Re: Lonely SBS (Short Bowel Syndrome)

From: Helen Dynda (olddad66@runestone.net)
Tue Apr 2 12:10:04 2002


Dear Traci,

Welcome to the International Adhesions Society Message Board!! You are no longer alone!! I'm sure you will be welcomed and receive support from others, whose lives have been affected as a result of chronic pain. Please feel free to vent and ask questions.

You have much to share from your experience with short bowel syndrome (SBS)!! You may even be able to find a pen-pal, who also has SBS; so please continue to read and post messages here.

I hope you will share your experience on the Adhesions Quilt; and please consider entering your story on the Adhesions Quilt too.

There is alot of information in the Archives of the International Adhesions Society. To access this information: scroll to the bottom of this webpage. Enter a search term in the search box; and then click: Search Adhesions. I have posted many educational messages, which are easily accessed by entering my name into the search box.

Since I've been unable to access the Nutritional Restart Center (NRC) website, I contacted Tracy Joslin, who is the administrator of the International Adhesions Society website. Tracy called the NRC at (800) 867-6761; and today Tracy sent the following message to me:

"Just wanted to let you know that I spoke with someone at NRC and they were aware of problems with their website and are working to get things resolved and apologize for the inconvenience.

"The link you were using is still correct. Try again in a few days to see if they are up and running.

"If anyone needs information, they suggest calling their 800# for questions, etc."

-- Tracy

The Nutritonal Restart Center is a national referral center for patients with complex gastrointestinal and nutritional problems, typically resulting from intestinal resection, disease, damage or adhesions. Individualized in-house, outpatient and home programs to meet the specific needs of the patient. Call (800) 867-6761 or visit http://www.nrcenter.com/

The Nutritional Restart Center is one of the sponsors of the International Adhesions Society website.

I hope you will keep trying to access the NRC website (above); and please consider calling the Nutritional Restart Center using their 800#.

In Friendship,

--
Helen Dynda

~ ~ ~ ~

At Tue, 2 Apr 2002, Traci wrote: > >I have had the SBS since 8/00 and live in Wisconsin. I feel like I'm >the only one that has SBS in Wisconsin. I would love to have a pen pal >that I could share my frustrations, problems, etc....I do have great >support of my medical staff but sometimes I want to talk to a person >that already has SBS. >All these adhesion problems occured when I had lapscopy (spell?) in 1993 >to remove my uterus. Then I developed a bowel obstruction. That was a >piece of cake surgery. Then in 1999 I developed a tumor on my ovary and >they removed both and saw alot of adhesions and hoped they wouldn't give >me trouble. A week later I had 5 resections, 9 hours long surgery and 6 >weeks of hospitalization and plus 3 other short stays in 1999. I was >still in pain & vomiting the surgeon I had at that time basically told >me there isn't anything wrong w/me, etc...After one & half years living >w/that, I saw someone else for a 2nd opinion and this surgeon couldn't >believe what she saw. The adhesions was from the upper colon to the >rectum. I lost my ileum and only have 4.5 feet of small intestine left. >The surgery was a 10.5 marathon. My parents were told I may not survive >this surgery. The surgeon told my parents that if I would have would >waited another week, I would have died. AFter one week of ICU & 5 weeks >of hospitalization, I went home w/TPN, tube feeding, etc...I was on TPN >and tube feeding for 5 months. > >The diet was the hardest thing I had to go through. I have always hated >dieting and it was a hard adjustment to it. It took me 6-8 months >before I got the hand of it and I had to learn to cook too. I was able >to eat cheeseburgers, fries, pizza and everything else I got sick and >had this surgery. >I used to be very active, going out w/friends, biking, jogging, >traveling. I still go out w/friends but as far as exercises, it has >been zipped! I tried jogging but I always ended up running home to the >bathroom! I'm afraid to be around places that don't have access to the >bathroom. I'm having trouble w/my iron and already had two blood >transfusions to get up iron up to level. >Anyway, it would be nice to talk to someone and share stories or swap >ideas/suggestions. Love to hear from you. > >-- >Traci >


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