Too much blood?

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ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 11/17/2008 2:53 PM (GMT -6)   
I'm just curious. At what point would you consider that you might be losing too much blood?
Besides feeling fatigued and being in an almost constant state of pain, I haven't felt really lightheaded or dizzy. I've just had a constant dull ache in my stomach for the past week that frequently esclates to an intense burning/stabbing nauseating pain more towards the right side under my navel area but it feels like the pain is throughout my entire midsection. I've also been having back pain that I can only assume is from the fact that my stomach hurts so by slouching and trying to take pressure/weight off the stomach it's putting it on my back. Last Wednesday I couldn't even sit or stand up straight and only felt okay when lying down on my back.

I'm reaching my three month mark with Azasan and have been getting worse the last few weeks so my doctor was talking Remicade. I'm not really sure what we'll do yet but I guess I'll find out in a few days. I've lost 4 pounds in the last week, which wouldn't seem like much except I'm 119lbs and 5'8" so it's not really a great thing, and I'm starting to develop a complete aversion to food in general because I know it's going to be excrutiating going in and coming out regardless.
 
But, every time I go to the bathroom it's nothing but liquid stool and blood, sometimes only blood. And quite a lot of it. It's mostly a darker red and sometimes appears to have clots in it when I wipe. I'd say I've gone about 10 times today and had blood every time, sometimes only a little, other times it colors the water red. I have a doctor's appointment Friday already but I'm wondering at what point do you start getting concerned and what measures do you usually take? I'm not one to go to the hosptial for my UC, I never have and would probably have to be passing out before I gave in and went. I'm just getting really tired of feeling this way.
 

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Sulfasalizine 3000mg/day, Azasan 100mg

 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 11/17/2008 4:46 PM (GMT -6)   
     Did your GI doctor ask for you to have a CBC drawn?  I would think he would want a blood count if you are bleeding badly.  Have you ever taken prednisone?  How about the rectal meds?  Hope you will be feeling better soon.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 11/17/2008 5:10 PM (GMT -6)   

Unfortunately, I've taken prednisone more times than I'd like to think about, and I always end up steroid dependant. The last course I was on had no effect on my colitis whatsoever and I am thinking it might not work for me anymore. The only thing it did was give me as many nasty side effects as I could handle. I'm avoiding it at all costs now.

As for rectal meds, I've tried suppositories and, recently suspension enemas. I was doing them nightly for awhile and my doctor didn't feel they were having any benefit whatsoever so he told me to stop. Which I gladly did because it was extremely uncomfortable administering them; even after a few weeks I couldn't get the full bottle in and it never stopped being slightly painful.  


Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 11/17/2008 5:43 PM (GMT -6)   
miss, get on the Remicade ASAP & see if it helps!!!! Why wait? Are you personally opposed to trying that sort of drug? You sound miserable, & it seems like you''re going an awful lot. Sorry to hear it, truly- I don't blame you for not wanting to use pred again, I feel the same as you. Call your GI & get the ball rolling. Forgot to add this- I don't think the blood loss should cause you too much concern. Even though it seems like it's nothing but blood, all day long, I'm pretty sure it's next to impossible to lose significant quantities of blood rectally. Unless you're hemmorrhaging. But yeah, I'd have to say that's probably a huge part of why you feel like such crap.



diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 11/17/2008 6:05 PM (GMT -6)   
To be honest, I've been interested in Remicade since I first heard about it. But at that time, my doctor said it would probably be great for me BUT it wasn't approved for UC yet, so he wouldn't prescribe it. Then, when it was approved, I wasn't sick enough. Now, my current doctor feels it's definitely at that point but he wanted to try a few things first. Now that we've tried them with no success, I'm more than ready. I've been constantly feeling like I'm on the verge of getting the flu because I'm always so achey and tired. I did just recently get over strep two weeks ago and I'm sure it has my body going haywire, but I'm so over it.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 11/17/2008 6:12 PM (GMT -6)   
When I'm bleeding like that, I eventually get severely anemic (it's the only thing I was every hospitalized for, and I did feel like crap) and have to take iron even though it irritates (Slo-FE is better than feosol which is all that used to be available). But I am suprised that I can generally bleed every day for months and years and my body can keep up fine.

I hope you feel better soon. Sounds like the new treatments are worth exploring.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 11/18/2008 11:16 AM (GMT -6)   
yeah, the anemia gets me too- it is amazing that you can bleed daily & not have serious ill effects! I have tended to be slightly anemic ever since 2007 (year from UC Hell), & I was taking iron supplements for a while. I've since stopped, & my levels are ok, a little low. I generally see blood daily- whether it be pink mucous, a little red blood on the stool, or just a couple drops in the toilet with everything else. I don't even tell my GI, because he'd A- recommend pred again, or B- recommend going off Remicade & heading for surgery. Obviously if the bleeding became heavy, & was combined with an increase in UC symptoms, I'd have to address it. But a little daily bleeding is ok. For me. Yes, ediekristen, please keep us posted- I sure hope your GI is ready to start Remicade by now! Good luck!!!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 

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