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What’s the longest you’ve been bleeding for?

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Ulcerative Colitis
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Posted 1/1/2022 7:43 PM (GMT -5)
Hi, After checking my diary. I’m going on almost 1 and half years bleeding everyday with each BM.

Been on the retention enemas. Supps (still am), budesonide foam (still am), budesonide oral, even my last pred taper from 30mg about 7 months ago didn’t stop it.

I now feel like theres more blood when I go and mucus has started being more obvious too.

Im hoping to get approved for a biologic at the end of this month but on the edge of asking her if I should do a pred taper asap or try to hold on to see the new GI who manages the biologics..

Out of curiosity, what is the longest you have had bleeding? Im worried if theres long term damage from bleeding for so long..
Posted 1/1/2022 8:42 PM (GMT -5)
about the same. Over a year. Still bleeding on 30mg pred. Waiting on my GI to apply for entyvio when he’s back from holidays
Posted 1/1/2022 8:57 PM (GMT -5)
Sorry to hear that, it sucks right?

Im already supplementing iron as my bloodwork showed that was low. Im concerned both about bleeding so much and the time I’ve been taking the steroid rectal foam which is obviously not doing much..this mainly comes from thinning fears I read on here to be honest..

I mean, could the steroid foam be causing the bleeding? Been on that for about 5 months daily.

I don’t know if I should stop it or maybe its what needs to be increased. So much uncertainty…
Posted 1/2/2022 8:01 AM (GMT -5)
I didn't bleed the whole time but i flared for over 3 years with varying severity until i found the right medication. Actually blood was the least worrisome symptom because it was the pain and urgency that impacted my quality of life.
Posted 1/2/2022 8:04 AM (GMT -5)
Btw what kind of iron are you supplementing with? If i remember rightly, iron tablets can exacerbate UC and should be avoided during a flare.
Posted 1/2/2022 8:07 AM (GMT -5)
Ps sorry one other thing. The amount of blood you lose is usually less than you would imagine from the visuals.
Posted 1/2/2022 10:48 AM (GMT -5)
Dark Chocolate bars, the ones with a high percentage of cocoa, have a lot of iron in them.
Pretty sure just a 2” x 4” rectangle piece of a bar gives you quite a bit of iron.
Posted 1/2/2022 11:43 AM (GMT -5)

poopydoop said...
Ps sorry one other thing. The amount of blood you lose is usually less than you would imagine from the visuals.

I’ve heard this a lot since having UC. Blood is such a scary symptom for me just because the sight of it seems scary. Why does it seem like so much more visually?
Posted 1/2/2022 2:34 PM (GMT -5)
The past 8 months for me. blood every time. Not crazy amounts though.
The longest stretch.
I went on Ixifi (remicade biosimilar) right before that and fro two months U.C went away.
Sadly it came back full force. Been flaring for 8 months even on the biological.
Skipped my last dose as per GI instructions.
Probably switching to Entyvio.
Although before that I am trying VERY hard to control my symptoms with alternative stuff.
Posted 1/2/2022 10:27 PM (GMT -5)
Mine was for years too. It felt neverending, and I dealt with anemia it was so bad. It's debilitating.
Posted 1/7/2022 7:20 AM (GMT -5)
16 years and it sucks to see it every day
Posted 1/7/2022 9:28 AM (GMT -5)
Thanks for the replies everyone. I didn’t realise a lot of you were bleeding very long too.

@therearemiracles, 16 years though, darn.. everyday? What finally stopped it or is it still ongoing?

@notsosicklygirl, I feel this will happen to, low iron is probably the warning sign.

@Yissurim, I hope Entyvio does work for you!

@Poopydoop, the supplement is called sucrosomed iron as suggested by my GI.

@Rusty Barr, I’ll certainly try chocolate!

I’ve been testing out SCD and avoiding gluten but after a couple of days that were a bit better, today Ive had a lot of blood and lumps of mucus.. then the horrible rectum pain afterwards that lasts for about an hour and a half. Urgency still present too.

I have a feeling the biologic may be Remicade here in Spain first and I assume it will take some time to work, not sure if the GI will add in Prednisone meanwhile to get me out of this bleeding flare first, or do they usually let the biologic do the work alone?

1Wish
Posted 1/7/2022 9:38 AM (GMT -5)
I was on pred when I started remicade and by the time I had tapered off pred, the remicade kicked in. It still took a while with dosage adjustments until I was finally in remission though. I stopped seeing blood every day while I was on the pred, but I did see it occasionally for about a year or so after starting remi. I haven't seen even a trace for about a year now.

At my worst when I had a lot of blood every day I had to have a blood transfusion and iron transfusions because I became so anemic. That was before I started Remicade. No issues since.
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