been a while

Nothing new to post really. I have not seen any symptoms for a while, other than occasional "twisty guts". Went back to work this week and under a lot of stress, so I will see how this effects me. Have added a few more raw fruits/ veggies to my day and cut back on probiotocs because they are so expensive. Now its just wait and see what happens.

Good week. No blood.

Dr K

Saw the doc yesterday. He wants to check my iron again in six months.He was also pleased that my CRP blood test did not show inflammation. He said that means this probably won't spread. Didn't mention the scope thingy, but of course wanted to do a manual check. I said no. I told him I had my period, but I really just didn't want to do it. Cause I didn't want to hear him say there is blood, when I know in my heart it if from the actual test that he just did, but I can't prove it. No more stuff stuck up my butt, because I believe it just irritates the skin and causes more bleeding. That's what it feels like to me.
Anyway, I need to not read the forums so much. I have gotten useful info from them, but there are a lot of horror stories, and they are scary.

never ending

Blood
i saw it
the test showed negative
so now how do i trust the test?
just one more stressful thing

my kids don't believe in God, we've failed as parents to teach them the one important thing
this makes my guts bleed- being good examples don't work, and so called Christians have pushed them away with their judgments
so how do i be happy for the rest of my life knowing this? how do keep this out of my guts? it's like watching your kid smoke, and it tears you up inside
another thing is the in-laws and their conflicts...could she please just call and get this over with?

another thing is money...it seems like every day it gets harder and harder...paycuts, losing my benefits and retirement.. no steps...i think that is what started this
years of fighting for a decent living and getting nowhere
and now this uc is making me spend so much extra on supplements and organic food, not to mention the juicer
my dad is sick
my mom is sick
my dog is old
i hate where we live
our houses are not worth half of what we owe on them

let me go ahead a list good things
my husband
that my health isn't so bad that i can't ride or go to the beach or live my life

Well...

Things have actually been going pretty well. Haven't seen blood in a while. Didn't start the medicine yet. But I did up the VSL to 4 packs day. Really expensive :(
So here is what I have been doing:
1. Diet - Following Dr Furhman's autoimmune protocol for IBD- slowly added back a small amount of fruit and some beans in soup, green juice twice a day
2. supplements-
Gentle Care multivitamin (without vit A or folic acid)
Iron- I'm still low
Zyflamend - anti-inflammatory (turmeric)
High dose EPA (fish oil)- immune suppressant
Four packs of VSL - probiotoc
Primal defense- probiotic
3. fasting- completed one 4.5 day. I plan to do 3-4 days a month

Doing these things has made 99% of my symptoms disappear. I can't say 100% because even though I can't see the blood, it may still be there. Also, I still don't feel "right". It's subtle, and then again, maybe I am just paying too much attention to bathroom events.

still searching

My colon is weird. I don't know whats bothering it, or how to find out, so I can fix it. I feel like the probiotics are helping, but I think I'm still missing something. Maybe over exposure to pesticides due to all of the not-organic produce I eat? I'm going to start buying organic as much as possible. But it's probably too late. What else? I've heard of parasites, c-diff infection, yeast, accutane, stress all as possible causes, when added to a compromised or somehow damaged immune system.I feel like the answer is just out of my grasp, like something you can see out of the corner of your eye, but when you turn to look, its gone. I have to find the cause. I can't just hide this with drugs while the cause is still there making it worse.

Well. I haven't seen any blood for two days. Doesn't mean its not there. If fact, I bet it is. But at least it's less. I wish I could get those test strips the doc has. Can't buy them anywhere on the internet. Amazing...you can buy anything from a diploma to illegal drugs, but you can't buy those freaking test strips they use in the doc's office to check for blood. Next time I am waiting in the office forever, I am going to boost some.

random thoughts

I need to go back to the doctor and get a letter stating that I need iron and probiotics so my Flex dollars will pay for them . The VSL is soooo expensive. I also filled the prescription for the Rowasa, but I changed my mind. It hasn't been 6 months yet, anyway, andI'm not getting any worse, so I don't want to rush to get on drugs. The medicine dosen't fix you anyway, it just hides the problem. Then it may get worse, and you won't even know it. I would rather try the LDN first. I didn't bring it up last time. Stupid me. But I will next time.

:(

blood EACH DAY

well...

I think I'm getting better..without the medicine, yet. I said I was going to give this 6 months and it's been 3 so far. I did fill the prescription for the rowasa, but reading the side effects makes me not want to use it. I'd rather try LDN first if I have to use something.

been a while

Well, things are moving slowly after the fast. To soon to tell about the progress really. I was reckless yesterday with eating. Had some fruit, well see how my colon feels about that today. But it was really good. :)

Done

I fasted 4.5 days. Felt OK. Just weak and slow. I did ask Dr. F, and he said 3-5 days once a month, followed by careful eating might keep the UC in control. I just didn't feel comfortable fasting longer without doctor supervision, cause I felt dehydrated and I can feel my heart beating. Anyway, for a few days it will be steamed veggies and juice. Then start adding foods one at a time to see how my digestive and autoimmune systems feel.

Day 4.5

Well, I am halfway through with day 4 of the fast. I don't feel too bad, just a little weak. Not normal at all. I just want to lay around. I communicated with Dr. Furhman through email, and I have decided to try 5 days, instead of longer. Imma try 3-5 days on a monthly basis, since longer fasts require medical supervision, which I don't have. So I just have to get through the rest of today, and tomorrow.

bones

Here I go. I'm starting my fast today. Let's see how long I can live without food.

confused but hopeful

Went to the new doc. I like him. He listens. He said continue what I am doing but wants me to add a mild anti-inflammatory call Rowasa. Not in oral format. Just shove the stuff up you know where. And he ordered bloodwork. I'm glad for that. He also wants me to take more probiotics.
I haven't started yet. I want to research first and I will begin my fast on Friday anyway. Don't want to do both at once. I also want to get an at-home kit for checking for blood, cause lately the blood has been so little its been hard to see. If the fast works, I will slowly start adding food and supplements and I want to make sure.

wow

OK, despite the fact that my insides have been twisty since yesterday afternoon, I went to the bathroom today and saw no blood. For the time in months. Doesn't mean there was no blood. Could have been not enough to be visible. I'm not going to get too excited because my belly still hurts. And I don't want to be disappointed. Let's just wait and see...

twisty

Wow
I got home from work yesterday and my insides started hurting so bad. Felt like someone was squeezing /twisting my intestines or maybe the worst gas ever. I didn't eat food at work, so maybe that was the problem. I don't know, but it went on in a bad way for about two hours. I forced myself to eat something in case that was the problem. It did settle, but not right away. It's better now, but still a little twinge-y.

Dr. K

I'm making an appointment with a new doctor today. He's the one Ang talked with. He read all of my records and wants to see me ASAP. We'll see how it goes.
On the other hand, I was naughty. I ate some steamed collards last night. Wonder if my guts will explode today?


Edit: Nope they didn't explode. And I have an appt. w/ Dr K next Monday

I'm really thankful that I have a mild case. I hope that doesn't change in the future. I went to the Ulcerative Colitis forum on healingwell.com and read some of the horror stories of this disease. Scary. The medicines are worse than the disease in some cases. But people have no choice. The medical community really has no idea what causes this or how to fix it. They treat symptoms with horrible drugs, or they just cut the colon out.
I need to go for a ride.

update on me

Terrible stress at work. My friend and co-teacher is leaving :( And we are all taking a 7% paycut (when you calculate the loss of benefits and pension)

On the plus side, I think I am making progress, or at least not getting worse.
I am now just having blood. In drops which is new. But everything else looks normal. This is so hard to write about without being graphic. Since no one reads this but me, I might just go ahead and write the real words. I'll think about it.

May 10th

The last two days have been pretty good. Hope this pattern continues.

the doctor's view

Ang talked to a GI (friend of a friend). The doc says that most GI's don't spend any time with UC patients cause we take too much time to figure out, and there is no cure anyway. So, they know if they toss predisone at you that will get rid of the symptoms and send you on your way. Not their problem if it gives you organ damage, cancer, diabetes, or osteoporosis. They have no incentive to find out what is causing the UC cause the health insurance only pays them $35 per patient, and they need to see as many as possible in the day.

Cinco de Mayo

I want my life back
FUCK FUCK FUCK

may 3 - thoughts and notes

Well I am still going on. Things are maybe getting better, or at least slowing down.

I keep reading and reading and finding lots of new/ contradicting information.

Yeast- some people may have yeast problems causing or irritating the UC

Bacteria- It seems that scientists have recently discovered that everyone, sick or well, falls into one of three categories relating to their types of bacteria - great- how in the world do you know which one you are which probiotic you should be taking to help

The American Journal of Gastroenterology has lots of interesting articles, but you have to pay for them :( silly me I wish there was someplace to buy old issues or just borrow them

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.