Me and my IBD & Ostomy Awareness Ribbon

28 Responses to About Me

  1. [...] Full Frontal Ostomy Charis, long before we both had blogs, was the very first person that I reached out to online when I was facing ostomy surgery. She is a positive role model and I love her blog and all she does to spread ostomy and IBD awareness. [...]

    • Hi Charis,

      Hope all is well! I just nominated you for the Versatile Blogger Award. There are quite a few steps to do to accept the award and they can be found here:

  • Peter Sweetbaum says:

    Hi Charis. My wife is likely to go through the 9th stage just like you, ie removal of pouch and almost certainly hysterectomy at the same time. The pouch has never worked despite our surgeons desire to not remove it. My wife isn’t great at seeking others out to talk to and I also had a number of questions which you or someone else may be able to answer?

    1. Is this dangerous (recognising you are not medically trained and not giving advice), just wanted to get a sense from someone or some people that have had both done at the same time.

    2. With 8 surgeries and 3 yrs + of medical horrors, I’m assuming there are positives here she/we can focus on!?

    3, My wife is 42 and we have 3 kids who are all great. As a man – how impactful is a total hysterectomy? Relative to all we’ve been through – is it still very big. I’m most concerned about the emotional impact of this on her – she’s suffered enough already.

    4. Did you get multiple medical opinions on this before doing it?

    5. Last one! Sorry! I assume having a total hysterectomy and going the whole way makes sense to avoid other issues like cancer later on in life?

    I’m really asking the personal/emotional and female perspective on these questions I guess. I know you’re not a doctor but I also need some alternative perspectives if possible.

    Thank you very very much for even reading this long question let alone any responses you or anyone else may be able to give!


  • Melissa says:

    Hi my name is Melissa and I have crohns among others things and got my first bag in 2006. Diagnosed at 9 now 34 I am still looking for friends support that I can share the same experiences with and understand what we go through. If anyone wants to communicate please email me and put cd friend in the subject. Hope to hear from someone! :)

    • Michael Hassett says:

      there is a site called………many peeps like us, u can meet and learn alot from the peeps on there, If you do go on, my name is BeyondPar on there, as people have screen names, good luck… Michael

  • I’ve never heard to it referred to as Barbie Butt before. Does that make me a Ken Butt?

  • Hilary Gutierrez says:

    I have discovered something that changed my life and wanted to share with you. I figured since you started this site you can help girls improve their life as well. I had my large intestine removed as well which also led to an ileostomy bag. I have lived with this for a year and a half. The second attempt at making a j pouch was successful. Although its actually an s pouch. My twin sister searched for anything related to ileostomy products and came up with something amazing. It is called a stealth belt. I’m not sure if you have ever heard of one. Everyone I know with an ileostomy bag has never heard of this. You wear it around you and place your bag in it. It hold it in place and it’s nice and tight. It allows you to be comfortable well active. It’s awesome and I could never live without it. There’s some other ones out there but nothing like this. Look up Stealth if you haven’t already. It will change you life!

  • Helen says:

    Wow Charis!!! I did not know you had been through soooo much! 8 surgeries before your 32nd birthday wow and you do your FB pages and a blog and now your mum is doing on too! You are too cool girl! I am in awe!!! <3

  • Kelly Doherty says:

    I also suffered for years from Crohn’s Colitis. I welcomed my ileostomy in Oct of 1998. I felt very self conscious and almost ashamed of my bag. Thanks to you and your blog, I have now finally started to “let it all hang out” and not be ashamed. This is a part of me now and I need to be okay with that.
    I want to thank you for everything you do for others dealing with these issues. I hope everything keeps going well for you.

  • I’m a 20 year old college student and in 3 days I’ll be getting a proctocolectomy and a hysterectomy and having my permanent ileostomy put in. I’m really into fitness and weight training, so finding this blog made me really happy. I’ll be on here quite a bit once I’m out of the hospital and healed up :) Thanks for being an inspiration!

    • Charis says:

      Invidia – I also had a hysterectomy and a perm ileo done simultaneously. I wish you the best in your surgery and in recovery. Six months from now I hope you’ll feel 100% better and be out and about, living your life the way you want to! I can’t wait to hear how everything goes for you!

      • Helen says:

        Can I please ask why ye also had hysterectomy’s?

        • Invidia says:

          Mine was a precautionary thing. My cancer was genetic as a result of having Lynch Syndrome, and besides the colon and the rectum the other main place the cancer usually hits patients with LS is the uterus. So considering mine was kind of fried from the radiation anyways, I opted to have it removed.

          • Helen says:

            Thanks for the reply Invidia. I hope you are doing well now. :)

          • Peter Sweetbaum says:

            Hi Invidia

            I’ve posted. Long question above, but also wanted to know how you are now??



            • Invidia Rossi says:

              Hi Peter, I know all those questions you asked were aimed more towards Charis, but I’m gonna answer them too :) it’ll be good to have more than one person’s input on this, since answers are going to vary.

              However to answer the how am I doing now thing, I’m doing great! I had my surgery on April 24 last year, and then healed up for a few months, did 6 months of chemo and for now I’m done with everything! I was able to go back to school and since then I’ve just been trying to get through that.

              1. The surgery itself… Well, I’d say ALL surgeries have their potential dangers. My surgery was 10 hours long and I think they were all concerned that because I’d only done a handful of small surgeries before that something might have happened. However, everything went 100% well. I healed up fantastically after the surgery and I was even able to leave the hospital only after 6 days! I’m not going to say that’s how it works for everyone, because it’s not, but if you’re going to a reputable hospital/doctor I would try not to worry about it.

              2. Of course there are positives! I had a friend who was around 28 with the same cancer as me (it was more in her colon than rectum though) and she had had an ostomy for a while, then got a pouch, then she told me that she wishes she hadn’t ever got the pouch because she thought everything was so much easier with the ostomy. I’ve had a few minor issues with mine, and some people still have to go back for small surgeries with blockages and stuff, but from what I’ve heard and experienced the problems with an ostomy are usually way less irritating to deal with than crohn’s or cancer or IBD.

              3. The hysterectomy… I can’t speak for everyone here, being 19 when I had my surgery, but also being someone who never planned to have kids I jumped at the opportunity to get one. Not having a period is great, and not having to worry about getting pregnant and subjecting a kid to the same horrible genetic issues as me is also great. Now, if she’s having her ovaries removed too (I kept mine) she’ll have to be put on hormone therapy for a little while I’m assuming, which could be a pain to keep up with. However, if she’s keeping her ovaries then I know she’ll still PMS every month, so that won’t change.

              4. Yes! I got opinions from at least 3 doctors, a couple radiation oncologists, and 3 surgeons. At first the doctors thought they could get rid of my cancer without going the whole way with all this removal of organs thing. However the surgical oncologist that I went with discovered that the tumor was too far down on my rectum/anus that if he even tried cutting into it just a little bit he would destroy the sphincter and therefore destroy the usage of my anus… Therefore my ultimatum was 1) get rid of my cancer, get an ostomy, and have everything removed, lessening the chance of it coming back or 2) leave in my organs, but also leave in my cancer. I certainly didn’t want to keep cancer at 19 for vain purposes, so I just got rid of it all! And I haven’t regretted it since! :)

              5. Yes, the hysterectomy for me was to prevent cancer. If your wife has IBD or crohn’s she may have less of a chance of getting uterine/endometrial cancer (the chance that I’d get it was around 60%). However even for a person who doesn’t have my genetic mutation, the chance of getting uterine cancer goes up as you get older, so it’s a good preventive measure if you ask me.

              I hope you get some more answers from other people! And I hope everything goes okay with your wife :)

              Oh! One last thing. I’ve noticed from meeting other people that also have ostomies, the younger patients that around their 20s/early 30s are often the ones who aren’t embarrassed by their ostomy. They still go out and experience life… However the women that I’ve met with ostomies that are in their 40s and older seem to become hermits after their surgery, they’re too embarrassed to be seen in public as if EVERYONE would know about their bag. Don’t let your wife feel that way! There’s always a chance of your bag blowing or something embarrassing happening, but as long as you always bring a change of clothes with you, your extra medical/ostomy supplies, and know where the bathrooms are you’re good. So if she starts to feel too embarrassed to go out just let her know there are PLENTY of other people out there like her, but how can you tell? Most of the time you can’t :) and that’s the reason why it’s nothing to be scared of when it comes to going out in public, nobody’s going to know!

        • Charis says:

          Sorry – missed this question! I had my hysterectomy done for a couple of reasons. The first is my strong family history of fibroid tumors around the age of 34-36 (all the women on my mother’s side had to have hysterectomies done at this age – well, within the 20th century, that is). The second is that my surgeon was worried that if I needed it done in the future, the surgeon doing it would have one helluva time with my adhesions – plus, it’d be one more surgery – why be opened up again if I could avoid it? And lastly, I have never wanted to have children. I’ve been asking doctors to do a hysterectomy for ten years, so I jumped at having it done when my GI surgeon brought it up!! Turned out it was a good decision anyway – they said my uterus was the size of an eight-year-old child’s uterus and my cervix was completely shriveled. ick!!

  • I am currently out of work and out of commission it seems with my Crohn’s colitis (or what they are now thinking is UC). Because of all of my recent hospital stays and steroid treatments, I’ve gained about 20 unwanted pounds. I tried yoga, but after a few days it put me in so much pain I couldn’t walk…any suggestions for me to lose some of this weight? I’m currently 5’2, 143 lbs. I’d like to get back to 125, it seems to be a healthy weight for me (any less and I look anorexic). I don’t know what exercises I can do that won’t put me in so much pain.

    • Charis says:

      Hello :) Are you able to do spinning or elliptical machines for cardio? How are you with regular walking? With the steroids, keep in mind it takes awhile for that stuff to work out of your system – not to mention all the other meds they’ve pumped you full of, I’m sure. What is your diet like and what foods can you NOT tolerate?


    you have made another public account, so well done. You ladies seem to have hysterectomies as well as the rest, as if there is not enough to contend with. We find it difficult, I think, to really contemplate what is done to us – what with good pain management at the time of surgery etc. You are doing well, Darren

  • I just found your site, I’m SO inspired! I had UC at 15, ileostomy with j-pouch at 31, and diagnosed with Crohn’s shortly after. I have a kidney stent due to adhesions/scar tissue. I had a blood clot in my leg 3 yrs ago and have to take injections daily. With all that going on, It’s difficult to work out to the level I want. I have a lot of pain with the stent and my knees have had multiple surgeries, so no squatting. I can’t lift more than 4 lbs (cause of stent) but I want to have definition, How do I get my legs to be tighter with such limited exercise? I can spin every day! Do you have any advice for me?
    I really admire you and I think you are courageous, I want to have a tenth of your courage! I want to help people also, but I’m still shy and afraid to talk about my illnesses publicly. I”m slowly trying to post more about my illness on tumblr, so I’m getting there!! Thank you!!

    • Charis says:

      Hey Jeannie :) First off, Happy new year! When is the last time you were able to exercise? When is the last time you did spinning and for how long and at what intensity (mild, moderate, high)? I will put together some simple, low impact exercises for you and you can see if they’re things you’d feel comfortable with.

      It took me awhile to feel comfortable opening up to people. That you have a tumblr blog and are on here writing is a lot more than what many people feel capable of doing.

      I’m sorry you’ve had to go through so much, but I’m glad you wrote :)

  • Charis says:

    You’re young, Darren! And have been through so much! I’m really happy that you are doing well and working out. I hope 2012 is a great year for you and that you reach a fitness level you’re happy with :) Thanks for coming to the site! It’s brand new so much more is being added, day by day!


    Hi, thank you sooo much, just came across your site. For me late 2009 stage 1 bowel cancer was found – due to polyps. Lots of radiotherapy tiny bit of chemo then Pan proctocolectomy permanent Stoma . I’m now 20 months on and trying to get fit, at 41 ! So am very keen to watch your fitness regime
    Thanks again Darren, Northern Ireland

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