Name is Aly and I have SBS


#1

I just was recently diagnosed with SBS about 4 months ago not knowing all my symptoms were a disease or condition. I had a lot of stupid doctors. I have SBS from being a NEC survivor. I’m 23 years of age and just recently had to quit my job again because of my health. I’m at my wits end. I’ve spent the last 3 years trying to claim my life back and have a “normal” life. I have been unsuccessful with my doctors. I recently had a subclavian catheter due to years of being poked and prodded. I also recently stopped taking Nexium because every side affect I had most of them. I also have problems with iron to the extent I have to get iron tranfusions and blood tranfusions. Yet they cannot find what is causing the iron loss. So hello to all! It sucks we are here but at least we are here!


#2

Hi Aly, my name is Shawn. I have had SBS for almost 7 years. I was a healthy newly married 47 year old woman with the world at my feet! Then the christmas of 04 I got terrible stomach pains and ended up in the hospital for observation. They didnt really see any reason for the pain and sent me home with maalox and vicodin. Couple weeks later samething. Long story short, I had 3 surgeries and ended up with 13 inches of small intestines. Have had multiple lines in my chest, as I am prone to line infections. Each infection is a one way trip to the hospital for 8-10 days. Lets just say I know the nurses very well, and have the menu memorized at the hosp.I have TPN feedings every other night. These enable me to get some nutrition. Its thought that I assimalate only 2-3% of what I eat. Its ironic really. All my life I struggled with my weight, now I struggle to keep it on. I know how frustrating all this is and you just have to do it one day at a time. Force yourself to stay optimistic, and dont be afraid to take controll of your body. I hope this helps, I would love to hear from you if you need to....type?


#3

Aly, don't give up. Thru trial and error you will find a way to cope. I won't bore you details, but I can help with "tricks of the trade". I found that Cream of Wheat helps and taking an iron supplement helps. With SBS you will find that absorbing nutrients are the number one thing on the you gott do list. Email me if you would like more details. With intent - Jody millsdj@att.net