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  1. SupportiveMom

    Anyone still have their rectum after ileostomy surgery?

    So my kid had surgery to remove her colon in July. Surgeon left the rectum, even though it was diseased in hopes that once she had a stoma and no activity in her rectum it would heal. We were told it should stop bleeding after 8 to 12 weeks. So now it's 5 months and she is still bleeding. She...
  2. SupportiveMom

    Thanks for understanding we needed a break. I'm back!

    It has been a few months away from here and for my mental health it was much needed. D is now 4 months with an Ostomy and medication free. She is becoming an amazing champion in this. She is back to her old self playing sports, out with friends and back to normal weight. So far life with an...
  3. SupportiveMom

    Study Seeks Answers to Growth Mystery in Kids With Crohn’s

    Study Seeks Answers to Growth Mystery in Kids With Crohn’s I hope there are answers soon. Will look for results on this! http://m.gastroendonews.com/Article.aspx?d=In+the+News&d_id=187&i=July+2015&i_id=1207&a_id=32951
  4. SupportiveMom

    Positive role model for our kids

    Today in the Toronto Star newspaper was an article about an amazing person I have had the privilege of meeting. For those that haven't heard of her, check out this article and her website. She shares the positive on IBD, and life with an ostomy...
  5. SupportiveMom

    Medications Post Surgery Did it change for you?

    My 14 yr old just had ileostomy surgery Wednesday (July 15). GI is saying now that her colon is gone, and there has been no active disease in small bowel in 2 years she will be slowly tapering off meds one by one until she is completely off medications completely. Anyone have this experience...
  6. SupportiveMom

    Medications Post Surgery

    Not sure if this should go here or in the surgery subform. My 14 yr old just had ileostomy surgery Wednesday. GI is saying now that her colon is gone, and there has been no active disease in small bowel in 2 years she will be slowly tapering off meds one by one until she is completely off...
  7. SupportiveMom

    SickKids finds a new cause for Intestinal Disease IBD

    http://www.sickkids.ca/AboutSickKids/Newsroom/Past-News/2015/Surprising-cause-intestinal-disease-identified.html Instead of an intestinal disease, we unexpectedly identified a vascular disease. This is an entirely new way of looking at intestinal disease including the protein loss from the...
  8. SupportiveMom

    Impact of Crohn's disease on marital quality of life

    Marriage & Crohns... hmm... BACKGROUND AND AIMS: Quality of marriage exerts great effect on quality of life (QOL) and health outcomes. Little data are available on the effects of Crohn's disease (CD) on quality of marriage. We aimed to clarify whether and how CD affected the marital...
  9. SupportiveMom

    Did you request to see your colon?

    I either have a very curious kid or very bizarre one, but she has asked to see her colon after it is removed. We see the surgeon again Thursday & plans on asking. Is this even possible? Did anyone else ask to see it? Would I be better just asking them to take a picture for her? I asked what...
  10. SupportiveMom

    Parents of Chronically Ill Children

    To all the parents out there, keep fighting the good fight...grab a tissue box & read: http://www.scribblesandcrumbs.com/2014/12/22/to-the-momma-of-a-chronically-and-critically-ill-child/
  11. SupportiveMom

    Ways to Be A Good Friend To Parents with Kids in the Hospital

    I saw this article by a mom who's child has cerbal palsy & felt a lot of things fit us parents of chronically ill children. http://themighty.com/2015/06/9-ways-to-be-a-good-friend-to-moms-with-kids-in-the-hospital/?utm_source=Facebook&utm_medium=Mighty_Page&utm_campaign=Facebook_Page #1 is...
  12. SupportiveMom

    Stopping Medication Before Surgery

    I had read somewhere that the surgeons normally have you stop medication before surgery. We were not told to do this. We have another appointment prior to the surgery date (subtotal colectomy) and they may discuss this. My kid is on prednisone & I did ask about finishing the taper (she is at 10...
  13. SupportiveMom

    Surgery Can't Come Soon Enough - Teen Treating Colon Like Crap!

    As some of you probably know my 14 yr old is awaiting her date for her total colectomy surgery, and we are meeting the surgeon next week with the Stoma nurse. She seems to be starting another flare (or maybe never really left one). Since she knows the whole colon is going, and most likely her...
  14. SupportiveMom

    Do you take someone to your GI appointments?

    A thread in the parents section brought up that people should never go to their GI's alone. So here is the question. Do you regularly take someone to your GI appointments?
  15. SupportiveMom

    Webinar Wed. May 13 by Crohn's Colitis Canada Takeda (Entyvio)

    Hey all, I thought I would share this webinar from Crohn's and Colitis Canada happening tomorrow! It is supported by Takeda, maker of Entyvio (or supplier, I am not sure) Here is the details: Crohn's and Colitis Canada invites you to join us this Wednesday for our online 2015 Spring Webinar...
  16. SupportiveMom

    Have prednisone acne? My teen found a great solution!

    For those that have caught my other threads you know my teem has been on prednisone for mostly 3 years. When she was 11 it didn't bother her but now as a 14 year old girl in high school it is taking its toll on her self esteem. She found a solution that is homemade that has almost taken care...
  17. SupportiveMom

    Sigmoid colon & rectum removal?

    Scope was today for my 14 year old. The Fellow that did the scope said the rest of the colon was in great shape, but the ulcers & inflammation is in the last 25 cms of her colon & in her rectum. Of course the Fellow is not versed in her case, so couldn't state next steps. Our GI appointment is...
  18. SupportiveMom

    Blood in stool 1x every 2-3 days. Anyone else? Why is this happening?

    A post in the kids section made me think what my kid is experiencing might be abnormal. It certainly isn't normal for her. She no longer has blood in her stool at every bowel movement. Every 2-3 days she has a bowel movement that (solid, soft & formed) and has a lot of blood in it. Bright red in...
  19. SupportiveMom

    Very Early Onset IBD (VEOIBD)

    Very Early Onset IBD Symposium 2014 This symposium was hosted by the SickKids Inflammatory Bowel Disease Centre at The Hospital for Sick Children in Toronto, Ontario. The booklet on the link below includes talks, sessions and presentations from the panel of local and international experts...
  20. SupportiveMom

    Dealing with Ostomy Supply Costs in Canada

    I had to share this article. One of the best ones around to help those in Canada to navigate supplies. Starting off new dealing with this, it can be easy to not know which way to go. I read his blog often, has so many tips, stoma or no stoma. Way to go Veganostomy! Hopes it helps everyone else...
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