where am I now?

Dec 2010-symptoms started
Jan 2011 -first Dr visit
middle of Feb 2011 -follow up with GI / diagnosis
March 2011 -Began alternative forms of treatment (see last post)
Began keeping a daily journal with all the gross details towards the end of March. How I wish I would of thought of it sooner, so I could really compare my symptoms from a month ago.
So now it's April. I think I am getting better. I joined a forum for people like me at healingwell.com. When I read what some of them are going through, I don't feel like I am in all that bad of shape. And looking for patterns in my journal is sort of leading me to believe that my symptoms are slowing down. I guess this is a very slow process, fighting it cell by cell.

Here is my daily fight:
Following the autoimmune protocol developed by Dr Fuhrman for people with UC:

food consists of freshly made green juice, green soups, and steamed veggies (peas, carrots, squash, zucchini, artichokes), bananas, and oz of nut/ seed butter each day

daily supplements: probiotics, B12, iron, D, EPA, turmeric

this is all I can do until school is over- then I can do a water fast

March 2011- my plan

Here is what I decided to do:

As long as I don't get any worse, I am going to hold off of the medicine for now. I want give myself at least 6 months to try other things first. 

I am going to do the diet and the supplements. Including the probiotics. I am also including ginger in the green juice and taking a turmeric supplement because they are anti-inflammatory.

I will begin a fast when summer starts. I can't work 2 jobs, exercise with Matt, and fast too. The fast needs to be at least 7 days. I hope I can make it that long. I really wish I could go 10 days, but I wouldn't do that without doctor supervision. (That's a whole other story)


Next to try would be the LDN.


After that, I would like to try the worms if I could figure out a way to afford it.


The fecal transplant is impossible, because I don't think I can find a doctor to do it. I know there is a whole clinic in Australia, but here in the USA, we only believe in prescription drugs.


Another note: After reading many peoples experiences with UC, I am really surprised that my doctor choose to start me off on Predisone. Predisone is usually used if other medications don't work because of the serious side effects. If I do have to go on medication, I would like to start with the milder ones first, then move on to the killers if necessary.

March 2011- choices

If there is one thing I have learned, it's never blindly take any prescription tossed your way by a doctor. They are paid to prescribe by the drug companies and that's what most likely got me into this mess, anyway. Since Dr M couldn't or wouldn't offer any alternative then swallowing poison and destroying other parts of my body in the process, I decided to look for more answers on my own.

So I went home and learned.  Here are the Cliff Notes:

1. Predisone (while I'm sure helps many people) is probably what Satan would give you if he were your doctor, just to watch you suffer. Read the side effects.
2. Asacol is not terribly effective, and has a slew of unpleasant side effects too. Not to mention they are both expensive, and she wanted me to take Asacol for the rest of my life.  
3. Drugs work for many people, but they don't always work. Sometimes you have to use worse and worse drugs, until they have to cut your colon out anyway. And you're left with whatever system or organ the drugs ruined, too. 
4. People have had success treating and controlling UC without dangerous drugs, or in spite of them
5. Doctors don't really know what causes UC. And even though the symptoms are the same, each person can develop it for different reasons. For example, Accutane may have had an effect on my immune system, causing me to develop UC. Another person develop it after getting a parasite. Taking antibiotics for a long time can cause UC as well by killing off the good bacteria. Maybe it's a combination of things, and then the UC develops. 
6. Surgery is the only known cure. The colon is removed and the person is left with a bag outside their body. Sometime the doctors can build pouch inside the body instead.

Here are some of the alternative treatments that I have found.
Diet: needs to be high-nutrient and anti-inflammatory. Green veggie juices and omega-3s are important. Dr. Fuhrman has had success treating many patients with various auto-immune diseases, so I am following his dietary protocol.Recommended supplements for me ire: iron, D, B12, fish oil
Fasting: so much can be said about the effectiveness of fasting in the treatment of many illness. This has been well documented, yet our prescription- focused health care providers don't even offer it as a suggestion. People like me have put their condition into remission by fasting (properly).
Probiotics- High dose probiotics in an effort to balance the good and the bad. VSL #3 was recommended to me, but it's so expensive.
Low Dose Naltrexone- has shown to be somewhat successful with various auto-immune diseases including UC. In high doses it's can have negative side effects, but with a low dose, it's OK. It has been FDA approved for treating MS, so finding a doctor to prescribe it for UC is a challenge.
Worms- certain human parasites and pig parasites have been used to effectively treat UC. The worms actually turn down the immune systems activity. It's safe and has very little side effects, so natuarally it's not FDA approved. It's illegal to sell them in the US, but you can get them in Canada or Mexico, for a great deal of money. Or any third world country for free just by walking around barefoot near the water. If you don't think they are helping, you just take a pill that kills them off  in two days.
Fecal transplant- just like what it sounds. Someone with a healthy gut (and therefore good bacteria) donates some poo. It's mixed with water and shot up your butt. This has cured some people. Others not so much. I guess it depends on what caused your UC to begin with whether this would help.  

Dec 2010 -Feb 2011

It started out of the blue. Or should I say out of the red? I felt fine. But there was blood. Everyday. I first I thought it was nothing or it would go away. I felt fine anyway. Days passed quickly with the holidays and all. I made a doctor appointment but it wasn't until Jan. Blood continued everyday. I did some research  on the internet, but I really didn't think it would be anything serious.

My doctor confirmed that there was, indeed, blood. (duh) She did an exam and couldn't find any reason for it. Terrific, this means it couldn't be something simple like a hemorrhoid. She told me to see a GI.

I don't like male doctors. I found a female not too far and made an appointment. This brings us to the beginning of Feb.

I went in to see Dr. Martin. She, like all doctors, seemed rushed.  She confirmed my symptoms with me and the chart. She told me what she suspected (UC). She told me we needed a colonoscopy to confirm. I agreed, so we set it up.

 My Prep Fiasco

For the record, a colonoscopy is easy.  You get a shot, go to sleep, and wake up a little while later. No worries. Its the day before that sucks.You can't eat, which is no big deal, but  Dr M told me you have to have what they call a prep the day before. Its pills or a drink that turns your intestines into a water slide. Everything rushes out like a fire hose. But that's not the bad part. It's the pills/ drink you have to choke down to get the process going. She asked me which I prefer, the  2 liter drink I would have to down in less than an hour (twice). Or somewhere around 40 pills. I didn't know if I could take that many pills, so I picked the drink.

After looking at the size of the bottle, I was a little nervous about drinking that amount of liquid. I couldn't make up my mind, so I called the doctor back and asked for the prescription for the pills, too. Just in case. It's a good thing.
Never, never, never, never, never, never pick the drink. Thinking back on the worst things that ever happened to me this was the third worst thing. It was the worst thing I can imagine putting in my mouth. I would rather eat dog food, black licorice, liver....


So you fill this large container with warmish water, and mix in this powder. The container has 4 lines on it, and every 15 min you drink a portion. Well, I started to drink and gag. Fifteen minutes have gone by, and I am nowhere near the first line. And I can't make myself take one. more. sip.

So by now I am really behind schedule, because I have to have all of this done before a certain time, so it will have time to work, and I have to stop drinking before midnight. I run to the pharmacy and pick up the pills. By the time I get home, I am about an hour behind schedule. I start taking the pills, which was hard, but I wasn't complaining after that nasty disgusting salty sweet slime water. I just had a hard time getting all those pills down.

The Diagnoses

After the colonoscopy, Dr. M came in to say she suspected UC, but wanted a blood test to confirm. Plus she took biopsies, and needed the results. I went for the blood test right then, and we set an appointment for two weeks to unveil the diagnoses. Note on the blood test: only one lab in the country does it, and it costs $450. I am still waiting for my crappy insurance to kick in, but it looks like I am going to get stuck paying for it.

Now that I had a suspected culprit, I could start researching. So that's what I did. By the time I went back for my official diagnoses, I think I must have read hundreds of articles and forum entrees about UC.
I am not a doctor or an expert, but I did learn somewhat more that that pamphlet Dr M handed me when she told me I have UC.

And that was basically it. She rushed in and told me. She  immediately prescribed Predisone and Asacol. Told me that no one knows how you get this. Asked me if I had any questions as she inched toward the door. I asked about diet. She said I might want to avoid meat and maybe fruit in a shrugging sort of way. Then she said she would see me in 6 weeks.
Not.

Begin at the beginning...

and when you get to the end, stop.

I took Accutane years ago. It has since been pulled from the market because of dangerous side effects. But not after the company made Billions per year selling it. It has been connected with UC. I think it caused mine, since I have none of the other risk factors. Anyway. I have it and I have to deal with it.

UC is an anutoimmune disease. The autoimmune system overreacts to something and attacks the colon. Most likely an imbalance of bacteria. This attack causes ingflammation, blood, mucus, diarrhea, pain, cramps, urgency, and feeling like you have to go when you really don't (not the the same as constipation). I warned you this would be gross. Other effects are weight loss and fatigue. UC can be mild or severe.

I think I have been lucky so far. I can still got to work, ride my bike, go to the beach. Some people bleed their lives away in the bathroom 20 times a day or more.

First Post

I thought I'd start this to help keep track of my fight. That's what I feel like this is. A daily battle. But it's a battle where my hands are tied and I can't clearly see the enemy. Maybe there is no enemy. Just a very confused friend.