Black blood in stools - odd symptom?

[Lizzie]

I haven't posted for a very long time, but would be really grateful if anyone could tell me what they think about this symptom I'm getting. (Diagnosed with proctitis 2011, ulcerative colitis 2012).

I'm getting lots of black blood clots mixed in with stools and a long blackish line of blood down the stool (looks a bit like a bootlace). What scares me is that I've googled my symptoms and I keep reading that black blood is not a sign of ulcerative colitis as it comes from higher up the digestive tract.

I'm terrified I might have Crohns (my dad had an ileostomy with Crohns). I'm hoping that I've misunderstood what I'm reading or that it is mistaken.

Any views?

 

[DJW]

Hi Lizzie. I think you need to be checked out by a doctor. I hope you get answers soon.

 

[Lizzie]

Thank you for your reply, I am feeling a bit stressed by all this. I actually have a routine appointment with the hospital GI doctor a month hence, so will ask her opinion then. (I don't think she's completely honest with me, unfortunately, probably with the best intentions of not frightening me. When I got my initial diagnosis I knew I had something worse than proctitis because of my symptoms, but it took a year for the doctor to confirm this.)

In your opinion, could my symptoms be of Crohns?

 

[DJW]

I understand feeling stressed by this. Could it be a symptom of crohn's; it could be but my opinion is worth nothing. I'm glad you have an appointment in a month. I do think it is important to call the doctor this week and let her know what is going on. Hope you feel better soon.

 

[Trysha]

Hi Lizzie
How very stressful for you.
It is important for you to see your doctor very soon.
You recognise something is wrong and worrying you.
It is important to call your doctor preferably tomorrow or maybe go to emergency.
It is not good to be losing blood--get it checked.
Hugs and best wishes
Trysha

 

[Lizzie]

Thank you. I strongly suspect I have the start of Crohns and don't just have UC, but hope I am wrong because I know what my poor father went through.

I've taken the advice people here have given and rung the hospital's IBD helpline but am still waiting for a call back. It's not actually an emergency situation as I feel OK physically. I started a low residue diet the other day and this seems to be easing symptoms, at least I'm not going to the toilet as often.

I'm still hoping against the odds that someone can reassure me that they have had black blood in their stools and they have UC not Crohns! Anybody?

 

[Trysha]

Hi Lizzie
Black blood in stools indicates bleeding higher up in the GI tract.
It could be anyone's guess what is causing it, could be a gastric or duodenal ulcer or something else.
This type of bleed is easy to fix through the endoscope.
It is serious to be bleeding like this and only the GI can find out the cause.
Keep calling for help before it becomes a dire emergency.
Feel better soon
Hugs
Trysha

 

[Lizzie]

Thank you Trysha, I am sure you are most probably correct.

However, the GI nurse rang me back and told me that they are only concerned about fresh (red) blood and that black blood and black mucus are "just" old blood, nothing to worry about. She was adamant that it is a symptom of proctitis! I tried to protest but she just would not accept my concerns. She told me to continue with Salofalk (mesalazine) daily and ring in a fortnight if things haven't improved.

I do not feel at all reassured (I've googled "Proctitis and Black Blood" and nothing at all comes up linking the two) but thankfully I am seeing the GI doctor in a month.

 

[Trysha]

I am shocked at this advice from a nurse.
You need to insist on seeing a gastroenterologist
Are you able to call your GI or is this nurse speaking for him?
I would be most unhappy in your shoes.
You could speak to your family physician (GP) too.
I would suggest you go to an emergency room for their advice after you telling them how concerned you are.
Hugs
Trysha

 

[Lizzie]

Thank you for your reply again. I too seriously doubt that old blood could just be hanging around in the rectum and coming out over a time period of seven days but the nurse insisted that I only have proctitis and therefore the black blood and black mucus must be coming from that region. I desperately hope she is right, though - which brings me back to the question I posed about whether anyone with ulcerative colitis, or proctitis for that matter (ie not Crohns) has had problems with black blood in the stools? I would be so happy to hear from them!

You are correct that the GI nurse is the gatekeeper to the GI doctor. I don't feel I have any choice but to wait for my appointment. I'm also not sure what my own GP could do, other than refer me back to the hospital. However, urgent referrals take two or three weeks to set up, by which time my routine appointment would be almost due anyhow. There are also strict criteria for urgent referrals because of the present financial restraints on the NHS, so you can't just go along and demand one, and nowadays GPs are under Government pressure to limit the number of hospital referrals they make.

I presume you're based in America? I think you are perhaps able to be more assertive than we are in the UK, where treatment is free at the point of use (of course we pay a considerable amount for the NHS through our taxes but we are pretty much expected to behave like subservient charity recipients).

Accident and Emergency have a pretty bad reputation here too. I am certain they would just tell me to go home and wait for my appointment, since I am apparently in reasonable health and in very little pain with my symptoms. You have to be doubled over in agony or pouring with blood to stand a chance of being taken seriously in A and E.

 

[Trysha]

It would be taken seriously here in Ontario and locally the GI system is excellent.
You would be sen immediately in the ER.
Unfortunately our health system is not what it used to be due to the meetings they have internationally where UK politicians tout money saving ideas.
Everyone talks money and there is an abundance as far as the hospital administrators salaries are concerned., not enough for patient care as we would like it.
They have adopted the appalling mixed gender hospital rooms--learned from the UK and where now the UK hospitals are penalised for practising this major patient indignity.
But the medical care is there for us at the moment.
So sorry that you must wait for attention.
Hugs
Trysha

 

[FrozenGirl]

I agree with the others, a doc is necessary. Another consideration if you are on iron it can cause black stools.

 

[Lizzie]

Thank you for your reply. I'm not on iron (and haven't eaten any licorice etc either, so it's not a panic over nothing, like that heartstopping moment when you've eaten loads of beetroot and it passes through undigested!).

I just have to wait now until 7 May and hope that the low residue diet calms things down. I've only been to the loo once in 24 hours so that's got to be a good thing, and there were slightly fewer blood clots, so I hope it is helping.

 

[FrozenGirl]

Good luck! Low res is pretty much always a safe idea when on doubt.

 

[Lizzie]

Lots of red blood today, no black. Hope this is progress! I rang the 10 am to 4 pm helpline at 12.30 pm and got a recorded message saying that if you ring after 12 pm you won't get a callback till tomorrow. Weird definition of a 10 am to 4 pm helpline.

So I'm not sure if I'm improving or not.

 

[Orchid]

Bright red blood means it came from either the sigmoid colon or a rectal tear because it really quickly darkens in the digestive tract. It could easily be a simple rectal tear, but only a doctor can say for sure.

 

[Lizzie]

Yes, I am more worried about the black blood but I would have liked to talk to the hospital helpline to see if I should increase my Salofalk for a little while on account of the red blood.

 

[ce1210]

Black blood and mucous in stool were my first real noticeable Crohn's symptoms....my doc said blood coming from before the terminal ileum in the digestive tract has a good chance at coming out very dark instead of red, and the further down the bleeding comes from the fresher it will look. I was basically told that if I have any digestive disturbances, especially any that include blood, that its 99.9% bc of my crohn's and not to worry about it unless it keeps happening over and over or is gradually getting worse...

 

[Lizzie]

Thank you. I have been looking at everything I can find on the internet and it seems (to my very limited layperson's understanding) that black blood is almost always linked to Crohns rather than UC. Scary.

 

[2thFairy]

I had black blood from time to time and definitely only had UC. Black blood is not the most common type of blood to be seen in UC, but it does happen.

 

[Lizzie]

That's very interesting, thank you for letting me know. I rang the hospital IBD helpline again a couple of days ago as I was now losing red blood and wanted advice about my medication dosage. I spoke to a nurse who I definitely trusted, she was older and very experienced, and she told me that black blood isn't absolutely always a really bad sign, despite what you read on the web. I feel cautiously hopeful. I spend far too much time dreading the thought of ileostomy instead of getting on with life now and not worrying about something that hopefully may never happen!

 

[2thFairy]

A bit off topic, but for me, an ileostomy after a thousand years of UC was the best thing to ever happen to me.

 

[Elaine G]

That's very interesting, thank you for letting me know. I rang the hospital IBD helpline again a couple of days ago as I was now losing red blood and wanted advice about my medication dosage. I spoke to a nurse who I definitely trusted, she was older and very experienced, and she told me that black blood isn't absolutely always a really bad sign, despite what you read on the web. I feel cautiously hopeful. I spend far too much time dreading the thought of ileostomy instead of getting on with life now and not worrying about something that hopefully may never happen!

Oh Lizzie I quite understand how you would be feeling , when you feel unwell you always dread the worse well at least I do cos when you feel so rotten you jus want someone to say oh don't worry its this or its that , or that will we do this or that . I do hope you get an answer soon , where abouts in the UK do you live , I live in central London so there is lots of teachig hospitals but have to say I hate going to A&Es you come home with more than you went in with , but even though we complain when you actually get to see a consultant we do usually get a good service its just trying to get there , I would call the drs secretary if you are feeling really bad and ask her if she can get you an earlier appt even if you have to start crying though I would probably be crying by now anyway, if you can't get an earlier appt then ask for one of the team to call you to give advice kick up a stink if you feel really bad . good hope you feel better soon

 

[Dackelmann]

Lizzie- last July I finally got diagnosed with proctitis after a colonoscopy- and put on Mesalazine (GI took a "she'll be right attitude") didn't really get better and numerous trips to GP and 3 more colonoscopies later the result was "moderate/severe pan colitis". The GI was in panic mode from his earlier nonchalance. I was getting the same black blood and 'bootlaces' - sounds very familiar. The blood was further up from the 'procty' area and older and hence black. Yep - I freaked when I saw it too. I do hope somebody can check you out and take it seriously.

 

[Lizzie]

Hi Dackelmann. What you have said does sound ominous but it fits in with my initial reaction from checking out reputable sites on the internet, so I'm not that surprised really. I am still trying to convince myself that what the nurses told me might be correct but deep down I don't really believe it.

 

[Lizzie]

Thank you, Elaine for your reply. Not all that long till my hospital appointment now, and I'm not actually feeling bad physically (hardly any pain) so I shall wait rather than try to see the consultant earlier. I am also not very good at being assertive so would probably find myself fobbed off if I tried to speak to her secretary! My problems are more in my head really, with the stress of worrying about how much worse my condition might eventually become, and I'm not sure a couple of weeks either way will make much difference.

I'm in the East Midlands, by the way. (Maybe there's an advantage to being in London, like you are, but I'm not certain really. I lived in London till recently and my husband received appalling treatment for a terminal illness at so-called leading institutes.)

 

[Elaine G]

Ahh Lizzie its hard to be tough when you are talking to secretaries etc but they are just the same as us they are just doing there job, I am lucky I have 2 daughters that are probably my Drs worst nightmare they ask every single question under the sun (perhaps I should send them to E midlands to you). Seriously though I do hope that things get sorted for you and wish you well.

 

[abic]

Hi there,

Like you, I have UC and got black blood when my fecal calprotectin levels were high. I rung the GI and he said it was not normal at all- and put me on steroids. In my case, my ulcers were high up in the colon (transverse/ascending). I would talk to your GI about it and take special note of any other symptoms you have. In particular- whether your BM's are slowly increasing in number each day. The fact you are having fresh red blood could mean the beginning of a flare-up. Good luck.

 

[abic]

Hi there,

Like you, I have UC and got black blood when my fecal calprotectin levels were high. I rung the GI and he said it was not normal at all- and put me on steroids. In my case, my ulcers were high up in the colon (transverse/ascending). I would talk to your GI about it and take special note of any other symptoms you have. In particular- whether your BM's are slowly increasing in number each day. The fact you are having fresh red blood could mean the beginning of a flare-up. Good luck.

 

[Lizzie]

Yes, the number of BMs is gradually increasing, as is the amount of red blood (though less black blood) - I presumed the increase was not a good sign. I am counting the days till my hospital appointment on Wednesday as my anxiety levels are at fever pitch.

 

[abic]

Hi Lizzie, I know its hard not to worry as we all suffer from that with our condition- no one wants to get sick again! Its so good you are seeing the GI on Wednesday. Hopefully they can step up your treatment a bit or at least reassure you if there is nothing to worry about. My twin sister has ulcerative proctitis and it is pretty horrible for her sometimes with the urgency etc so I can see why you want to keep it at bay. It sounds like you have a good crew of people looking after you. If there is any doubt, can you convince your nurse to do a fecal calprotectin test for you to see if the inflammation is active?

 

[Lizzie]

Well, my appointment yesterday was very bizarre after all the waiting and hoping for the GI consultant to tell me what might be going on. She told me (without examining me) that I had black mucus, nothing to worry about, and that my main problem was depression/severe anxiety about my health. She insisted that I should visit my GP for help with the psychological issues. I asked her what could be causing black mucus and she was very reluctant to say, eventually saying something vague about it maybe being dietary causes (but I can't for the life of me think of anything I've been eating that could cause this).

She wants to see me in six weeks or so. That is odd in itself if she truly believes my problems are largely psychological. (My appointments are normally six months/one year apart depending on how well I am doing physically.)

Anyhow, though I feel sceptical and pretty upset at my concerns being more or less dismissed, I am going to follow the doctor's advice. I will get some tranquilisers, try not to look at the toilet contents and stay away from this forum until after my next visit to the hospital!

 

[jwfoise]

That does seem rather odd Lizzie. You might want to consider a second opinion from another GI, if that's possible.

 

[ce1210]

try cannabis and whole/all natural diet...made my blood and mucus stop

 

[Lizzie]

I try to eat a fairly natural diet as much as possible, though it's difficult when eating out. Not sure where I'd get hold of cannabis where I live. The GP has put me on Prozac and I notice one of the side effects is loose BMs - not ideal with my health condition. Still, I shall persevere until my next appointment with the GI consultant. I am not doing too well at staying off this forum, obviously.

 

[Daisy123]

My IBD nurses are great, very helpful. I go to a leading specialist centre and if I need to see my GI earlier, they always pull appointments forward. I am moving towards an ileostomy and know how you feel but I have managed to put it off for 30 years, so am resigned to it. Treatment is much better now than it would have been with your dad. Hope your appointment goes well.

 

[ce1210]

I try to eat a fairly natural diet as much as possible, though it's difficult when eating out. Not sure where I'd get hold of cannabis where I live. The GP has put me on Prozac and I notice one of the side effects is loose BMs - not ideal with my health condition. Still, I shall persevere until my next appointment with the GI consultant. I am not doing too well at staying off this forum, obviously.

geez thats unfortunate hash oil has helped my bleeding stop and helps tremendously with anxiety...i will say this tho stress triggers symptoms for me more than ANYTHING including foods, medications, etc. I've never really heard anyone say they had a very good experience with prozac but hopefully it will help. If your having anxiety and maybe want to try something different, xanax helps with my anxiety and actually seems to make my stomach feel a bit better when I take it (maybe just makes my stomach feel better cause I'm constantly anxious) without causing any kind of BM issues. Just speaking from personal experience not trying to give medical advice or whatever.