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Sick - doctor is pushing surgery.

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Posted 1/24/2013 8:50 PM (GMT 0)
Hi All. I have been pretty sick since Christmas. Basically in pain, losing weight, and sooo tired. I have taken all week off from work and all I do is sleep. My husband called my GI yesterday (I was refusing because I didn't see the purpose, but that's another story). Now we have an appointment tomorrow And doctor said we really need to consider a strictureplasty. My reluctance is that we do not know for sure that the areas of dilation in my small intestine are from scar tissue. Does anyone have experience with this procedure? I am desperate for relief! Right now I am on remicade every 6 weeks. Just had an MRI that shows dilation in the small intestine that has been consistent for the last year or so. I DO feel better after the Remicade infusions, but only for about 3-4 weeks. Thoughts?
Posted 1/24/2013 10:23 PM (GMT 0)
Hi has your GI doctor try to in cress your Remicade dosage yet?
That may help.
Posted 1/24/2013 11:42 PM (GMT 0)
Everything is a guess and everything offered has helped someone at some point.....how do we decide if it will help me? Try it.

my daughter has been sick since August with vomiting, headache, stomach pain. Five hospital stays, TWO surgeries for strictures three weeks apart, Pill cam, Upper GI, two small bowel w contrast, MRI with contrast,, 5 doses of Remicade, 40 days of Methotrexate, pentasa, prednisone, etc.. and she is still on TPN and unable to eat more than 1/4 cup of anything and not vomit.

We had big hopes for the surgeries as she did have two strictures and everyone else seems to have a wonderful time after the surgery and wished they had it sooner because they finally felt so well.

If you have a stricture have the surgery and you may have a life altering, pain free, time for many years as have others. If it does not help, try, try , again..

Goodluck!
Posted 1/25/2013 12:47 PM (GMT 0)
Hi! A very simplified answer to your question of how to know if it is scar tissue or inflammation is "does the pain/issue reduce with prednisone".  Personally, that is the answer I am getting right now.  They are unsure if mine is inflammation or scarring.  GI told me (and I do believe him) that if I saw signficant relief from prednisone, then it was likely inflammation.  I dont know if the same would appliy to Remicade...but I would think so.  Seems like there has to be a better way to tell this.  I had too fast a taper to tell for sure, but I am of the belief that the pred was helping and I am going to try pred one more time before I consider surgery.  I felt better at 20mg then lousy again after the next drop off---maybe increasing remi is an option for you.

 

That being said, I am not afraid of surgery (aside from the cost and work time lost).  My surgery in 1990 gave me 22 years so far of no other surgery--so FOR ME it was the best thing.

 

Finally, it sounds like you are not completely satisfied with your GI.  I may be reading that into your post.  Is a second opinion a consideration?

Posted 1/25/2013 10:50 PM (GMT 0)
Thanks you for your replies. I live my GI, but he is super conservative and I feel likes to do tests, try a, b, and c before we move on to something more drastic. Basically it took like a year after I felt the Humira stopped working before we finally moved to Remucade, even though we talked about it at every appointment. He will not prescribe prednisone while I'm on the remicade, so I can't see if that wod help. I was on entocort for about 3 months and didn't notice it to be too helpful.

I have a remicade infusion on Tuesday and an appointment with a surgeon in march (although my GI said he would call him personally to see if he can see me sooner, the surgeon us just out of town this week). My doctor said if I feel a lot better after the remicade he will increase the dose and frequency.
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