the crazy harry health update

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CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 5/6/2008 6:04 PM (GMT -7)   
i saw the hematologist today. it was a follow up from when i saw him last, which was 3 months ago, and that was 3 months after the last appt. so my last blood work was great, except my iron stores could be higher. they were at like 32 or something. the doc wanted them up at like 50. so i took 1 iron pill/day for the next 1.5 months. so i saw him this afternoon and my blood work was good. i think my hemoglobin had dipped a bit (i think from 17 to 15, but no biggie cos 14 is normal) and my whites were still in the 4 range, but my iron stores had plummeted back to the teens. ouch. last time they were this low i was put on 6 pills of iron/day for 3 months. that is what got me up to 32. so now i'll be doing 3 pills/day for like the next 8 months. i check back in 4 months.

this is a little frustrating to say the least. i thought this anemia thing was behind me. i dont feel fatigued at all, but if my iron levels are this low anemia could be around the corner in the next couple of months. yet my hemoglobin levels were fine, but i did notice a slight dip if i am not mistaken in 3 months time, yet the they are still above "normal" so the doc of course was not concerned. so my iron stores are pretty much non-existent and all the iron is in the hemoglobin of my blood. so i need to boost my iron stores which taking 6 pills/day seemed to have done in the past. i just hope this isnt a new chronic thing now. i suspected it was the 6-mp that caused the anemia via bone marrow suppression. unfortunately, at the same time i stopped that medication i also started taking the 6 pills/day of the OTC iron. so now i cannot be 100% certain that the 6-mp was the cause of my anemia and low iron counts (although i never was, this just debunks that theory a bit more imho). however i was on the 6-mp for so long (like 14 years) that it could have suppressed my body's ability to make iron that it has not yet recovered this function so i still need to supplement with pills. only time will tell. i just dont want another transfusion cos that anemia was brutal and lasted like a week. i am glad this was caught when it was.

so if my iron has tanked, what is going on? am i anemic or becoming anemic? i dont think so, at least not how i did so in the past. i still feel great. i am not seeing any blood with i go to the bathroom in any fashion, nor is dark or D, which are tell-tale signs of passing blood in the stool. so something is going on and that is why i suspect it is the body's ability to produce/store iron. of course the docs just want to monitor it (if you cure some one you lose a returning paying customer and thus put yourself out business - sorry for the cynicism). so i guess we'll monitor this over the next 8 months. good thing i am good pill taker - shoot, i had 14 years of practice at that. so hopefully my iron levels will get back to a normal range in the next couple of months and i will not experience any traditional anemia symptoms, but the problem now is why is this happening and will this be a chronic problem???

good thing i am in the process of scheduling a colonoscopy. the last one i had was 2.5 years ago, so it is time for another. this will tell me if i am actually bleeding internally, at least in the colon. plus it will be a good test to see how the diet is working for me over the last 2 years and being off meds for the past 6 months (potentially 7 months by the time i get the procedure). as i said, i last had it done 2.5 years ago. this was 6 months after my first surgery which removed 8 inches of the colon and 2 inches at the ileum. my GI said things looked great, except for the hole he made with his biopsy (doh! - hence the second surgery). so i am hoping things still look good. i know there is still a bit of active disease at the distal rectum area as i still have minor problems there from time to time, but nothing egregious like in the past. these could be wounds that just wont heal cos the tissue is far too damaged, but i cant have it taken out surgically cos that would mean an ostomy as i'd lose my rectum and all bowel function, so i want to keep it in as long as possible and just put up with the occasional butt burn and sting ray and abscess. in the grand scheme of things, if this is how bad things will be for the rest of my life, or a good long while, i can tolerate it.

enough for now. i'll let you know how things go with this anemia and the colonoscopy.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/6/2008 7:00 PM (GMT -7)   
So if I read it correctly, your stores dropped while you were taking 1 iron pill a day? So what is your hematologist's explanation...or does he have one? Is it worth doing a stool check for trace amounts of blood?

By "stores", do you mean iron stored in the marrow? I know it's all terribly complicated, but I was told by a hematologist that the iron stored in the marrow is the last to go. That your hemoglobin will tank first, then the body goes to the stores. Conversely, when the body replenishes iron, if the stores are low it replaces that first, followed by the blood (partially explaining why it can take sooooo long to recover from severe anemia). Does this make any sense? I only mention it because you say your hemoglobin is okay, which doesn't jive with this scenario. Who knows, maybe I misunderstood...or maybe it's not that simplistic.

The one thing I took away from the hematologist is that there's more they don't understand than what they do understand. They as much as told me so.

Most importantly, I think it's a really good sign that you don't currently *feel* fatigued. Focus on that and the fact that the rest of your blood work was good. And you could very well be right, that your body has not yet recovered its ability to make enough iron.
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 5/6/2008 9:15 PM (GMT -7)   
I agree... It is a good thing you don't feel fatigued....


Anemia sucks....
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 5/6/2008 9:46 PM (GMT -7)   
CrazyHarry said...
 i know there is still a bit of active disease at the distal rectum area as i still have minor problems there from time to time, but nothing egregious like in the past. these could be wounds that just wont heal cos the tissue is far too damaged, but i cant have it taken out surgically cos that would mean an ostomy as i'd lose my rectum and all bowel function, so i want to keep it in as long as possible and just put up with the occasional butt burn and sting ray and abscess. in the grand scheme of things, if this is how bad things will be for the rest of my life, or a good long while, i can tolerate it.

enough for now. i'll let you know how things go with this anemia and the colonoscopy.

Have you ever been on rectal meds?  Cortifoam in particular has helped me on many occassions as I mainly have disease activity in the colon to some degree (in my entire 17 yrs od CD) and on and off in the rectom...try rectal meds if you havn't, beats surgery if you can get away with not having to have it.
 
:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 5/6/2008 9:59 PM (GMT -7)   
i got my iron stores up to about 32 three months ago by taking about 6 OTC iron pills per day (recommended dose is 1 pill/day, but i was under the supervision of a doctor). i did that for about 3 months. at that time he said i had made a vast improvement and was happy. he'd be happier if my iron stores were up to like 50, so that prompted taking more iron, but 1 pill per day. i did that for like 1.5 months and then stopped cos i didnt myself tanking like i did and i thought i'd give it a short little boost for a little while and let my body take over naturally. at the end of 3 months that plan didnt happen as things reversed, and big time. this is what happened the second half of last year with my hemoglobin, rbc and wbc. but this time my hemoglobin and wbc are fine - within the normal range, according to the hemotalogist. so it is a bit baffling that my iron stores are so depleted but the rest of my blood work was fine/great in his opinion. they have no idea why this is happening.

i dont know where the iron is stored in the body. all i know is that i had to get blood work done a week in advance of seeing him so that he'd have the results at the time of my visit. the blood work he had me have done checks the hemoglobin level, the iron stores, and iron saturation rate. it makes sense to me that the hemoglobin can be ok and the stores depleted cos i've used all, or close to, all my stores. but my hem is fine so i can only assume it would be a matter of time before that would nose dive as well.

those 2 episodes last year when i needed transfusions sucked. the fatigue came on all of a sudden and was so exhausting that all i did was sleep for the better part of a week, even a few days after the transfusion (i got 2 units of blood both times). but up until then i was feeling fine and was very physically active. shoot, if i wasnt anemic who knows if i would have been diagnosed with CD back in 1993. it was cos i was anemic that they ordered a whole bunch of tests, and even then i felt fine and was surfing all day every day multiple times cos it was summer. they wanted to give me a transfusion then but i adamantly protested and they relented. granted the rest of the summer i did absolutely nothing which sucked, but oh well. it was nothing compared to what i experienced those few months last year.

so this is another mystery. things could be worse though. the doc told me to get ferrous sulfate. talking to the people at henry's (health food store) you have to go to a drug store to get a supplement with that kind of iron as they dont carry any. good thing too cos the lady there said it was badly constipating - not what i need after having colonic inertia! and it is synthetic iron, which is the type of stuff i am trying very hard to avoid now in my diet. so with her help i found one that is supposed to be non constipating, has no added sugars or yeast, etc etc. hopefully it works. i think it may have been one of the brands i tried when i was taking 6 pills per day as i switched between 3 different brands just to try them.

since my iron is low, i could be hit with something at any time, so i plan to take it easy for a couple of weeks - just tai chi but shorter work outs, no sparring, and only occasional surfing, but short sessions and only if the conditions are really really good. i dont want to push myself to those fatigue levels, but then i dont necessarily think working out will do that. but on the other hand, i dont want to tax my body and exacerbate a potentially delicate situation. or maybe i'm just over reacting.....
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 5/6/2008 10:11 PM (GMT -7)   
pb4 -

yep, was on rowasa enemas, cortifoam, and canasa suppositories for years. i dont know if they worked or not. i am waiting for a prescription to be filled right now for neomyacin suppositories. i have to get it from the hospital pharmacy as the local one wont fill it. i had these once before late last year. i was having some bleeding and the colo-rectal surgeon had me take 2/day for a month. his subsequent sigmoidoscopy showed a vast improvement from using these. so i trust these more than i do the others i listed as i took those for a long time religiously with mixed results. now i only use them if i feel things are bad and i need something short term to put med on the affected area.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

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