Tests and Info...CHANGED MY LIFE FOR THE BETTER, LOVING LIFE NOW,,,PLEASE READ

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honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/29/2010 1:19 PM (GMT -7)   
turn ello all,  I use to be on this site but moved to the Ostimies site as I thought I might end up with a appliance..ie bag...
 
What I want to tell everyone is I was told I had IBS from all my symptoms, just like yours.  The reality was I did not believe that was the true answer.  So I had a bunch of tests done, and the one I researched before asking for it was a Sitz Marker Test.....I had decided earlier before I had the test that my colon was not working..and I got to that determination thanks to all of you and your ideas and help with what I thought was IBS.
 
I have had a total colecotmy, ya thats right they took my whole colon, and reconnected my sm intestine to my rectum, and guess what.
 
HAD THE SURGERY FEB 19, WOKE UP FROM RECOVERY FEELING GREAT.....  I HAVE NEVER HAD A IBS SYMPTOM SINCE, I EAT WHATEVER I WANT......SO SOME OF YOU MAY WANT TO CONSIDER HAVING TESTS DONE...ITS A HUGE SURGERY WITH A 3 MONTH RECOVERY BUT WHO CARES I FEEL THE BEST I HAVE FELT IN TEN YEARS.  NO DOC REALLY WANTED TO DO ANYTHING SO I FOUND MY OWN SURGEON RIGHT HERE IN MY OWN TOWN, AND HE REPEATED THE SITZ MARKER AND TOLD ME MY COLON WAS NOT WORKING AT ALL AND THIS WAS ON A MON AND HAD SURGERY ON FRIDAY..
 
THIS COULD BE LITERALLY LIFE CHANGING FOR A LOT OF YOU, JUST SOMETHING TO CONSIDER AND I WANTED TO SHARE AND THANK YOU ALL FOR ALL YOUR SUPPORT IN THE PAST.
 
LESLIE
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 3/30/2010 3:55 AM (GMT -7)   
Leslie,
I am so happy for you. I also had a sitz marker test before I had my total colectomy and even was on the ostomies part of the site. It is an awesome place to go for questions and support. I would have never survived without the support of everyone on there and here. my colon actually died, so it stopped functioning. But like you I had my small intestine attached to my rectum, but I am going too much and may opt for a bag myself. Well, I am so glad that everything is going well.

Maya
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis: Aug 7, 2008
Numerous food intolerance (gluten,lactose,msg,etc)
Persistent/chronic Lyme Disease: March 2010(org dx in Sept 2009, but meds unsuccessful)


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 3/30/2010 8:21 AM (GMT -7)   
Oh Leslie - I am just SO HAPPY you're doing so well. When I see your current posts on the ostomy board, I actually get goose bumps and a few times, honest to goodness, teary eyed. FOR YOU!

And might I say it's nice that you have continued to post and now help others?

So pat yourself on the back now, you deserve it! For 1. taking the necessary steps to change your situation. 2. for finding the right doctor and for 3. sticking around the HW forums. I do believe you can continue to help other people that are in your former situation.

Mary
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg each evening


SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 3/30/2010 9:01 AM (GMT -7)   
Being our own ADVOCATES can pay off......
SnowyLynne


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/30/2010 10:15 AM (GMT -7)   
Mary,   I thought OMG this site saved my life and I want others to have hope that it's not all in there head and the suffering is real and dis-abeling.  So I tell me stories in hopes that others will take the bits of what I say and go ??  HUMMMM?  Maybe it will work for me.
 
The other day I was in a store and I could not find what I was looking for so I asked another customer if she saw any.  Well no neither of us did and I went down the ile looking at something else.  The that lady came back up to me and said I found it.  Cool, then she asked me why I was wearing that band around my waste, so I told her about my surgery.
 
She too is suffering I found out through our half hr conversation.  She said she also suffers with IBS, so I told her a lot of stuff and she wrote down my doc name and some tests for her to have done, and she said " this was ment to be, I was ment to meet you and you just gave me hope for this first time in years"
so I left there feeling great and I hope some of what I told her helps...
 
SnowyLynne-  that is right....
 
Maya, thanks, but how many times are you going a day.  I go 5/6 times...getting a appliance is a whole other world,  maybe you shoud take some Immodium.
I have a question for you my sister's kid has Asperger's Syndrome too and he is a teenager.  He is just a handful, do you have any tips for this syndrome or meds that help or theripies?
 
Leslie
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/30/2010 12:10 PM (GMT -7)   
Leslie, I think it's great that you're here and are helping people, but will you please shorten your signature? It has to be 10 lines or less per forum fules. I count 16 in yours. Thanks!
Co-Moderator, UC Forum
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/30/2010 12:12 PM (GMT -7)   
Thanks I will, sorry kind of long winded...
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/30/2010 12:13 PM (GMT -7)   
Oh do you mean my surgery list?
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/30/2010 12:22 PM (GMT -7)   
Yes. Unless another moderator or Peter has specifically given you approval to have such a long signature.
Co-Moderator, UC Forum
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/30/2010 12:26 PM (GMT -7)   
ok, its done thanks
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  1998 Carpol Tunnel Right Hand
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/30/2010 12:27 PM (GMT -7)   
I edited my signature but It did not do  it on my reply, maybe it take a day to work or something..
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  1998 Carpol Tunnel Right Hand
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/30/2010 12:37 PM (GMT -7)   
It looks good to me now. Thank you!
Co-Moderator, UC Forum
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 3/31/2010 5:16 AM (GMT -7)   
Leslie,
I have taken Immodium and other types of medications, fibers, and liquid for my diarrhea. But due to fructose intolerance, these medications made things worse, since fructose is in practically everything. Even ones without it did not work at all. I take them for 4-6 weeks and nothing helps. Unfortunately, my G.I. doctors can not do anything for me, so i am going to get a second opinion up in Boston.
Also, with the Asperger's, I have mostly problems with sensory, social, and being in stressful situations. With the sensory, if I am going to be in a crowded place, i take my MP 3 player with me. Those things are great blocking out noise. Plus, listening to music no matter where I am, especially if I had a bad day, helps calm me down a lot. As for medications, there are no specific Asperger's medications, but they do have ones that help with certain symptoms like anxiety, depression, and other issues. I only had depression and anxiety, but the medications made me worse to a point where I could not think. But that has nothing to do with Asperger's, I react atypical to many medications. To alleviate anxiety, i just avoid any situation that would make me anxious. If I can not, modifying the situation into making it more comfortable for myself is the best. If I had to be with my family, and it got too noisy, or I felt uncomfortable, I just go into another quieter room. I am in college and there are many jobs I am unable to due because of my issues. But, i found a career that I will work in a laboratory where I am not dealing with things that would stress me out. Basically, I found the adjustments to environments and other stimuli and stress has helped me a lot. I also talk to a therapist to help me vent out my stress and she would help find ways to help me.
I hope this helps you a bit. I am sorry if this may not be enough, sinceI grew up in the 80's and 90's when there was not much awareness of Asperger's. Basically, i was left out in the cold. Good luck with everything. Thank you again for the advice.

Maya
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis: Aug 7, 2008
Numerous food intolerance (gluten,lactose,msg,etc)
Persistent/chronic Lyme Disease: March 2010(org dx in Sept 2009, but meds unsuccessful)


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/31/2010 10:37 AM (GMT -7)   
Maya
 
  Thank you...my sis lives in Alaska so I am not around my nephew.  But my sister says he is a loaner and does not like to join in anything.  Now he has started stealing, is that his way of getting attention?  I think it might be.  Well I just appreciate your input and hope your doing well today.
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  1998 Carpol Tunnel Right Hand
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 4/1/2010 10:21 AM (GMT -7)   
Leslie,
usually stealing is not a behavior typical of Asperger's, but people with Asperger's tend to do things for attention or even when things are bothering them. He might have trouble expressing what is bothering him and/or may not feel comfortable. The best idea would be having him see a therapist, especially one who knows or even specializes in Asperger's Syndrome. Well, I hope this helps out a lot. I wish you and your sister, and your nephew good luck. Asperger's may be troublesome, but there are a lot of gifts. I see it as more a difference than a disability because though I have trouble with sensory and social interaction, but people with Asperger's have gifts and talents that could lead them to a wonderful, successful life. Helping channel those gifts or talents would also help him.

Maya
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis: Aug 7, 2008
Numerous food intolerance (gluten,lactose,msg,etc)
Persistent/chronic Lyme Disease: March 2010(org dx in Sept 2009, but meds unsuccessful)


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 4/1/2010 10:46 AM (GMT -7)   
Maya  Ya he is the same way not social at all.  He is seeing a therapist, and my sis trys to spend as much time with him as she can.  But she is a manager at a huge warehouse and she is always busy.  She feels that he will never beable to live on his own.  He is very smart though, but he plays video games all the time and she try to get him away from that, but you know kids.
 
Thanks for the time and info.
Well its a bit nicer today so I am going to try and go for a short walk.  It has been raining her so much, and I am feeling good and getting ancy.  But I get worn out so easily.  By the time I get all ready to go I have to sit and rest...lol...plus someone told me on here that sometimes a total colectomy you get c....  so ever since I herd that my bowels are barely moving...lol  not because of what they said,  I think that I ate too much bread...I dont feel like cooking so I will eat a piece of toast or a dry turkey san...so I guess I need to get out and walk to get things moving....and stay on soup till I do.
 
Well hope you feel better hun...
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 4/1/2010 2:32 PM (GMT -7)   
Leslie,
With my total colectomy, I am having an abnormal reaction. My bowels move too fast and even after almost two years, things come out more quicker than they did when I first had the surgery. That is why i am getting checked. Usually things will slow down and some people have to be put on fiber, but my reaction is not normal and that is why my colon rectal surgeon who did the surgery referred me to a G.I., who does not know what goes on.
Also, Leslie, do they have an Asperger's group or something for teens in his area. That would be a great way to start. These days they have those things, and actually I am looking for an Asperger's group for adults in my area, as well. I was put into social groups for disabled people who are retarded and had actual Autism, but that was not a good fit, as I am at a totally higher level than they are. So, if your sister does try to find a group, it would not be a great idea to put him into a group of people who are retarded. People with Asperger's are extremely intelligent and many groups, especially in my state have separate groups for Asperger's teenagers. I am actually in contact with the woman who runs the teen group and she is trying to start an adult group. The teen group was formed a few years ago and they are doing well. I know there are probably some in your nephew's area. it would eb a great social outlet for him to meet some intelligent kids, just like himself. People with asperger's, especially like myself, love to talk about our interest and I bet he can go into such group and find someone who has his interest and develop many friendships. Interests are a big thing for us people with Asperger's, and I met many people based on my interest of medical knowledge and my interest in Asperger's. A my friendships always start with the common interest and blossom into other things. Well, I hope this helps out a lot.

Maya
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis: Aug 7, 2008
Numerous food intolerance (gluten,lactose,msg,etc)
Persistent/chronic Lyme Disease: March 2010(org dx in Sept 2009, but meds unsuccessful)


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 4/2/2010 11:17 AM (GMT -7)   
Maya  OMG, I remember the first few weeks going all the time, thats terrible that your going more OUCH, that has got to get irritated.  The past 2 days I have slowed down and they are going little spurts but not too much stool, loads of gas holding things up, so I think I passed most of the gas and we shall see if the other will follow today.  I feel better this morning.  I just get scared if I dont go like I was going 3 days ago, because it is fresh in my mind and the whole not going thing before surgery.
 
So I think I just did not move enough to ge things going, have been dealing with a bad sinus infection.  So I layed on the couch all day the other day, and ate mostly bread like 3 pc. and that may have slowed me down.  But I was reading a funny book and could not stop....
 
I will ask my sister if she has tried groups for him.
 
I hope they find a answer for you, praying for you sweetie..
 
Leslieturn
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 4/2/2010 11:29 AM (GMT -7)   
Thanks Leslie. I hope all goes well with you too.
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis: Aug 7, 2008
Numerous food intolerance (gluten,lactose,msg,etc)
Persistent/chronic Lyme Disease: March 2010(org dx in Sept 2009, but meds unsuccessful)


jt80
Regular Member


Date Joined Sep 2007
Total Posts : 333
   Posted 4/7/2010 6:07 PM (GMT -7)   
Hi honestwoman!!!!,that is soooo great!!!! when I read your post I was sooo excited I could scream I was like yaaaay!!!!! I'm glad you have your peace God is sooo good right?! I may myself ask my GI for that test who knows big round of applause for you.Is'nt it great to just eat what you want and just not worry! awesome news yaaay again!!! lol.

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 4/7/2010 7:35 PM (GMT -7)   
  YUP< YUP"  its great, even ate a bananna and so far so good..You know what is funny?  .Food is all I think about now, hummm, what to have for dinner????  Bummer is I can only eat a small amount at a time, but boy I eat something every 2 hrs so I am good...  Its such a weird concept since I was totally the opposite a couple months ago...wow, life is good now...
 
How are you doing sweetie?
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


jt80
Regular Member


Date Joined Sep 2007
Total Posts : 333
   Posted 4/12/2010 6:12 PM (GMT -7)   
I've been good thanks just moved to a new place loving it,things are comming along and still eating like crazy put on more weight.I'm loving my new body cant complain getting out more God is good what else can I ask for. :-)

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 4/12/2010 8:18 PM (GMT -7)   
JT80
 
   So good to hear from you and glad that your loving your body...how cool.  I love my new re-routeing job...LOL  did you have to take it easy or not even try to eat raw vegies, and fruits like at 2 mons...??  I eat most things, not going to do the vegies and fruit, as had slower movement when I ate a little bit of salad..OMG...wont eat that for quite some time...  So good to hear from you.. take good care..
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  

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