sick to my stomach

just got off the phone with my doctor this morning. he says surgery is necessary at this point. i've had 3 blood transfusions since november and i need a few more units today. my iron is dangerously low still (9) and he said i can't rely on blood transfusions with this much blood loss.

my stomach is in my throat right now. i just don't know where all this blood is going. i have a little in the toilet once a day or if i wipe my butt but it's not like tomato soup all day. why isn't it all in the toilet? could it be i'm bleeding from some place higher up like my stomach or small intestine?

i just can't stop crying right now.

Does it have to be a bleeding issue or could it be poor iron absorption?

yeah that seems on the odd side, i'm going 7-10+ times a day with blood and my labs came back showing that I wasn't anemic that my platelet counts were in the 300k range. I agree with sherbear, maybe the bleeding is coming from somewhere else?

thanks guys.

right now, bm's are 3-5 a day still. my iron stores have been low for a while but my hemoglobin is the one that is always going down so soon after i get my blood transfusions. that's what they always base my blood transfusions off of.

i asked the nurse if i could get an endoscopy and colonoscopy to see where the bleeding is since i just don't know. she said if it's higher up, that it could look like coffee grounds in the toilet. my poop is brown all the time so i'm assuming it's brown blood.

i'm just scared. when i had c diff last month, all my bleeding was quite noticeable. my first transfusions in november were like this, too. i wasn't seeing blood in the toilet a lot but my hemoglobin/iron was so low.

can other organs in your body bleed or is it just your digestive track? i'm seeing my doctor next week to discuss what's going to happen. i just wanna barf.

Have you had the pill cam?

Maybe with your blood numbers low...could you get in to see a hematologist?

q

Something just doesn't seem right. I would ask about a pill cam.

I am with killcolitis, doesn't sound right. If you have only ~5BMs a day, where the hell all blood is going? I go about 12+ times a day and blood appears every time, still my Hb is 13.

So why you have anemia? Time to see a hematologist first.

bite marks on the neck?

good idea about the pill cam. maybe that would help see if i'm bleeding someplace higher up. my doc has never mentioned doing pill cams so i'm not sure if he is into them or not. i just don't know.

i've went twice today and both just my normal brown poop. i saw a hematologist once in november for my first blood transfusions and he just said i should be on iron infusions (which i had been for about 4 months already). the iron infusions brought my iron up to 25 at my highest. still low, but better. i ended up stopping the iron because i became allergic (tons of hives).

i just don't wanna get surgery at all. it doesn't seem right if i am having all this weird bleeding. i never have black stools- just brown and sometimes orange (i figure this is from astaxanthin?).

i am not on vancomycin anymore. i'm gonna ask about vedolizimab or even going on remicade again. i don't even know what vedolizimab is but i've seen it mentioned on here. i'm just desperate. i will also ask my GI if he can refer me to a hematologist. maybe i have some blood disorder or something.

"maybe the bleeding is coming from somewhere else?"

even if it's coming from somewhere else, where is it going. She says, she sees very little. Maybe their readers are off but if you're truly anemic, you need to go run all these tests.

3 blood transfusions and you need more...w.t.f. you gotta fix this crap.

Hi Bananagirl,

I would just get off all supplements except probiotics for now. I had to stop everything and just have my UC meds for a while, letting my body just rest and purge.

If you don't feel right about the surgery, don't do it. You'll know when it's right.

My iron was at a 9 too remember? I did the combo flagyl and cipro because I was having that gosh awful diarreah and I haven't bleed in three weeks.

Can you take ferrous sulfate iron? I've been doing that every night also I started Beta Glucan by NSC24.org, it's suppose to help normalize the immune system.

Please don't worry, remember my doc said if I didn't take Humira sugery was next. She's a jerk and my MD gave me my antibiotics and I'm doing great. You don't have to accept negativity.

Keep us posted!

pathogen, my inflammation markers are okay and my WBC is in the normal range. actually, i had 46 blood tests ordered yesterday and the only things that were not in the normal range were H/H and iron/ferritin.

the GI doc at the hospital gave me a prescription for a 10 day course of vanco but i did it for 14 days total. he said it's not good to stay on antibiotics for long in case of developing an immunity to it. i don't think i have c diff anymore but i haven't had any stool tests. i think i'd be having my crazy c diff symptoms if it were still present.

writergirl, holy crap. how do you know all of this? i've never heard of half of the things you mentioned. i usually don't bring anything "different" up with my GI doctors because it's kind of pointless. i'd say my main UC symptom is just exhaustion all the time but that could be from my anemia, too. i just don't understand why all the iron infusions i was getting last year (i had 9) weren't effective either. it's like my body isn't absorbing any iron whatsoever.

Doesn't matter, my wbcs are perfect on paper and I assure you, I've very sick. I posted my blood test results in my thread on mycoplasma and Lyme. Picture of health almost.

No, how you develop an immunity is going off too soon.. What idiots they are it makes me so mad. Fight for long term vanco or whatever abx that you arent immune to before you do the surgery if you have any qualms.

Post Edited (PathogenKiller) : 3/15/2013 8:07:43 PM (GMT-6)