Random thoughts in front of my computer

So, I'm sitting here, close to 2 years later with this shi... of a disease wondering w.t.f.

To recapitulate, I'm on remicade max dose per six weeks, I take oral asacol, diet which consists of no gluten, no dairy, and food made in house with expensive ingredients. LDN, Supplements, probiotics, L glutamine, and most recently, Chinese Herbal Tea. Furthermore, I'm doing Chiro for close to a year, why? ...cause why not...it might help. I mean, what do I have to lose now, than just more money.

With all this crap that I'm doing, I am somewhat better than originally. My blood count is up and steady, I crap my pants regularly (well this part is not good but whatever), but I generally fell alright. Not good, but just alright. Still bleeding of course, but lighter than it used to. I think I attribute it all to remicade. I have to assume that doing a max dose of one of the heaviest meds on the market has to do something, right?

But still, w.t.f. is going on. With all the sh.... I'm doing, I should be in a rock hard remission right now. There's people on this board that aren't doing even half what I'm doing and are in remission. Secondly, I keep reading people saying, oh I just had a flare, or this month or that month makes me flare. How do you go from flaring and not flaring. W.T.F?!?!

I read about Gary's situation where he states, he goes often with urgency but no blood. How the f... does one go often with urgency but there is no blood. The whole point of this thing is urgency because of blood. Yet, he states there is no blood. I believe him.

Anyways, the point is, I read so much stuff on here and it just puzzles me. Why does an individual go in remission not changing anything then go in flare to subsequently go in remission again just as randomly. Yeeeet, I do all this gazzillion stuff to just to barely keep the bulk of this disease at bay.

I recently had YET ANOTHER colonoscopy by one of the leading gastros at Mc Master Hospital in Hamilton which he states that indeed I have U.C. but it doesn't look bad and should not reflect the symptoms I'm having. Shiiiiiiit, I even saw the video myself. It doesn't look bad. My symptoms act like it was double the inflammation.

Curiously, my white blood count is through the roof, lol. Not only that, I haven't had a cold of any sort of virus in 2 years.

I don't f... know what is going on. Why people go in remission randomly, why mine doesn't want to go in remission despite all the stuff I'm doing.

I'm sorry. We're there with you. Now almost year four and tried it all too. I don't know what to say other than people suffer with this for years and then sometimes it goes into remission and stays that way for a long time. I can only hope that will be you and us very soon. Or there's surgery...

Maybe it's possible you're actually overdoing it? Don't know. Just a thought.

killcolitis said...
I'm sorry. We're there with you. Now almost year four and tried it all too. I don't know what to say other than people suffer with this for years and then sometimes it goes into remission and stays that way for a long time. I can only hope that will be you and us very soon. Or there's surgery...

lol I refuse to do surgery "right now", because....because of many reasons.

One of many is the fact that my colon looks decent. I mean, you gotta be kidding me, I'm going to take out the whole thing when who the fack knows what small thing I need to do and go in remission forever.

I regard you as someone who tried a lot of stuff to fix your daughter. You seem very knowledgeable. It must piss you off to no end not being able to bring your daughter to remission. Heck, your brother has U.C. and I bet he doesn't even do half what you're doing to your daughter.

garylouisville said...
Maybe it's possible you're actually overdoing it? Don't know. Just a thought.

f...ing right I'm overdoing it. I got my permanent job by overdoing sh**t. I am a meticulous mother.f..., I see all angles, I do what is necessary to achieve what I want. I finished paying my mortage on my house in august and I'm 32 years old.

I didn't want to cut the gluten, cause I don't believe it to be the cause. But I did cut it;why, cause why the f... not. I'm willing to do even stuff I don't believe in

lol, I refuse to do surgery because I don't want to be beaten by an unknown bullsh..T. Maybe in time, I'll concede, but this situation irks me to not end.

killcolitis said...
Have you noticed any improvements lately?

not really, just coasting along....

funny when I read Iamagardener's signature. It says "I cut gluten and it 3 days the blood disappeared." Or Insofla's LDN protocol which claimed to be the thing to remove the blood.

lololol, It's been more than a year of no gluten and LDN, and there is still blood. what in the world is going on here.

With all the sh.... I'm doing, I should be in a rock hard remission right now.

Uh, no. There's no "should" about it.

Yeah. We've tried every diet almost and even paleo before. This time it's helping her - she flared a couple of weeks ago with norovirus but otherwise she was more stable than dx without pred. Who knows? I'm not preaching diet - just thought it might be worth trying a very severe version before crossing it off your list. If you don't want to do that, it might just take longer for your gut flora to improve (not according to the scd but?)
Here's an inspiring story - I have some friends whose son was diagnosed at age 4 with pancolitis. They didn't want to use meds and he was going 14 times a day. They managed to find somethings which made him better (taking out dairy and gluten etc) but he flared for 2 years going about 5 times a day. Eventually,with a lot of experimentation, he went into remission and he's now well. I know this since our kids were diagnosed at the same time and we've kept in touch through the process. So, maybe that is you - slowly getting better.

zucchini said...
Somedude, I am totally there with you.
It's been a couple of years now since I was diagnosed. I am a firm believer that I can do a lot of things without the help of scary drugs, but yes, sometimes scary drugs are necessary. It seems to me that if I jsut find the right combination of the right things at the right time, I can pull out of it.

I did bring myself into drug-free remission for a little over a year and then started bleeding this fall, after not really doing anything different. I have maintained a 100% gluten free diet for over 2 years now, tried going 100% grain free (SCD, GAPS, PALEO), grain and dairy free, chiropractor, Chinese medicine, expensive herbal remedies that have been shown to work for some lucky folks, etc etc etc.

So here's the funny thing that seems to be going on right now for me: I had been seeing blood in every one of my BM's since this past August. I immediately went into the "NO BLOOD ALLOWED" diet (cut out all grains, dairy, eggs, I haven't eaten sugar or processed foods in years, went full tilt into all of the cumin, turmeric, boswellia, probiotics, herbal stuff I could get my hands on... maybe a little overkill, but I was determined to STOP it before it got any worse. No change. Gosh darnit, so frustrating. So I went on vacation in FL for a couple of weeks in early January. I kinda said "to heck with all of this, I am going to do nothing, and see what happens." So, maintaining gluten-free and mostly dairy free because I already know those things do cause me some troubles, I stopped taking all supplements, I stopped eating red meat (not much of a paleo person, never have been), went for the low-gas/low-sulphur foods diet, ate chicken or fish most days, ate rice with most of my dinners, ate corn chips and salsa for lunch, chowed on lots of raw fruits and veggies, went to bed earlier than usual. I can't think of anything else I did differently. By the end of my trip, I was going poo only once or twice a day, and the blood seemed to diminish. Still blood in there, but less. How odd! So I have been home now since mid January and continue to eat rice and corn a few tiems a week, chicken and fish, fruits and veggies, sweet potatoes, no supplenents at all except L-glutamine and probiotics every morning and night, and I am going to bed a little earlier. Today I am happy to say I didn't see any blood. It's just so freakin' weird. I hope the trend continues, but I can't really say what is causing anything to happen, or not happen, it just seems so random. Maybe I just needed more sleep? Maybe the good bacteria has managed to gain on the bad bacteria. Maybe my body really likes to eat rice. ???????

So hang in there, keep trying new things, re-try old things, give it a little time and if you don't see a change, try something else. It seems like most people eventually figure out something that works for them, and I know you are willing to keep trying stuff, so hopefully you'll hit upon your "miracle cure" at least this time around...

Best of luck to everyone.

f... bullshaat this whole situation. no freaking rhyme or reason. grrrrr.

I'm sorry somedude. :( It makes no damm sense to me either. In the very least, you are in a constant state of turmoil, while some of us are scrambling around being "*** did I just eat?! How did it go from perfect one day, to bad the next!?" I get the pain and frustration. I'm done being upset and sad all of the time, and sometimes I find myself angry looking in the toilet after a bowel movement. Still, there's gotta be more you can check out to lower the inflammation...
TheDude, you have absolutely every right to not want to have surgery based on the fact that we all don't know what the issue is and by some slim chance, maybe there will be a way out. :( I'm with you there. You said you're persistent, and thats a great quality to have -- if you're up to it, trace back any evidence of your past medical history, including prescriptions, OTC use, diet and genetics even, see what you can come up with.

I'm trying to do the same right now, I posted a topic about using PPI drugs like Prilosec to causing our body's inability to produce hydrochloric acid (which breaks down proteins) and would otherwise normally output the Elastase 1 enzyme in a healthy pancreas, but because this isn't happening, allows an unfavorable environment in our digestive system that could invite pathogenic bacteria (like yeast, parasites, h.pylori etc) in our systems, causing food allergies and inflammation. But! This is very short-range that only may be a possibility based on the few red flags i found in my Metametrix testing.

Did you ever have stool testing done? to see your bacteria levels, possible infections, parasites, pathogenic bacteria, maldigestion, etc


Pathogen, are you saying you have done a colon cleansing in the past to rid your colon of the extra 'crap'?

Post Edited (stereofidelic89) : 2/3/2013 12:44:20 PM (GMT-7)

I havent bled in many many years now except when I tear during a bowel movement that has finally cleared a stricture. I remember how scary the blood was and never understand why nothing I was doing helped. ive always reacted badly to medicine. I think it is because one of my first intolerances is lactose. asacol has it.. pretty much everything does and if they dont have that they have gluten which I now react to. Maybe I aways did but now I finally realize it. So, I reacted to asacol but not high level just made me kinda crazy and in a flare but just a wee bit of blood in every bm...and I think opened up my leaky gut in my upper intestine.. but I digress... Pentasa doesnt have lactose but I still feel really badly on it and it causes me to get sicker. I think the lactose I already react to caused my body to be sensitized to the ASAs by proxy due to the lactose in the Asacol. Lactose was my first and has always been my most painful intolerance.

Anyway, all that just to say that the itty bit of lactose in asacol prevented me from getting well. I did maintain inflammation free remission with food mod and supplementation for 8 months, Im now dealing with the tail end of some freak inflammation.. no blood, just proctitis and constipation. Maybe the flu activating stuff that isnt already healed.

Its interesting that you never get sick.



stereofidelic,
Im *trying* to do a colon cleansing but my transverse colon is so prolapsed I feel like its like the little engine that could up out of my ascending colon and down to a dip in my transverse colon. When I was young my xrays always showed a full colon, when they opened me up the first time at 11 they took my appendix. Honestly, since Ive read the papers.. probably just to make sure they didnt have to come back in to get it. My colon was full and I have adhesions on my bowels to other organs and my pelvis.

When I was very sick I did enemas. I was able to work my way up to 1 gallon and that was what was needed to get down there and flush out the infection. I was able to get things moving with that and Oxypowder. First solid stools in years instead of the pebbles, ribbon consitpation or D.. but no matter what I do I never feel really completely "cleaned out" I just did an xray for the chiro and mfer.. there are the same pockets. I had some pass one time and it was absolutely the most foul smelling putrid thing ever.

my theory for me is a cascade. Ive got dysbosis all over my gut but until I help fix the prolapse some and get the stuff all out I dont think my immune system will stop reacting. I feel like there is bacteria and allergens/intolerance hiding in the matrix.

I did a couple colonics when I was having a bad obstructive issue years back and it really helped. but ive always been scared of them. I think Im going to try an actual series of 12. Its making the most sense for me right now.. obviously everyone's mileage varies but I feel like Ill never get rid of the inflammation and bad bacteria until I get rid of its home bases.

Post Edited (PathogenKiller) : 2/3/2013 1:28:55 PM (GMT-7)

Somedude,
I haven't had bleeding with my UC for at least a year or maybe more (not sure because issues with hemmies clouded the picture).

Anyway, I still had urgency and close calls until I started using slippery elm powder. My last colonoscopy in Nov. 2012 revealed that there was still some inflammation from the anus to the descending colon (40 cm).
I asked for and received a scrip for mesalamine enemas. Haven't used them in 5 years but willing to do anything to get rid of that last bit of inflammation.

I think I remember you being resistant to using enemas.
Am I wrong? If not, why not try them?

Please don't get discouraged now when you're making progress.
I'm looking forward to a post from you that says you can drive to work (or go anywhere) without worry.

Pred irritability alert. You have been warned:

Okay, this is what pisses me in a nutshell off about the, for want of a better word, 'alternative therapy' community: their assumption that they have the answers that nobody else in the world has besides them. Why? Why would they assume that? It does my head in. If the top minds in medical research can't figure out what's causing IBD/UC, why would you assume some hack with no credentials except a health blog on the internet knows any more about the etiology of IBD?

I've nothing against people experimenting with diet and supplements until better treatments are found, but I do have something against thinking you have cracked the problem of IBD already. You have most categorically not....