on
You don't really need me
But you keep me hangin' on

That's the first verse to Diana Ross's "You Keep Me Hangin' On". I certainly don't love UC, but sometimes I wonder if I am "hangin' on" to it. Today I'm wondering if I get a subconscious payoff from being sick and in some twisted weird way I like being sick. No, I DON'T like to be sick. But...thinking really hard about it, here are some reasons I could see why someone might subconsciously hold on to an illness:

  1. If I don't measure up or if I grow up to be nothing, or worse a failure, it's not really my fault. It is because of the UC. Anything I am unable to achieve I can always blame on not feeling well.
  2. I get some attention for being sick. It makes me unique from other people and grants me sympathy from those that know.
  3. If there is something I don't want to do, I can always say that I'm not feeling well because of my UC. It allows me to avoid responsibilities.
  4. I always have a good excuse to procrastinate. Those goals that I set can wait indefinitely until the day that I am well.
  5. Puts my loved ones in a care giver role and myself in a dependant position.
  6. Allows me to be a cautious observer of life instead of an active participant.
  7. If I do something wrong or say something hurtful, it was beyond my control because I wasn't feeling well.
  8. I can blame the other people in my life for not doing enough/not loving me enough, causing me to be ill.

These were all the things I could think of for a subconscious mind to cause a person to stay ill. Can you think of others? Most of these I really don't think apply to my situation. I could maybe possibly see #1, 3, and 4 applying to my life, but not the others. To my subconscious mind: I don't want UC anymore.

HEALTH UPDATE: I am feeling quite a bit better. I feel like remission is right around the corner. It's been three months since I started back on the medicine. Currently I am still having moderate symptoms in the morning and the rest of the day is fine. (Okay, maybe a bit more gassy than the average person). I honestly think I could live the rest of my life in this condition and be completely happy even though I am not completely well. I can manage being sick in the mornings, it just makes the rest of the day sunnier.

Oh, and my husband replaced the tire I ruined that I wrote about in my last post. Actually, he said he had to get a new set because the wear on the tire wouldn't be the same as on the other side. So, more costly. But from that experience I have learned that I should trust myself more.

Friday, September 18, 2009

The great art of life is sensation, to feel that we exist, even in pain. --Lord Byron

Recently I had a flat tire on my car. I was driving it at the time and didn't realize it was flat and kept driving for quite a while (ruined the tire). In case you are wondering (like my poor husband), yes, something didn't feel right. I did think something was wrong, but I am one of those paranoid people that frequently feel like the car doesn't feel right. I have pulled over countless times to "check" the car only to see nothing wrong. So I didn't pull over to check until I reached my destination a few miles away. (I really am a good driver! Please don't think ill of me from this lapse in judgment!)

Besides the strange noise and bumpy ride, there was another clue. The other drivers all had this blank look on their face. I passed a jogger and he had it too. It's the face you get when you know something is wrong but you don't have time to react. It's kind of a wide-eyed, mouth ajar, staring look.

But this is my UC blog, so what does this experience have to do with it? Well, on occasion I have found myself in a public place when the urgent need to find a bathroom presents itself. It doesn't matter where I am or what I am doing, once I get the feeling, finding a bathroom is the only thing I can concentrate on. Very quickly, I go into a state of shock and then panic and then survival mode. When I saw those other drivers with their shocked faces it made me wonder if that's how I look when I urgently have to go. What do you think? Is there such a thing as the "UC Urgent Need Face"?

Wednesday, September 16, 2009

The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.

I've been feeling really great lately. Not normal yet, but manageable. Talked with my doctor yesterday and we are going to try to slowly decrease my dosage. That's good news. Mornings are still hard for me but other than that I feel completely fine. Mornings have always been the worse for me, not sure why, but that's the main reason I am always late for things. But feeling so well lately, I even dared go with my husband on Saturday to a big car show. He was entering his car in it and really wanted me to come. I was nervous because it is outdoors, without bathrooms. And while they do have a few port-a-potties, they almost always have long lines. But I went and I was fine and I almost forgot I had any issues at all. That's what I really want--to be so well that it's not even something I think about. To be able to go somewhere without first finding where the nearest bathroom is. Or having to think about what I'm eating. To be free to live my life.

Now that normalcy is on the horizon I want to work on gaining back some of the weight I've lost. I was quite content with the weight I was before. With the weight loss, I look tired almost always and my skin has lost it's luster. You might think that gaining weight would be the easy, maybe even fun, part. But this needs to be handled delicately because, remember, I have a sensitive digestive system. What that means is that I can't overdo it on any foods or I could get sicker. Moderation in all things! I don't want to undo the progress I've made, so I'm going to avoid the things that aggravate my UC:
  1. Movie theater popcorn -- Maybe it's because I am allergic to corn, but anytime I've eaten this, even just a handful, I've become extremely ill. Popcorn at home doesn't seem to be a problem as long as I don't eat too much.
  2. Greasy foods (Pizza, hamburgers, french fries, fried anything)
  3. Sweets
  4. Spicy foods
  5. Not getting enough sleep
  7. Getting too hot
  8. My food allergies (corn, wheat, and soy)

I'm lucky because with the exception of the first item I can have a little bit of all these things and still be alright. The key is balance. I can handle a bit of stress or being out in the sun. I can eat my lovely sweets and spicy foods. I just need to be a bit aware of what I am exposing myself to and making sure I am not putting my body under extra stress.

Friday, September 11, 2009

Pill Popping On The Weekend and Positive Results

For some reason I always seem to run out of pills right before the weekend. When you take ten pills a day it is hard to anticipate when you are about to run out. I look in the bottle and say, "Oh, there's a lot of pills in there. I'm good." Then, two days later there is just one sad lonely pill. (By the way, if any of you are on Asacol there is a $25 off coupon on their website that you can use once a month through December.) I called the automated system to refill and sent my hubby in to pick it up. Only there was a problem. He couldn't get the medicine. See last month I was only taking 5 pills a day but then my doctor increased it to ten a day. Only he didn't tell my insurance company and they won't let me get a refill for another month. Must be trying to prevent me from selling them on the black market. Probably a high demand for the butt pills. Don't worry said the drug store. We'll call your doctor and get this all sorted out. But it's Friday. If you were a doctor, would you work on Fridays? Well, apparently mine doesn't. Which means it can't get sorted out until Monday. I'm still in a flare-up right now and really don't want to make it worse by missing doses.

Luckily, the pharmacist had pity on me and gave my husband enough pills to get me through the weekend. Pills without paying, huh... My criminal mind was spinning. How many pharmacies are in this town... Don't worry, I'm a virtuous person.

Other news: Reading these positive thought posts on some of your blogs reminded me of The Secret. It was very popular around here the last couple years. Someone gave me the video (I was too lazy to read the book) a year ago and I had watched it then but not paid it much thought since. I remembered how it talked about using positive thoughts and visualizations to make things happen: improve your health, increase your wealth, get the relationships you want. The video suggests you test it. To think of something you want and visualize getting it and how you would feel and then to believe you will get it and not let any negative thoughts about it not happening get in your mind.

I decided to test it. I thought I would try something small so it would be easier for me to believe that it would happen. I decided I wanted $20. I visualized getting it, believed I would and wouldn't you know it by the end of the day, I did NOT get $20.

I got an unexpected $100!!! My mother stopped by and gave it to me. She said she wanted to help pay for my son's preschool. I tried to refuse it, but she wouldn't have it. It wasn't until I was in bed last night that I realized I had gotten the $20 and then some.

I'm going to try this again sometime with something loftier. And maybe one day with my UC.

Wednesday, September 9, 2009

Did I Do That?

During this most recent flare-up, while spending quite a bit of time on the throne of thought, I've had a reoccurring question come to mind. After getting better the first time, I honestly believed I would never be sick again, so when it came back it shocked me. I had to ask if I had done this to myself. There is a mini Steve Urkel in my mind saying, "Did I do that?" while squinting through large glasses. Was something I did or didn't do the reason I am sick? Was eating certain foods or not eating something I should have the reason it came back? Was over-extending myself and not resting enough the issue? I just want to know if it was my fault. Not that it would change anything. I would like to say that it was out of my control, that it couldn't have been helped. But I don't know that.

Some other bloggers have supposed drinking to be a link. I've never had a drink in my life. I've also never smoked. Interestingly, UC is less common in smokers. I do admit that I have a sweet tooth and have indulged it over the years. I also am more "Type A" and worry a lot. Those things can be contributors. I have a relative that died with Crohn's disease...but we weren't blood related. So I'm not sure what the reason for my illness is or if I inadvertently or subconsciously caused it.

Then there is the left-sided thing...

I have Distal Colitis, meaning the disease is only in the left side of the colon. Why is this significant? Because when I was visiting with so many alternative healers there was a reoccurring theme that illness on the left side of the body is the feminine or emotional side where the right side is the masculine or intellectual side. This didn't mean much to me when I was meeting with them because I didn't discover it was on the left side until after I had the colonoscopy. When the doctor told me, I remembered the comments from the other healers. Left side = emotional side.

Recently I have started reading Louise L. Hay's book You Can Heal Your Life. I haven't finished it yet but it is basically about changing your mental patterns that create "dis-eases" in the body. Louise has a section in the book where she writes about the emotional causes for illnesses. These are some of the ones I looked up:

Colon: Fear of letting go. Holding on to the past.
Colitis: Insecurity. Represents the ease of letting go of that which is over.
Itis/Inflammation: Anger or frustration about conditions you are looking at in your life.
Left Side of Body: Represents receptivity, taking in, feminine energy, women, the mother.

She didn't specifically have UC in her book, but I think the above things would cover it. So what I get from reading her book is my left-sided UC would be caused from a fear of letting go and potentially involving females. The thing is I had kind of a lousy childhood with some traumatic events that happened. I've always felt like those events didn't have any bearing with me in my adult life, but could the fact that I have never confronted those issues be playing into my health now? If that is true than just burying those issues instead of dealing with them did cause my UC, ergo I did cause it.

Louise L. Hay said in her book that all "dis-ease" comes from a state of unforgiveness. Again, I haven't finished the book yet, but I have read where she said forgiving those that are the hardest to forgive and loving ourselves is the key to healing ourselves. Louise herself had quite a crummy life (so much so that mine seems quite rosy in comparison) and also was told she had incurable cancer. She writes that changing her thought processes allowed her to completely heal herself and she says that it can work for anyone and for any illness.

More thoughts to ponder on the throne of thought I suppose. (P.S. If anyone wants me to look in her book under other ailments, let me know and I will see what she says is the emotional tie. A friend of mine was having low back pain. I looked that up and it said lack of financial support. She is in the real estate market and has been having a tough time in this economy.)

Monday, September 7, 2009

How I Got Here

I actually consider myself quite lucky that I even know I have Ulcerative Colitis. I sometimes wonder how many people are out there with this illness--knowing something is not quite right--but not knowing what it is. I was sick for five years before I found out I had UC. (Sorry, this is going to be a long story).

I had always had a sensitive stomach. I would always get butterflies in my stomach whenever I was nervous or upset. I remember pretty clearly the day I knew it was more than just nerves. I had been asked to be a guest lecturer for a college class of 500 students. Being quite introverted I was scared out of my mind. The morning I was supposed to speak I was incredibly sick and spent most the day in the bathroom. I still went to give my presentation and before it started made several trips to the bathroom then too. It was then that I first saw blood.

I was convinced I was dying. I thought the blood meant cancer or something worse. I was a college student and didn't have a lot of money so I went to the free clinic at the University. The doctor there talked to me about my symptoms and checked the regular stuff (blood pressure, weight, etc.). She asked how many credits I was taking. I told her 21 (it is considered full-time to take 12 credits) and that I was a student fellow and also had a part-time job and an internship. She said with all that going on it was no wonder I had these symptoms. She told me to make sure I was eating well, to get plenty of rest, and to try to eat more fiber. Looking back at this time, I was under an incredible amount of stress. I thought I could handle having that much stress if it were for just a short amount of time (I was close to graduating). But I think now all that stress triggered my UC.

A year passed and I was still sick. In fact I was quite sick every morning though I would feel better as the day went on. I went to a nurse practitioner. She also had a discussion with me and said it looked like I wasn't handling the stress in my life very well. That confused me a bit because I really didn't feel like I was under stress at that time, especially compared to how I was the year before. She prescribed sedatives for me and told me to have a follow-up appointment in a month.

Back in her office a month later she asked me to tell her on a scale of 1-10 how much improvement. I said a 2. She frowned and said she would have thought I'd be feeling a lot better than that. Then she prescribed anti-depressants and again told me to follow-up in a month. The process of me trying the prescriptions and returning for a follow-up continued for quite some time. Each visit she would prescribe a stronger medication, but I never really felt much better. Eventually I decided if it was about stress, it was just something I needed to get control of on my own. I stopped seeing the nurse practitioner. I started a regular exercise program. I also learned about a friend with Caeliac disease that had similar symptoms so I got tested for that, but it was negative.

My mother is really into alternative medicines. Around this time she started taking me to all kinds of wellness specialist, chiropractors, and spiritual healers. I would call them all witch doctors. I tried all kinds of alternative medicines including foot baths, foot zoning, laser therapy, clearings, and color therapy. They had me taking all kinds of vitamins, herbs, and special diets. I was skeptical of all of these alternatives to traditional medicines. My mother would pay for them because they weren't covered by insurance and I wouldn't have tried them if I had to pay for them. Ultimately though, I never felt better, not even after trying the different treatments for several months. When I finally did discover that I had UC I started feeling slightly better within days of starting Asacol. To do this day though my mother still thinks the reason the alternative treatments didn't work was either because I didn't believe them (and thus willed myself into still being sick) or because I didn't stick with the treatments long enough. But I couldn't let my mother keep paying for the expensive treatments that weren't working and to me seemed no more beneficial than a sugar pill. Sometimes they would say they could sense an emotional problem for my illness. I think there could be some legitimacy to those claims and I'll write a post about that later.

More time passed and I had grown accustomed to my condition. I didn't realize how sick I was because I was just used to it. At this point, I would get sick anytime I ate anything. And I felt sick pretty much most of every day. People would ask my mom if I had an eating disorder or cancer because I had lost so much weight and I looked (and felt) horrible. One evening I went to a movie and ate some theater popcorn. After I got home I felt extremely sick. It was the worst I had ever felt with extreme abominable pain and diarrhea. The pain was worse than giving birth (and I'm a mother, so I know!). My husband took me to the Emergency Room and after four hours and receiving some type of pain killer (I don't remember what), they sent me home. The next day I went to see a family physician. She suspected the violent attack was due to an allergy to something I ate. Probably the movie theater popcorn since that is the only thing that was unusual that I had eaten.

I had my blood drawn and tested for allergies. They came back positive for mild to moderate allergy of corn, wheat, and soy. The doctor thought I had the attack because of the popcorn and that I was regularly sick because of everything else I ate. I was instructed not to eat corn, soy, or wheat in any form for the rest of my life. I met with a dietitian who helped me create menus. It was very difficult because so many things use corn or wheat as fillers and alternative food products usually used soy. Still I did it. It was very hard and very expensive but I went one full year without eating any of the foods. I was willing to do it because I just wanted to feel better. But I just kept getting sicker. I thought I must still be eating the foods I was allergic to. That maybe I was missing them in the ingredients or that there were trace amounts in the foods I was eating.

During this time I was pregnant with my son. Because of my dietary restrictions I was eating really healthy (there aren't a lot of junk foods or dessert type foods without corn, wheat or soy). I was still sick though and talked to my obstetrician about being sick while I was pregnant. She said I probably had hemorrhoids from having diarrhea so much and that was what the bleeding was from. She felt that if I continued to not eat those things I would get better but it would take some time for my body to heal.

Then, my son was born. This was another really stressful time in my life. I was still working (though working from home then) and I was also helping writing a grant for my old college department. The night wakings/feedings and responsibilities of being a new mother were overwhelming. I think I weighed 107 then. A couple days later my body went into shock. I was freezing and couldn't get warm, my temperature had dropped quite a bit. I had another trip to the emergency room.

After this my mother had had it. After a friend of hers told her I really needed to see a specialist she convinced me to see a Gastroentrologist. I had thought about going to one before but I was scared they would make me have a colonoscopy which I was terrified of having. I went and he did make me have one. It's really funny because the colonoscopy wasn't bad at all. In fact I don't remember any of it! The worse part was the preparation, which wasn't that much different from how my days went anyhow. (If anyone out there is scared of getting a colonoscopy, don't be! They really aren't that big of a deal!) That is when I found out I had UC.

Doctor prescribed Asacol and a few months later I was completely better! It was amazing how it felt to not feel sick at all! I couldn't believe I was willing to live with the symptoms when I could be feeling so good! After a couple more months on the medicine the doctor said to stop taking it and to see how I would feel without it. I still felt great! Every morning I would have so much gratitude when I was in the bathroom (weird, I know). I honestly thought I was healed and would never be sick again.

Eleven months passed and I suddenly had a flare-up. It was surprising to me how quickly I went from feeling just fine to feeling just as bad as ever. I desperately called my gastroenteroligist but he was on vacation and couldn't see me until the next week. It was one of the longest weeks of my life. I begged the nurse to put in a prescription of Asacol for me but she said she couldn't until I saw the doctor.

I finally got to see him and it has been a couple months now. I have gradually started feeling better. It seems to be taking longer to feel well this time than last time, but maybe I have just forgotten. I am taking 10 pills a day and hope that once my symptoms are under control I can reduce the amount of pills. This time I won't stop taking the medicine. My doctor said I will probably have to take pills the rest of my life.

Call it what you want, but I consider getting the diagnosis and the medicine a miracle in my life. I hope everyone that feels ill can get the help they need. It is amazing to me that I had met with so many medical professionals without any of them considering UC. Next time, I'll start with the specialist.

Sunday, September 6, 2009

Potty Humor

The other day my two year old ran down our hall in front of me. He ran into our bathroom and slammed the door shut. I paused at the door for a moment before I opened it to see if I could hear what he was doing in the bathroom. He isn't potty trained yet. I heard a familiar sound. Opening the door, I confirmed what I was hearing--he was blowing raspberries on his arm.

So THAT's what he thinks I'm doing in the bathroom all the time...

Saturday, September 5, 2009

What's Your Secret?

I'm a skinny girl. I'm going to be completely honest. I'm skinny. I am 5'7 and today I weigh 115 pounds, which is five pounds less than what I weighed when I graduated high school nearly ten years ago.

Pretty much any day I go out in public someone will comment on my weight. "You are so skinny," they say, as if they were giving me a compliment. Their next comment is predictable. I've heard it from family members, friends, acquaintances and strangers. "What's your secret?"

At this point, I usually just smile, shrug, and say, "Oh, I don't know." And that's the end of it. But it's not the truth. The truth is that I know exactly why I am so skinny. But most of these people probably don't care anyway. They are just making conversation. Somehow commenting on someone's weight just became everday small-talk.

I was recently at a community picnic when I ran into a distant relative I had not seen in sometime. "You are so skinny." I never know what to say. Do I say thanks or what? Do I say that she looks skinnier? I never know what to say. Then it came. "What's your secret?"

I don't know what came over me. I must have been feeling a bit snarky. I suddenly found myself telling her my whole medical history. I have Ulcerative Colitis. And I told her. I told her about how I feel sick and how it causes me to lose weight and I really told her more than I should have.

And she replied, "That must be so nice."

I was shocked. I stared at her to see if she was joking. But she just had a smile frozen on her face. As I related this incident to a friend I wondered if the girl just hadn't been listening. How could she have said that it would be nice to have a chronic illness???

Then I got my second shock. My friend told me that she would be willing to have my illness if it meant she would be as skinny as me.

SERIOUSLY PEOPLE?!? So begins my rant...