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  1. K

    Humira Blast (High Loading Dose)

    Hi all, Long time, no post for me. I've reached an impasse and it seems I don't have much in the way of options left. I've failed remi, humira, cimzia, entyvio, imuran, ldn, and combos of lots of the above. I'm currently testing a Humira "blast" where loading doses are 160mg every week for 4...
  2. K

    Blood Test Results 4.5 months after Ostomy Takedown and Resection

    I'm usually pretty good at reading my blood tests and I usually don't post things like this but I'm at a loss. Low levels are in Green and High levels are in red. What does everyone make of this? Am I flaring again? High CRP but is it really high? I realize I'm anemic but I'm usually pretty...
  3. K

    Dumb Question

    :sign0085: I can not for the life of me figure out what you are supposed to use those little stickers they give you with the filtered bags. Obviously they are for the filter in some capacity, but what is their function? Thanks!
  4. K

    It Seems Stoma Stuey Fits Me

    Sooo I got my pre-reversal bloodwork back and its the highest hemoglobin I've ever seen since diagnosis. I was at 11.7 which is ALMOST normal. Like normal people normal :) Also every other thing was spot on, CBC was great, liver enzymes awesome, clotting factor cool. I didn't have a Sed rate or...
  5. K

    Physical Therapy After Surgery

    I thoroughly recommend getting a physical therapist who will gently ease you back into core strength. I'm going now (I waited my 8 weeks after surgery to get weight restrictions lifted) and although it is hard and I go home sore, it has helped me so much. I'm going 3 times a week currently. I...
  6. K

    Just a Bag and Baseplate?

    Is anyone able to put a bag on without using stomahesive (or any other powders) or Cavilon (or any other barrier wipes)? I ask this because I tried a convex bag the other day and went straight to work. BAD idea. So not only do I think my baseplate didn't have time to really seal to the skin...
  7. K

    Just Started Cimzia

    I just started Cimzia this morning. Had two shots (200mg each) and injected in my legs. I will say that once you just inject yourself its fine. Its WAAY less painful than Humira was and easier cause you can stop pushing or slow it down if it starts to sting a bit. So far I haven't had any side...
  8. K

    Getting Back into Exercise Post-OP

    Anyone have any suggestions on how to do this the best way? I've got to get my abs back into shape but I'm afraid I'll pop a hernia. I had emergency open laparotomy on 9-26 (so about a 7 inch scar) which ended in a ileostomy. I get medical clearance for doing exercise on 11-21 (next Wednesday)...
  9. K

    Surgical Mucus Fistula Output

    Hi, Wondering for those of you who have a surgically place mucus (mucous) fistula-- How much mucus does it output? Since surgery on 9-26-2012 I haven't had much output... just enough to cover with a gauze pad and change everyday. Recently, however, I noticed a bit of mucus in there and while...
  10. K

    My Stoma -warning- pictures for Persephone300

    I saw Persephone300 was upset about the look of her stoma, so I thought I'd throw up some pics of a non-spouty stoma to show her how its okay if its sunken in. :) I had my surgery Sept. 26 Here is the area in general with my bag on and my mucus fistula Oct 11 (2.5 weeksish postop): And...
  11. K

    Old Member- New Illeostomy

    Hi everybody. I haven't been 'round these parts in a while... Well last week I had a colonoscopy with balloon dilations. The doc tried to dilate the stricture at my terminal ileum and POP... bowel preforation. Only he didn't know I had a preforation and they made me lay in recovery for an hour...
  12. K

    Allopurinol

    Ok I've done some searches here about the uses of Azathioprine and Allopurinol together. And from what I can gather its just tricks your liver into processing and metabolizing the drug better. My doctor wants to start me on this drug, but I'm a bit nervous because I'm currently taking 250mg of...
  13. K

    Bile Ducts?

    Hi All! I just had my appointment with my new doc here in Michigan and he did a full workup of blood (EIGHT vials). They all came back and here's what I got: Elevated inflammation markers (SED rate and CRP): which honestly I'm not surprised by this... I mean I do have Crohn's Disease. So the...
  14. K

    Docs in Michigan?

    Hi all, I've just relocated and I'm in need of a GI in Michigan, any suggestions? Preferably near the Ann Arbor area. I have a referral from my current doc to see a Dr. Peter Higgins... name ring a bell with anyone? Any input would be appreciated!
  15. K

    Cipro Recall- Injections Only

    Here's the link to it: http://www.fda.gov/Safety/Recalls/ucm214220.htm I guess they had floating matter in the liquid injections.
  16. K

    Lactoferrin?

    Does anyone know anything about lactoferrin? I was in the doc's office today for 2.5 hours and while waiting a lady had a man with her with binders full of info on natural stuff... and he was talking about something called lactoferrin... I wanna know if anyone knows anything about this.
  17. K

    Running out of Options

    So... had my consult with the new doctor today to discuss the future and my colonoscopy I recently had. Basically he said that my disease is now classified as severe Crohn's and that were we to have to go the surgery route, he would have to take the whole colon and part of the small bowel...
  18. K

    Seeing a specialist... I thought I was...

    Hey guys... so I had my "after the semester" appointment with my gastroenterologist and basically it was the same old same old... I went in, asked how I was doing, told him the double Remicade is lasting about 4 weeks, laid down, pushed on my stomach, asked if it hurt, I said yes.... sigh. So...
  19. K

    Benedryl and Atypical Reactions

    So... I had my Remicade infusion yesterday and about 40 minutes in I had another "panic attack" type thing. My HR went to 138 (from 80), BP was pretty high and my temp spiked a bit. The best way to describe it is it felt like I was very excited in the chest and I couldn't breathe correctly...
  20. K

    Well well well.

    So I called my doc... the double dose of Remicade is lasting 6 weeks instead of 8 (but better than the 4 on a regular dose). He suggested a colonoscopy (woo hoo! ... :|) and some other biological agent. The only one I can think of is Cimzia... because my doc is WAY against Tysabri. I have a...
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