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crazy harry health update

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Crohn's Disease
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Posted 9/11/2007 6:32 PM (GMT -8)
hi all. funny how the cycle for me seems to be once i start to get better and it looks like i am getting better and i am beating something, boom - total reversal, or i get something else.

this time it was a reversal. turns out my latest labs show my hemoglobin went from 10.3 to 8.9 in about 3 weeks time (my hemoglobin was 8 before my transfusion in mid july and 9.8 after). my wbc and hematochrit tanked too. they are at levels comparative to just after my transfusion. but oddly enough my rbc hardly went down at all: 3.62 to 3.57. hmmm.... doc said my kidney and liver functions look good.

so let me vent here: i just dont get it. i was doing so well it seemed. the protocol of eating more red meat and taking an iron supplement of organic dessicated buffalo liver seemed to be working. i was also eating a lot more spinach and switched my green earth food from pill to powder (this was a huge benefit energy wise). and i started to take a b-12 supplement too. this is all supposed to help anemia, even the green earth food supplement. so i am confused. i am not seeing any blood nor am i feeling tired. in fact i just had a very active weekend and i cant attribute any fatigue to anemia. i even started going to the gym and surfing in the last couple of weeks and i never felt worn out. i am still feeling fantastic so these results are bewildering. well i dont plan on changing my regiment. my doc wants me to see a hematologist. ok. perhaps i'll have to get some iron infusions in the short term to boost my iron stores.

i'll let you know how things go when i have something new to report.
Posted 9/11/2007 6:42 PM (GMT -8)
Keep us posted Harry...wish I could offer something to your situation. Glad you feel decent though.
Your blood panels really don't make sense to me either!
Posted 9/11/2007 6:47 PM (GMT -8)
JMHO, but you should have seen a hematologist this past summer. ( Before blood transfusions, unless they knew you were GI bleeding. )Did the doc check for blood in the stool? All he needs is hemoccult solution. Is this a GI doc? Because, sometimes it is not that noticable to the human eye, or you can have darker stools. Course iron can cause that. I never took 6-mp, but can that cause blood dyscrasias? You should probably have all your testing done before any iron infusions, usually hematologists want the most accurate samples they can get. Good luck!
Posted 9/11/2007 6:55 PM (GMT -8)
thanks. no, i didnt have any cultures done for blood in my stool. i wanted them done but by then it was too late for me and i needed a transfusion. that was my call cos i couldnt function. it was bad - couldnt stand or sit up straight for more than a few seconds without blacking out and basically slept for 2 days prior. that prompted me to go in and get it done.

i will have the hematologist do all this. i dont see any blood with my movements - on/in the stool, in the bowl, or when i wipe. my stool hasnt changed its color in some time. it is a little dark but then i do take iron supplements and i eat a lot of greens. i cut my 6-mp dosage in half after the transfusion and my white count came up a lot. one theory i had was that the 6-mp was causing or was contributing to my anemia. i've been on it for so long that it makes sense to me that it could be causing some bone marrow suppression. i want to get off of it altogether and see what happens. i never thought it did anything for me but that i've always been kept on it cos that is "protocol" for CD. oh yeah, and when i say doc in any of my emails i mean GI doc. i dont see my GP for anything really.

i am hoping my bloodwork results were a screw up - a goof by the technician or they swapped my sample. i am going to get more done next week, a week earlier than normal (normal now is every 3 weeks).

some one posted a link to an article on how soil organisms can affect hemoglobin in the blood. i take primal defense which has soil organisms. perhaps i should look into changing my probiotic for a bit and see what happens.
Posted 9/11/2007 7:15 PM (GMT -8)
I plugged in 6mp/bone marrow and came up with this site. There are a few threads on it which mention bone marrow suppression. (right hand column under crohn's treatment, maintainance)
This test for blood I mentioned is not a culture and can be done at the bedside in about 1 minute.

http://www.revolutionhealth.com/drugs-treatments/purinethol
Posted 9/12/2007 12:57 PM (GMT -8)
Harry,
these results are disappointing aren't they, after the huge and disciplined commitment you have made to your diet. Hopefully they'll work out why. Keep us posted.
all the best,
Tess
Posted 9/12/2007 6:19 PM (GMT -8)
life is full of minor set backs. i see this as another speed bump. i feel fine so i'll take that any day with anemia vs not being anemic but having D and constant abdominal pain and all the other physical, mental, and emotional problems that go with active crohns. things will improve. shoot, they were just a bit ago. my docs are puzzled at how the iron, hematochrit, and wbc went down so much so fast but my rbc barely moved. who knows, the lab tech could have screwed up. i am getting more blood work done this friday. i had them add a panel to look at my b-12 and such so i can gauge where those levels are. so yeah i am bummed but oh well. life goes on. shrug it off and make the most of what you can today cos that is all you have. let tomorrow be tomorrow. mental outlook is key. i know what i am doing is right, so perhaps i just need more time to heal. who knows. time will tell.
Posted 9/13/2007 4:42 AM (GMT -8)
Just a thought here... your doc didn't happen to change labs where they send blood work, did he? I noticed when we were having my son's blood drawn every 4 weeks that hemoglobin results were different from different labs (we used two different labs). VERY confusing! My doc tried to explain the reason for the difference to me once and my eyes glazed over... Essentially his hemoglobin was staying consistent at the time but the system of measurement was not consistent....I think....does this make sense???

As for probiotics, so far we've been happy with Theralac. You can check it out by googling the name. To me it seems less expensive than VSL or Primal Defense, yet it isn't as inexpensive as some at my health food store. Also has more strains of viable organisms (than what I can buy locally) and pre-biotics.

I think the most important thing here is how you feel. To me, that says everything. I'm glad you are feeling so good, and as you said this is just a speed bump! Now, go surfing!
Posted 9/13/2007 8:06 AM (GMT -8)
I had that low hb, my doctors told me it was caused by the inflamated intestines. Well, he was so wrong. Far later they found out there was a disease in my kidneys. So get a well organized blood work done, it's always a reason when the hb is that low.

All the best from Ingrid :-)
Posted 9/13/2007 10:01 AM (GMT -8)
I had bone marrow suppression while on 6-mp. 2 weeks in the hospital (isolation) and it wasn't fun at all.
Posted 9/13/2007 2:33 PM (GMT -8)
Sorry to hear that your lab work was of concern. I had some wacky results once and a few weeks later everything was normal. I had an infection in my arm and maybe my body was "hiding" iron as a result. I just read somewhere that the body does this sometimes. The total amount of iron in the system may remain the same but the serum level drops. My WBC count tanked too and then was fine a few weeks later. hope it all turns out to be just fine for you. I know you're feeling good and it's such a bummer to learn that something may be awry. Take care...Jamie
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