stay in remission with my colitis

I’m taking blogging about colitis to the next level! I started making videos on Youtube to document my remission and anything else that I encounter. So far I haven’t really gotten any negative feedback about it – which I’m so relieved!! I was considering on taking the videos down, but so far everyone’s been really encouraging.

I do have to mention that I stirred up a little controversy about the diet that I’m on. But oh well, like I said, everyone’s different. The SCD diet happens to work for me so far.

Its really hard to have colitis and pretend to be normal in the office. Everywhere I turn there’s always candy, cookies, bagels, brownies, pizza, birthday cake… and the worst part, its ALL FREE! For once, can an office have a no-carb/no sugar snackery for this mild-mannered super hero? I guess not.

Even though I have been living with colitis for over 3 years, sometimes I forget and eat a forbidden food. I really don’t know what compels me to do this. Is it because its free? Is it because I want to be like everyone else? Is it because I miss the taste? Maybe its a little of all of the above.

In order to stop the temptation, I’ve created a persona based on lies so co-workers won’t tempt me to eat those little slices of heaven. I’ve kept up a major lie that I’ve had my teeth whitened and if I eat anything sweet, it makes my teeth sensitive. For one, they feel sorry for my fake “botched-procedure” on my pearly whites. And second, they don’t want to see little me with a toothache. All I have to do is be good with my Crest White Strips and no one has to know.

I’ve used all kinds of lies, and the teeth-thing seems to work best. I’ve tried the “atkins diet” lie, but everyone seemed to hate me and my 105 lb. self. I’ve discovered the hard way that most people don’t like hearing about thin people being on diets.

I’ve also tried a lie where I said that I’m allergic to nearly everything. But that only led to a lot of questions and people trying to overly-mother me. I hated all of the attention.

I’m not obligated to tell ANYONE about my illness. But sometimes I find myself in situation where people want answers… even if it isn’t true. They want to know why I stay away from certain foods and blah blah blah.

When dealing with colitis: Lies work better than the truth. When I was first diagnosed, everyone in the office already knew there was something wrong because I was absent for weeks at a time. I told the truth and all it left me was trouble. I left my job because I was too sick to work. But when I was ready to go back… this is what happened:

I’m not a laywer or anything, but I would think that its illegal to deny employment for having an illness. But I know that (behind closed doors) I was denied a job that I applied for because of my illness. I don’t blame them. An employer wants to hire someone who can actually BE at work. I’ve put the past behind me.

Lies may not work in relationships, but they may work for colitis. I’m actually having fun with the teeth-thing. Its like a strange game to me now.

Fast forward to 2007. I’m in a great job that I enjoy and I feel almost normal! The problem is that I’m still in an office and there are cookies and cake everywhere. Lately I have been cheating on my diet :( Its been hard to resist all the free Halloween candy and the birthday cake… but I know now I have to stop cold turkey. I haven’t gotten a flare-up but if I keep at this pace, I am sure to get a one-way ticket to the hospital.

So, how do I fix this? Change the pace! I finally went grocery shopping and started cooking all my own SCD diet friendly foods. I’m starting all over! I cooked a big pot of soup and I’ve been eating it everyday. And tonight I baked a cheesecake from my “Breaking the Vicious Cycle” book. And you know what? The cheesecake tastes almost like the real thing!! Tomorrow I’m going to top my cheesecake with strawberry or apricot sugarless jam for a little more flavor. No one ever said that slices of heaven couldn’t be SCD.

Wish me luck.

I have insurance now and I finally made an appointment with a new GI doctor. I found him on the internet under a listing of doctors that support this crazy diet that I’m on. I’m still scared of doctors because of what I went through… but I suppose anyone is better than that dirtbag doctor that I was seeing. I was only seeing him because of certain connections through family. Its really complicated…. but anyay, a doctor should be someone that I trust [with my life] and that old doctor isn’t that kind of person. He was filling me up with prescription drugs without even being concerned about finding a cure. Its always been, “oh, drug A doesn’t work anymore huh? Let’s put you on drug B. And if that doesn’t work, we’ll try drug C… but in a higher dosage. Heck, let’s just surgically remove the whole thing. You can’t have a bad gut if it isn’t there anymore.” I’m still on tons of medication and my liver is probably useless now.

But you know how I survived? I stopped taking everyone else’s advice. Those doctors won’t admit that what they told me to do was hurting me. I believed them because they are doctors, but my body was telling me that everything was wrong. Its been two years since that time I spent in the hospital. My weight is normal and my hair stopped falling out. The aches and pains has pretty much stopped.

I’m trying to be optimistic about this change, but I can honestly tell you that I’m really scared. I’m trying to convince myself that this new doctor will tell me that a miracle has happened and I am cured! I still don’t feel 100% but that will come in time.

I’ll get through this. I just can’t let myself get depressed.

I’ve been keeping track of my UC experiences here and found something I wrote when I was first diagnosed. The time between then and now has been extremely different. This was written in September of 2004 when I was still trying to figure out how to stay in remission. I do not use these methods anymore. It worked for a few months, but I only ended up getting really sick again.

The good news is, I have been in remission for at least six months, maybe more.

I am a 24-year-old female and was diagnosed with Ulcerative Colitis in April of 2004. Right now I am only coping with the disease. This all started when I was suffering from a week of diarrhea. I had gone to the doctor, but was misdiagnosed for a
gastro-intestinal irritation. A few days later my parents decided to take me into the emergency room. I was sent home the same day because they thought it was only acute diarrhea and possibly food poisoning. A few days passed, and at this point, I was on my 12th day of bloody diarrhea. I was sent into the hospital again, but this time I had to stay for eight days.

Believe me, I was in a serious amount of pain. Not only did I get stomach cramps, but my bowels were cramping because they were exhausted from the many days of diarrhea. This kind of pain is awful because you feel it in your back and it hurts too much to even stand up straight and even lie down. They found that I was very dehydrated and my potassium was low.

During my stay in the hospital, they had me on a liquid diet. They also ran a lot of tests including a Sigmoidoscopy. It is similar to a Colonoscopy, except, they don’t go as far deep into the colon. Sure enough, they found that I had mild ulcerative colitis.

I was annoyed when I found out that there is no known cure for the disease and that no one is sure of its origin yet. But I was relieved to find out that this condition is fairly common and treatable. The guys in the lab were very cool because they went step-by-step on how the procedure is going to go for the
Sigmoidoscopy. They put me to sleep and when the procedure was done, they showed my “swollen colon” on the screen and gave me a copy of the photos they took to help me understand what I have.

For two months I was on medication. I had to take six Asacol pills and a hydrocortisone enema. Taking medicine is no fun, but eventually it helped… I think. My medication was very expensive and in addition, I have no medical insurance. So each
refill, with all the medication combined, came up to about $200. After two months, my doctor said that I can come off the medicine but was warned that I might get flare-ups. If this happened, I have to continue the Asacol pills only. I don’t want to return to the pills simply because they are expensive, and also, it made my hair fall out. Imagine, a 24-year-old girl
and thinning hair? I’m supposed to be young, healthy, and invincible! I also had a very strange side effect. My eyes would get swollen sometimes. I have no idea if it might be related to the medication, but I’ve never had this problem before I started on the pills.

I am off the medicine now and I am trying natural remedies. My hair stopped falling out and my eyes don’t get swollen anymore! I’m only learning how to change my diet, it may not work for you, but I’m giving it a try. This is what I include in my diet: fish oil pills, flaxseed oil pills, aloe vera juice,
multivitamins, antioxidant pills, green tea, and chamomile tea. I haven’t had a serious flare up yet, but every day is a struggle. I’m always running to the bathroom and I get frequent stomach aches. I cut out a lot of things in my diet such as seeds, nuts, popcorn, corn. I read that these scratch your insides and are hard to digest. I also cut out the dairy and
use soy products instead. I gave up coffee because I noticed that it gives me stomach aches, as well as spicy and greasy foods. I made a lot of sacrifices with my diet but I don’t want to end up in the hospital again. You should talk to your doctor and see what works for you. My doctor said that a UC patient can eat whatever they want because there is no exact formula for recovery. Just make sure to avoid foods that will bother you especially during a flare-up.

I find that I’m the worst in the summer because the heat makes me lazy and not really willing to prepare my food. Though, I’ve been been pretty good about planning ahead. I would just cook one big thing and eat it the next few days and its always a good idea to have yogurt prepared and fruits ready to snack on. There are some days when there’s nothing to eat so I would have bananas and applesauce all day and sometimes I crack open a can of tuna. Its awful, I know…

Exercise has been a big help, I find that even though I’m not eating right (meaning an unbalanced diet), I don’t get symptoms right away if I’m stronger.

Luckily, its been months and I haven’t had any major symptoms! No pain, blood, mucus, no diarrhea! My only problem is that I haven’t had a normal BM in more than a year. Its not diarrhea but its not normal either… here’s a TMI moment: For lack of better wording, it sorta looks like cooked ground beef… augh! sorry sorry! Because of this, I started losing faith in SCD. But I’ve always kept in mind the words of my doctor, “This may possibly be the worst case of UC I’ve seen in my life”. He didn’t say that to me directly. I heard it through the grape vine. So I’ve been trying to endure patience. Patience. Patience.

Anyway, I think I might have hit a milestone. I don’t know if its becuase of something I ate or if its because I’ve been doing the SCD for a while, but finally! I had a normal BM! I feel a little foolish for having that as a major goal in my life, but progress is progress.

I refused the Remicade injections that the doctor recommended. I am determined that the Specific Carbohydrate Diet will continue to work.

In a previous post I mentioned that my hair was falling out. It was truly horrifying. I had to keep my hair long because I was to attend my cousin’s wedding. Keeping long hair made it easier for my hair to fall out. Two days after the wedding, I snipped off my ponytail. I always do this when I anticipate getting a “real” haircut. It saves me money because in addition to the haircut, salons usually charge extra by how many more inches they have to cut. I went to the salon and ended up with a very short haircut. I looked like a boy. I can tell you this, my self-esteem went down the drain. I know its only hair… but living with this illness is physically and emotionally draining. I clinged on to what I could depend on which was, what used to be, my hair. I mean, at least when I had hair, I could feel a little pretty. I always depended it to be on my head when I woke up the next morning.

I have a huge interest in funky fashion and owned a small colletion of brightly colored wigs, including pink and blue. When I felt like being social with my friends, sometimes I would wear a wig when we went out. I didn’t care if my hair was blue. At least I had hair, even if it was only temporary. If anyone asked if my hair was really blue, I would lie and say, “yes”. I think some people actually believed me.

In addition to cutting my hair, the doctor suggested that I can lower my dosage to only eight pills a day instead of the usual nine pills. It took about two months until my hair thickened and I could return to my normal dosage.
I had vacationed in Europe at the end of March. I was trying very hard to follow my diet over seas, but there was always the trouble of not being able to eat on time, or not finding what I could eat. I would end up cheating. I also ran into difficulty with the language barrier. I stayed in Belgium for a few days and most of the menus were in French. I was guessing most of the time when I ordered my meals from restaurants. If I was lucky, I was able to buy my food at a grocery store. So at least I could see what was in my food and determine if it was alright.

Two weeks after my return, I followed a strict diet to strip away the damage to my digestive system during my trip. Despite my efforts, the damage was probably already done. I developed flu-like symptoms for about a week. I had diarrhea for a little over two weeks. I also had a fever of 103.8 degrees! Is that even possible?! I should be dead! I checked the thermometer and that’s the reading that I kept getting, so it must be true. The fever went away after two days. I continued the starter SCD diet. Eventually the “flu” went away and I was starting to feel normal.

Currently, I am doing fine. I’ve been cooking for myself and continuing the diet and taking my pills… I know the diet isn’t perfect. I’m always low in iron. I take supplements and eat slabs and slabs of liver each week to bring my iron levels up. I’m just hoping that one day that I can eat regular foods again. I get tired of my cooking. I still miss eating pizza and cake!

Now that the weather is getting better, I’ve added exercise into my routine. I walk to and from work if possible. That means I walk between 2-4 miles per day. I’ve also added a pilates workout!

I really want to be healthy!

Ok… I did some research on a new medication that they might start me on. I don’t know… I don’t think I want to do it. With every new medicine that is tried on me, I just get progressively worse. I stopped my very first medication because my hair was falling out. That was a bad idea because a few months down the road, stopping my maintenance drugs and a bad diet landed me in the hospital. I switched doctors and was put on even more medication. At one point I was taking thirty pills a day! It was so awful. I felt terrible all the time. Now I’m only on one drug and my hair is falling out again!

The doctor wants to start me on monthly Remicade injections that will cost $4,000+ for each injection. The side effects include certain cancers, pneumonia, liver damage, tuberculosis….

The treatment is probably worse than the disease! I think I’ll take my chances going bald. I’ll stick to the diet I’ve been on for months now too, that seems to be working and the only treatment that I can trust.

Most of all, I have to stay positive, but its getting really hard to do so…

Its been a couple of months since an update. The doctors have been weening me off my medication slowly so now I am only on one kind of medicine. I have to tell you that the side effects are pretty unpleasant. The doctor thinks I am allergic to the medication (Colozal) and yet again I have to switch. I’m scared that the new one will be very expensive and will bring upon some more nasty side effects. I read up on a new one on the market. After weeks of using it, patients revealed that the medicine is toxic and emits radioactivity in the bloodstream after three weeks. Scary!!! How is that supposed to help me?! There is another alternative which is monthly injections. I still have to look up information on that method. Again, it will be VERY expensive. Bleah… it would be more cost effective if I were dead. Ugh… alternatives? Stick to the diet. Prayer? Win the lottery. Hope is not lost, just trampled on a bit.

Other than the Gatorade to replace electrolytes from my dehydration, I haven’t cheated once! NOT ONCE ha! Its not even worth it. I don’t even miss regular food. Ok, I lied. I really miss pizza. Ahhhh!

This time around my family is taking an active part in learning more about my diet. They’ve been helping me cook and when they see me too tired to do anything, they cook for me to make sure I have food. I love life.

Looking at pictures of food that I’m not allowed to have is like getting caught looking at porn. That’s just sad.

Currently, I am in recovery from a very recent flare-up which I believe to be a near-death experience. How strange to have a life-changing landmark at the tender age of twenty five years of age! Sometimes I find it unfair… but at least my eyes were opened fairly early in my life rather than too late. Or course, never say never. As the old saying goes, “Its never too late”.

Unfortunately there is no cure for Ulcerative Colitis, so I can only hope to stay in remission for the rest of my life and learn how to manage my life around this obstacle.

How do I plan to do this? Well, there are a few things.

1. I’ve been on a diet called The Specific Carbohydrate Diet for quite some time (SCD for short). This diet is supposedly a natural way to stay in remission through intestinal diet. It is not recognized in the medical community. In fact, its frowned upon by most doctors because they only want to treat this through prescription drugs. But some researchers believe in the diet. And it seems to work for most. Besides, the doctors aren’t the ones agonizing over the next bout of explosive diarrhea. I need to really stick to the diet this time. I will go slow and more importantly… TRY NOT TO CHEAT! Its really not worth another flare-up. Though, sometimes flare-ups are just beyond anyone’s control. Sometimes they just happen.

2. Pills. Don’t forget to take medication and take them ON TIME. The last time I kept forgetting, and then started tapering because I felt fine and I didn’t want to be too much medication. That may have contributed to my DOOM.

3. Learn how to relax! I’ve finally come to terms with myself and I finally know the difference between being stubborn and knowing when to quit. Too bad it took this flare up to open my eyes to this! Sheesh.

4. Research. The more you know, the closer you are to an answer.

5. Exercise. Being in good shape is also a way to manage stress. It also leads to a healthy lifestyle and a rawkin body! Yes!

6. See a nutritionist. I don’t really want to. But I’m open to anything out there. If it doesn’t work out, I’ll stick to the diet unless I find something else.

I’ve tried the herbal remedy voodoo… That didn’t seem to work out at all. I wish it worked for me, because at least I would’ve been able to eat what I want and manage the illness through supplements. Woe is me. In this case, it means I won’t be able to eat regular pizza ever again. I’d have to make it all myself unless someone finds a cure. In the mean time, I will use the SCD diet and cook up my own goodies. My parents are looking into getting me an ice cream maker!

I am always looking for new treatments or new findings on Ulcerative Colitis.

Gambatte Kudasai!