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Ulcerative Colitis
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Posted 3/12/2017 7:52 PM (GMT 0)
Hi All,

this is my first post but I have been a frequent reader for a while, so first of all I would like to thank everyone in this community for contributing.

I have been diagnosed with UC in 2008 (I was 18) and have been pretty much living a normal life with no to mild flares ever since. I am currently flaring, it started c. 1 month ago, and I have 2-3 BMs per day.

Usually the pattern is this: one BM first thing in the morning (liquid to very loose), then 1 to 3 more during the day, with formed good stool. I do not have urgency or strong pains, so overall I am consider myself pretty lucky so far.

What really bothers me is the blood. Almost every day I can see bright red blood either on the paper only or also in the water. It feels like it is coming from the very end of my bowel, because the stool itself is normal.

I am taking 5-6 Asacol capsules per day and 1 Pentasa enema at night; which is helping but I still have blood. I know there are further solutions available (remicade, steroids, cortison, antibiotics, etc etc), but I am just not willing to stuff my body with more and more medicines just to stop this very mild bleeding which is not affecting my quality of life. I also started a low carbs diet (something in between SCD and GAPS), and this is helping a lot.

So far, I have been bleeding intermittently for c. 2 months. Before that I was in remission for 2 months, and before that remission I was bleeding for c. 3 weeks. The last two times that I was bleeding the problem went away with Metronidazole (Flagyl), but since I already took it 3 times since last August I am not willing to take it again at least until next Summer.

My question is: how long can we go on bleeding (not that much fortunately)? It is not affecting my quality of life or my health (I am feeling good), but it is still mentally difficult to see bright fresh blood when you go to the toilet. Also I just cannot imagine that a part of the body would continue bleeding for 2 months in a row without it possibly evolving into something more serious??

What is your experience with blood? What is the longest period of time you have been bleeding for? Should I just "forget" about it and live with it until it passes because blood is something "normal" in UC?

Thanks all for your help!!
Posted 3/12/2017 9:19 PM (GMT 0)
otaneresp, I have been bleeding for probably 4-5 months now. I was chalking up my symptoms to IBS (which is what I'd been diagnosed with) and external hemorrhoids, and hoping they would go away with diet changes and taking Align (they didn't).

I finally got scared enough just passing blood and mucus, and tired enough of the constant tenesmus, that I went to a GI and was diagnosed via colonoscopy on Feb. 8. I have mild inflammation through the sigmoid colon.

I am still having bleeding but now starting to have days with no bleeding or very little, and it is now often blood on stool rather than just passing blood alone or with mucus. There is generally less of it since starting Colazal 10 days ago. Prednisone did not stop the bleeding for me but the addition of Colazal and a strict gluten free diet seem to be helping.

I will add that when I am bleeding, it's not a lot - maybe 2 tbs at most but obviously hard to quantify ;)
Posted 3/12/2017 9:39 PM (GMT 0)
1 month is not a long time for a UC flare unfortunately. Blood can be one of the last symptoms to clear. Continue strictly with the diet and meds since both are helping. I would consider adding a probiotic since you are still not getting into 100% remission.

Small amounts of bright red blood can also be from hemmoroids so you can rule that out as well when you see your GI (they can do a rectal exam).
Posted 3/12/2017 10:05 PM (GMT 0)
Thanks both this is very helpful. So as long as I am not in pain, not having more than 3-4 BMs per day, and not feeling bad generally, with the only symptom being blood and softer stool than usual, you would go on with your life and not worry too much about it?

Sorry for being pedantic but it is just very hard to not think about it when you are constantly reminded of it when you go to the toilet.

Jane974 I thought about hemorroids too, but I also did 4 colonoscopies throughout the years and these all confirmed the UC diagnosis
Posted 3/12/2017 10:10 PM (GMT 0)
Jane974, that's helpful for me too - I'm looking for two good days in a row and then adding the VSL#3. Hopefully this week!
Posted 3/12/2017 10:33 PM (GMT 0)

otaneresp said...
Thanks both this is very helpful. So as long as I am not in pain, not having more than 3-4 BMs per day, and not feeling bad generally, with the only symptom being blood and softer stool than usual, you would go on with your life and not worry too much about it?

Sorry for being pedantic but it is just very hard to not think about it when you are constantly reminded of it when you go to the toilet.

Jane974 I thought about hemorroids too, but I also did 4 colonoscopies throughout the years and these all confirmed the UC diagnosis

That's what I did with my last flare (just ended a couple weeks ago). I rode it out and it lasted 2 months, but it was not getting worse and slowly getting better. I did not add any stronger meds and just stuck to balsalside, my SCD diet and probiotics. Just keep a journal of symptoms and make sure you are moving in the right direction even if very slow. See you GI if things take a turn or if bleeding continues daily. I did see My GI once during the flare to do blood work (check inflammatory markers and make sure not anemic) and stool testing to check for inflammation/rule out pathogens.

BTW, you can have UC and hemmoiroids at the same time. For me it was a relief to know that at least some of the bleeding was due to hemmoiroids when I saw my GI last month.

Post Edited (Jane974) : 3/12/2017 4:36:57 PM (GMT-6)

Posted 3/12/2017 10:43 PM (GMT 0)
i wouldn't go up the ladder with meds either. IMO salofalk enemas are a life saver
Posted 3/12/2017 11:41 PM (GMT 0)
If in doubt have a colonscopy, flex-sigmoidoscopy, CRP blood test, or FCP stool test. Bleeding has a cause, see how much inflammation you have. I bet if you're seeing blood then there's likely simmering inflammation.
Posted 3/29/2017 2:01 AM (GMT 0)
Hi! I am new to the forum and late to the party, but I wouldn't worry too much about complications from bleeding just that bit. To answer your question :

"how long can we go on bleeding (not that much fortunately)? ...without it possibly evolving into something more serious?? What is your experience with blood? What is the longest period of time you have been bleeding for? Should I just "forget" about it and live with it until it passes because blood is something "normal" in UC?"

My husband has had toilet bowls FULL of blood 10-20 times a day since about Christmas (so a little over 3 months) and about 2 weeks ago got to the point where his hemoglobin was at 7.3L. (They tend to do transfusions when it's below 7L). We went to get iron transfusions a couple days after those labs and the hematologist walked in and said he didn't look too hot so he did another CBC Panel. Hemoglobin dropped to 6.1L so my husband was admitted and got blood transfusion and two more iron transfusions to boot.

If you start feeling different or more light-headed/dizzy/etc. It never hurts to ask for a CBC to check your blood counts and make sure you aren't severely anemic. Chances are, if you are otherwise healthy and not having severe bleeding, your body is able to replenish your blood and iron to keep up. Best of luck to you!
Posted 3/29/2017 2:19 AM (GMT 0)
" Should I just "forget" about it and live with it until it passes because blood is something "normal" in UC??

in a word, unequivocally, yes -

well, don't ignore blood of course, but do let it run it's course - after dealing with butt blood for more than 110 years, i tend to get more concerned about the ongoing reduction of hair on my head - you do get kind of comfortable with blood to a certain degree and it is kind of a useful tool - and you learn not to freak out like the early days -
Posted 3/29/2017 7:12 AM (GMT 0)
thanks soynomore this is useful.

In your experience, has diet been helpful in managing symptoms, and specifically blood? I started an ultra low carb diet a few weeks back and it really helped in terms of urgency and BMs per day, but the blood seems like the toughest one to beat.

I have started an elemental diet (on my 3rd day now) and am waiting to see its effects, but it's really hard to do this for more than 10days- 2 weeks I think.

Also I have read a book by prof. John Hunter ("Irritable Bowel Solutions") where he says that dietary treatment is very effective for CD but NOT effective for UC... what is your experience?
Posted 3/29/2017 12:27 PM (GMT 0)
not taken any meds in over 4 years - diet is my only drug !

so which diet are you currently being abused by - the no carb, the elemental or both ?
Posted 3/29/2017 2:13 PM (GMT 0)
I have been on no carb for c. 10 days and it helped, but still the blood did not go away (decreased a lot though).

hence I started elemental and am on day 3 now - while it is absolutely the most disgusting (and anti-social) thing I have ever tried in my life, the bleeding has stopped and I am feeling incredibly better. let's see how it goes for the next week and then I guess that the hard part will be moving back to normal food! But in general, I would definitely recommend it to those who have not had much luck with normal meds...
Posted 3/29/2017 4:45 PM (GMT 0)
Hi...questions:
when was your last c-scope?

What dosage of asacol pills?

What dosage of Pentasa enemas? 1g? 2g? 4g? How long using them?

Are you in Canada or UK?
q
Posted 3/29/2017 5:06 PM (GMT 0)
Hi quincy:

1) my last c-scope was 3.5 years ago; if I remember correctly it showed mild inflammation in the rectum and left colon
2) Asacol pills: before starting the diets, I was on 6x500mg per day during a flare and 3x500mg maintenance dose. For the past 2 months (when I have been flaring), I have been taking 6x500mg. Since 2 weeks though I came down to 4x500mg thanks to the massive positive impact of the diets (SCD first and elemental after)
3) When I am flaring I take 4g of Pentasa enema per day, usually right before going to sleep. In remission I don't take any. For the past 2 months I have been taking it every day, and I am not going to taper off this one until I am 110% sure that I am out of the flare: historically enemas are the meds that are most effective for me.
4) UK
Posted 3/29/2017 6:46 PM (GMT 0)
I would advise against tappering down your medications. Please continue both your diet and your prescribed medications. Studies have shown that those who remain on their maintenance medications enjoy the longest periods of remission, and the shortest and mildest flares. The asacol and pentasa also reduce your odds of colorectal cancer, something that's typically elevated for us.

I'm truly glad you're feeling better but it's foolish to stop your medications. Don't make that mistake. As you'll likely flareup and require much stronger medications to recover. The asacol and pentasa are very mildn 90 percent topical anti-inflammatory medications that are well tolerated by most without side effects. Stay on them for as long as you can as an insurance policy.
Posted 3/30/2017 7:33 AM (GMT 0)
Thanks iPoop for your advice. In fact, I am not thinking of dropping of meds... I did this mistake during my last remission and I have been paying the consequences of it for the past 2 months! But if I manage to get better, I was thinking of going back to maintenance dose of Asacol pills (3x800 per day) and do enemas once every 2-3 nights instead of daily. But first... I have to get there turn
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