Short Bowel Syndrome Foundation Support Community

The Short Bowel Syndrome Foundation Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

Five million

By Brian · New reply yesterday at 8:08 pm
Journal · 243 replies
Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

Chemo is over - by default

By daviandsteve · New reply June 16, 2013
Journal · 5 replies
Well, as of two weeks ago, I am finally done with chemo. I was supposed to have one more round of Carboplatin/Taxol, but my blood counts, especially the platelets, remain well under normal. My oncologist ...

Picking your Medical Help

By SurvivorinJaxFl · New reply June 15, 2013
Journal · 1 reply
As I have been in continual contact with a minimum of 4-5 doctors throughout 51/57 years of my life, I believe I am in the position to say, "If you and your physician do not get along...if you don't feel ...

Looking for a good Stomach doctor in ga for kids

By preemietwins · New reply June 15, 2013
Discussion in Patient / physician relationships · 1 reply
Hello Everyone I 'm looking for a good stomach doctor for my son who is 4yearsold and has Short Bowel Syndrome in Georgia? Anyone knows of any ...

One week on Gattex

By TNC · New reply June 15, 2013
Discussion in Medications · 2 replies
Howdy from Texas, On 6/5/2013 at 130pm I started Gattex. I have already noticed a change. In the week since I started taking Gattex the chronic diarrhea has stopped. Wow to have what everyone else considers ...

IV Drug Shortages

By lilpeeps · New reply June 12, 2013
Journal · 5 replies
I am asking a favor of everyone that has ever been on TPN or known someone that has been on TPN to please go to the Change.org link below and sign your name. We are almost to 2600 signatures but we need ...

Medication use.. Gattex

By Mare5785 · New reply June 11, 2013
Discussion in Medications · 9 replies
Hi all.. I live in VT and started using the Gattex daily injection just about 3 months ago now. I am the only patient using this medication in the state of VT.. NY, NH, Canda. that I know of.. according ...

Wondering about Gattex

By lilpeeps · New reply June 6, 2013
Discussion in Medications · 12 replies
I am thinking about asking my physician about Gattex. I have SBS with daily hydration but no TPN. I am maintaining my weight but would like to get off all support if possible. My infusion company is a ...

Patient-Doctor

By TNC · Posted June 5, 2013
Discussion in Patient / physician relationships · 0 replies
I have learned over the last 12 years of living with Short Bowel syndrome that the repoire that we have with our doctors is very important. I am fortunate that my Primary care Dr. is also a Doctor for ...

Gattex side effects

By TNC · Posted June 5, 2013
Discussion in Medications · 0 replies
I started Gattex today at 130p today. Within 5 minutes are so I began to feel flushed. Has anyone taking Gattex experience this? What side effects if any have you experienced ...

Starting Gattex this week

By TNC · New reply June 5, 2013
Discussion in Medications · 1 reply
This week I will start Gattex, After 12 years of being told there is nothing we can do other than what we are doing, it is exciting to see some changes in the care of SBS. I wonder how many in Texas are ...

Surgial Options Webinar

By lilpeeps · Posted June 3, 2013
Journal · 0 replies
I have seen this webinar, it is a great overview of all the surgical options for intestinal failure and of the different types of intestinal transplant. Including diagrams and surgical pictures! It is ...

constipation w/sbs

By kmbeach · New reply June 3, 2013
Discussion in Exercise, diet and nutrition · 4 replies
My husband has sbs due to a blood clot caused during a car accident when he was in his 20's. He is now 53. He was left w/ approx. 8" left of small bowel. Just enough to connect and not have a bag. He ...

Zinc deficiencies

By TNC · Posted June 1, 2013
Discussion in Medications · 0 replies
I have discovered that I have symptoms of zinc deficiencies. This really does not surprise me with all that we live with. I was wondering how many of you have had low zinc levels. Zinc deficiency Zinc ...

Out Foxing the Fox (meds clog)

By Duvie · New reply May 31, 2013
Journal · 6 replies
Hello Everyone, After the second consecutive day with tube clog from Nexium, I decided to out fox the villian (Nexium) instead of reaching for my DeClogger. Three days ago I placed a zip-tie stabilizing ...

Great News about IV Drug Shortages!!

By lilpeeps · New reply May 31, 2013
Journal · 4 replies
This was just released by the FDA...they are allowing important drug shortages to be shipped into the US this week! Although it doesn't address the long term issue, it does help in the short run! Lilpeeps ...

ROUND #1 with a DeClogger

By Duvie · New reply May 30, 2013
Journal · 4 replies
Hello Everyone, Just had my first battle with the screw part of a DeClogger breaking off in the feeding tube. It was difficult and took me an hour to gradually maneuver the tip back up through the tube ...

Petition

By AdvanceChairMrsB · Posted May 29, 2013
Discussion in Medications · 0 replies
Please sign and share this petition dealing with IV drug shortages! https://www.change.org/petitions/senator -tom-harkin-ia-and-representative-fred-u pton-mi-compel-fda-to-end-iv-drug-shorta ges-now ...

TPN Vitamin shortages - Great Article

By lilpeeps · New reply May 24, 2013
Journal · 2 replies
I know many of the TPN'ers have been affected by the vitamin shortages in recent months and it doens' t look like it's going to end anytime soon. The Washingtonian posted a great article putting this ...

Oley Foundation Conference

By nwhite2 · New reply May 22, 2013
Discussion in Family, friends and caregivers · 5 replies
Just curious to see who is going to the Oley Foundation Conference this year? Im hoping there will be both children and adults with SBS we can talk to and share stories/get advice. Looking forward to ...

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The Short Bowel Syndrome Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Short Bowel Syndrome Foundation, an Inspire trusted partner.