any thoughts or advice???

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smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 7/5/2008 11:22 PM (GMT -7)   
Hi everybody, as usually always around reading your posts and admiring the wisdom! Have a question......Since my resection in Feb. have been doing really well. Quite normal bm and very little D. Joint pain a bit, but nothing to stop me. I have stayed on Pentasa 500mg x 2 a day as maintenace.
 
about a month ago, I was under alot of stress and sadness when our close friends daughter was killed in a car crash. So horrible and to make it worse my husband was first on scene (firefighter) and was working on her. Unbearable sadness.  Then a few other family issues came up weeks later and I think put me over the edge..my poor body is not used to all of this as I try very hard to avoid stress but as we know life hands us situations that are completely unavoidable.
 
I started to have painful D and then constipation? bloated etc.  Then I noticed that when I did have small bm's that the stool is very skinny again.  I phoned my GI and he said to up my dose of pentasa to 4 pills a day and call him in a week.  Well I decided to self medicate myself a bit and I also started entocort 3mg a day also.  We were leaving on a trip to Alberta in a week and I wanted to try and stop any inflammation sooner the better.
 
Well it has been 2 weeks, we are home from our trip and I have kept taking the same meds. I feel a bit better, no D but my stools are still skinny and not much comes out.  I also suffered with a bad cold, extremely sore throat no voice (kids enjoyed that!!) the whole time of vacation. So I can tell my whole system is out of sorts.
 
I have a call into the GI and should hear back from him on monday. I was wondering what you veterans would do if you were me, as far as meds go? Nanners you said you put yourself on a 10 day program of prednisone?  How are you by the way? Would something like that be a good option for me? or higher dose of entocort?  I really don't want to go on prednisone at all, but I really want to get rid of this inflammation going on before it causes any scarring.  I was doing so well since surgery. 
 
I really trust and respect my GI and am anxious to see what he suggests, but I wanted some insight from all of you before I talk to him.
 
Thanks, Shelley
40 yr old wife and mom to two boys 8 & 10
symptoms since the age of 19
officially diagnosed with crohn's Feb/2006
meds: pentasa 500mg x 2/day,probiotic,fibre supplement,mult-vit
glucosamine & msm
resection surgery Feb.11/2008
 


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/6/2008 8:10 AM (GMT -7)   
I would never give medical advice of course since I am not a doctor. However, I talked to my doctor about such situations while I was in her office and she said I could use prednisone if I needed to but to call her as soon as possible. I don't know what your doc would say perhaps you should do what you think will benefit you most for now and then when you talk to your doc get some advice about what to next time as well.
I am sorry you have had to go through all of that and I hope things settle down for you soon.
Sj

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/6/2008 9:49 AM (GMT -7)   
Hi Smile~

I am not a doctor either and never would give medical advice, but since my GI is on vacation and my PCP was not much help, I did make the decision to put myself on a 10 day course of Pred. I am down to day one of 15mg now. For "ME" it has worked pretty well so far. I am no longer having the D or rectal spasms and cramps. Joints are even feeling better. I wonder if it will return when I when completely wean, but so far so good. I was lucky I still had Pred left from last year that was still good. I have the 5mg pills. I started at 25mg for 2 days, 20 mg for 2 days, 15 mg. for 2 days, 10 mg. for 2 days, 5 mg for two days.

I could not afford to wait for someone to get back to me, so I did this on "my own". I too prefer not to use Pred, but my pcp would not prescribe Entocort because he was not knowlegable about. I felt I had to take matters into my own hands in hopes to stop it from getting out of control. God willing this will be all that I need. I already am very careful with my diet. But like you said we can't control the stressful events that happen in our lives and I too have had some heavy stress this past month. But I also have been off work taking a few vacation days since July 2nd. So between the pred and relaxing I think I have kicked this one in the butt. I will be sending my GI a email when he gets back to tell him what I did. Before I started the Pred I did do some blood work so that would be on file for my GI. My sed rate was normal, but it looks like I am slightly anemic, but I have been that way for awhile. This is what worked well for me, but I can't tell you it will work for you too. I would contact your GI if all possible and go from there. Good luck!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/8/2008 2:54 AM (GMT -7)   
Hi ((((((((( Shelley ))))))))

I'm so sorry about your friend's daughter . . . how awful for her family and friends and you and your husband. Sure a stressful time.

Just wondered how you are doing by now. Did you hear from your GI? Just wondering and hoping you are feeling better.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 7/8/2008 7:57 AM (GMT -7)   
Hi Rosie.......we are all doing well considering. Our friends are so broken and it is so sad. But there is a huge support system and we all just help each day the best way we can. My husband is wonderful and I don't really know how he does what he does for all these years as a firefighter and the things he has seen on his calls. But this has shaken him to his core. But we, as in my little family here on the farm, are happy and thankful.

I still haven't heard from the GI. Hopefully today. I still feel the same, maybe a bit better. Not in any pain, just a bit bloated after meals and poops are still narrow. Maybe the entocort is starting to work. Hopefully he will just want to up the entocort to 2 pills a day?

Sj and Nanners, I hope you are well and thanks for your reply, its always a comfort. Nanners how is the weaning going?

Take care,
Shelley
40 yr old wife and mom to two boys 8 & 10
symptoms since the age of 19
officially diagnosed with crohn's Feb/2006
meds: pentasa 500mg x 2/day,probiotic,fibre supplement,mult-vit
glucosamine & msm
resection surgery Feb.11/2008
 


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 7/14/2008 10:15 PM (GMT -7)   

I talked to the GI on thursday and he said to up the dose of entocort to 2 pills a day (6mg) along with the pentasa. I have been doing that, and was wondering if any of you noticed a difference if you took both pills at once during the day rather than one in the morning and one at night? 

I also asked him why I shoulded start at 3 pills a day of entocort and go down from there, but he said no try 2 a day and see if that works first.  I feel pretty good these past few days, my only complaint is that my stools are still narrow.  Do you think taking both pills at once in the morning would be better or make absolutely no difference at all?  thanks!


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 7/15/2008 9:55 AM (GMT -7)   
bump
40 yr old wife and mom to two boys 8 & 10
symptoms since the age of 19
officially diagnosed with crohn's Feb/2006
meds: pentasa 500mg x 2/day,probiotic,fibre supplement,mult-vit
glucosamine & msm
resection surgery Feb.11/2008
 

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