Janet Mitchell

50 posts plus
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About Janet Mitchell

  • Rank
    Advanced Member (100+)
  • Birthday 11/19/1960

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  • Location NY
  • Gender Female

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  1. Nursing School

    Hi everyone! Long time between updates, I realize! Sorry about that! Charlene, who was diagnosed when she was 11 with Crohn's disease, in 2008, is a sophomore nursing student at the University of Vermont now! Her background: She had a temporary ileostomy fashioned on 9/11/09 and then a complete colectomy and permanent stoma made on 6/1/2010. She is feeling extremely well since her surgery in Nov. 2014, during which she had a small amount of small intestine removed and her stoma refashioned and moved to the other side of her stomach. She has had regular Remicade infusions every 8 weeks since then and these have kept her disease and symptoms under control. Her blood tests show no signs of inflammation, which is great news for her and for us. So, she's on her way to helping people just like herself! She's happy, healthy, and active!! Janet
  2. Hi Everyone! Need Help - Persistent Rash Under Flange

    Thank you so much for your reply! We have finally solved the rash problem with a new type of flange that Hollister has recently come out with called "ceraplus". This flange has not only healed her skin problem, she doesn't require an active seal to put over it to keep it on longer! This flange is a new product so doesn't come pre-cut yet. We bought Charlene a leather punch that she easily cuts the flanges with ahead of time, before she needs them. So she uses a prep wipe and a flange! Can you imagine? All with no rash, no powder, no barrier, and no active seal. It's a wonderful thing.
  3. Charlene is off to college!

    It's hard to believe, but in three weeks, Charlene is leaving for college. She's feeling very well. She has Remicade treatments once every eight weeks, which, fingers crossed, seems to be keeping her Crohn's disease at bay. She's going to study nursing and she'll have the time of her life at the University of Vermont, in Burlington, VT. I'll miss her terribly but what a long, long way she has come since her initial diagnosis in 2008, when she was just 11 years old and almost finished with 5th grade. Charlene has achieved more than most kids her age, despite having an ostomy, and active/aggressive Crohn's disease. She just graduated from Kingston High School, in Kingston, NY, 15th in her class of 420 kids! She has played the trumpet for 10 years and this year was selected to perform in the NYSSMA band in Rochester in December. She had a perfect score on her All-state level solo in the spring last year! She was a drum major in the marching band for two years...which was both physically demanding and required leadership skills which she developed along the way. To say that I'm proud of her would be an understatement. I'm THRILLED for her. Despite everything...despite her three surgeries, and endless numbers of days in the hospital, and visitng doctors and wound care nurses, etc. she has absolutely risen above it all. So off she goes! Thank you for all of your support, everyone!
  4. Surgery Went Well!

    Hi Everyone! Hey, I just got a Happy Birthday message from Ostomyland! I thought you guys had closed your doors! Charlene is doing really well. She had surgery on November 4th and they removed about 5 inches of small instestine and moved her stoma to the other side of her body, from right to left. So, she has a brand new stoma, and an incision (where they moved the stoma from). They are both healing fairly well, but I'm disappointed by the incision where her stoma used to be. It looks like the scar will not be narrow and closed nicely. That kills me. Also, when they fashioned her new stoma the incision was too wide, so they took a stich next to it, which dissolved way too early and so that whole thing popped apart. Of course they don't repair these things, they just "let them heal." Very frustrating, really. Charlene is such a trooper, though. No complaining at all, already back to school! Tomorrow she starts Remicade. I'm at work, so I have to run, but hello to everyone out there in Ostomyland and thank you for the birthday wishes!! Janet
  5. More Surgery for Charlene

    Thanks, Jason. She is scheduled for surgery on Nov. 4th. She really has felt fairly well but I would say that the maintenance meds weren't really doing all that we thought they were doing since the disease was advancing anyway. It's so frustrating. She begins her last year of high school next week. She is a drum major in the high school marching band and so we scheduled the surgery for after marching season. I will certainly tell her you say hello! Thanks, again. Your concern means a lot!
  6. More Surgery for Charlene

    I officially hate Crohn's disease. Charlene has developed a fibrotic stricture about 2 cm in from her stoma that needs to be treated, perhaps surgically. Tests and bowel rest have allowed her enough comfort to be home for now until treatment is determined. More details to follow. I'm not amused, but I am exhausted. Sleeping on vinyl recliners will do that to a mom.
  7. Hi Everyone! Need Help - Persistent Rash Under Flange

    Hi Jason!!   I'm so thankful for all of the advice everyone has given us. I will absolutely try the products you've recommended if it comes to that. For now the rash is much better. And yes, Charlene is well, otherwise. She is on a maintenance dose of Entocort (budesonide).   The site is just gorgeous, Jason...you've done so much to it! What a fabulous thing you've created and made so wonderful over the years. I'll never forget finding you on the web while sitting in the dark in the hospital next to Charlene's bed the night before her first surgery, desperate for help...it brings tears to my eyes just thinking about it. Ostomyland (and Ostomy Secrets)! Just the other day I recommended your site to someone who has a family member that recently had a colostomy and urostomy. Anyway, it's so lovely to hear from you and re-connect a little bit. I'll let you know how Charlene makes out.   Much love, Janet
  8. Hi Everyone! Need Help - Persistent Rash Under Flange

    Laurence, we will try it today!! Thank you!
  9. Hello Everyone!! I am so sorry to have neglected my blog. It has been a CRAZY year, and hopefully I'll have time now to regularly update you as to Charlene's status. For now though I have a quick question: Does anyone have any experience with a persistent rash under your flange? I have to admit that I have prided myself on how well I have been able to keep Charlene's skin under her flange looking. I've used a combination of things to quickly put to rest any rashes that have popped up. I always assumed the rashes were yeast infections and have treated them as such. This doesn't respond to anything (plus extraordinary measures - like taking a diflucan tablet once a day for a month, or using lotrimin powder under the flange consistently). I'm starting to wonder if she's become allergic to the adhesive (and we already use the Hollister flanges with the non-allergenic adhesive because she WAS allergic to the band-aid-like adhesive). Any advice would be appreciated. She has an appointment in two weeks with the wound care nurse, but I'm hoping someone here will have some advice for us. Other than the rash under her flange, Charlene is in fairly good health, and takes a maintenance drug called Budesonide, which is a steroid that treats the inside of her intestine (the parts she has left!). She still suffers occasional symptoms like stomach aches, back aches and nausea but they are few and far between for the most part. Thank you! Janet
  10. Long Time No Post

    Hi Everyone!! Oh my gosh...I cannot believe I haven't posted since APRIL! Please forgive me. To say that we've been busy is SUCH an understatement. And we still are!! In May I was called back to work and From June 1st until Aug 18th I worked every day creating technical documents for a company that I used to work for with my husband...and the documents were due six months BEFORE they even asked me to write them!! Things quieted down until just this week, so I can't even promise that I'll write more often!! Anyway, enough about me and my excuses. I took Charlene to a pediatric gastroenterologist in CT who had treated her with Tysabri two years ago. It was our last great hope before they removed her colon. Anyway, this doc put her on Entocort for the summer, and we see him in 10 days to re-assess the situation. Entocort is basically a steroid for the intestines. No side effects like puffy face, or anything. It's a mild drug and I'm not sure it has done the trick. But it got her through the summer during which she was able to swim in a summer league on a team that she's been on since she was five. This was her 10th season! This fall she dove for the varsity team at the high school because she really wasn't well enough to swim competitively. She was getting dizzy and out of breath during practice during the summer, and those practices are nothing compared to varsity practices. Anyway, an Ostomyland member wrote to ask me about swimming today and it reminded me to update this blog. I will do so again when I have more time and more to tell, but hello to everyone out there in Ostomyland!! And to Laurence who originally suggested Active Lifestyle Products seal rings for over the flange during swimming: you were our real lifesaver when it came to swimming! When we went to the wound care nurse the other day at the hospital she said that they recommend Active Lifestyle Products seals to all of their patients. Charlene wears one every day, swimming or not. The nurse said so many of their patients do as well. It gives them that much more confidence that the flange will stay put. So, for those of you looking for a little more protection and seal, try them. They come in two sizes and they are just the greatest thing ever invented (nobody even pays me to say that!!) Our insurance covers them without question. http://alpglobal.com...l-TM-Rings.html That's all I have for now...stay in touch everyone! Oh, the picture of Charlene is of her and her BOYFRIEND (he's so sweet) and they are both section leaders in the marching band at the high school. (She plays the trumpet.) This is a picture of them together on the bus on the way to a competition. He takes care of her just like I wish I could when I'm not with her...
  11. More Crohn's

    Hi Everyone, Charlene had some tests over the last two weeks and they showed more disease, this time in her small intestine (she got to swallow a capsule with a camera in it so they could see what was going on). So, it looks like she'll be trying a biologic of some sort again. This is fairly depressing news since the biologics we tried never really did help her before. The disease they see this time around looks mild. I'll post another entry when we know more. Please keep us in your prayers, Janet
  12. Charlene Turns 15

    The other day I realized it's been almost four years since Charlene was diagnosed with Crohn's disease. I couldn't believe it. On the one hand it seems like it was just yesterday, and on the other it seems like it was a lifetime ago...and even more amazing is that she will be 15 in two days!! We have had amazing insurance problems for a little over a year. Charlie changed jobs in January though, and now we have excellent health insurance once again. For the year or so that Charlene was unable to visit her gastroenterologist in person, she has been well cared for by our family doctor, and we contact her gastro by email. He calls in a prescription if she needs something. Nothing takes the place of being seen in person, though, and she has an appointment with him in May. Since Charlene had her colon removed on 6/1/2010 she has hardly been symptom-free. She used Canassa suppositories to calm her rectum. She still feels pressure there from time to time. She has stomach pain, back pain, joint pain, headaches...I'm sure we'll be going in for tests after we see her gastro in May. On the other hand, she is excelling in school, quit swimming year-round to concentrate on her music aaaaaannd...drumroll please.....she has a BOYFRIEND. Now I'm the mother of four daughters (and one son) and this is all unchartered territory for us! Heck, our other girls didn't even go to the prom with dates! I was thrilled for her though, since I'm sure she had her doubts about boys liking her. ANYWAY. That's Charlene for now...just growing up and enjoying life, and working around her Crohn's symptoms when she has to. Recently her high school marching band traveled to Disney in Florida and marched down Main Street. We went along, got a room near her group's room, and she popped over from time to time to use one of our bathrooms, and change her flange/pouch, etc. It worked out just fine all around. I'll keep you updated after we see the doc in May. Take care everyone!! Love, Janet and Charlene and family
  13. Happy Birthday xx

    1. Janet Mitchell

      Janet Mitchell

      Aren't you SWEET!!? Thank you! Having a wonderful day so far!! Thanks, Kathy!

  14. New Worries

    These past two weeks have been a little harrowing, with Charlene complaining of rectal pressure. After she had her colon removed on June 1st 2010 the doctor asked her if she had any discharge, or pain, in her rectum. She never has. He thought that was amazing since for a lot of people that becomes the most serious problem after surgery. SO. Here we are, 15 months later and she's experiencing pressure in her rectum. The doctor says she probably has active inflammation, which of course disappoints me, since that means her Crohn's disease is alive and well. He prescribed Canassa suppositories, and we're waiting to see if they help. She has had a minimal amount of bleeding as well, but any bleeding is too much, as far as I'm concerned. Meanwhile, this has all hardly slowed her down. It paralyzes me at times, but she carries on as usual!!