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So the current answer is....it is a stricture....

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Posted 5/1/2014 1:59 PM (GMT 0)
Just heard back from GI office following the SBFT.  Not much info until I see him in end of month, but he wanted to confirm that it is "a stricture that has been stable over the years.  Dr wants you to stay on the prednisone as currently planned and he will see you at the end of the month".

So...to me this says...nope not going to the bigger meds as they address inflammation not stricturing.  I need to be a good girl and get back to "my body approved diet" (basically I do really well if I stick to no veggies, no fruit, fish/chicken only, fill up on milk).  So I am looking at what does a stricture mean for me since although he says it has been stable...it apparently is more of a bother these last two years.  Will start looking into the balloon option...who knows maybe 24 years later it is time for a new resection.

Since my gut pain seems to flare with the hot flashes, going to look into ways to tame those and see if I can't avoid a procedure too.

Overall, this news makes me happy.....despite some wicked gut pain last night.  I am enjoying some happiness for a while!!!!!!!!

Posted 5/1/2014 2:07 PM (GMT 0)
If it's scar tissue then I think you are right - sticking to a low residue diet and thinking about resection or dilation. Any indication of how much opening you do have? What are your DR's criteria for doing a resection?
Posted 5/1/2014 2:09 PM (GMT 0)
If you go the balloon option, I hope it works, that's a long time to have issues with a stricture.
Posted 5/1/2014 4:51 PM (GMT 0)
Hi Habs,
I think even after reading everything in sight, I'm still confused. What is the difference between "bowel thickening" and a stricture? And if your stricture is not due to inflammation, then why are you on steroids at all? I am asking for selfish reasons, as I'm trying to figure out what is going on with me too. I hope you keep feeling better
Posted 5/1/2014 7:05 PM (GMT 0)
I hope if the steroids don't help, as you say if it's not inflammation it's not going to help, a dilitation will. I only had the one done soon after surgery and thankfully it's "held" for 13 years.

As to hot flashes, I stopped Premarin for several years. I got sick of the hot flashes and since I have no ovaries I decided to go back on a low dose of estrodial ($4). Post menopausal women normally have some estrogen output but for those of us who have none, it makes sense to me to take it for bone health. The cheap estrodial has worked far better for me than Premarin ever did. I have enough to deal with. I still have a mild flash here and there but at least I can sleep w/o the air conditioner running in the winter.

Post Edited (JaSanne) : 5/1/2014 1:15:41 PM (GMT-6)

Posted 5/1/2014 7:17 PM (GMT 0)
gumby...you are not being selfish!! I am taking some cues from you too!

As for the steroids...I think he is leaving me on them more because I insisted on trying them before he pushed more for the bigger meds.  In the past, pred kicked me back and I think this is different as it does not seem to be helping.  I think I am an experiment in progress...I do still feel like my thoughts are news to him sometimes.

He has not actually completely said inflammation or narrowing/scarring yet.  I don't think I will know until I see him.  I am going by my "gut" hahahah that the pred (and the entocort before it) did not seem to be doing anything so I am doubtful of inflammation.  I am also doubtful of inflammation if he thinks the narrowing has been "stable"  whatever the heck he means--have to ask that too.  Quite frankly, I am in a good bit of pain today...even more than before the pred so I really have some doubts about inflammation.  I did have some Diet Coke last night and I know that is a no-no....but we are under contruction and I could not even get to the faucet!!!   Going to buy some safer foods tomorrow night and be more careful!!!

Posted 5/1/2014 8:29 PM (GMT 0)
Thanks Habs....I also tend to go to the "What did I do wrong this time?" mentality when I'm not feeling well. I think this disease just sucks. Maybe the Chinese veggies tipped the scales, but the problem was already there...same thing for you and your Diet Coke. I was hoping for things to move along and I'd be discharged tonight, but nothing is happening yet....no gas, no movement, and continued cramping, although that is better. I've been walking the hallways like crazy trying to get things to move, but no luck yet. My guess is that I will need another day of steroids, but we'll see what my GI says when he checks in tonight. I'm still officially on "observation" and not admitted yet, even though I'm in a regular room. I don't quite get that.
Posted 5/1/2014 8:55 PM (GMT 0)
I have two nasty strictures like that Habs. We've finally figured out that a tiny bit of inflammation in the area causes all he to break loose, but when there's no inflammation (and I follow my low res diet indefinitely) I'm all good. So maybe that pred and the diet will do the trick.
Posted 5/2/2014 12:37 AM (GMT 0)
That "observation" stuff creates insurance nightmares! NBC nightly news did a segment on this a few months ago so now I always check to make sure i was admitted rather just on observation because according to the segment, insurance has refused claims from patients under observation.

Hope you are doing better! Take care!
Posted 5/2/2014 1:45 AM (GMT 0)
I hate the American insurance system. I guess it's another headache I'll have to check into. I can't imagine this won't be covered though...I certainly have very legitimate medical reasons to be her...its a bowel obstruction for god's sake!
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