Newbie~Need Advice

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Dimon
New Member


Date Joined Mar 2010
Total Posts : 8
   Posted 3/9/2010 2:40 PM (GMT -7)   
Hi there. I'm a newbie. I was diagnosed last year (9/09) with Crohns and Ulcerative Colitis, although at present the most serious area of concern is of the distel to the terminal ileum. I have two fistulas in that region.
 
I have been encouraged by some to get involved with a forum. I've already had some of my questions answered by just listening. Thanks to all of you for sharing your stories. My heart is truly with you!
 
Currently I'm taking Cimzia. I started with two injections, 400 mg, each at 2 wk intervals (0, 2, 4, and 6 weeks). Now I'm on maintenance injections that I give myself at home every 4 weeks. Cimzia is working quite well for me, but I'm clearly not in remission. At about 3 wks of having the injections, symptoms return-diarehea, intense abdominal pain, etc. These symptoms return for me even on a controlled diet absent of greasy or spicy foods which are the ones that seem to impact me the most. Although, I have not experienced any of the joint pain or flu like symptoms some of you have mentioned. In fact, during the first few weeks, I feel pretty great! I'm able to exercise and eat well with pretty normal bowel movements (a miracle in itself-right?).
 
Need some advice:
 
I'm thinking of switching doctors, or working in conjunction with other doctors. I have had anemia since last sept. I take iron supplements twice daily, but HGB is steadily falling from 9.7 down to 9.0 on my current lab work done 3/5 and has been as low as 7 back in Sept/09. My doctor doesn't seem that concerned about this. I don't want to "just get by" I want my body to function as best as possible. Obviously, I'm tired a lot because of having low HGB. Normally, this number for women should be around 13 optimally, at the very least 11. Do you think I should get involved with a hemaologist? The only thing my GI doctor says, well keep taking your supplements. That is not enough for me.
 
Also, I'm frequently very cold with shivers that always turns into a fever. When I start getting cold, I take Tylenol or Aspirin and it takes care of it in about 30 minutes, them I'm fine. But, I have to do that 2 or three times a day and I wake up at about 3AM EVERY night freezing! If I don't take anything, I shiver to the point where my whole body is shaking.  My TSH is 1.226 and that is good, so it's not my Thyroid. I've read anemia can cause a person to feel cold. Has anyone else experienced this. I shouldn't have a fever everyday should I even if I have Crohns, right? My doctor doesn't seem concerned, but I'm concerned. I need some suggestions.
 
Thanks!

Post Edited By Moderator (Nanners) : 3/9/2010 2:45:09 PM (GMT-7)


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 3/9/2010 4:54 PM (GMT -7)   
try a more tolerable iron complex.
caution using aspirin as you are thinning your blood.

Peaceandhappiness
Regular Member


Date Joined Mar 2010
Total Posts : 131
   Posted 3/9/2010 5:17 PM (GMT -7)   
I use a cast-iron can to cook things; it really gets my iron up. And Twin lab chelated iron, it is easier to tolerate w/some ester vitamin C at the same time, and I lay off the milk products so I can absorb it better. Clams have the most iron.
-Mom of a preschool boy and teenage girl and wife to a wonderful man.
 
  • Hypothyroid w/enlarged thyroid and small cyst- I take care of this with regular labs, diet, exercise, supplements like Zinc, and a couple of thyroid medications. From time to time I take Wellbutrin if I go hypothyroid and feel blue or stressed out and it helps for a couple/few months.
  • I am finding that Magnesium Citrate 200-400mgs here and there for me is very calming when I'm feeling anxious.
  • I have burned out my adrenals before, and self-healed with licorice supplements, B stress vitamins, rest/relaxation/, lots of warm baths, turning the phone off, watching uplifting stuff and not the news, spirituality.
  • For any hormonal stuff Evening primrose oil and Boron 3mgs helps daily.
  • I'm a health nut w/thyroid weight to lose.
  • Just dx'd w/mild Crohn's and Gerd (w/ a sore in esophagus) trying Prilosec to keep stomach acid down (already tried digestive enzymes, avoiding certain foods, HCI Betaine w/Ox bile and so on).


flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 3/9/2010 5:34 PM (GMT -7)   
I use cast iron pans too! Helps alot with iron! Yes, caution using asprin. Hard on the ol' intestines. I usually run a temp at night. I think it's just part of Crohns. Sometimes it's worse than others. Was really bad before my re-section surgery when my fistula's were really acting up. Fever usually means infection and we are fighting it all the time. Seems like some Dr.'s have more bed side manner than others on symptoms. good luck
Flowery
 "Get busy living or get busy dying"
Dx in 2005 with Crohns after a Hysterectomy. Re-section in 2006...came apart so got to do it again! Frequent Kidney stones and Shingles... a new present as of 08-09 Diabetes Type 2. Total of 12 surgerys.
Imran, Asacol, Colestid, Bentyl, Lamotil, Paxil, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!
 
 
               
                        


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8545
   Posted 3/9/2010 6:32 PM (GMT -7)   
Has an iron transfusion ever been suggested? That'll certainly get iron into you a whole lot quicker than supplements will. Surely got to be worth a try.

Low-grade fevers can be par for the course with active Crohn's; it's the inflammation what causes them. The fact that you're shivering makes them sound quite bad though. If they're above 101F your doctor should be taking them more seriously than he is.
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