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08-04-2008, 05:04 PM   #1
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worries about bleeding

i can't seem to find any answers to one particular fear i have.. wondered if any of you might be able to help me out here...

when Crohns causes bleeding - can it ever worsen to the extent that it can cause a haemorrhage??
08-04-2008, 05:33 PM   #2
butt-eze
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You would need to be bleeding pretty bad. If you're bleeding enough to worry about that I would go to the ER.
Many women have very heavy periods and only suffer from anemia.

Kev might be a good person to ask about this. I remember him saying once that he took pictures of the amount of blood he was having because his doctor didn't believe him.
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08-04-2008, 07:58 PM   #3
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Hey Sue... (OK, warning, gross talk ahead) Look, it is hard to tell how much blood one is losing. Bright red blood from the lower extremities of the ailmentary track can mix with water in the bowel of the w/c and make it look like more than it is..

Heres the gross stuff I warned everyone of.. So, rather than using a w/c, I took screening material (just left over screening from a sliding door that I fixed) and secured it over a bucket.. I then used the bucket, which separated solids from liquids (anyone getting squemish yet, I warned you this was gross talk). I then was able to accurately estimate how much bloodloss I was suffering. The average was about a litre every 3 - 4 movements.. which my doctors scoffed at. So, I took out the digital camera.. (yes, I know, even grosser) But it may have just saved my life.. After seeing the photos, the scoffing docs shut up pronto and scoped me.. that led to the rushed resection, and I wound up losing 1 1/2 feet of colon. God knows how much if I'd not taken these drastic steps. What if I'd allowed myself to accept the docs scoffing that I was over-estimating? How much blood or colon might I have lost... You GOT to look after yourself FIRST!!!
You can't sit back.. You have family that love you, need you, want you. Take it from me, there are people in this world who put your health at top of the list.. why aren't you on board with that? Do what you got to do to get drs to listen!
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08-04-2008, 10:59 PM   #4
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i remember Kev mentioning this before in my "my story" thread, like him i've had a similar thing happen, fortunately for me i was in the hospital at the time so i didn't need a camera, my docs and nurses got to see first hand the toilet bowl that looked like a murder scene.......

if you think you have more then normal coming out, especially bright red blood, do what ever you have to so you can get checked properly.

listen to the Kev
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08-05-2008, 04:43 AM   #5
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i'm certainly nowhere near haemorrhage amounts right now - the only time that happened was when i was on Asacol. but i am passing blood, every day. the consultant knows this.. although, like Kev says, it's hard for them to realise the amounts without evidence. i had a full blood count done the other week, & results were ok apart from being Vit D deficient.. so i can guess from that i'm not losing too much.

my worry was whether a persistently angry patch of Crohns ulceration can bleed a little for a while, then suddenly cause a proper haemorrhage - i've let my fears about this grow far too big in my mind, & it's something i do worry about. i just decided to run it by you guys to see if i'm imagining the possibility of that happening, or whether it really could happen.

i think, from what you've all said, it could - so thanks. at least i now know i'm not over-reacting with my concerns. thank you everyone. & Kev - i am on board with it, tomorrow is my physician appointment where i'm asking for LDN treatment - i plan to give it everything i can, & hopefully i'll come out with a prescription & some hope for these symptoms to at last abate.
08-05-2008, 05:26 PM   #6
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Hey Sue.. Good luck with the LDN thing... Just remember, it will take some time to get your body to slowly heal itself... So you'll need something NOW to stop/curb the bleeding.. It might be a fissure, it might be anything. You might need a scope to get to the bottom (AND, NO! Not making a joke, it isn't a joking matter) of this.

Now, the steroidal enemas immediately come to mind, but I understand there's a (relatively) new product... a spray foam that is nowhere near as painful as an enema... I don't know the name of it, or whether its available in the UK. If anyone can recall it, or knows the brand name, manufacturer, it would help, OK
08-05-2008, 06:03 PM   #7
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yup, i have a scope booked for later this month

the only thing they keep offering me to calm things down is pred, and that aint working so far. i've tried it in the foam form, and it was painful - too painful to continue with.

thanks for your good wishes Kev - i'll post in here tomorrow when i get back.
08-06-2008, 02:34 AM   #8
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Kev... I wonder if you mean colifoam. It's been around here for a few years... I've got about 6 tons of the stuff (I think the pharmacist misread the prescription). It's a steroidal foam... you use it twice a day and it delivers a measured dose. It's not the most pleasant experience in the world, but it's not messy or painful... it's more of a chore than anything else, and it tends to stay up there! The foam lasts about a week, by which time the symptoms should be better, or you should be seeing the doc.
I got it first when I'd had constant heavy bleeding, so this was the doc's first option, and it worked. The arrangement now is that I have a few spares (all 6 tons) and I'll use it if I get a recurrence, and make an appointment if it doesn't fix it.

Dingbat... just re-read your post. I suppose you've had the same stuff as me. It's a shame it's painful, but I suppose everyone is different.
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Last edited by Agent X20; 08-06-2008 at 02:41 AM.
08-06-2008, 03:27 AM   #9
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The liquid Colocort enemas I had from all the rectal pain are at least as bad as Kev describes when I did them for 3 months straight. Unreal pain sensations that lasted about 20 minutes a night. A true nightmare.

I see that our "hemorrhage" is another one of those UK/US variations, like "diarrhea"....why did our ancestors see the need to be more different than taxation without representation? I can see political deviations, but did we have to invent new grammatical rules too? Geez.
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08-06-2008, 04:58 AM   #10
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Steve, i have a few tons of various enemas, foams etc if you ever want to add to your collection lol

Benson - you should try learning spelling in a UK school lol. - i think we should all spell fonetikly...


so... just got back from my appointment. all seems hopeful for LDN - i just have to wait a few weeks while the doc makes various enquiries. am keeping everything crossed, well apart from my legs coz then i'd fall over and that would be a whole new set of problems lol
08-06-2008, 05:27 AM   #11
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Maybe we could all pool our resources and open a "Museum of the Enema". Still can't beat the old rubber tube and a funnel I fondly remember from the 70s!
08-06-2008, 05:34 AM   #12
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rubber tube & funnel??? omg! sounds like the dark ages, nevermind the 70's lol.
08-06-2008, 07:14 AM   #13
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We did things proper in them days!!!
08-06-2008, 11:12 AM   #14
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They still use those rubber hoses. I was introduced to one when I went to a hospital a year ago. They are very un-fun.
08-07-2008, 02:29 PM   #15
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Dingbat...ahhh I hope you are doing better. There have been two times that I have had to go get blood transfusions because I have lost so much blood. It is scary to see any amount of blood...but you will KNOW when it is too much! Be pushy and tell them what you need! =)

Promise
08-07-2008, 03:10 PM   #16
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hi Promise

thanks, that's quite reassuring in a way, i've never been at the stage where i've though a blood tranfusion is on the cards, so maybe i shouldn't worry too much. sorry you've gone through it though - twice!
08-07-2008, 07:03 PM   #17
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proctosedyl suppositories FOR THE WIN!!!
best things i've ever put up my butt, no pain at all, and they contain predni
08-09-2008, 08:15 PM   #18
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I remember Kev's other post about taking pictures in order for his doctors to understand. And the more I think about it, what an ingenious way to document anything you think is truly not right. I think from now that will be in the back of my mind - to document what my doctors may not be able to see for themselves.

I also wanted to make people aware as well. Small amounts of persistent blood loss will show up on a CBC at first but your body may try to adapt or compensate if it is just a small variance. It doesn't mean your not bleeding, it just means you are bleeding in such small amounts that your body can compensate for it.
08-10-2008, 02:26 PM   #19
Kev
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Actually, women have a gender based reflex that makes detection of blood loss a lot more difficult to determine accurately. Menstruation. It hones the ability of the body to replenish blood loss... So, in an accident involving blood loss, or donation of blood, womens bodies are tuned to bounce back much faster than men. Its a real double edged sword... and I would 'ASSume' that someone suffering from a recurrent blood loss, like Ulcerative colitis, other forms of IBD, may over time make screening for blood loss less effective in noting bleeding.
08-15-2008, 10:34 AM   #20
Colt
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BWS1982 said:
The liquid Colocort enemas I had from all the rectal pain are at least as bad as Kev describes when I did them for 3 months straight. Unreal pain sensations that lasted about 20 minutes a night. A true nightmare.

I see that our "hemorrhage" is another one of those UK/US variations, like "diarrhea"....why did our ancestors see the need to be more different than taxation without representation? I can see political deviations, but did we have to invent new grammatical rules too? Geez.
It comes from a specific xenophobic American who hated French immigrants and generally had a grudge against all things French. (Not uncommon. The 13 colonies/USA had severe xenophobia issues until at least the 20th century) This man just so happens to have published the first widely distributed dictionary in English speaking America.

He had a mission to remove French influence from the language and so wrote his dictionary to effectively change the language by doing things like removing Us from words like colour and armour. Pre-19th century dictionaries often were written in an effort to prescribe proper English instead of recording it's normal usage.

(I know that wasn't necessary but I can't pass up a chance at a history lesson)
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