No More Tests Please!!!

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Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/28/2007 6:46 PM (GMT -6)   
OK, So I went to see my GI specialist today and he said my ileostomy is acting like a colostomy.  By 5:30pm today, I had 2 ounces of output.  He said that a normal person (which obveously I am NOT) with an ileostomy would DIE if they had this little amount of output.  The "normal" person with an ileostomy should produce about 2 -2.5 quarts (approximately 30-40 oz)of fluid a day.  And of course, then theres me...2 ounces.  I have to do another Sitz marker test as soon as I can and make an appt at some motility clinic in SC to have a test done on my small intestines (seeing how I live in Fl, this is not going to be a fun trip).  After that, we will have to wait and see what to do. 
 
At least I have some good news....for one, my bag rarely needs to be emptied and two, I have almost made it 7 days with out changing my bag (Congratulations to myself). 
 
Anyway, there's the update.  Now I know, I'm not normal...go figure? confused
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/28/2007 7:55 PM (GMT -6)   

Ah man, Ames... I'm so sorry about the news.  I was just hoping we were gonna hit on something that would "wake" it up.  Like you conquered your wear time!

You said you would have to wait til after the tests to see what to do.... what are the options?   I'm just curious.

Keep your chin up girl.. we are pullin' for you.

 


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


ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 11/28/2007 10:33 PM (GMT -6)   
Oh no! I'm so sorry you're having problems.

That sucks having to do another sitz marker test. I was in so much pain w/ that test. If you're eating and not in pain what does that mean? Have you been in pain?

How long has it been since your surgery?

Please keep us posted. Am keeping you in my prayers.


(((HUGS))) Kim

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 11/28/2007 10:54 PM (GMT -6)   
Wow--I am so sorry to hear this. Have you been in pain? Does your doc have any clue as to why?

sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 11/28/2007 11:07 PM (GMT -6)   
That just sucks, Amey. I hope things get better, or at least the docs find a solution to your problems that makes having tests, tests, and more test worth it. Hang in there, and keep us posted!
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


Gillcom
Regular Member


Date Joined Nov 2007
Total Posts : 272
   Posted 11/29/2007 3:21 AM (GMT -6)   
Amey, i'm sorry to hear that, it sounds as if your having a miserable time. Please keep strong, Gillian

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 11/29/2007 9:38 AM (GMT -6)   

Amey

I'm so sorry to hear that you're once again having problems. That sucks. Did your doc have any ideas as to why this is happening? I'm still the same...eating prunes and/or drinking prunce juice to go. That didn't work before the surgery, so I guess being able to eat/drink that instead of living on mag citrate is a good thing. I go see my GI next week to see when he needs to balloon me again.


Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's and UC at 17 (now 20). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/29/2007 9:47 AM (GMT -6)   
Have you had motility problems before? Have you ever tried Reglan? It really helped my father in law, who wasn't able to tolerate tube feedings because his motility was too low, made a huge difference in just a few days. I guess it depends on what causes the problem, but it may be worth it to ask.

I hope they can figure this out for you soon. Just remember, when they fix you, your wear time may be shorter, ;0)
Judy
Crohn's Disease   
 
 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/29/2007 10:08 PM (GMT -6)   
amey-there is this sparkling grape juice stuff, welchs makesit and you can only get it around the holidays, it comes in red grape and white grape, it looks like wine (which was so funny, becuase i got some at wal-mart and was showing it to my son telling him how much he would like it, lol, then saying very loudly, it is non-alcholic, after i got some weird looks, lol) anyway i bought some of that, and if i drink very much of it, stuff just pours out of me!
it wouldn't hurt to try
 
 
snaej ni tfel eht no cip


Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 258
   Posted 11/30/2007 9:46 AM (GMT -6)   
I find that Gatorade keeps me flowing. I also found that coffee goes through me rather quickly. But red wine???? Holy mackeral. My wife and I go to a local restaurant just about every night. She will drink 2 glasses of white wine and I will have 1 1/2 glasses. The restaurant is about 1 mile from our home. If the drive was any further I would never make it home. The red wine goes through me that fast. I call it the "price I am willing to pay".

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/30/2007 11:25 AM (GMT -6)   
I have lots of powder Gatorade in my pantry from before my surgery. Does it matter if I use powder? I always add Propel powder to my water to help stay hydrated. I would not be drinking the Gatorade for the hydration rather I would like to help keep my stools fluid.

Thanks,
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 11/30/2007 3:57 PM (GMT -6)   
Sorry to hear you are having a problem. My issue has always been the opposite, too much output. Maybe what I need to stay away from is what you need? Iced tea, coffee and soda makes my system really go.
I hope you find a remedy soon.

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/30/2007 4:50 PM (GMT -6)   
Thanks everyone. I ate 2 scambled eggs this morning and drank about 40 ounces of water before noon. Finally now at 5:30pm they are starting to move. I drank Gatorade around 1pm....nothing. I even mixed it with Miralax...nothing! My tummy is so distended from all the fluids I have put in today that I can't eat dinner. I called the Dr...AGAIN! My blood work came back today and EVERYTHING was low...sodium, potassium, magnesium, gluclose. They said, "Amey you're dehydrated." How can that be? My ostomy is not pulling in water (which is why I have such little output). I am not peeing that much at all and I am drinking about 80oz of fluids a day. Where the heck is it going? And I am dehydrated...what a flppin oxymoron. Of course, I know the answer...get back on my knees and thank God for my blessings. Some days are tougher than others and today is a tough day for me..I am hungry and I can't eat. The only reason I even post this information is so that maybe one day someone will learn from my experiences. I am not trying to whine or murmur. One day I will solve this problem and then others will benefit from my knowledge.

Thanks for listening (aka, reading)
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 11/30/2007 9:22 PM (GMT -6)   
Wow Amey. I hope you feel better soon. It's just not the same coming on here and you talking about how bad you feel instead of busting on me. I'm tellin' ya, it's that Florida heat and humidity. Maybe you exercise TOO much. I know dehydration is a problem with people like us, so maybe it's safe to assume putting your bod through too many workouts might not be good?? Ahhh, i dunno. Get well soon. But feel free to whine anytime, thats why we're here.
 
Crohn's for what seems like forever
Bagged in August 2006
 
 


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 11/30/2007 11:28 PM (GMT -6)   
Amey, I'm sorry you're having so much trouble. And you're definitely not whining! What you've posted is helping "newbies" like myself to understand the rights and wrongs of what is happening with our bodies. I thought my excessive output (55 oz/day) was a major trouble sign when I first read that you were only emptying a couple of times a day. I thought maybe I was supposed to be doing the same thing and here I was emptying 2-3 times an hour. I wish I could pinpoint what runs through me the fastest, but it seems like everything! I don't think water does it though. Coffee, tea and oddly enough, pizza seem to move it along. If I've learned anything though, it's that everyone's body reacts differently. Keep working at it and maybe you'll hit on just the right thing. I'm pulling for you!
-Laura

ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 12/1/2007 12:55 AM (GMT -6)   
What a predicament! You think it has more to do w/ your stomach than your small intestines?

I hope they find the answer soon and you get it all resolved.

Having your abdomen stretched out like that and nothing moving is so uncomfortable and painful. I hope your doctor can give you something to give you relief

(((HUGS)))
Kim

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/1/2007 10:04 AM (GMT -6)   
Thanks everyone. I am not going to post anymore about this because it just brings me down. I want to stay focused on the good parts of having my ostomy - like, I am not dead! Thanks for letting me nag, whine, complain and vent! It helped me mentally get through my day!

Slice! WELCOME BACK! NICE TO SEE YOU BACK ON-LINE! I said a couple prayers for you...they were Florida prays so I am not sure God heard them...LOL Just kidding! {{{BIG HUGS)))
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 12/1/2007 1:52 PM (GMT -6)   
Noooo, come on Amey, you can't just stop posting about it, some of us want to know. If you feel bad complaining on here do it by email, i'll listen. But everyone needs to whine once in a while.
It's like 20 degrees here today, i'm just to tired to whine. haha
 
Crohn's for what seems like forever
Bagged in August 2006
 
 


ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 12/1/2007 6:32 PM (GMT -6)   
You'll most likely be helping someone else out that might be dealing w/ the same issue.

but I understand not wanting to talk about it. Health issues can become so consuming.

But please let us know what solution the doctor finds.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 12/1/2007 7:16 PM (GMT -6)   
You're in my thoughts and prayers, Amey. I hope the doctors find out what's going on and can fix it easily, so you can have some better motility. You have such a great attitude.
Take care,
:-) Cece

Arundinaria
Regular Member


Date Joined Apr 2007
Total Posts : 160
   Posted 12/2/2007 9:19 AM (GMT -6)   
I started a reply and somehow I lost it. You are an inspiration to all of us Amey. Though we have litle in common. That i,s I am old fat and ugly and you are young beautiful and refreshing, I still think of you a lot. My prayers are with you
Ralph
When there are no more choices, tha decision is easy!


Gillcom
Regular Member


Date Joined Nov 2007
Total Posts : 272
   Posted 12/2/2007 10:16 AM (GMT -6)   
I second that Amey!! We are all on a learning curve here, Gillian.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/2/2007 3:22 PM (GMT -6)   
Hey Ralph, Aren't you LDS? If so, we have another thing in common.

Thanks for thinking of me everyone.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


lbw
Regular Member


Date Joined Apr 2007
Total Posts : 24
   Posted 12/3/2007 4:02 AM (GMT -6)   

Hi Amey,

My surgeon told me the reason why your sodium levels get low and you get dehydrated is because your Colon is what absorbs most of the sodium in the body and the more plain water you drink the more your sodium gets depleted so I was told to drink lots of Gatorade and Coke. I hope your Doctor can sort out your problem for you soon.

 

Luke.

 

 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/3/2007 8:47 AM (GMT -6)   
Thanks Luke, I recall my Dr saying something about this too. He said that when I drink too much water I am diluting my sodium levels. I will keep adding scoops of Gatorade and Propel powder to my water.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot

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