I also have a big problem with keeping on muscle / weight and entering mid life at 47 combined with chronic musculoskeletal and joint pain. I am a not a big guy but I was always naturally muscular. In the past 5 years I have lost the majority of my muscle mass and I am thinner than ever. (lost about 10 lbs just this year) My J pouch is now 31 years old (Mayo Clinic in 1985) and I am considering whats called Human Growth Hormone "STIMULANT". It is supposed to naturally stimulate your pituitary gland to PRODUCE more HGH. I have been told it is TOP OF THE LINE, organic/ all natural with very little side effects and that it has helped many people with chronic muscle and joint pain from either FIBRO or Arthritis related to IBD. The brand is called SEMORELIN and my doctor assures me that it is of the highest quality and can be used for a specific period of time (based on blood levels being monitored)... sometimes about 6 months to boost levels and then you stop it. Doctor said it will definitely help build muscle working out or not! I cannot do ANY of the protein shakes with WHEY. Only the vegan ones ( no milk, lactose or SOY!!) Using ORGANIC (by Orgain) now and I am trying to increase my daily caloric intake. Would be great to discuss this with others as I am feeling so alone and overwhelmed with my situation. This pain has debilitated me now for 15+ years and I'm not making progress with my local doctors. My chronic pain is debilitating so its a vicious cycle of not being able to build up my body physically to help with the pain... Cannot function without Percocet or Vicodin. I am considering Low Dose Naltrexone but am first making a trip to Mayo Clinic in October for a full evaluation by many different specialists. I have not been seen at Mayo in 20 years. All of my local tests (OPEN MRI) (lumbar and pelvis) and blood work do not show ANY of the CLASSIC typical "markers" for IBD related arthritis / Ankylosing Spondylitis. No Sacroiliac joint involvement but yet based on SYMPTOMS, I was told in 2000 that I had Ankylosing Spondylitis (Enteropathic Arthritis). I want Mayo to due further testing with newer technology (CLOSED MRI... with higher magnification) because I cannot live with the chronic lumbar and muscle / joint pain and local doctors feel it is more FIBROMYALGIA than anything. But like others, I now am looking at a hip replacement (now have bad Osteoarthritis of the left hip) so I need answers!! Tried BIOLOGICS (Humira and Remicade) 10 years ago. Too toxic. Landed me in the hospital over and over with infections. I do have episodes of pouchitis as well and DO NOT want to take antibiotics as I believe that long term CIPRO specifically can be contributing to my chronic nerve and or muscle pain. I am interested in the latest studies regarding bacterial overgrowth in the pouch and CHRONIC pain. Hoping Mayo or Cleveland can help with this. I was told that Mayo does biopsies or ASPIRATES to look at bacterial overgrowth. Some centers do the BREATH TEST to determine SIBO. (Small intestinal bacterial overgrowth). I have had neither performed yet. First trip to Mayo in October of 2016. I will be seen by GI and Rheumatology as well as my original surgeon before he retires. His name is is John H. Pemberton and he did my J-pouch surgery with I was only 16 years old! He wants to do the pouch exam (Pouchoscopy). If Mayo does not help me, I will go to Cleveland in 2017 and see Dr Shen and a Rheumatologist there. Hope to hear from anyone with any input or suggestions. I am so tired of being in pain and having a terrible overall QUALITY of life. It impacts everything and of course I have not been able to work. I can also be reached directly at: michaelshore12@gmail.com. Anyone try Low Dose Naltrexone LDN with success for chronic pain and/ or the pouch issues??
Best to all of you!
Sincerely,
Mike
