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

 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

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

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

Thanks I will, sorry kind of long winded...

Yes. Unless another moderator or Peter has specifically given you approval to have such a long signature.

I edited my signature but It did not do  it on my reply, maybe it take a day to work or something..

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

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

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

Thanks Leslie. I hope all goes well with you too.

jt80

  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

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