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42 thoughts on “Send me a message

  1. Dave Rudzin

    Stephanie, I wanted to wish you and your family a Happy and Healthy New Year. I hope all your New Year hopes come true this upcoming year and I hope to have the chance to work with you in regard to educating people with the UOAA about what ostomy surgery REALLY is.

    Reply
  2. Liesel

    Hi from Australia 🙂

    Great piece on swimsuits! I have been an ostomate for 16 years (Crohn’s), and have (by trial an error) used similar strategies as you for swim wear – my first surgery was an emergency surgery (colectomy and ileostomy), and so the scar is long and a bit ugly (has been cut 3 times now – they should have put a zipper in!), extending from just below my breastbone to my pubic bone, so I tend to stick to one pieces, or 2 pieces with highwaisted pants and tank style tops (i’m a big fan of patterns, and ruching) as I am more self conscious about the scar than the bag (weird, huh?!!). Just discovered your blog, will keep reading!

    Reply
    1. Teddy Burr

      For Ladies swimsuits, I’ve cracked it with an ideal option. You can buy LAYERED TANKINI TOPS. I buy mine from Swimwear 365 in the U.K. They also sell high waisted black swim shorts to wear with the Tankini tops. The tankini tops are long enough to just FLOW over the top of whatever bottoms you decide to wear (except skimpy ones of course). I love my pretty layered Tankini. You can stay covered, with no obvious “bulges” on show, relax – and look pretty and modern at the same time!!

      Reply
  3. Jessica Scire

    Hi, Stephanie
    I just started reading your blogs and I have to say, I think you are an amazing person. I have been living with a temporary ileostomy now for two weeks. I had a c-section with my daughter and as a result I had a periforated bowel which led me to having an ileostomy. I haven’t come to terms yet that I will have this for 2-3 months. I empty my bag when I have to but my visiting nurse still has to change it for me.

    I also don’t have a clue how to dress now. I’m approaching warmer weather so what can I wear? What type of bathing suits and can the bag be in a pool? I’m 34 and I love to dress cute but all I wear is my pajamas. I was going to wear my maternity clothes because of the extra room and comfort but I have lost most of my pregnancy weight. I’m sorry I’m just lost. I was not expecting this and I really don’t have a clue .

    Reply
  4. Stacey Bontz

    First I want to tell you how much I appreciate you sharing your story. You have helped me through some very dark times this last couple of months (I was very sick with UC, and slipped into a semi-coma and woke up with no colon). It has been very hard, but people like you make it easier.
    I also have a question for you. Have you ever had a sore around your stoma that become infected? I have one now, and I’m on antibiotics for the infection but it does not seem to be getting better. Any insight would be helpful. Thank you!

    Reply
    1. Stephanie Hughes Post author

      Hi Stacey. Thank you so much. That really does mean a lot to me. I’m glad I could help in some small way. And I have not personally had a sore become infected, but I can ask around to see if I can find some insight.

      Reply
  5. Carroll Hoke

    I am an “old lady” with no blog and no interest in having one. But I have learned a lot through trial and error and have some valuable advice for ostomates to avoid skin problems. The best advice is to be absolutely sure to let your skin get BONE DRY before replacing your wafer. We tend to think we are doing this, but think. . . Aren’t we always anxious to get that baby back on so we can go about our business? I have gone swimming and then lay out in the sun with a wet wafer and that caused yeast infection. I have replaced my wafer too quickly without letting the sting free wipe adhesive dry enough and that caused it. And if I did get an infection, I now know to have an extra prescription of what works inside as well as out (in my case ketoconozole, an anti fungal) so that just in case, I can take it if the infection starts to take off. If ever I have to take an antibiotic for anything, I let the doctor know I also need an anti fungal prescription, because the antibiotic makes me more vulnerable to a recurrence of the yeast. And there are lots of posts on the Internet for topical remedies, all of which may help. Anti fungal powders help, and I even had thanks to my doctor a prescription for the old fashioned purple stuff called gentian violet, which is wonderful because when you put it on a yeast infection on your skin, it stops the agonizing itch. Good luck to all. Trial and error, but mostly prevention, was the key for me. Carroll in Kansas.

    Reply
  6. amy

    Quick question, I’ve been fighting through med to med for my CD. I’m 44 with an 8yo girl and a 10yo son . My question is this, the bags I see seem so large. I am very accustomed to limiting my intake based on my activities as a I only have about 5 inches or les of colon. Are there smaller bags that could be used in situations that might be a little hard to hide the bigger bags? Are there caps of sort ,plugs, that could be used for a short period ot time with an illeostomy? I want to be prepared for what appears to be my ultimate outcome.
    Thanks for sharing you experiences. You are my hero!

    Reply
    1. Stephanie Hughes Post author

      Amy, there are smaller closed-end pouches that you can use for specific occasions. They are one-time use and have to be thrown away and replaced each time, so they aren’t necessarily the best option for all of the time, but definitely for certain scenarios they are great. For an ileostomy, there really aren’t any cap options. But you do mention that you have some colon left, so perhaps there is something you could use. I would chat with a WOCN and see if they think you could use a cap. Also, the new Sensura Mio pouches from Coloplast have some velcro where you can fold up the pouch to a smaller shape, so that may be another way you could go. I hope that helps.

      Reply
  7. Elka Troutman

    Wow – you have done a lot of great work on this site! A friend of mine told me about your site and your FB page. I am a 50 year old woman, and my story is a bit different than many on this site. I was diagnosed with advanced stage rectal cancer in May 2014, and needed surgery to remove my rectum and sphincter muscle, where the tumor was sitting. I had the surgery in September and I am still getting used to the idea of a colostomy. I have a handle on the mechanics of it all, but the emotional part is very tricky. The rational side of my brain reminds me that I am alive, and have a new way of pooping, but the emotional side of me still thinks the whole thing is gross. Seeing posts on this site and your very positive attitude is wonderful! Keep up the great work and I will be sure to check this site often. Thanks, Elka from Ashland, MA

    Reply
    1. Stephanie Hughes Post author

      Thank you, Elka. I’m glad you shared. I know how difficult it is. Especially those first few months. It does become easier and less gross as you go. I 100% believe that the emotional/mental side is a much bigger hurdle than the physical side. Staying positive has made a world of difference for me, as well as finding a great community of others who can understand.

      Reply
  8. annie connolly

    Hi Stephanie – I found your excellent blog after writing my own (www.afeedersdigest.wordpress.com) about my two children who suffer from an unspecified neuromuscular bowel disease that appears to be progressive. My ten year old had a colostomy two and a half years ago , with two revisions since. It’s been a hell of a journey with him. I’m
    Currently with my 13 year old daughter in Great Ormond Street Hospital for Sick Children in London after 13 weeks. Next week she’s going to be having a loop ileostomy and a peg-j fitted. She already has a Hickman line in and is being fed by total Parenteral nutrition. It’s been a very difficult admission and likely to be a number of weeks yet . I wanted to tell you your blog has been an enormous help to her. Your body confidence has struck a chord. Her confidence has been knocked by this illness and I know I’ve cited you as an example of someone who hasn’t given up. Her tender age at this difficult time makes me weep but I know she’ll get through it and grow up to do amazing things. Blogs can and do reach out and I’m grateful she found yours . Thank you

    Reply
    1. Stephanie Hughes Post author

      Oh, Annie, I can’t imagine what you are your family have been through. Your daughter sounds so strong. I was diagnosed with Crohn’s when I was her age, so I have some frame of reference for what it’s like dealing with these sorts of issues as such a young age. But I do hope that this surgery will mark a turning point for her and that she will be able to move forward and do great things. Thank you so much for your kind words. It’s means so much to hear that I’ve helped, even in a small way. I hope for the best for you and both your children. Please stay in touch.

      Reply
  9. Curly

    My name is Curly and I have an ileostomy for a year now. I had several incidents where my bag has leaked through my clothes and have been embarrassed. I thought of an underwear that will prevent these and also to keep me dry without having the bag against my skin. Please check out https://www.indiegogo.com/projects/sebastian-wear#/story and see if this can work for you. I also found a natural way to deal with pain and slow output when I eat hard to digest foods like corn and peas. I rub castor oil on my belly, put wool flannel over it and then a heating pad. It has worked so well that I never had to take any pain meds again! My naturopathic doctor told me about this.

    Reply
  10. Jessica Harder

    Could you please help me share this?

    I hope it is ok that I shared this, but my Brother wrote and published a beautiful article that I believe and hope will touch your heart and make you and other’s smile. The support that he displays through his poetic words means the world to me. He mentions the Charity I kick-started with my Husband to help lift me from some recent “dire and dark” times. One of my dreams for my Charity is for this idea to catch on at other Hospitals across the Country and World…. similar to how handing out hats and blankets is a common thing people do for patients at Hospitals. I hope to help others pioneer this idea of starting something like this local to them. None the less, I think we all relate to these words in this article and I hope it gives us all a reason to feel a sense of comfort as it did me when I read the article. 18 years of struggling with IBD, 4 surgeries this past year and almost losing my life twice recently and I still find “happy tears” thanks to love and a support system that helps me stay positive. Have a wonderful day! ❤

    http://m.huffpost.com/us/entry/8733170

    (Please only share the link as I have to obtain permission to republish…. thank you so much in advance!)

    Reply
  11. Sari

    This is a great blog – super inspirational as I am a first time pregnant girl with bad crohns struggling with bowel obstruction symptoms at the beginning of the third trimester. may I ask – what did you do for a liquid diet during pregnancy? Did you primarily stick to ensure or did you have any other secrets for growing such a beautiful little boy!?

    Reply
    1. Stephanie Hughes Post author

      Congratulations, Sari! That’s so exciting. But I hate to hear you’re also dealing with an obstruction. So I made a lot of smoothies. My doctors told me that getting protein was really important so I would use a protein shake for the base sometimes and put in fruit, peanut butter and spinach, or something similar. But I had a lot of boost shakes at my house! I hope you’re able to move past this soon. Excited for your little one to arrive!

      Reply
  12. Janice

    All of the post you responded to are older so I’m not sure you respond anymore. But every time I go on the internet to see how others are coping your page is always on top. The thing I don’t get and that I cannot get used to is the less expensive one piece bags with a opening at the bottom. I mean no matter what they are never really clean once you have had a bm in them? How do others cope with that? I am a small frame woman, I also drink a lot of tea and water. I can’t walk around with a bag that looks like mud has been squeezed through a tube? Even when I am at home alone…I can’t stand it? I am a positive person…I always thought. I’ve dealt with many health issues my entire life. I have also used the two piece disposable bags, and I thought I was in heaven until they started tearing up my skin? I mean it feels like if I leave the back on for more than a day, two at most, the “glue” is eating is my skin alive….the moisture, stink and pain is disgusting. What bag do you recommend? I am new to this since November, 2016. I had to have emergency surgery from ruptured intestine soon after a broken hip. I had to stay in hospital for many weeks due to full on poisoning of my body, so I am lucky to be alive and do not mean to sound negative. Thank you kindly for any feedback.

    Reply
    1. Patsy Gazaleh

      Janice, it takes some getting used to and there are products out there to help. I had my ostomy
      3-14. I still have times that I have to change my bag and clean my skin. Sometimes once or twice a day. There are other times I can go a week.
      First, you need to always protect your skin. I use stoma cleansing cloths to thoroughly clean the skin around your stoma. They work much better than baby wipes because baby wipes can leave a residue on your skin that will cause your device to fail. Once the skin is clean, use stoma powder and barrier wipes to prep your skin for the device. I use the barrier wipe on the skin, then sprinkle the stoma powder and blot the powder with a barrier wipe. You don’t need a lot of powder, just lightly sprinkle then make a sort of crust with the wipe.

      Then you can attach your device. I prefer the 2 piece devices. It’s a personal preference.. A lot of companies will send you samples. So you can choose the device that works best for you. I do not use any glue, other than the what is on the device.

      When I go to empty my bag, I have a cup of water that I use to rinse out my bag. There are times you are not going to be able to rinse the bag. There are odor sprays and soaps to keep the smell of the bag from making itself known. I have also found that Bath & Body room scents really help with the odor. It only takes 1spritz to make the odor disappear.

      I am always checking my bag for leaks. You want to look for liquid around the wafer. Do not leave your device on for very long once you notice the moisture. Any moisture that is visible on the device has already been on your skin for a while.

      I hope this helps. You can always contact me by email if you have any other questions.

      Reply
    2. Stephanie Hughes Post author

      Hi Janice, I totally get where you’re coming from. Are you using the see-through bags or the opaque? I had a hard time with the see-through ones but felt a lot more confident with the opaque. As Patsy mentioned, you can pour in some water to help clean it out. I usually wear my bag from between 4-7 days because if i change more often it really irritates my skin. If it doesn’t bother your skin, you can just plan to change it more often. Or with a2-piece, you can empty for a couple of days and switch out the bag but leave the wafer. I’m unsure what the difference is between the one-piece and the two-piece as far as bothering your skin. Is it a different brand? If you haven’t already, I definitely recommend trying samples of all different bags to figure out what works best. Barrier wipes can also work well. I’m unsure if this is helpful, but feel free to email me if you want to chat further.

      Reply
  13. Adam Moore

    Stephanie,

    Namaste. I knew a colostomy was in my future, but it was not until I accepted that I had exhausted all other options that I started searching for what ultimately led to you. I needed a change in my lifestyle as I stayed home, missing so many opportunities I deserved to be a part of. I took a shower after each of my “issues”. There were days I took upwards of 8 showers a day! It was no way to live, especially when I possess a strong desire to travel. It took me well over 4 years for me to grasp the inevitability & necessity of pooping in a bag. So, I told my surgeon of my decision to go forward with the colostomy surgery.

    What brought me to you was your answer to, “What happens next?” Now I know…

    The stories of the people on your site are what gave me something to look forward to during my recovery. The common thread of these testimonials was, to me, it’s okay; you’re not alone; it will get better; isn’t it already? Yes, it is!

    “The surgery went well. You can go home whenever you want. Clean bill of health.”

    It’s been, since May 10th, it’s been 17 days, and already I am off of all drugs. Things are better already!

    Reply
    1. Stephanie Hughes Post author

      Adam, that is so incredible to hear! Thank you for sharing. That is exactly the reason I started this blog and have continued to do so. I’m glad everyone’s stories have helped you through this. And it’ll continue getting better!

      Reply
  14. Steve A

    Having Crohns, being a runner, and potentially facing a future ostamy I was searching for others who had the operation and how they are dealing with it. Glad to find your story, really helped give me some assurance that when my time comes, it won’t completely change my life (negatively).

    Reply
  15. shelley rosenberg

    I read the stories and happy for u all who think or want to make others think having a pouch is yay! Well it’s not. I’ve had mine since I’m 15 I’m now 49 it’s been 34 yrs of hell and I would have rather lost a limb.

    Reply
    1. Stephanie Hughes Post author

      Shelley, it makes be sad to hear that you’ve had such a difficult time. I’m sorry. Although, I will admit that I’m pretty sure most people wouldn’t describe having an ostomy as “yay.” We all know that having an ostomy is hard and given the choice, I’m sure we’d all rather not have one. But for me personally, I was in so much pain and so sick beforehand, that it makes life with an ostomy totally worth it. That doesn’t mean I don’t still struggle with living with it, but it just means that I’d rather live with an ostomy than possibly be dead, or at least in a great deal of pain, without one. (I’m sending you an email, too.)

      Reply
  16. Skylar Stube

    I am a 35 years old and fighting colorectal cancer. I am preparing to have surgery in about 6 weeks to have the tumor removed from my rectum and a, hopefully, temporary colostomy. I have explored your site and found a wealth of useful information (thank you!) however I have not come across any articles that explain the supplies needed and the companies that provide them. As I begin to educate myself, I would love a little 101 to review colostomy supplies, how they are used and who supplies them.

    Thank you for sharing, I love your positive outlook and the information you provide. This will certainly be a helpful resource for me.

    -Sky

    Reply
    1. Stephanie Hughes Post author

      Hi Sky, I hate to hear that you’re going through all of this, but I think it’s great that you’re getting information now. That made a big difference for main figuring things out after my surgery. So I do have one post with some basic information on supplies and links to each of the major companies’ site to order samples. I definitely recommend trying all of them out. The companies are all great at working with you and sending whatever supplies you want to try. I have found that supplies are very subjective and different ones work different for each person. Plus, it’ll give you a few weeks without having to worry about ordering supplies. If you have other questions, feel free to send me an email! I hope all goes well with your upcoming surgery.

      Reply
  17. Annette Peters

    Hello Stephanie. My name is Annette Peters and I am a registered nurse. I have had a permanent ileostomy for about 5 years now. I also teach ileostomy classes to nursing students at the local college. I also allow them to change my appliance so they can learn. One of the biggest challenges with a ileostomy is the unexpected gas that spontaneously comes out loudly in social situations or while at work. I work closely with my patients and the gas sound was concerning for me in my job. I looked at appliances online but all were very expensive, cumbersome and not very practical. After experimenting with different materials I came up with a invention that works perfectly. The main material in this product is memory foam. The memory foam allows the ileostomy to drain but silences the noise. Since the memory foam is collapsible it does not show through my clothing. It also has other materials in it that help keep it in place and secure. Please let me know if you have any ideas on how I could get exposure on this appliance and how to get it produced and out to our community. Thank you

    Reply
  18. Becky

    I have had an ileostomy since July. Found a wonderful product called Diamonds, gelling and odour control sachets. I recently ran out and product is back-ordered from Convatec/Ostomy Secrets. Does anyone know where I could get some? Thanks, Becky

    Reply
  19. Kelli

    My daughter in law is meeting with her surgeon today. 3-22-17 to discuss removal of the vast majority or the colon and rectum. My question is my son is fairly new to this and is there certain questions they need to ask the surgeon before proceeding with the operation. She is 29 and has been sick for about 3 years with UC. She has been on remicade, humira, cixma. And none have helped much

    Reply
  20. MARGARET HOLLAND

    MY NAME IS MARGARET I HAVE A COLOSTOMY A BIG HERNIA AND ALL ROUND MY STOMA I HAVE A LOT OF SORES I AM NOT ABLE TO CONTROL WHAT COMES OUT OF BACK PASSAGE AND ITS A MIXTURE OF POO JELLY AND BLOOD IS ANYONE OUT THERE WITH SIMILAR I AM AWAITING A DECSISION ON A OPERATION TO REMOVE LARGE BOWEL AND GO THROUGH THE SMALL ONE.

    Reply
  21. Dawn

    Hi Stephanie, I also have an ileostomy…I had the operation 12/20/16. Have you ever swam with your ileostomy…do you have any tips for that?

    Reply
    1. Dawn

      Also, forgot to mention I also had Crohn’s..was dx. 09/16/2005. In Dec. last year with ulcerative colitis/crohns. Luckily they were able to remove my entire colon which was the only diseased part, and replaced that with an ileostomy…if I had to do it again tomorrow I would in a heartbeat..
      So do you still have crohn’s as well as an ileostomy?

      Reply
    2. Stephanie Hughes Post author

      Hi Dawn, I used to swim all of the time with my bag. I even trained for a triathlon so there were times I was swimming laps for an hour or more. I never had any issues with the bag. I think wearing the tighter one-piece kept it in place and it always dried back in place. However, if you ever did have issues with the edges peeling, there are products you can get to help prevent that.

      Reply
  22. Cheyenne Hill

    Im 27 and had a hip surgery which resulted in three days later me developing cdiff and losing 90% of my colon. I had an hr and i would have died without the surgery. Im looking to reversal at 6 months after the surgery. I have an iliostomy and i cry a lot because i feel ugly and useless and my scar is so big. I didnt want this for myself and im afraid of the reversal surgery. Please give me some advice and something to help me gain confidence back.

    Reply
  23. Dawn

    Anyone out there have an ulcer next to their stoma…also have trouble keeping their bag on b/c skin is irritated from scratching

    Reply

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