Please think happy thoughts...

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Sami'sMom
Regular Member


Date Joined Oct 2009
Total Posts : 32
   Posted 11/25/2009 7:54 PM (GMT -6)   
Sami is going in tomorrow for colonscopy, ileoscopy, and endoscopy and for more biopsies. They will be checking on the progression of her disease and to see if she will be able to keep her rectal stump. Also to check her pancreas as something is up with it and is giving her extreme pain. Because of the issues she has been having with the rectal stump, there is a thought that it may have to be removed. Please keep her in your thoughts as the thought of removing her stump has her extremely scared. She has been hoping against hope that some day she would be able to have a reconnection, even though we were told the chances of that were very, very, slim. It makes me very sad that my 12yr old already has to go through what she has and may have to have her ileostomy for life.
 
Thank you.

Mom to 5 special children
 14yr old- GAD, PTSD, ODD, LD
 12 yr old- Crohn's Disease-total Colectomy Feb 09, PTSD, Dystymia, JRA, Asthma
 11 yr old- Globally Developmentally Delayed, Low Cognitive Functioning, PTSD
 10 yr old(almost)- Epilepsy, Unspecified Social/Emotional Disorder, PTSD, LD
 32mth old-Bright and Happy


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/25/2009 8:59 PM (GMT -6)   
i will be thinking of her. I hope you get good news
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 11/25/2009 9:20 PM (GMT -6)   
I will certainly keep her in my thoughts and prayers. She is so young to be going through all of this. Happy thoughts are on the way!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/26/2009 6:56 AM (GMT -6)   
Sami is in my thoughts and prayers, too. (((big hug)))

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


Sami'sMom
Regular Member


Date Joined Oct 2009
Total Posts : 32
   Posted 11/26/2009 7:59 PM (GMT -6)   

Thank you everyone =)

I was wrong, the one scope was not a colonoscopy, it was a flexible sigmoidoscopy. Makes sense now, as she doesn't have a colon. That scope showed the stump is really badly diseased. She is going to go back on a cortienema(sp?). Her dr said that if it works and she has to be on it all the time, then so be it. It is better than losing the stump. But as it stands, she will not be able to have a reconnection as she will always have problems if it were done.

The endoscopy didn't show any worsening of the disease, but the dr said we will have to wait for the biopsy results for confirmation as it isn't always visual.

Her stoma is narrowing (stricturing?) so she has to go back to the surgeon who did the ileostomy for a consult.

The pain she is having is probably not all just from the pancreas, but also deferred pain from the diseased stump.

Today's results could have been better, but all in all it could be alot worse.

Take each day as it is and be thankful that I still have my daughter. There are people in alot worse situations.

 

 

 

 

 

 

 

 

/


Mom to 5 special children
 14yr old- GAD, PTSD, ODD, LD
 12 yr old- Crohn's Disease-total Colectomy Feb 09, PTSD, Dystymia, JRA, Asthma
 11 yr old- Globally Developmentally Delayed, Low Cognitive Functioning, PTSD
 10 yr old(almost)- Epilepsy, Unspecified Social/Emotional Disorder, PTSD, LD
 32mth old-Bright and Happy


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 11/27/2009 7:40 PM (GMT -6)   
We are thinking of you and Sami. You are so right that there are people out there in a lot worse condition..however, it does not make our individual issues any easier. By the way...you sound like an amazing mother and deserve a few medals!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/28/2009 12:36 AM (GMT -6)   
if they cant reconnect her, why do they want to keep the stump?
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Sami'sMom
Regular Member


Date Joined Oct 2009
Total Posts : 32
   Posted 12/1/2009 9:49 AM (GMT -6)   
Thank you everyone.
 
Summerstorm, I think the hope is, is that someday they can reconnect her. But it confuses me because when she had the colectomy done, the surgeon said it would be unlikely. She also said that if they were going to try to reconnect her they wouldn't do it until she was finished growing.
 
Sami's GI dr that did the scopes said the condition it is in they won't be able to reconnect her, but want to try the cortienema to see if it will help reduce the inflammation. She has been on the cortienema before and it stopped the bleeding, but when she is done the course of the med it starts back up again. I don't know if doing all this is going to do more harm than good?
 
She has had the diagnoses of the disease for 2 yrs now, but I still have so much to learn. It gets confusing sometimes.
Mom to 5 special children
 14yr old- GAD, PTSD, ODD, LD
 12 yr old- Crohn's Disease-total Colectomy Feb 09, PTSD, Dystymia, JRA, Asthma
 11 yr old- Globally Developmentally Delayed, Low Cognitive Functioning, PTSD
 10 yr old(almost)- Epilepsy, Unspecified Social/Emotional Disorder, PTSD, LD
 32mth old-Bright and Happy


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 12/1/2009 7:20 PM (GMT -6)   
Just wanted to know that I'm thinking about Sammi.

I wonder why they want to wait for her to stop growing b4 they tried to reconnect her?
I met a few children with j-pouches when I volunteered at the CCFA camp. One little girl was 3 when hers was done......?
She now has totally normal bms...according to her.

I really hope the enemas work for her.
But even if they don't, feeling good with a permanent ileostomy is better than hanging on to a sick stump and still feeling miserable.
Even if that is hard to see 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; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

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


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 12/1/2009 7:20 PM (GMT -6)   
Just wanted to know that I'm thinking about Sammi.

I wonder why they want to wait for her to stop growing b4 they tried to reconnect her?
I met a few children with j-pouches when I volunteered at the CCFA camp. One little girl was 3 when hers was done......?
She now has totally normal bms...according to her.

I really hope the enemas work for her.
But even if they don't, feeling good with a permanent ileostomy is better than hanging on to a sick stump and still feeling miserable.
Even if that is hard to see 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; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

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


Sami'sMom
Regular Member


Date Joined Oct 2009
Total Posts : 32
   Posted 12/10/2009 9:13 AM (GMT -6)   

I honestly don't even know what a J pouch is? Is that what they mean when they talk about reconnection?

I get frustrated sometimes because I don't know what to ask all the time, or I get confused with all the information that gets thrown at me. I really need to go to one of the parent support groups here. There I would be probably be able to sort out the information better and find out what I should be asking. I always ask questions but then I find out that I should be asking more or haven't asked the right ones, like what a J pouch is lol Someday I will be more literate in all of this.

I read the posts here and find out stuff I didn't even know. This site is being really helpful. Thank you.

 


Mom to 5 special children
 14yr old- GAD, PTSD, ODD, LD
 12 yr old- Crohn's Disease-total Colectomy Feb 09, PTSD, Dystymia, JRA, Asthma
 11 yr old- Globally Developmentally Delayed, Low Cognitive Functioning, PTSD
 10 yr old(almost)- Epilepsy, Unspecified Social/Emotional Disorder, PTSD, LD
 32mth old-Bright and Happy


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 12/10/2009 6:19 PM (GMT -6)   
Mom-
Yes, jpouch is reconnection. It is when the surgeon creates a "pouch" from the small intestine where the waste will now deposit and then empty through the bottom.
 
I hope your daughter is doing better and you are able to find a parent support group.
 
 
Jackie, 44
Pancolitis, DX October 06
Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- REVERSAL:::::: October 23rd -YEAH!


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 12/10/2009 9:23 PM (GMT -6)   
Hi...my heart so goes out to you. Have you thought of making an appointment with your family doctor just for the purpose of sitting down and talking? This is part of their job and they will likely spend a lot more time with you than the specialists sometimes will. I also think that your family doc may explain things in a more understandable manner.

I think that the parent support group is a great idea.
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