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dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1876
   Posted 5/18/2010 3:35 PM (GMT -7)   
I phoned the GI's office today and was told my results were sent to my family doctor.  I have to laugh because  had I not phoned I would still be waiting for another couple of weeks before making a visit to my general doctor. 
 
Anyways there are no changes on my SB scan from last year's narrowing and I'm grateful that it hasn't gotten worse.  The nurse said there is a long portion narrowed (Stricture) but I already knew that, so it's in my hands when I decide to go for surgery.  I'm still not having any major pain which is good.   If I wait as long as I can that may spare more bowel down the road but I will definitely not suffer like I chose to before my last surgery.
 
A change that showed up this year is I'm not able to pass gas as freely as before, a little bit but not as much.  Passing gas use to be my relief from the pressure, now I have to watch because I do have more accidents thinking it's gas when it's not.  I do feel more bloated and stuffed, have more belching and have had little to no form to my bowel movements especially in the last year, but if they say there are no changes (according to my SB test results), then I have to wonder if stress could be the cause of  the symptoms I'm feeling these last few months.  Well, anyways, thank God that there are no changes in the SB dept and hopefully will remain that way. 
Thanks to all those who hung in with me.
 



CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 5/18/2010 6:31 PM (GMT -7)   
Glad to hear no changes from last year. Hope things only get better for you.
Feeling the best I have in several years! And it keeps getting better!

4mg LDN at bedtime, 500mg Pentasa 4x/day, 500mg Vitamin C, 1,000 I/U Vitamin D3, 1 Florastor 2x/day, 1 Nature's Way Primadophilus Reuteri at bed time.
----------------------------------------------
Medication prior to taking LDN: 100 mg Imuran a day (GI wanted 150 mg), 1,000 mg of Pentasa 4x/day, 3 mg of Entocort 3x/day, Librax as needed.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 5/18/2010 7:49 PM (GMT -7)   
Keep in mind the relatively new strictureplasty that allows "repair" of much longer strictures rather than resection. I think they refer to it as U strictureplasty??
My computer says I need to upgrade my brain to be compatible with its new software.


dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1876
   Posted 5/18/2010 8:38 PM (GMT -7)   
Thanks, when it comes time to go in, I will definitely keep this in mind. I even wrote the name down in my address book so I don't forget. I assume we still have to have our long belly incision? Doctor told me that it was too long to be done with laporoscopy. I wonder if the down time or hospital stay would be the same as it is for major bowel surgery?

I guess now's the time to research this info because if I ever end up in an ER situation in the future, there may not be time to choose?


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 5/19/2010 8:43 AM (GMT -7)   
Dorri, give some thought to this. Its just a theory but hopefully others who have enjoyed a prolonged remission from Crohn's disease will chime in w/their experience.

I had a very high grade partial obstruction which I kept "treating" by just about monthly vistis to ER for a shot of demerol and phenergan and then home again to continue suffering.

Finally came the day I obstructed and quite possibly perforated (you couldn't rely on the doctor to be telling the truth. He was one of those who would tell you ANYTHNG to get you to do what HE wanted). I was vomiting what tasted like feces. The surgeon tried to tell me my Crohn's was all up and down my entire small intestine and he HAD to operate. But he couldn't or wouldn't tell me just what he expected to do. For all I knew I was going to end up w/NO small intestine.

Fortunately, I had seen my SBFT films from my Dx 2 1/2 years previous AND several more recent. Always the disease was confined to one area. Back then insurance didn't insist on bouncing you out of the hospital as soon as you were breathing on your own (being facetious here). I spent 6 weeks in the hospital on IV fluids (no TPN back then) and a nasal-gastro tube, NPO except ice chips.

The NG tube began causing quite a bit of pain but when I complained about it I was told "too bad, so sad, you need it". Finally came the day I pulled it out myself. Sure enough, three bloody rings on the tube right where I said the pain was. When "they" insisted they were going to put another NG tube down I PANICKED! Up until then I had finally come to the conclusion I was going to lay there in my comfy hospital bed w/my comfy pain shots and die. (Sounds so melodramatic now - but that is where I was at mentally and emotionally).

I called Mayo, they told me if I decided to come to report to the ER at St Mary's in Rochester. I called the airport, made the flight reservation, called my husband and told him he had 2 hours to leave work, go home, pack some clothes for me, pick me up at the hospital and get me out to the airport. I WAS going to Mayo.

He made it. I made it. The Mayo doctors told me it appeared that my Crohn's was still confined to the one area. That if I agreed to surgery they EXPECTED to resect 12"-18" of mid-ileum. They did tell me that I had a 60%-40% chance the Crohn's would eventually recur. 40% chance it would never recur sounded darn good to me at that point and I agreed to the surgery. They resected 18" of the mid-ileum <b>AND I THEN WAS BLESSED W/A 20 YEAR REMISSION!!!!!</b>

My theory: I enjoyed that 20 year remission from active disease BECAUSE my Crohn's was inactive and in remission AT THE TIME OF MY SURGERY. Thanks to that 6 weeks on IV fluids and whatever medication included and the complete bowel rest and NG tube.

I would suggest that now might be a good time to seriously consider agreeing to the U strictureplasty, if it can be done, whilst you are pretty much asymptomatic w/the only symptoms being caused by the scarring stricture.
My computer says I need to upgrade my brain to be compatible with its new software.


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 5/19/2010 6:47 PM (GMT -7)   
Wow! That is something CrohnieToo.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 5/20/2010 2:52 AM (GMT -7)   
I'm curious about the experience of others who've had long remissions after a resection. I have a high grade partial obstruction at that old anastomosis. I'm in remission or at least symptomatic remission but Mayo has suggested surgery. Possibly the U strictureplasty plus possible balloon dilation at the distal end of the TI.
 
I have a STRONG AVERSION to surgery but every now and then I can't help but wonder if I'm not being a dang fool for not having the surgery now instead of waiting until I "get into trouble" w/that high grade partial obstruction. I've promised my family doctor and my local gastro I wouldn't be so stupid and wouldn't wait so long before agreeing to surgery as I did back then. BUT - I've also told them if they get a phone call that I've ended up in ER they are to admit me and get me stabilized 'cause its only a 12 hour drive to Mayo.
 
That is why I would very much like to know if others who've had LONG remissions after a resection had a lot of disease activity at the time or if active disease was pretty much under control at the time of surgery.


My computer says I need to upgrade my brain to be compatible with its new software.

Post Edited (CrohnieToo) : 5/20/2010 3:59:59 AM (GMT-6)

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