Friday, December 18, 2009
The absolute good news from all of this is the morning sickness has eased, I'm over the flu and sinus infection and the fever blisters are gone AND... I am optimistically thinking that I am finally in remission! Best Christmas gift ever!
The last time I was in remission it lasted eleven months...but I had gone completely off all of my medications. This time my GI doctor wants me to stay on the Asacol three pills a day, three times a day. That's a lot of pills.
And things are complicated because I'm pregnant now. If Asacol was completely known to be safe during pregnancy it would be classified as Category A. It is classified as Category B. I talked to my GI doctor, he said he thought it would be better for me to take the Asacol to keep my health up and there are not any known risks from that medication.
I talked to the pharmacist. He said that he felt completely comfortable telling me to take it while pregnant. He said he has known several women that have taken it while pregnant with no ill effects and that Category B means there are no adequate and well-controlled studies in pregnant women. He said this is mostly because the drug companies don't feel it is ethical to do drug studies on pregnant women and not necessarily because the drug is unsafe.
Then I tried to call my obstetrician. I couldn't reach her over phone, I'd have to wait for my first appointment, but I did talk to her nurse who looked it up in a book and said it was fine to take.
I was at that point unsure what to do... This is a personal decision and each individual facing this circumstance has to make their own choice. These were the things I thought about:
- If I'm already in remission, and know that if I am careful could be in remission for a long time, why would I risk taking any drug at all if I didn't have to.
- Not exposing myself to chemicals and drugs is one way to keep my baby safe, but I also need to be healthy to keep the baby safe.
- I was in a flare-up during my entire first pregnancy. I was induced three weeks early because of intrauterine growth restriction (IUGR). This means my son was below the 10th percentile for his gestational age at that point. He weighed 5 lbs 11 ozs at birth and the doctor was concerned about him having serious problems (he's absolutely perfect now). While the doctor said the cause of this was unknown, I can't help but wonder if it was related to my flare and my body just being so depleted.
- Why would I risk going having another flare-up if the medicine can help prevent it.
- How will I have the energy to care for a toddler and a new baby if I am sick
I felt like everyone was saying I should stay on the medicine and if I wasn't pregnant I knew I would for sure. I finally made up my mind when I talked to my Ob/Gyn.
I told her my concerns and asked if I should try to get off the medicine or at least try to cut back the number of pills. She told me that in her opinion Asacol was completely fine. She said she has many patients on it and that she has seen studies involving pregnant women that indicate their is no harm. I know that she isn't one of those doctors that say anything is fine because with my first pregnancy I wanted to take Probiotics to see if that could help with the flare and she would not let me because she said it was unstudied and the risks weren't known.
So, ultimately I decided to stay on the medicine FOR the health of my unborn baby. Having enough energy, getting enough nutrients, feeling well, getting good rest, etc. is just as important as avoiding things. I am sure there are people that disagree with this decision or think I should take non-medicinal approaches, but I feel this is what fits best for me, my lifestyle, and my family right now. I'm feeling good and I got to see the ultrasound of my baby and hear his/her heartbeat. Life is good.
I'll keep you updated!
Wednesday, November 11, 2009
But then I had a couple days when I was extremely sick again. Going to the bathroom 20+ times a day, and feeling sick all day and night. My doctor called them "episodes". It was like I had started all over and no progress had been made.
There was something different too... I also had this queer queasy feeling. Like I'd eaten too much sugar on an empty stomach (possible, it was Halloween recently). Or maybe kind of a seasick type feeling.
That was odd. I hadn't felt that with my UC before. Perhaps it was something else. Swine flu maybe? Regular flu? Then I had another thought. When I ate, I had my regular UC type sickness. When I didn't eat, I had the seasick type feeling. Hmmm....
That's right! I'm pregnant! Baby is due July 9, 2010.
I am excited and happy and scared and worried and every emotion in between!
After I found out I was pregnant the bathroom issues calmed down a bit, not as good as before but not much worse either. I kind of feel like the "episodes" were my bodies attempt to get my attention. "Hey Skinny Girl! Something's going on in here!"
In a recent post I wrote that I was feeling terrific, and I am, but it isn't because my UC is better. In fact the UC symptoms are a little worse (but I'm still hoping remission is right around the corner! Maybe by Christmas). But I have just been in such a darn good mood lately that even feeling sick with UC and morning sickness can't bring me down. The morning sickness is new to me, I didn't have it all when I was pregnant with my son. So that is my big news! Like I said we are really, really happy! And I guess I won't be Skinny Girl much longer!
Friday, November 6, 2009
She told me that both jars contained rice and that she had labeled one with positive and good thoughts and the other with negative thoughts. The first week she put the rice in, she would open the jars and talk to them. To the jar with the positive label she would say things like: "You are beautiful" "I love you" "You make me happy" "You are so smart".
To the jar with the negative label she would say things like: "Why are you so stupid?" "You never do anything right." "I hate you." "You are so ugly." She also said if she were having a bad day she would give the negative labeled jar dirty looks.
She sealed up the jars. This picture was taken of the jars three years later. Katie wrote, "The 'positive rice' is still white and fluffy and otherwise unchanged from the years before (other than being jostled around by moving. The 'negative rice', on the other hand, continues to deteriorate and discolor." Nasty, right?
I was amazed when I saw the jars and told my husband about it. He was...skeptical. And so we conducted our own experiment. I however did not have any jars on hand so I used brand new Rubbermaid containers. Here is a picture after two weeks:
Now unlike Katie, both of my containers eventually grew mold and they started smelling so after a couple months, I threw them away. I don't know if I didn't do the experiment right, or if the difference was in using the Rubbermaid containers instead of glass jars or if I was because I kept in my laundry room where it is quite humid, but Katie has documented pictures over the last three years of her rice.
HOWEVER, it was clear to me that the one I labeled hate and spoke unkindly to had significantly more mold and rot and developed it much faster than the one I labeled Love and spoke kindly too.
The thought I had yesterday after my last post was, "What if the unkind words we say to ourselves are literally causing our bodies to break down." When I berate myself for making mistakes or not measuring up...am I hurting my body?
From our experiment I have tried to be much more careful about what I say to myself and to others. We can be a positive influence or a negative one. The choice is ours.
If this is interesting to you, I would invite you to participate in the rice experiment. (Do a google search to see more.) If you do try it, I would be very interested in your results, so let me know!
Thursday, November 5, 2009
I personally feel we have yet to harness the real power of the mind. My question now is can the mind heal the body? And if the mind can heal the body...can it also make the body sick?
There are myths and urban legends that suggest this. There are also scientific studies about placebos and how if the mind thinks it is getting better, the body responds. And this article from Time magazine tells that it has been scientifically demonstrated that if a child younger than 11 has a finger sliced off, if nothing is done to it medically, it will grow back on it's own.
Is this because a child under 11 would believe that it is possible? Or is it because they are growing so quickly that there body just has that capability at younger ages. As we enter the teenage years do our experiences in life cause us to become jaded and disbelieving, thus making healing more difficult? Is faith the real secret to our health, for better or worse?
Can a conscious belief that we are healthy, cause a body to heal itself? And if that is true, how does one with illness come to fully believe they can return to full health? Just some thoughts from my wandering mind...
HEALTH UPDATE: Feeling terrific, and I've got some good news! More on that next post.
Sunday, October 25, 2009
I am standing in front of my Elementary School alone. I'm ten and I am waiting for my mother to pick me up. It's the first big snow day of the year. It's already been snowing for several hours and there is nearly a foot of snow on the ground. Large, heavy flakes continue to slowly fall from the sky. The new whiteness of the world and the silence not only feel peaceful and tranquil but also eerie and strange.
This was an exciting day for me. The reason I was outside waiting for my mom while all the other kids were still in class was because my grandparents were coming to visit. I was so excited to see them.
The entire day I was filled with such excitement and happiness about their arrival (and about the fact that I got to miss part of school). But there was something else there too. Although I was in a very good mood, a fantastic mood really, I had this strange feeling that I could cry at any moment--that without difficulty I could form tears and cry. It was a bizarre feeling, especially since I wasn't sad (and I'm not one to cry when I am happy). Noting the feeling, I made a plan that the next day when I was supposed to go to school (while my grandparents stayed at my house) I could use this new found ability to fake being sick, allowing me to stay home and have fun with my grandparents. Just to test it I tried crying and saw that I could and that I could easily cry quite a bit. I stopped crying, hoping to save the big tears for the next day, and continued waiting.
After a while, I wondered what was taking my mother so long. She was quite late and I was anxious to get home. Finally I saw our old yellow truck pull up in front of the school. I ran and got in. Seeing my mother's red eyes and splotchy face I instantly knew something was wrong. In my childhood innocence I asked, "Are Grandma and Grandpa here yet?"
My mother burst into tears. I stared at the window-wipers whisking away the snowflakes as she told me my grandfather had died. And then I cried.
What does this have to do with UC? This was the first time I thought the human mind might be capable of more than we realize. I had the sensation to cry before knowing why. I feel like in some way I knew something bad had happened. William James wrote, "We are making use of only a small part of our possible mental and physical resources," (from The Energies of Men, p. 12). If our minds are capable of knowing more than our physical realities, perhaps on a subconscious level, could we then use our conscious minds to somehow access some of that knowledge? What abilities do our minds have that are yet untapped? Can we (as so many people believe) really heal ourselves? Did my subconscious mind know my grandfather had died or was it a coincidence?
More thoughts on this in my next post.
Friday, October 16, 2009
I really think that you are quite impertinent. You came into my life without invitation and have really behaved quite rudely. You have wrecked havoc on my life and particularly on my colon. I don't think we can ever be friends.
At one point in time I thought I could tolerate you--that I could adapt to living with you. But then I remembered why I hate you so much.
It's one thing to bother me--make me uncomfortable, embarass me, disrupt my schedule and routine--but it's quite another thing when you encroach upon the happiness and well-being of my son. You see, I love him more than anything else in the whole world.
And I hate you for the days I could hear him crying in his crib for me, but I couldn't come because I was with YOU on the toilet.
I hate you for taking away TIME and ENERGY that should have been devoted to my son.
I hate you for the all the playdates, outings, and vacations that were missed because YOU needed so much ATTENTION.
UC, honey, it's not me...it's you. I hate you and I don't want you in my life. Don't you EVER hurt my son again. I want you out of my life for good.
Tuesday, October 13, 2009
My biggest stress of the vacation was where I was staying. Instead of getting a hotel I stayed at the home of my uncle and his family. They showed me the bathroom I could use. The bathroom opened into their kitchen...where the family pretty much stayed all day...and there was no fan in the bathroom...and a very thin door...and I could hear them when I was in the bathroom so...
They all know about my illness (thanks mom) but knowing someone has a sickness and hearing them be sick are two very favorite things. I hate that the bathroom was right by the kitchen where people would be preparing food and eating, who designed that? But it was fine because I was hardly sick at all the whole time I was there. Maybe it was because it was a 10 hour car drive to get there and so I had a (kind of) relaxing day instead of my normal hectic days. Or maybe it was something else. But I had a really good vacation and I felt like a normal person for a while.
While there, I visited the Denver Museum of Nature and Science. They had this exhibit where you put monitors on your forehead that read your brain waves. It was a game between two people. There was a ball in the middle of the two people and a goal on each end. The point of the game was to become as relaxed as possible. When you relaxed, it would move the ball towards your goal on the other end. But as soon as you started thinking about something and your brain waves (or something, sorry I don't remember all the details) would go up and the ball would move in the opposite direction. My mom and I had been watching a couple playing the game and watching their brain waves for about 15 minutes before the girl beat the boy. We decided to give it a shot. My mom has studied meditation and relaxation techniques for years and was pretty confident she would win. Also, my family pretty much all think the reason I have UC is because I can't relax and stress a lot. I thought she would win because there was a crowd of people there watching and I am naturally pretty introverted and also because I'm not known to be a laid-back person. After just a minute of playing the game though I had won. I had just repeated in my mind the words "calm" and "peace" and hadn't tried to focus on the ball moving much. After I beat my mom, my cousin thought he could beat me, but I won again. And then I beat my dad. They showed the brain waves on a screen and every time mine were just low and steady while the others' would go up and down a lot.
My mom turned to me and said, "If you are able to relax so easily, why in the world do you have Ulcerative Colitis?" Why indeed. Mom said I should buy one of these and then when I see I am stressing I can just calm myself down and wouldn't have to be running to the bathroom all the time. How much do you think a brain scanner thingy costs?
P.S. When I got home, there were three messages on my answering machine from my doctor's nurse to call them. Remember I hadn't called last Monday--maybe they thought I died. I called the nurse back and the doctor has given me new orders to increase my dosage back up and to be sure to call EVERY week.
Monday, October 5, 2009
The problem has been the conversations I have with nurse Kathy. It goes something like this:
Me: I've still been sick in the mornings, but after that I have been feeling fine the rest of the day.
Nurse Kathy: Define sick.
Really? Do I have to define sick? I mean, I call you every week. Do I really have to describe the diarrhea, spurting, bleeding, every week? Don't you remember from last week when I defined "sick" for you?
I know, I know, she needs to know specifically what symptoms I'm having so she can tell the doctor. Sick, after all, is relative.
It's just I am a bit uncomfortable talking about "bathroom" things. Going to the doctors for me is horrible when first you have to tell the person all the details when you call for the appointment and then at the appointment you have to tell the lady at the registration counter, and then the nurse that takes your weight and blood pressure, and finally the doctor himself. Why can't the first person just write it down and pass it on to the others? Why do they all need a graphic description? I think they like to see us squirm.
Writing about these things on my blog is one thing, but actually having to say the words out loud--to another person--is another thing. I think it has to do with my upbringing. My parents always taught me that it wasn't proper to talk about bathroom issues. In fact, I clearly remember the day one of my visiting friends stood up and said she needed to "go pee". My mother almost fainted. Women, or anyone for that matter, didn't pee or poo. We used the restroom or needed to powder our noses or merely visited the bathroom. But we NEVER talked about what happened behind closed doors, because there is a reason those doors are closed.
So last week when she asked me to define sick I sighed and reminded myself she hears this crap (sorry, couldn't resist the pun) all the time and I shouldn't be embarrassed. But today, I just didn't feel like calling. So, I didn't. I just felt today that if I didn't acknowledge I had Ulcerative Colitis, that maybe...I wouldn't.
Monday, September 28, 2009
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
Sunday, September 20, 2009
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:
- 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.
- I get some attention for being sick. It makes me unique from other people and grants me sympathy from those that know.
- 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.
- I always have a good excuse to procrastinate. Those goals that I set can wait indefinitely until the day that I am well.
- Puts my loved ones in a care giver role and myself in a dependant position.
- Allows me to be a cautious observer of life instead of an active participant.
- If I do something wrong or say something hurtful, it was beyond my control because I wasn't feeling well.
- 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
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.
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:
- 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.
- Greasy foods (Pizza, hamburgers, french fries, fried anything)
- Spicy foods
- Not getting enough sleep
- Getting too hot
- 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
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. http://www.thesecret.tv/ 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
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
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
So THAT's what he thinks I'm doing in the bathroom all the time...
Saturday, September 5, 2009
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...