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Weight loss

Sharon60 Message
13 Jan 2015, 04:40 AM

How do you combat the weight loss? Because of the severe abdominal pain, bloating and diarrhea which comes with eating, I have developed sitophobia ( the medical term for fear of food). I will go two or three days without eating and then I force myself to eat. I eat soup and white bread toast mostly but some times I break down and eat a normal meal. I always pay for it later and then the cycle begins again. Don't get me wrong, I could use some weight loss but I have lost 15 to 20 pounds a month for the last six months. Almost one hundred pounds in six months. I started of at 270. I look terrible. And the doctors say drink Boost or Glucerna but dairy is no good at all. There isn't any food that looks, smells or even sounds good. Any ideas?
lisas Message
13 Jan 2015, 04:07 PM

Sharon - sorry you've been diagnosed with SM . . would love to speak with you . . i have a kiddo with a severe aggressive form of SM as well . . . my email is lisas444 at yahoo if you want to try me there. love to hear from you. hopefully i can introduce you to about 80 other people with it as well and get you in touch with others . . :) LS
lisas Message
13 Jan 2015, 04:10 PM

my kiddo is 5'10" tall . . has had 17 abdominal surgeries now with this disease . . . it's unfortunately been very aggressive with her . . . she's also TPN dependent for over a year now . . has been on tube feeds / and TPN on and off since 2008 . . for over the past year now. . she is 100% dependent on TPN. . where she is fed through her port . . she's 5'10" and got below 100# . . she's maintaining at around 120# right now . but she also has had several bowel obstructions from the SM and ostomy placement a few times as well . . .food and nutrition is hard and she used to love food . . would love to speak with you though! :) Can't wait to hear from you lisas444 at yahoo
Sharon60 Message
14 Jan 2015, 11:25 PM

I'm sorry to hear about your child, so young, being diagnosed with this and to such an extent! Have you consulted Dr Pardi at the Mayo Clinic? He is considered to be the most knowledgable physician in this country on SM. I seem to have hit a plateau for now. For the past three weeks I have only had five days where the pain, bloating and diarrhea ha been bad. I have changed my diet to no processed foods or dairy and very little fiber. I make my own yogurt with soy or almond milk now and I seem to tolerate it well. I am a physician and with the multiple disease processes, I have had to retire on disability. I have cryoglobullinia, due to the hepatitis C I contracted during my intern year, which is the worst. I get chemo therapy every six months for that after it finally caused kidney failure. At least my kidneys got better but there's no cure. Then I got mononeuritis multiplex, also caused by the cryo. I probably have a lot more knowledge than the average doctor, lol. I end up giving them the names of articles and research. Now I'm researching SM. I've gotten really good at medical research.
lisas Message
16 Jan 2015, 03:31 PM

Sharon - Thx for responding. We have a pretty amazing group with over 80 people in it now with SM and/or MP from all over the world. Would love to add you to our group if you like . . i sent you my email before as well lisas444 @ yahoo . My kiddo hasn't responded to most of the SM treatment . . she's still alive though. She's had 17 abdominal surgeries now, has ostomy placement, TPN dependent for over a year now . . . the SM also affected the right ureter as well (she's had multiple multiple multiple and can't say that enough how many times) but bowel obstructions . . . she's inpatient frequently and this past year has been in more than 50% of the year again . . . she's been on ALL the meds out there to treat SM and is no better. She's had a pretty aggressive team of docs who have been amazing and haven't quit on her. She's just started a new drug that was used by one other SM person in the UK that was a 29 year old girl . . . I got the drug from drug manuf to use it on her here . (insurance won't pay as not FDA approved and experimental) . . . she had 1 treatment so far and then ended up in the hospital with 2 sepsis rounds back to back and endocarditis as well developed (over the last 3 months). She's starting the 2nd infusion today . . .
lisas Message
16 Jan 2015, 03:36 PM

She does not see Dr. Pardi up there. Dr. Schaffner has consulted with us and her docs on her since 2008 when she was diagnosed. She was in critical care and was to be life flighted to Mayo that following day . . Mayo refused her due to her age . . . She's over 18 now . . but there's nothing they can do for her up there that they can't do down here and I do speak with Dr. Schaffner (another of the SM guys at Mayo) . . Drs. Pardi & Schaffner in MN, Pico in FL Mayo, and Dr. Eli in Chicago are the SM people in the U.S. i'd have to say they have some pretty amazing ones here in Oklahoma as well as my kid is still alive and they were very aggressive with her. In seeing some of the others that were treated at Mayo and i can think of one that passed with SM a year after diagnosis that I knew him and his family (we're still in contact with our Sm group) . . . he wasn't given the chances my kid was. Docs read - surgery can make it worse . only do surgery if bowel obstruction, etc. . . well, seeing it with 2 families up there . . and on one 1 they did do 1 surgery . .but wouldn't do anymore . . (we keep taking my kiddo's ostomy sites up higher above add'l SM stuff) . . she's had many bowel obstructions! :(