A little whine with my cheese!

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peggy113
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Date Joined Aug 2007
Total Posts : 1998
   Posted 1/25/2009 5:04 AM (GMT -6)   
DANG!!!!!  I have been battling a little discomfort since the holidays in my lower abd. and some insomnia, so thinking it was just nerves, my GI and I agreed to try xanax, ambien, and increase my bentyl from 1 a day to as needed.  Well all seemed to settle a bit until the end of the week.  It continued to worsen.  And right now, I am pretty miserable. 
 
In the past, I have had a history of scar tissue (adhesions) restricting my stomach from filling like it should as well as emptying into the small intestine.  It took a lot of persistence and testing to accomplish this diagnosis, believe me, and that was well over 10 years ago.  Basically, we fell into this diagnosis just cuz that is the only thing left that it CAN be!  And doing an EGD cures it.   The Scar tissue is on the outside of the stomach and duodenum squeezing and restricting.   So about once a year, sometimes less, I have to have an EGD done -- nooo biggy in my book.  It's just this unnerving pain in my stomach and esophagus ever time I eat anything until I can get in for the EGD.  I called the GI on Friday so I am hoping he has an opening real soon.  I have these same symptoms every time... in fact, I don't usually even have to go to the dr's office for an appt to determine IF I need the EGD.  He just schedules it for me when I call.  Anyway, I woke up hungry about 2 hrs ago in the wee hours of the morning, had 3 oreos and a cup of milk.  I am miserable right now!  I feel like I have a softball in my stomach and the belching is horrible.  Like reflux symptoms.  YUCK!
 
So, you might ask, what does an EGD do to relieve this for me when the EGD looks inside the stomach and duodenum.  Well, in order for them to have their little look-see, they fill the esophagus, stomach and duodenum with air.  When they do that, it busts the adhesions on the outside of those areas and gives me IMMEDIATE relief.  I guess it must hurt like the dickens cuz I raise quite a fit when they are doing it but that is the GI's clue that it is working for me now.  Thanks to the versed, I don't remember any of the pain of the procedure AND I can eat and enjoy every minute of it upon waking.  I am pretty "stupid for about 12-18 hrs after the EGD from the versed....  I require a pretty hefty dose. 
 
Thanks for listening to me whine.  I am so NOT used to having this discomfort.  I remember years ago when this started I was convinced that it was my CD coming back.  NOPE.  Just scar tissue.  Not everyone has issues with adhesions.  I have a history of issues with them from prior multiple abd. surgeries.
 
So now that I have whined, it's time for cheese!!!!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/25/2009 7:18 AM (GMT -6)   
Oh, Peggy, I am so sorry you are in such pain!  At least you KNOW the cause and the cure...and your doc knows to believe you and just schedules the procedure!!  I know, from experience, how wonderful that is...I could call my old CR Surgeon on a friday and be the first patient in surgery on Monday...what service and boy do I MISS him:(
 
Would soft/liquid foods help the pain?  How about an Ensure or similar?
 
Keep us posted on the outcome.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/25/2009 10:12 AM (GMT -6)   
Very small amounts of anything is ok - no spices, no grease, a bland diet is the best, and I have been doing that hoping that things would settle down, but I have been fooling myself.  I really HATE "giving in" to this, but I'm just bullheaded.  We'll see what the doc has to say in the morning.

Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/25/2009 10:30 AM (GMT -6)   
I know the thought of another surgery is just THRILLING, but would they be able to clean out the scar tissue with another surgery? Sorry you feel so lousy. I know sometimes we need to whine about it. I'm like that right now...
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/25/2009 10:38 AM (GMT -6)   
An EGD is all that it takes for me -- no big deal. After it is over I don't remember feeling any of the pain associated with the procedure thanks to the Versed. And I am ok with having it - the sooner, the better. I still get a little emotional and blood pressure rises just before they inject the versed. Just the thought of not being in control I guess. Being very wimpy right now. I'm not used to feeling crappy like this and I really, really don't like it. (Like anyone likes it, right?)
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/25/2009 12:46 PM (GMT -6)   
aww peggy i'm sorry i hope you get all fixed up soon!

finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 1/26/2009 6:29 PM (GMT -6)   

Hi Peggy,

You can whine anytime; I know exactly how you feel.  I have had BIG issues with scar tissue/adhesion problems that eventually lead to several pancreatitis cases so I know how uncomfortable you are.  Stomach issues are the worst when you can't eat anything and you fear even eating the smallest thing giving you pain.

I hope your GI gets you in quickly and you feel better soon.

Prayers to you,

Judy


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 1/26/2009 7:38 PM (GMT -6)   
Peggy,

Souns like you have had your share of problems. You are really lucky to have a Dr. that care and will do something about it. How long have you been going to this Dr?

What are you eating that might be causeing it to act up? What are you eating now, I eat alot of mashed pot. and most of the stuff in the brat diet. I to have problems with scar tissue and there isn't much they can do about it unless thet can do sergery to remove it. Have you ever had sergery to remove the scar tissue?

Hope your DR. helps you when you go to him. I think of you often and always read here everynight as i'm home all the time.

Jan,

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 1/26/2009 8:27 PM (GMT -6)   
Peggy,

With all the help you give everyone here, by all means, whine, scream, kick, cry, have a tizzy fit! shocked

It's difficult to deal with setbacks and you have every right to feel the way you do. I am sorry that you aren't feeling well now, but glad there is a solution for you. Will hope that all goes well and you find relief soon!

Take Care
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/27/2009 3:27 AM (GMT -6)   
My GI dr and I have a great relationship. Been seeing him for almost 19 years now.

He absolutely does NOT want to do any surgery on me whatsoever tho! I told him that would be fine with me -- just ship me back to Cleveland Clinic!!!! Not that we are ever planning any surgeries (knock on wood). He's a really understanding dr.

I have an EGD scheduled for 8:30 Wednesday morning - like tomorrow morning. They realize the issues I have with not being able to eat and weight loss, so they try to get me right in, and usually do. It just can come soon enough for me!!!

Thank you all for listening. There is light for me... just a couple of days away. And I know that I am whining and this is fixable, but when you are used to feeling well, stuff like this really sux!! I like to eat and can eat most everything, tho some things in moderation and only certain times of the day. Food doesn't cause my stomach issue. It Just Happens. So, I will be back to my usual diet by Wed night, if all goes as planned.

Thanks for all your well wishes. This is very minor compared to surgery, etc. I realize that. But, DANG, it hurts. And, I have no control over it -- which just infuriates me. I'm really not a super control freak, but I'd like to think that maybe I should be able to control my own body!!!!! Hmmmm... Our bodies do have a mind of their own.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/27/2009 10:53 PM (GMT -6)   
Ditto what Theresa said! Who needs therapy when you've got us, right? wink

I'm really glad you're getting this taken care of. I'll be thinking about you and hoping it all goes well.
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/27/2009 11:24 PM (GMT -6)   
Finallyfree,
How do scar tissue/adhesions lead to pancreatitis? I've never heard that b4? Just curious how that happens...you know to give myself something else to worry about.

Chassity
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/28/2009 6:12 AM (GMT -6)   
I had to cancel my EGD this morning.  We are SNOWED and ICED in - essential travel only on the roadways.  Schools closed.  Gosh, I hate winter.  I'm waiting on a return call to see how early I can get in.  Fingers crossed for later this week... even if I have to shovel our lane myself.  It's pretty long too.

Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/28/2009 6:30 AM (GMT -6)   
Peggy...I'm sorry it was cancelled:( We have the same thing going on here...I'd come get you in my truck if we were closer!!!!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/28/2009 8:30 AM (GMT -6)   
I was able to reschedule for 6:30 tomorrow morning.  I'm hoping by then, we will have someone come in and plow our driveway.  Fortunately, I only need to travel about 15 minutes to get to the clinic.   But navigating our long lane is going to be a challenge.  This is our first winter living here in our home and dealing with snow.

Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/28/2009 5:03 PM (GMT -6)   
I'll be thinking of you:)

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/28/2009 5:37 PM (GMT -6)   
Me, too. :-)
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/29/2009 11:59 AM (GMT -6)   
Well I am really druggy (they had to 'knock' me out pretty early - like as soon as I got in the hospital gown.  My BP started rising.  At 146/98 the nurse went and got my GI doctor and he said to knock me out asap.  My normal BP is usually 95/55 and he knows that.  So they gave me quite a dose of something pretty quick.)  I tend to get really anxious, the start crying, no matter what the procedure.  I know I won' remember feeling the pain or have any bad side effects, or any of that stuff.  That is just the way I have always reacted.
 
 I feel just plain "stupid" right now, probably from the Versed, but my stomach is feeling TONS better already.  I think we were home by 9:30 or 10.  On the way home, my DH went thru McD's drive thru.  I got an egg mcmuffin, and then we stopped at the local donut shop.  I got THREE.  I ate the egg mcmuffin on the way home in the car and have eaten 2 donuts since I've been home, in between the dozing.  And I still feel hungry.  They always say that I should start my day with a light meal.... ha!  I think I will be eating when I'm not napping today!  I won't be posting anymore today for fear I'll post something stupid.  Hope this makes sense.   I'm really looped right now. 
 
My DH had to go to work this afternoon, so I am on my own.  I've been told not to turn on the stove or oven!!!  
 
I've already asked my DH 10 times if the dr found any new ulcers in my stomach.  Been answered 10 times too... finally DH left the discharge paperwork laying here on the table --  Findings = NORMAL.  Not even an old ulcer any longer.   WOOOO  HOOOOO!!!!   Finally rid of them.  I think that is because I quit carbonated drinks and caffeine.  Sorry for rambling.  Thanks for all of your thoughts.  I'll be back "with it" tomorrow.
 
 
 
 

Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 1/29/2009 1:41 PM (GMT -6)   
Woooohoooo!


tongue tongue tongue tongue tongue tongue tongue tongue tongue tongue tongue tongue tongue tongue tongue

Great news Peggy, I am so glad that you are already feeling better! Take it easy today and eat all you want, just chew well!
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/30/2009 10:20 PM (GMT -6)   
Hey! that's great news Peggy.
Glad you finally got this done. So you'll feel better AND no more ulcers!
Take care and eat eat eat!
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 1/30/2009 11:37 PM (GMT -6)   

Hi Chassity,

Your ? about scar tissue/adhesions and pancreatitis is not a normal occurance.  My body has never reacted in the "usual" way, but anyway, my stomach way surrounded by scar tissue and formed into a ball shape then it adhered to my chest cavity; the dr said that due to it being surrounded by the scar tissue and constricted it could not function properly thus causing the pancreatitis...as I said I was not a normal case of pancreatitis or scar tissue & adhesions...I had my spleen removed at 8 yrs of age and had the scar tissue problem 35 yrs later...they found all kinds of spleen tissue in my chest area-my spleen was crushed due to an accident.  So please try not worry about pancreatitis.  Take the time to heal and enjoy the new life you will have.

Blessings and peace :)

 


 
______________________________________________________________
Judy
 
spleen/appendix/gall bladder  removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/ pancreatitis 3x's/2 knee surgeries-now need replacement/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08-
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/31/2009 6:17 AM (GMT -6)   
That's GREAT NEWS, Peggy!!! yeah
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