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Hi, my name is mason661. I'm here because I have short bowel syndrome and help care for a nephew on the autism spectrum. Life’s full of surprises. I want to manage them better.
My twins were diagnosed on the spectrum at age 5 and didnt really form sentences til 7 yrs old. This includes full potty training. With lots of therapy and patience, along with pictures of routines all over my house we somehow progressed.
The twins are still in special ed and continue with speech therapy. However they have exceeded my expectations. One started a mini business over the CoVid lock down and taught himself to sew on the sewing machine. He started making teddy bears with special needs tummies. Bears for MS, Rare Disease and Autism. The other twin still struggles and on a lower spectrum however hes great at coding.
My words of encouragement, never give up. Always stay consistent. Always give yourself grace and find a support system. No matter how far your child gets, be proud of all you have done to get them to were they have come.
#Migraine I’ve had a terrible migraine for over a week now. The medication that I was prescribed for prevention of Migraine I can’t take due to living with Short Bowel Syndrome my bowel no longer absorbs the medication. I’m just taking tramadol for the pain. I’ve tried for the past 4 days to get in contact with my GP but with the Covid Pandemic I can’t even get to speak to any doctor never mind see one. So was wondering had anyone any advice on what I can do to ease the constant pain. Thanks
I almost died giving birth to my son and it saved my life. The triggers of PTSD (PostTraumaticStressDisorder) are live changing. I’ve been told that my responses to triggers are ‘just anxiety‘ or ‘hypochondria.’ However, when you’ve had multiple life-threatening conditions ignored by medical professionals and friends/family alike you become conditioned to the flight or fight response that is so deeply rooted in the aftermath of traumatic life experiences. I had several odd health experiences that seemingly started in high school after my recovery from mononucleosis. I experienced overwhelming fatigue, widespread body pain, neurological symptoms like dizziness and faintness, and heart palpitations. I mostly learned to live with these symptoms after multiple trips to urgent care, my primary care physician and even the emergency room turned up with no answers. I settled on the idea that nothing could be done, despite my gut knowing that something wasn’t right. In my mid-twenties a CBC turned up low globulin levels in my blood that sent me into a whirlwind of testing- the result, idiopathic hypogammaglobulinemia– an immune deficiency of unknown origin. At the same time, I was having gastrointestinal issues, vomiting after meals, early satiety and was diagnosed with gastroparesis after a gastric emptying study. I was told that these conditions were unrelated. So, I went about my life adding two more layers of complexity to my medical mystery. Entering my early thirties, I decided that I would like to try for a child. With my diagnoses and my suspicion of other underlying health issues, I went to see all of my related specialists, PCP, Immunologist, Rheumatologist, Gastroenterologist to consult whether it would be safe for me to have a child- the overwhelming response was YES! I became pregnant and I felt better than I’d ever felt, until 33 weeks gestation- I began swelling with pitted edema and my blood pressure became erratic. I was told that home blood pressure cuffs ‘aren’t accurate’ and dismissed. After an especially high blood pressure reading I went to triage at the local hospital where I was scheduled to give birth. My blood pressure read high and I had protein in my urine, but I was sent home with little to no concern or recommended plans for follow-up. Right quadrant abdominal pain woke me up in the middle of the night the next day and I called the on-call OB GYN to report what I was feeling, she told me ‘Oh, it’s about to rain tomorrow, you pregnant women are like little walking barometers, it’s nothing to worry about- today isn’t your time.’ I trusted the advice, I made a pact to myself that I would wholly trust the medical professionals and my body through the process and so I did. Within the next 12 hours I was in the hospital, this time with debilitating right quadrant pain and now my blood pressure was highly elevated, the platelets were low and elevated liver enzymes- I had full blown HELLP syndrome, a rare and potentially life-threatening pregnancy complication. I was induced and told best practice for this situation was a vaginal delivery. My condition worsened and after 24 hours of labor and significant decline in my condition, my son was delivered by c-section at 35 weeks to the day. He was a small 4lbs 14oz but I was told that he was otherwise healthy- phew- I did my job- and I was whisked away to the ICU. When I finally regained consciousness, they brought me my son, he was perfect. I help him with the help of family and medical staff and I feel completely in love and I knew immediately I would do anything for my child. We started feeding my son and he vomited blood and almost immediately green bile. The nurse told me that the vomiting was ‘just birthing fluids.’ This time, I didn’t trust the medical staff, I didn’t buy this story so I insisted he be returned to the nursery for examination. The medical director returned a few hours later reporting that my son was not well and that his condition was declining rapidly, they were unsure what was wrong. I urged them to get prompt care at the highest level and to transfer him to another facility if that was necessary. He was transferred and went through 3-days of back-to back surgeries, he had suffered a volvulus as a result of intestinal malrotation- he lost 85% of his small intestine and was left with the diagnosis of short bowel syndrome and given an ostomy, g-tube, broviac catheter and total parenteral nutrition. We weren’t made any promises. We stayed 3.5 months in the NICU until our experience there proved that we needed a more specialized team- we transferred our son to a hospital that specialized in this population. We rehabilitated his bowels for almost 7.5 months before we were discharged home with a tube and total parenteral nutrition. I became my son’s nurse (as we were not offered any medical care), mother and fierce advocate. I made it my mission to give my son the best possible outcome despite his diagnosis and established excellent therapists, fine tuned his medical management, read journal articles and networked with others in the nutritional support community to learn best practices. During this time, my health took a downturn, I began dramatically losing weight, passing out, vomiting regularly and became weak and feeble – all while putting everything I had into my son’s wellbeing. Throughout my advocacy- I encountered individuals with many different diagnoses that resulted in situations similar to my son’s (ostomy, broviac, TPN, G-tubes) and a light-bulb went off. WAIT – I recognized many of their symptoms beyond my son’s – these were MY symptoms. My son’s rare and complex condition led to the resolution of my years of mystery ailments. I learned about connective tissue disease (EDS, Lupus, Sjogrens) and how these disorders could lead to my symptoms and pregnancy complications. I also learned that autoimmune disorders can be the result of immune deficiency (my hypogammaglobulinemia was something to be concerned about after-all), My widespread itching and hives were a product of mast cell reaction disorder and the list goes on. I consulted a geneticist and FINALLY got answers to so many unanswered questions that I’d archived over the years and the treatment my body desperately needed. My son is now off of TPN and his SBS is stable, I’m not cured, my conditions are chronic but my care is being managed- neither my son nor I are ‘cured,’ but together, we made it- I saved him and he saved me. Now we navigate a life together of RareDisease management and I continue to invest my time in advocacy for the chronic and RareDisease community. I am grateful for where my son and I are today in our health journeys, although far from perfect. The most unfortunate piece of all of this jigsaw puzzle is the misguided paths and resulting misfortune of significant delays in diagnosis and care- is that in addition to all of the diseases and disorders that my son and I are up against, I have added PTSD (PostTraumaticStressDisorder) to the top of my list- the figurative here on top of all of this. So, today I manage active ChronicIllness and try my best to cope with the misfortunes of my past. Regardless of how positive I am in my life, the relentless wake of PTSD settles upon me and asks me to relive my responses to some of my life’s most difficult and heart-wrenching moments. June is PTSD awareness month, my hope is that more research, counseling and support are available through the transparency of this disorder.
life has been pure hell lately. I was in the ER a few weeks ago for severe constipation my bowels where full from the stomach down. I had part of my ilium removed in 2007 because of a severe bowel obstruction. I have short bowel but lately my food isn’t digesting and causing me to get blocked up. i have lost a bunch of weight in 4 weeks 13 pounds. I can never have normal stool it’s diarrhea all the time or blocked up from my food not digesting. I am weak I can hardly hold down even my small jobs at my day center. the doctors have me on a BRAT diet till I see the GI Doctor. I have severe nausea and diarrhea and stomach pain most days. or can’t go at all from my food blocking me up. the nausea gets so bad at times that I can hardly take it. the worst is when it wakes me up at night. I used to be on TPN after my ilium was removed and a GJ tube now 15 or some years later it’s killing me emotionally and physically. I hope for a good appointment.
How can you have Short Bowel Syndrome on your list of 700 conditions and not have Shy Bladder Syndrome (Paruresis) too????