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Do your symptoms ever not match up to disease location?

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Crohn's Disease
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gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 1/4/2012 3:58 PM (GMT -6)
I know I'm probably posting too often, but I really cope a little better when I have your support....so more whining for you! So I've been struggling along on 30mg of Pred, and I started 6MP on 1/1/12. I'm on a liquid diet and I have successfully advanced to little bits of food like scrambled egg or 1/2 piece of toast at times. It seems like about an hour or so after I try to eat anything other than liquids, I get pains up in my stomach and nausea. I'm also struggling on and off with the pressure feeling in my rectum..tenesmus. I've been messing around with Miralax doses. My stool has been primarily soft and mushy, but if I don't go, I feel bloated and in pain, and if I take too much Miralax, then I get diarrhea. So here's some stuff I'm wondering about:

1. My disease is only in my terminal and distal ileum, and my latest CT showed two strictures. So why would my stomach hurt??? Also, I have no disease at all in my colon. Do you think that pressure feeling is just from the Miralax?

2. My doc told me not to taper the Pred until I am successfully eating solid food. But I'm wondering if the Pred itself is causing the nausea and stomach aches? I don't think it's the 6MP. I've been taking it at night, and seem to do ok, unless it is a delayed reaction.

3. My trip to the ER and partial obstruction was on Dec. 18, and I've been on Prednisone ever since. Does this seem like a long time for me to still be struggling with advancing my diet? Even with the 30mg of Pred, I have not appetite, and nausea that comes and goes. I have zofran, but it makes me too tired in the day and I'm trying to keep working.

Maybe I'm not being patient enough. Any ideas will be greatly appreciated as always. I'm so tired of being sick!!!!!!!!!!!
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Nanners
Elite Member
Joined : Apr 2005
Posts : 14999
Posted 1/4/2012 4:08 PM (GMT -6)
When you say pain, can you describe it a little more? The reason I ask is that you could also possibly have a bacterial overgrowth. When I have had that anytime I would eat anthing I would get really bloated, gassy and my stomach would hurt/be nauseous. So thats one possibility.

But....it could also be your strictures giving you the nauseaous feelings. I know when I had mine I was always feeling pukey. Sucked big time. The Pred can also cause you to get GERD like symptoms too, so that could be the culprit. And for some the 6mp can cause nausea. But with you taking it at night, I would think that would help some. At least it did me. But the 6mp does cause nausea for some in the beginning and maybe its the culprit, but from what I hear that gets better within a short time. Hugs!
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stripey
Veteran Member
Joined : Feb 2011
Posts : 1059
Posted 1/4/2012 4:38 PM (GMT -6)
I have a stricture that ccauses things to get stuck sometimes and when that happens it always makes me sick and my stomach hurts even though the stricture is at bottom right hand side of me right by where my hipbone area is. You could always try something like omeprazole for acid reflux as that can also make you feel queasy. I think (may be wrong) that 6mp is similar to the azathioprine that I take and these meds can take up to 3 months to work on your system properly so may take a few weeks to reduce the inflammation down, in the meantime stick with the foods that you can tolerate and see if meds for acid reflux help at all with the stomach pain. Strictures slow down your digestive tract and this can affect your appetite and the feeling of bloatedness. Do you need to take the miralax and have you tried Gas X for the bloating?
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kazbern
Veteran Member
Joined : May 2010
Posts : 8384
Posted 1/4/2012 5:53 PM (GMT -6)
Prednisone is notorious for causing acid reflux, so I would agree with stripey that you might try a proton pump inhibitor, or even just an antacid after you eat. I'm glad you've gotten to the point of eating some solids, that is great.

As for the miralax issue - I am still trying to figure out how to dose this properly. A friend who doesn't have IBD but struggles with constipation agrees that miralax is hard to get right. Depending on what you're eating, either the stool is too soft or too hard, too frequent or not frequent enough. I've settled on 1/4 dose every 48 hours, but I'm still suffering from slow days and fast days. Ugh.
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gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 1/4/2012 7:12 PM (GMT -6)
Thanks everyone,
I think you are right that it is probably the acid reflux. I am taking omeprazole. (generic Prilosec) I think the combo of barely eating, the Prednisone, the new 6MP, the new flare and inflammation is all doing a number on me. Kazbern, my husband also reminded me that although I'm very frustrated with this incredibly miserable and painfully slow process, I am ever so slowly getting a little better and adding some solids. I am shocked at how slow the process is. I'll try reducing the Miralax....I have such a fear of the pain, and I hate when I feel like things are not moving. Thanks once again for all of your support. I miss the days when all I had was some tenderness in my ileum!!!
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