Need advice and help

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Debra Ann
Regular Member


Date Joined Nov 2005
Total Posts : 188
   Posted 11/3/2009 1:55 PM (GMT -7)   
Hi All,
I haven't been on the boards in awhile, I have been studying for state boards and trying to get a job that my crohn's will tolerate.  I had one job that I really liked, however, it was 11-7 and I wasn't able to sleep during the day and that caused the crohn's to flare.    Now, I have a part-time job, it is day shift, and the stress level is high, so needless to say I am still flaring since April.  In september I was admitted to the hospital for rectal bleeding, my blood count was down to 7.0.  I was on coumadin for atrial fib and that helped me to start bleeding.  I received 2 units of frozen plasma and 5 units of blood, my BP was down to 80/40 and I was on my way out.  Saturday night the bleeding started again.  This time my hemoglobin was 13 before the start of the bleeding, is went down to 11.3 on saturday, 10.4 on monday and today upon discharge it was 9.4.  If I have any severe pain, high temp or bleeding that I can see I have to go back to the ER.  I spent 2 days in the ICU and hope that the bleeding doesn't start again and that the blood count goes up. 
 
My question is, what meds is everyone taking for flares?  I am on 1 gram of pentasa, 150mg of Imuran, tapering dose of 15mg of prednisone.  I can't take Remicaide, I developed antibodies to it.  I am afraid to take any of the biological meds for fear that it will be remicaide all over again.
 
Any advice you can give will be greatly appreciated.
 
Debbie

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/3/2009 3:38 PM (GMT -7)   
Boy, you really have to walk a tightrope! If the medical community knew anything about atrial fib, it might make figuring out what to do a bit easier. Between bleeding and flaring, balancing your body chemistry is going to be tricky. Are they sure that the atrial fib was not the result of electrolyte imbalance caused by diarrhea? It would be a lot easier to control your electrolytes (and stop the coumadin) than to avoid flares.

Anyway, suggestions... The medical route for flares is prednisone which you are already getting. They may be holding back a bit on the pred because it alters your electrolytes somewhat. You might do better with endocort which acts more locally on your GI tract.

You could try going on the SCD plan (see: http://www.scdiet.org/) which might be able to get you out of the flare. If you want to go the medical route, their version of this solution is the enteral diet or the elemental diet. This approach has been shown to be as effective as prednisone in controlling flares. It is not a gourmet treat, but you would be on it for a few weeks for it to kick in.

Do you use probiotics? The right ones have been shown to help control inflammation. Good ones include Culturelle, Align and VSL#3.

Finally, if you are taking iron supplements, do not use ferrous sulphate or any ferrous salts. They do more harm than good. The only real solution is heme iron. There is a supplement called Proferrin that is more effective than ferrous salts.

Debra Ann
Regular Member


Date Joined Nov 2005
Total Posts : 188
   Posted 11/3/2009 8:21 PM (GMT -7)   
Thank you so much for your input. I really appreciate it. I have stopped the coumadin and am currently taking an 81mg aspirin.

I do eat the activia yogurt. I was using the ferrous suplhate, but recently started taking the heme iron.

Thanks again for you input.

Debbie

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/3/2009 10:36 PM (GMT -7)   
Do not stop the coumadin without your doctor's input. It would be nice to avoid it, but there is a real risk of stroke if you have more atrial fib without coumadin. Stroke does not go away and can be lethal. Aspirin is also a cause of bleeding and probably not any improvement on coumadin without the same level of protection. Aspirin is also an NSAID and they are known causes of Crohn's flares.

Debra Ann
Regular Member


Date Joined Nov 2005
Total Posts : 188
   Posted 11/4/2009 7:15 AM (GMT -7)   
My PCP stopped the coumadin and started the aspirin. I haven't went into atrial fib in a very long time and I was on a monitor this weekend and there is no signs of atriall fib.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/4/2009 7:31 AM (GMT -7)   
I get atrial fib any time I throw up alot. The A-Fib goes away within hours. Docs have always wanted me on coumadin, but I don't feel I have true a-fib as it only occurs when I throw up forcefully, which is not very often. So maybe you are the same.

As for meds I would continue with the Imuran. I know that Zanne, another member, has been on 6mp for about 10 years and she has had to add Prednisone into the mix occasionally and it has been enough to quiet her flare. Maybe you just need a quick burst to quiet things down for you.

Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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