Untreated Ulcerative Colitis

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titleist3
New Member


Date Joined Sep 2013
Total Posts : 1
   Posted 9/5/2013 10:27 AM (GMT -7)   
I was diagnosed with UC 5 years ago and none of the prescription medications worked. Shortly after being diagnosed I was in remission (after stopping all prescription treatment) until a few months ago. The only symptoms I experience are bloody stool and occasional urgency to go, no pain whatsoever. Every movement I have, at least twice a day, there is blood involved. Since I've not experienced success with prescription drugs I was wondering what would happen if I just continue on untreated and hope it goes back into remission. Any advice would be appreciated.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6980
   Posted 9/5/2013 10:38 AM (GMT -7)   
The biggest risk of leaving it untreated is a higher risk of developing colon cancer. You should be sure to have very regular colonoscopies.

What all meds did you try? There might be new ones that weren't available 5 years ago.

Did you try probiotics, diet modification, or other natural treatments? You'll find a lot of suggestions on here for treating UC w/o Rx meds.
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child; diagnosed with pancolitis in Jan. 2009
Second child born March 2013; no post-partum flare up thus far.
Meds: Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic

soystud
Veteran Member


Date Joined Jan 2004
Total Posts : 5579
   Posted 9/5/2013 10:45 AM (GMT -7)   
well obviously doing nothing doesn't seem to be working that great, so you should be doing something - maybe try the things fgirl suggested - sounds like good advice to me -
diagnosed with pancolitis december 21, 2003
1 year no MEDS
currently supplements: -- vit D, cal/mag, Primadophilus Reuteri & GOL Raw Men, Wild Harvest Inflamma Shield -
No Gluten, Rice, Corn, Soy or Sugar - Just good, healthy food -
Lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with -

protocolteck
Regular Member


Date Joined Mar 2013
Total Posts : 338
   Posted 9/5/2013 10:57 AM (GMT -7)   
Agree that probiotics and diet mod can do wonders. Also, UC meds never worked for me. I might also suggest Wild Oregano Oil as it cleared up my blood and mucus very quickly and effectively.

Check my situation out here: http://www.healingwell.com/community/default.aspx?f=38&m=2835269

Best...
Male, 45

VSL#3 1/day
NO RX UC/UP Meds
SF/Spinach Diet started 3/11/2013. Added Resistant Starch 4/14/2013.
Ulcerative Proctitis since 2/2012
Gluten Free since 12/1/2012
Mountain Runner and Level 2 Crossfit Athlete
Wild Oregano Oil
Circumin
Organic Wheat Grass
Chia seeds/Psyllium Seed Powder
2400 mg Sodium Butyrate

Julie Mariah
Regular Member


Date Joined Aug 2013
Total Posts : 104
   Posted 9/5/2013 11:16 AM (GMT -7)   
How would I start wild oregano oil?
_______________
UC, universal, Feb 2013 ( symptoms std. summer 2012)
Meds: 2 fiber con, Calcium w/D, folic acid, Vit C 500x2(macular degeneration) Lexapro 10mg,
SCD diet std. 8-22-13, no gluten, no dairy, very little sugar
Took 4 Lialda/pd, 6mos. wasn't helping symptoms, keep trying it, seems to make symptoms worse, urgency, etc.
Prescribed Prednisone, haven't taken, afraid of it

DMC2011
Veteran Member


Date Joined Jul 2011
Total Posts : 1118
   Posted 9/5/2013 11:34 AM (GMT -7)   
I am thinking that if the meds i land on tomorrow do not work i might reset my system to no meds and just go holistic to, just to see. I only had mucos and no blood untill i stared colizal. Then all hell broke loose

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 7151
   Posted 9/5/2013 12:53 PM (GMT -7)   
I can't help but think that the prescription meds you referred to as not working actually did indeed work. You said you were diagnosed, drugs did not work, you quit them, and went into remission. Somewhere in there something just doesn't sound quite right. If you were going to go into remission by not taking any meds then why didn't you go into remission all by yourself before starting meds? It was only after you took meds and then quit that you claim you went into remission. What meds had you taken?
Asacol 800mgs 1 pillsX3; VSL#3 112.5mgs 1 pillX2; Prescrip Assist Probiotic 1 pill X 2;Vitamin D3 5000 ius 1 pillX2;Bentyl;DAO;Folic acid

Discontinued: Robinul; Natural - peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Imodium, Beano, Lactaid;Zymactive, Renew Life Probiotic 80 billion, Florastor, DGL, Monolaurin, slippery elm;black cherry concentrate

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18191
   Posted 9/5/2013 1:41 PM (GMT -7)   
Everyone's different...my mom had UC for 20 years left untreated and she died of a brain aneurysm...colon cancer is a risk for those with long term inflammation in their colon, but it's still a very small risk.

If you can't take the meds (like myself and my mom) then there's really nothing you can do to change that, if you're allergic or unresponsive to them it doesn't mean you'll get colon cancer as a result of leaving it untreated, besides which, IBDers have a much greater chance of colon/rectal/anal cancer being detected for the simple reason we go in for more frequent and regular colonoscopies compared to the general public that doesn't have bowel issues.

I too have had my crohn's colitis untreated for the last 22 year (with the exception of being on pred a handful of times over the years before it stopped working too) and no colon cancer so far.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

jc1973
Regular Member


Date Joined Feb 2010
Total Posts : 269
   Posted 9/5/2013 1:57 PM (GMT -7)   
So I guess the only thing I would say is that flares tend to get worse over the years.
 
I was DX'ed 4 years ago... but in hindsight, that wasn't my first flare just the first flare that brought me into the GI.
 
And now, the flare I am having is far worse than the one 4 years ago. Of course... I have been taking meds all along so.... not really sure what kind of endorsement that is for them. :)
 
 
DX Moderate Pancolits 7/2009 - fairly stable til 2/2013 on 6 lialda/day
Currenlty in bad flare.
Current meds: Started Remicade 9/3/2013, Lialda 4x, Prednisone 20mg (tapering), Hydrocortisone enema (nightly), canasa, hyoscyamine
Previous: Asacol, Apriso, Rowasa, Slippery Elm, Cat's Claw, Various vitamins, Probiotics (all seem to give me D)
Diets: Tried Gluten Free, Dairy Free, SCD

soystud
Veteran Member


Date Joined Jan 2004
Total Posts : 5579
   Posted 9/5/2013 2:04 PM (GMT -7)   
thanks pb - it's nice to hear we're not all gonna die from colon cancer - zombies scare me !
 
 
 
 
 
 
 
 
 
 

soystud
Veteran Member


Date Joined Jan 2004
Total Posts : 5579
   Posted 9/5/2013 2:06 PM (GMT -7)   
"So I guess the only thing I would say is that flares tend to get worse over the years."


not always -
diagnosed with pancolitis december 21, 2003
1 year no MEDS
currently supplements: -- vit D, cal/mag, Primadophilus Reuteri & GOL Raw Men, Wild Harvest Inflamma Shield -
No Gluten, Rice, Corn, Soy or Sugar - Just good, healthy food -
Lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with -

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6980
   Posted 9/5/2013 2:11 PM (GMT -7)   
Yeah, me and my four years of (medicated) remission don't think that UC meds are a waste of time. Nor do I think that mesalamine is poison.
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child; diagnosed with pancolitis in Jan. 2009
Second child born March 2013; no post-partum flare up thus far.
Meds: Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic

soystud
Veteran Member


Date Joined Jan 2004
Total Posts : 5579
   Posted 9/5/2013 2:12 PM (GMT -7)   
watch out woof, our mods are experts at rolling up newspapers !
diagnosed with pancolitis december 21, 2003
1 year no MEDS
currently supplements: -- vit D, cal/mag, Primadophilus Reuteri & GOL Raw Men, Wild Harvest Inflamma Shield -
No Gluten, Rice, Corn, Soy or Sugar - Just good, healthy food -
Lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with -

SouthernGirl6
Regular Member


Date Joined Dec 2012
Total Posts : 396
   Posted 9/5/2013 3:13 PM (GMT -7)   
I read on one web site that cancer risk is only elevated when the entire colon is inflamed...not sure if it is true.
Black cherry concentrate
GNC Be-whole Vitapack
29 years old and have had UC 14 years

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18191
   Posted 9/5/2013 4:01 PM (GMT -7)   
Fact is, the meds don't work for everyone and many have allergies to them, if those are the cases then you can't take them, plain and simple, but it doesn't mean you'll be struck with some type of GI cancer...based on what I've learned, the longer you have inflammation in the colon without a break (10 yrs or more) the slightly higher the risk for colon cancer is there but that said, cancer is not necessarily going to happen even under those circumstances.

As far as flare severity goes, researchers have found a cluster of genes that play a role for each persons IBD's behavior and severity, that is something none of us can control. That is also likely why many that take their meds religiously still flare, there's only so much anyone can do.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

DMC2011
Veteran Member


Date Joined Jul 2011
Total Posts : 1118
   Posted 9/5/2013 4:13 PM (GMT -7)   
It seems to be hit or miss. I was using colizal and Mesa ennies for at least two years with pretty good results. The colizal gave me headache so I was Dow to half dose then the ennies started not working. I was having maj flare so the more I took the worse it got. Now I am on day two Apriso And week two steriod ennie. A week ago I took flagyl and that helped.

jc1973
Regular Member


Date Joined Feb 2010
Total Posts : 269
   Posted 9/5/2013 6:52 PM (GMT -7)   
soystud said...
"So I guess the only thing I would say is that flares tend to get worse over the years."


not always -

Which is why I said tend... not they do.
DX Moderate Pancolits 7/2009 - fairly stable til 2/2013 on 6 lialda/day
Currenlty in bad flare.
Current meds: Started Remicade 9/3/2013, Lialda 4x, Prednisone 20mg (tapering), Hydrocortisone enema (nightly), canasa, hyoscyamine
Previous: Asacol, Apriso, Rowasa, Slippery Elm, Cat's Claw, Various vitamins, Probiotics (all seem to give me D)
Diets: Tried Gluten Free, Dairy Free, SCD

Guardian7
Veteran Member


Date Joined Apr 2006
Total Posts : 2090
   Posted 9/6/2013 4:58 AM (GMT -7)   
Don't let members hit you with the colon cancer thing. If no meds were working out great for you, find out what modifications you made in your diet, lifestyle and such that caused the bleeding. Many here have gone into remission without medications - it's just a matter of figuring out what's agreeing with you.

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4686
   Posted 9/6/2013 5:10 AM (GMT -7)   
Titleist,
 
Welcome to the forum.
 
Some meds work for some and not for others.
For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.
He also told me diet has nothing to do with UC, but I found that it has a great deal to do with exacerbating its symptoms!
I found that by doing these things it helped control my symptoms by 75%:
1) adequate high intake of vitamin d3 ( need to get your levels checked first)
2) probiotics are key, are you on any?
3) slippery elm powder to coate the intestinal tract helped greatly
4) l-glutamine amino acid powder for long term colonic repair
5) food combining
6) diet modification as in gluten and dairy free
7) rectal meds help lots of folks out
The Last 25% was taken care of by LDN, low dose naltrexone, which put me in remission.
If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.
I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.
For more info on the protocol which has put me into remission, please go to this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.
I hope you feel better and let us know how we can help you.
 
 

Rx meds didn't help me. But 4.5 mg LDN +Paleo diet +supplements=REMISSION.Protein shakes w/almond milk,Maca powder,L-Glutamine,D-Ribose,chia seeds.VSL#3,K2,VIt. D3,slippery elm bark powder.For more info,my protocol is the 11th post at this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318
If you have any questions, you can find my email address at my profile.

DMC2011
Veteran Member


Date Joined Jul 2011
Total Posts : 1118
   Posted 9/21/2013 11:07 AM (GMT -7)   
OP what did you decide to do? Hope all is well,
Left sided dx. 2011
Current med: Apriso and cortenema
Supplements: vit d, l-glutamine, multi, fish oil, turmeric, probiotic
Past meds: colizal, Melamine
Diet: no lactose, low fat, low sugar, lean protein, no uncooked veggies or fruit, no soy or fake sugar, no alcohol

Canada Mark
Veteran Member


Date Joined Jan 2013
Total Posts : 2411
   Posted 9/21/2013 12:13 PM (GMT -7)   
@InSoFla

Are you still taking threonine every night?
Diagnosed Crohns-Colitis about 8 years ago - Past Meds: Antibiotics, Prednisone, Methotrexate, Remicade - Current Meds: No meds at the moment -Trying Amino Acid Balancing Therapy Actually achieved full clinical remission for about 2 years using Remicade, Diet (SCD) and Exercise

“The only person you're destined to become, is the person you decide to be"... wise words

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4686
   Posted 9/21/2013 12:39 PM (GMT -7)   
Yes I am.
Why are you asking?
Rx meds didn't help me. But 4.5 mg LDN +Paleo diet +supplements=REMISSION.Protein shakes w/almond milk,Maca powder,L-Glutamine,D-Ribose,chia seeds.VSL#3,K2,VIt. D3,slippery elm bark powder.For more info,my protocol is the 11th post at this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318
If you have any questions, you can find my email address at my profile.

Canada Mark
Veteran Member


Date Joined Jan 2013
Total Posts : 2411
   Posted 9/21/2013 1:04 PM (GMT -7)   
Just Old Mike brought it up last night and I was curious.

I got to thinking about being normal one day, then all of a sudden not normal... And over time the more and more I think about, and read, and listen to others about food intolerance and being all over the map it seems to me that one thing stands out pretty good - an inability to digest certain proteins - not so much carbs, but the proteins in carbs and such.

I stumbled upon an article this morning which states this "All plants produce the enzyme threonine deaminase, or TD1. Howe's research focused on potato and tomato plants, which also have the ability to produce a closely related enzyme TD2 when attacked by caterpillars. Rather than repel caterpillars, however, TD2's devastating effects come later -- in the pests' stomachs. TD2 goes to work in the gut of caterpillars to degrade threonine, a key nutrient they need to grow. In essence, the plant actively starves the caterpillar." - www.sciencedaily.com/releases/2011/03/110329151456.htm

So maybe a deficiency or type of enzymes (or lack thereof) is causing some issues. Not necessarily the enzyme mentioned above, but perhaps something similar that degrades threonine.... causing the need for increased consumption.

Have not thought it through much yet - but have just stumbled on something else related : Meprin (an enzyme involved in the breakdown of protein)
Enzyme involved in inflammatory bowel disease discovered: phys.org/news163159904.html

So I was curious as to how much you thought Threonine was helping you.

Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 916
   Posted 9/21/2013 8:10 PM (GMT -7)   
Keep working Canada Mark...you too Old M
ike. All sciencey and goodness. Figure this out for us to take to our researchers! Who even needs researchers at the rate you are going. Thanks.
Daughter, 20 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Cortifoam enemas, 6mp,Colazal,Rowasa,PPI'S , Flagyl, Prednisone- 60 mg to 0, 6 major flares '08-09. Diet not directly impactful.
Remicade 5mg per kilo@ 7wks, since 10-08. Dose adjusted several times. Remission. 4-09 to 7-13. Simply Stopped. Trying to regain remission with Tacrolimus.
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