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anybody with strictures?

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Posted 11/1/2007 10:02 PM (GMT 0)
Hi,I had my scope the end of September and my inflammation is decreased after being on Imuran,but my stricture is still there (ofcoarse!!),so now I'm on Humira,and will be rescoped in January,my GI is very optimistic that with the combo drugs,the inflammation will be even more down and he will be able to open up the stricture with a scope,and just keep me on the Humira,but I'm not optimistic this whole thing scares me,because I'm scared to death of having surgery and ending up with a ostomy,does anyone have any experience out there with strictures? It's frustratin because I feel fine,but when I have my scopes,my colon looks bad,aggghhh!!!!   I want a new colon,hahaha tongue
Posted 11/1/2007 11:16 PM (GMT 0)
Well, you've got two months to get that stricture under control.  Get to it!  Ha.  Is there any particular reason you're not optimistic that it'll improve?  How big is the stricture and where is it in your colon?  I'm sorry you have this prospect of surgery but maybe, just maybe, your body will surprise you! 
Posted 11/1/2007 11:28 PM (GMT 0)
I can't remember where it is,how could I forget that?? I try to be optimistic,but then the fear just sets in ,I'm a better nurse than patient,haha. I don't think it's very big,my GI likes to keep a close watch on it to be extra cautious,he says he likes to watch it closely        so it won't "scar down". I'll keep you posted,I get my third round of Humira next week,woohoo. Thanks :-)
Posted 11/1/2007 11:52 PM (GMT 0)
Hi Lynn of course we all make better nurses then patients and you do have some more treatments to go yet hoping the Hum works .I can understand your stressing thinking surgery but just relax for now and let the meds work. How have you been feeling I did hear you say you feel fine that sounds good. lol gail
Posted 11/2/2007 12:27 AM (GMT 0)
You don't have to get your stricture to disappear to avoid surgery. You say you feel fine, so why even talk about surgery? Do you mean you feel fine considering the fact that you have strictures, or really fine? Did your GI say why you're talking about surgery? Is your stricture active inflammation, old scarring both?

You only have so much intestine/colon it doesn't make sense to take it out when it is not even bothering you. Especially since the risk of recurrence at the surgery site is so high. If you were miserable, or had several bouts w/ symptoms I would think otherwise, but this doesn't make sense to me. You sound so far from needing an ostomy.

I've had severe strictures (scarring) in my TI for well over 4 years. Once I got rid of the inflammation that was exacerbating it I've been feeling totally fine, like you. I eat pretty much anything, but limit popcorn and seeds just in case. My scopes look scary, but I'm in remission. My GI and surgeon both agree there is no reason to do surgery now. Someday, probably, but why risk the complications and possible additional surgeries when I'm feeling good? I don't regret following this advice. I plan/hope to get several more years of feeling good before I have to consider surgery again. Hope the Humira works for you.

hj
Posted 11/2/2007 12:40 AM (GMT 0)
Thanks,actually hearing from you guys makes me feel better,The stricture is from scarring and inflammation,even though the inflammation is going down. I'm just a "what if" person,which drives my husband nuts,he's also very optimistic. I think I get so nervous,because I remember my GI saying in the recovery room (hey,I was stillsedated!!) that we watch the stricture so closely because you don't want to ignore it where it gets to the point of scarring completely down and then your'e in a emergency situation.Since I started the Imuran I have f elt great,and before that I was  pretty good except for alot of "gagging" in the mornings,haven't had that in over a year,knock on wood. I'll try to stay positive eyes
Posted 11/2/2007 3:34 AM (GMT 0)
I just got scoped earlier this week, and I supposedly have a stricture. I'm going for an Upper GI/SBFT in the morning. I've been flaring on and off for the past 6 months. I'm currently on Imuran, but I'm guessing we'll just have to see what the tests show.

I did wake up during the colonoscopy because the doc was trying to get the scope through the stricture. I don't remember much, but I remember telling him, "OWOWOWOWOWOWOWOW!!!" I had never woke up like that before.

Who knows... I stay confused with my body these days.
Posted 11/2/2007 8:16 AM (GMT 0)
hey lynnRN, i wouldn't worry too much about having to have a bag. there is so much surgically they can do now that it is becoming more rare i think. some of us have had to have one for a while, but have had it reversed when things healed up. i thought it was the end of the world. and for a while it was. but when it was reversed, i was very glad i had the experiance. (not) out of 14 surgeries, i only had a bag once when i woke up. check my website below and see why.
Posted 11/2/2007 1:37 PM (GMT 0)
You can live with severe strictures for years. Stricture management is very subjective. A lot depends upon what a patient is prepared to tolerate -- in terms of transient episodes of pain and restrictions on diet. If you can get the disease activity under control, then a stricturplasty or even a balloon dilatation could give you more years before opting for a resection.Permanent ileostomy is becoming much rarer with the advent of better medications and with the evolving understanding of the mechanisms of crohn's. Talk to your health care providers about your fears surrounding an ostomy.
Posted 11/2/2007 3:13 PM (GMT 0)
I have them doc can not get through not even with a pediatric scope. He raised my 6mp to 75 mg thats the max i cant take for my body weight i am having a scope on the 6th of nov to see if he can get through. I do pretty good i only have trouble when I eat pasta, pizza or other doughy heavy foods i can feel them trying to push through i get a wave of pain for a few seconds but i do really well usually. This is my 4th scope this year i sure hope he can get through or i have to move onto remi or humara.
Posted 11/3/2007 1:14 PM (GMT 0)
Good luck with your scope on the 6th,please let us know how you are,I'll be keeping my fingers crossed,I go Jan.9th for the same reason,my last scope was on Sept.28,showed that the inflammation was much less,but not enough to open the stricture,so I did start Humira,and hoping this will decrease theinflammation even more. 

Posted 11/3/2007 3:16 PM (GMT 0)

I have/had strictures.  37cm of small and 5 cm of large intestine removed in Aug.  Symptoms before: severe fatigue, nausea, vomitting, pain and diahrea when obstructed. Low fibre diet for a year, symptoms progressively got worse. Felt worn out every day.  2.5 months after surgery  the symptoms are pretty much the same, minus the pain.  Now they say its maybe another stricture or possibly intestinal migraines.  Not saying I didn't need the surgery.  But, it didn't get rid of the symptoms.  I agree with the others who say to wait if you are not sick and feeling bad.  Best of luck LynnRN!

Posted 11/3/2007 3:34 PM (GMT 0)
I've had strictures, but they were caused by inflammation that we couldn't get under control. They just kept getting narrower and longer and causing fistulas and abscesses. I ended up having to have surgery because of them too often.

Hopefully you can control your inflammation with medications.
Posted 11/3/2007 4:51 PM (GMT 0)
I have a stricture too. It's in the small intestines somewhere. I am using LDN, and have felt fine all the time, like being in remission. But I have to avoid certain food so I don't irritate the stricture. Well, yesterday I ate onions. I shouldn't. I got SO sick at night, and I have been vomiting and had severe pain untill 4 in the morning. Today I have been taking naps everywhere. 4 hours of pain an constant vomiting without anything left to vomit. Lost my voice! :-) Anyway, the pain I had this time was so different. It was more concentrated to two points in the upper-left quadrant. And the abd. area got really hard, couldn't touch it without vomiting.
So I thought may be I have to contact the ER. Was afraid that this could be a total stop. I live at an island, and if I get really sick, the only transport in the middle of the night is a helicopter. It's really difficult to know when it's the right time to go to the hospital.
Well, anyway, today I feel much better, no pain, only tired.
My doctor won't let me use humira or remicade or ANY other medication, so I hope LDN will give me a remission so there will occur better circumstances for either a strictureplasty or a resection.
I.
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