Anyone else here that bleeding is your main problem?

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Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 2/24/2009 11:34 PM (GMT -6)   
I haven't had D for a couple months.  But when I do go the toilet is loaded with blood.  No mucus, small hard stools, but no D.
Urgency yes, and bloody gas many times a day.  I change my undies so frequently I have to wash every other day.
Enemas not able to stay in at this point yet.
So my question is, as far as the blood, which med finally got the bleeding under control for you?  I think if I could get the blood to stop 70% of my problem would be solved(at least for now).  I think when I now have urgency, it's just the large amount of blood wanting to get out.

qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 2/25/2009 7:49 AM (GMT -6)   

Hey, blood loss is the main problem for me, along with mucous aswell. And often end up with a large amount of blood in the toilet after I've been. However I have not yet found a medication that works to control this yet and am becoming anaemic so am due to go into hospital on Friday.

You need to make sure you keep telling your consultant/GP about this and be honest about how you are feeling. I for much of the past year just nodded and did whatever they said and didn't really tell them how I feel; and so they kept sending me away with a higher dose or a different medication etc. It wasn't until I was really honest and told them how much it was affecting me that they got their backsides in gear and arranged a hospital stay and flexi sigmoidoscopy. 


22 year old female, from the UK
 
Diagnosed with Ulcerative Proctitis Jan '08
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Going into hospital Fri 27th Feb for IV steroids etc
 
Currently taking daily: 9 x 400mg Asacol tablets, plus Fybogel fibre supplement and vitamin tablet.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/25/2009 8:25 AM (GMT -6)   

A quick answer would be YES - it was.  Looking back at your posts I find your are way against prednisone (don't blame you) but that is the only thing that finally stopped my bleeding.  Started out almost a year ago with urgency, diarrhea, many bms a day, etc. to now with what seems like remission.  I tried all mesalamines - can't tolerate them but they helped - enemas helped, proctofoam helped and most of all probiotics stopped the diarrhea and multiple bms.  Still - bleeding - and painful cramping at times.  If you can't keep in the enemas - try only 1/3 or a foam - it is easier to start out slow.  AFTER you have tried all the possibilities and keep talking with your doctor - then don't rule out prednisone.  Of course, you can't take it forever and I am in the process of tapering from 40 mg. to 10 mg. and then a maintenance medication - maybe 6 MP or ?

I feel wonderful!  NONE of those terrible side effects - little moody maybe - arthritis is great - it has taken all the inflammation away for now.  I do dread what may come as I taper further - on 20 mg. now and doing good.  Just try a short taper - not so many long term effects to see how it goes. This is just my experience!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far.  Plan on adding 6MP (or?) at lowest possible prednisone dose.
Probiotic Align, Prilosec for GERD
 
 
 


JoMarie
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 2/25/2009 9:01 AM (GMT -6)   

Have you tried cortifoam?  I think it was the med that got my son's bleeding under control.  I know the foam only reaches the distal portion, but that must be where my son's bleeding was, because it did work.  It also sound like you are constipated---have you tried metamucil?  My son eats the wafer type and thinks they taste okay-takes them with a meal and at least a full glass of juice or water.  Hope things improve for you soon..

Jo


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 2/25/2009 10:45 AM (GMT -6)   
bleeding is my #1 concern. i have been hospitalized twice. i have been on prednisone many times and seem to be dependent to it. so now i am on 6MP. make sure you are getting enough iron and make sure you are not anemic.
severe ulcerative proctitis - march 05 diagnosed
proctosigmoiditis - january 09 diagnosed
hospitalized - 3/08 for 6 days of IV steriods
hospitalized - 1/09 for 5 days of IV steriods / put on 6MP
past meds: colozol, sulfasalzine, hydrocortisone enemas, canasa, rowasa and prednisone 
current meds: 6MP (75mgs), Asacol 12 pills,  Rowasa Enema, Primal Defense Ultra Probiotic, fish oil, calcium w/ vitamin d 2x a day, prenatal vitamin & extra vitamin c and b12.
 
 


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 348
   Posted 2/25/2009 11:19 AM (GMT -6)   
How long did it take for the bleeding to stop with cortifoam, JoMarie?
26m - Dx January 2005: UC/Crohn's
Normal medication: 12 tablets of Asacol daily
New: Entocort 9 mg


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 2/25/2009 11:24 AM (GMT -6)   
I would say that I'm in this boat. I've been battling the blood for a spell now. I don't have a lot of bms a day and they are soft to mushy mostly. I don't get straight up diahrrea unless I eat the wrong thing. Carbs like noodles and white rice...as well as green beans go right through me.

Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: 100 mg Azathioprine a day
 
 
 
 


JoMarie
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 2/25/2009 1:24 PM (GMT -6)   

The bleeding took about a week or so to stop completely.  It was really a drastic change from blood with every BM to no blood...We were very thankful for that...And we were only doing the cortifoam every other day, so I'm sure not much steroid absorption systemically.  Now it's been over 2 months, and we've gradually tapered to every third or fourth day and he's still doing very well.  We're hoping to eventually stop the cortifoam and maintain with Colazal, VSL#3, and Metamucil wafers.

Jo 

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