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Recent content by QueenGothel

  1. QueenGothel

    2014 Mycobacterium avium subspecies paratuberculosis causes Crohn's disease in some inflammatory bowel disease patients

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4064085/ Abstract Crohn’s disease (CD) is a chronic inflammatory condition that plagues millions all over the world. This debilitating bowel disease can start in early childhood and continue into late adulthood. Signs and symptoms are usually many and...
  2. QueenGothel

    Rectal cuff inflammation

    So what meds stop inflammation in the rectum systemically? I am thinking none beyond prednisone (whcih DD is already refractory). :( just treating a rectal stump on an ostomate? Starting to stress out a bit. Anucort suppositories are not helping. So I am guessing her doctor will want to try...
  3. QueenGothel

    MRCP finally happened

    Rowan clearly was sick with a virus over her spring break. Easter was ruined by a fever, vomiting and high ostomy output. We went to the ER to be turned back home, didnt even give her an IV, made me feel like I was over reacting. Then to the Pediatrician whom said she was fine and getting...
  4. QueenGothel

    Nutritional therapy in pediatric Crohn disease: the specific carbohydrate diet

    http://www.ncbi.nlm.nih.gov/pubmed/24048168 J Pediatr Gastroenterol Nutr. 2014 Jan;58(1):87-91. doi: 10.1097/MPG.0000000000000103. Nutritional therapy in pediatric Crohn disease: the specific carbohydrate diet. Suskind DL1, Wahbeh G, Gregory N, Vendettuoli H, Christie D. Author information...
  5. QueenGothel

    Rowans Third Ileosomy

    Surgery was a success, saved 2 feet of small intestines. She has an end ileostomy, and spared her rectum. Awaiting biopsy results for PSC. She had no issues during surgery, lost very little blood and is not anemic. Jpouch was huge, he never saw anything like it. Took pictures and showed us...
  6. QueenGothel

    Perm Ileo or SIAA/IRA

    My DD currently on her second Ileo. It is a long never ending surgical story. Anyway long story short she had a jpouch it failed her due to too much rectal cuff being left or possibly she has Crohns on top of that. She had a loop Ileo placed a few months back and since has been pooping out...
  7. QueenGothel

    Crohns and Total Proctocolectomy

    My Daugther has a surgery scheduled for Dec 3rd. She currently has a failed pouch and Possibly Crohns and PSC, though her current diagnosis is still UC at the moment. Her jpouch has failed due to too much rectal cuff being left behind. The surgeons are suggesting to connect her small...
  8. QueenGothel

    Cincinnati Visit

    She was hospitalized Friday for a ostomy prolapse. They tried reducing it and failed then from messing with it so much it quit outputting so much. We stayed the night she was NPO they were prepared for surgery and that night it retracted on its own. She was released early Saturday Morning...
  9. QueenGothel

    Primary Sclerosing Cholangitis

    Rowan was diagnosed with PSC via MRE they have not taken a biopsy yet because she has good liver numbers. We will be seeing hepotology while in Cincinnati in the next couple of week. Trying to get her on vancomyacin next, soon to start hydrocortisone enemas for chronic pouchitis and then VSL...
  10. QueenGothel

    Prometheus testing

    Does any one know what this means. TPMT Enzyme See Comment TPMT Enzyme Activity NORMAL ACTIVITY Result: 24.0 EU Reference Ranges: >21.0 EU - Normal Activity 6.0-21.0 EU - Intermediate Activity <6.0 EU - Low Activity The highest TPMT enzyme activity level observed in the Prometheus...
  11. QueenGothel

    The vaccination system and why it is broken in the USA

    Posting this not to deter anyone from getting vaccination but to inform parents of the broken system we current have in the USA. Please share! P.S. Sorry I cannot help but remember that Rowans UC started just weeks after youngest was shedding her MMR vaccinations. That was Rowan first mystery...
  12. QueenGothel

    Rowan's New Second Ileostomy

    Prometheus testing came back... Negative. I don't know the information nor have the test results they just said it was negative as in good news. I don't have any idea what this test actually does or how accurate it is. I have read some conflicting opinions. What do you all think? The Doctor...
  13. QueenGothel

    My Chemical free journey... Eczema!

    Going chemical free at my house has been my latest challenge. I have been reading a lot on SLS Sodium Lauryl Sulfate and the other chemicals and preservatives we have been rubbing all over ourselves and bodies for a lifetime. Did you know they use SLS to induce skin inflammation in...
  14. QueenGothel

    Rowan's Pouchitis

    Of course just days after posting a success story.... The symptoms start. Rowan started having frequent BMs, pain and low grade fever. (Sigh). Called the clinic they called in some Flagyl. (Assuming pouchitis) Today is day two taking it and she is very distended and has a hard belly but she...
  15. QueenGothel

    The Road to Recovery

    Rowans last surgery was in January. Things seem to be going well. Survived the dreaded rotavirus without going to the hospital. She is so good about drinking her water to stay hydrated. So proud of her. Over the weekend we went to Kalahari which is a giant indoor waterparks with every amenity...
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