After 38 years the blood has stopped

Definitely interesting.....hope it continues.
q

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*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
~Sjogren's (secondary)...symtomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!

Sounds good, but just a word of caution ... no visible blood doesn't necessarily mean no blood as I have recently discovered.

How in the world have you managed with bleeding for 38 years?? I feel like such a wimp. I have had what I though was minor bleeding for 10 months (though the last couple weeks I didn't see any blood) and was admitted to the hospital on Friday after nearly passing out during an echo cardiogram and they discovered that my hemoglobin was extremely low and I needed a blood transfusion.

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59 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission since 10/16-12/17, confirmed by scope in Dec 16. Current meds: Entyvio 7/22/16, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant. OTC: Loratadine 1/day, multivitamin 1/day. Minor flare since 12/17. Started 4 wk Entyvio infusions on 8/3. Tapering predinsone, steroid enemas

Ha: Soystud, always love your comments.
CC:
Yea I know about occult blood, let me put it this way.
I am not dripping,or shooting blood anymore, and don't see any on stool or TP.
Yea am anemic.
My #2 son never saw red blood, yet he needed a transfusion.

Why I am still here or still have a colon since 1980 don't know, perhaps it is the smoking.
I think I remember reading somewhere that smoking prevents distal UC from progressing
up the colon.

If this continues and I go into deep remission, I will be thrilled.
I am also know as poppopmike, therefore I need to hang in for another 20 or so years, I promised
my one grandson, I would treat to a drink on his 21st birthday, so that would put me at about 86, and
we have a new one on the way, in about 2 months. Fat chance,wishful thinking, but gotta give it a shot.

PS: As an experiment I just tried to force blood out. Nothing,nada,Zero,zip,zilch.
Oldmike

Post Edited (Old Mike) : 10/14/2018 10:43:47 AM (GMT-6)

Wow, you are an inspiration Old Mike! I am new here, have had UC for three years and have always had bleeding. The fact that you have been going through this for 38 years is unbelievable!

I have a question: Do you take probiotics along with the olive leaf extract, since its supposed to kill bacteria? or have you been just taking the extract?

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Diagnosed with indeterminate colitis in Oct 2014. Currently on Mesalamine enemas during night, canasa during the day and 2400 mg of Oral Mesalamine (Lialda). Slowly moving towards remission.

Took steroids for 3 months, but the symptoms came back after tapering them down.

also taking VSl #3 and L-glutamine.

Congratulation!!! 38 years of bleeding, you are hero I could not do that ...

When did you have last colonoscopy?

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==========================================================
Ulcerative Colitis for 34 years. 14 years ago sigmoideum adenocarcinoma - surgery successful
==========================================================
Salofalk 500 mg - 2 tablets, Mirtazapine 15 mg, Magnesium, Psyllium, Probiotics, in remission
==========================================================

Excellent news!

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43 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 4 Lialda (sfRowasa when needed)- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

Never had a C scope.
Ok here is the complete story.
Korea 1971 I was 23,got a bad case of the Korean burning craps for about 2 weeks. One day I felt something
tear, and it burned for about 3 days. Did not think much of it at the time,but it was I guess a small abscess,which went away. Get home early 1972, sometime spring 1972 got a big abscess needed emergency surgery,with rubber seton to heal, it closed up. 1974 got another, surgeon popped it with a scalpel. It never healed right so now I have a fistula track. Quit smoking 1977. Sometime in 1980 start bleeding, with D, the whole nine yards.
Go to old fart proctologist, gives me a rigid sig scope, yep 6cm inflammation,could not loo\k past 13cm.

He had me come in once a month or every 2 months to be scoped. So by 1982 could not stand it anymore.
Azulfadine I think 8 a day, worked for awhile, then not.
Started to smoke again, bleeding stopped.
Quit again 1986, started to bleed, started smoking, this time no effect.
So here I am 2018,back in 1982 swore to myself I would never be scoped again.

Been researching the disease, since 1980.

Like I said don't do what I do, get scoped and take your meds.

Old Mike

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UC-1980, same flare since 1986. Still smoke. MEDS: None
SELENIUM for GPx, Zinc,NAC, glycine up to 10 grams a day, for Glutathione. Folate,B12.
SOD makes me worse. Why. Makes too much hydrogen peroxide from superoxide,
then not enough GPx and catalase to convert to water,then makes hydroxyl radical.
Curcumin-Thins my blood too much.

Maybe you finally ran out! Joking, joking... this is good news, congrats!

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Female, 52, Vancouver BC
Pancolitis: Currently in remission

Jan-Mar2009: Asacol HD. Resulted in severe joint pain and no discernible benefit.
May26-Sep4/2016: Mezavant 4800 mg
Sep5/2016 - : Mezavant 2400 mg

Mike,
Actually I tried something similar 20 years ago. But I ended up with totally different outcome.
At that time I was convinced that the real cause of my UC was in my mind.
I thought that my general emotional instability, my fears an anxiety triggered my relapses of UC.
So I decided to give up meds, doctors and c-scopes and started to work on my psyche.
I tried variety of approaches: relaxations, meditations, joga, CBT, psychotherapy...
I tried alternative medicine as well. I even made homeopathic tinctures myself.
I tried herbs, probiotics, supplements and so on. I kept doing this for several years.

Then I got Lyme disease. I felt really sick after antibiotics therapy in hospital.
I was not sure if it was due Lyme disease or UC. So I decided for colonoscopy.
Doctor found 7cm carcinoma in my colon. It was shock for me! I thought that
this was not gonna happen to me. I was convinced that I was on way to cure myself from UC.

Fortunately this story has good end. Surgery was successful and I lost only 10-15 cm of my colon.
Since then I have been using maintenance dose of 5ASA all the time. And I hope I will be able to
continue taking 5ASA for the rest of my life 5ASA have decent anticancer effect in colon.

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==========================================================
Ulcerative Colitis for 34 years. 14 years ago sigmoideum adenocarcinoma - surgery successful
==========================================================
Salofalk 500 mg - 2 tablets, Mirtazapine 15 mg, Magnesium, Psyllium, Probiotics, in remission
==========================================================

XY123: I used to take azulfadine until it stopped working,probably took thousands.
The reason why I dont take anything is I never go near a UC doc.
Plus after my sons colectomy, I sort of lost faith in meds, as he did.

Question #3: Yep,everyday.

OM

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UC-1980, same flare since 1986. Still smoke. MEDS: None
SELENIUM for GPx, Zinc,NAC, glycine up to 10 grams a day, for Glutathione. Folate,B12.
SOD makes me worse. Why. Makes too much hydrogen peroxide from superoxide,
then not enough GPx and catalase to convert to water,then makes hydroxyl radical.
Curcumin-Thins my blood too much.

Good news, OM!

I have a lot of respect for all the research and reading you do.

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Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
6 months of chemo finished 7/9/18
Reversal to J pouch 8/9/18

Make sure to have regular colorectal cancer screenings Mike. CRC is a killer without preventative screenings appropriate to your risk factors.

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Moderator Ulcerative Colitis
John, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa
You never really appreciate what you've got until it's gone. Toilet paper is a good example.