Somedude's random update

I guess, I should give an update on my case. If anyone cares....lol

I'm not doing too good, however my blood tests last week were positive. My blood levels were well above anemic almost normal so that's good, my inflamation marker wasn't that good but was worse before. I want to give you numbers but I forgot.

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As for my protocol diet/meds:

I'm on Remicade 10mg/kg (640ml) every 6 weeks. I would say it works at 40% efficiency for me. I still have blood in my stool.

I'm on a strict SCD diet for the past 2 months. I say strick because before I was on a similar diet but less strick.

I'm on LDN (3mg) oral, that doesn't seem to do anything. Whatever, I paid for it, I'll keep taking it.

I tried Asacol for 3 months straight, didn't do nothing.

Now, I'm going to try Colazal and Aza something.

I use solafalk enema ever so often, but can't hold it for long.

I'm taking double dose of theramine clay, 1 in the morning and 1 at night...doesn't do nothing colitis wise.

I'm going to try the L-something something that insofla suggested.

I'm also taking a gazzilion suplements, too long to name them all, they don't seem to do anything.

I tried VS3, now on Dr. Ohhria (spelling) probiotics, I tried Ultimate Flora ..I'm going to try Mutafor

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I am going...let's see about 10-12 times a day or more sometimes....or less.

 3 or 4 of those is skinny barely formed poop (it looks ljagged, like cookie shapped, weird to discribe, it definatly doesn't look like logs to me lol). The other times, I have to pass gas with a tiny bit of stool. And for the iceing on the cake, they all come with blood. A bit less, a bit more.

I'm going to continue with this diet since I'm used to it for a few more months. I also have another colonoscopy scheduled pretty soon, to see where were are.

I don't know about you guys, but I'm been flaring like this for the PAST YEAR MAN!!!!! and I still work full time baby. Give me a freaking medal here! I had a transfusion a few months ago cause I fainted in the bus.

In any case, if I can't find my remission, I will have to have surgery. Unfortunately, boys and girls, I can't keep going like this (well I could), I fear I'll end up in a mental institution. lol + I have other life priorities I need to take care of. I have only 1 life, I can't spend it looking for the elusive remission.

 

Oh, I'll keep trying, but I can gurantee you I ain't doing 5 years like this. It's going to destroy me mentally.

My Gi won't prescribe Humira to me. She says it's for Crohn's patients mainly, she wants to but according to her, not allowed. I'm in Canada, btw.

My GI is reluctant to prescribe it as well but I think I can twist his arm to let me try it. My insurance company will approve it because there is documented evidence of trials and near approval by the FDA.

My Doctor has me go for remicade every 4 weeks. Is that an option for you?

Hang in there, I have been in a flare for 2 months and feel like ripping my hair out! I can't imagine a year! Keep fighting and i hope you find something that works SOON!

Hi Somedude,

Maybe try just doing the essestials, medication and b-12 supplements and then add back in this in a couple of weeks. Maybe your system is on overload with the supplement? I don't know I would try clearing out some of these and just doing basics for a while.

 

Miracles,

Well my B-12 is well within acceptable ranges, according to the G.I.

Fla,

Hmm, my food combining should be okish?!....I mostly eat meat and steamed stuff. But really, I'm not the expert when it comes to food. All my food is bland and takes like crap. For me, food, has become a medication in itself.

I can ask the individual who prescribed the LDN about the filler. You could be right about transdermal, but I CANNOT get it prescribed. The dude that prescribed it to me, he was actually selling it in the naturo shop. He only had the pill version. He said, he had trasdermal before, but it was not popular so he discontinued the shippment.

I then asked for a written prescription so I can send it to skips. He refused...I wasn't going to start anything in his office about that.

YES, where is the wand?!?!

Banana, why is it that we don't improve?!

I hate giving up on my colon. I hate removing an organ which there's nothing wrong with it in itself. It just gets attacked by a bully (my immune system). So instead of dealing with the bully, we take out the victim. ***

If I take out the colon and a cure comes in the next 5 years, I'll never be able to forgive myself. If the cure never comes, I won't have any regrets. I hate having to gamble with my body. I prefer to gamble only in poker.

Post Edited (Somedude) : 6/25/2012 3:26:07 PM (GMT-6)

ByeByeUC said...

Somedude said...
Banana, why is it that we don't improve?!

I hate giving up on my colon. I hate removing an organ which there's nothing wrong with it in itself. It just gets attacked by a bully (my immune system). So instead of dealing with the bully, we take out the victim. ***

I always wondered why some people can pop a few Asocal and be totally fine. Then there are some of us who just can't get it under control.

Two years ago today my rotten, no good colon was removed and I haven't looked back since. I saw pics of my colon after it was removed. I cannot believe I lived with that thing in me like that for 5 years!

I hope you can find something that works for you Somedude. I highly doubt there will be a cure for UC in the next 5 years.

Yeah w.t.f, there's a fat guy at our work place. Get this...he has diabetes and wears that machine on his belt, which has a tube stuck to his stomach. (He showed it to me, I was like Not only he has diabetes, he has U.C. He takes like 9 asacol pills per day, and says to me that his colitis is of no concern. And I saw him eat, he eats worse than me PRE-UC rofl.

Marianne, what is going on here!!!

Somedude and bananagirl,

I think you both need to be on 4.5mg of LDN.

Skip had told me that is THE dosage to be on for UC, and to give it 6 months.

But since you are both on pretty strict SCD diets, I think you should see some results within a few weeks - at the therapeutic dose.

Keeping my fingers crossed for both of you.

 

Somedude,
You are certainly giving it your all to fight this disease. I don't have any advice on what to do next but just wanted to send out some good vibes to you and your colon. What doesn't break you will definitely make you stronger so hang in there!

Sibby,

Mostly it's the 4.5mg dosage at night.

However, there are some who are experimenting with splitting the dosage - half in am, and half in pm.

I would only recommend experimenting with it that way, IF you are already in remission.

Because the researchers have discovered that it is the full dosage required at night which does the immune modulation.