28 Responses to About Me
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!
Peter
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 chinadoll78@verizon.net and put cd friend in the subject. Hope to hear from someone!
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there is a site called MeetAnOstomate.com………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?
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yes, I too am a Ken Butt
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 Belt.com if you haven’t already. It will change you life!
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
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!
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.
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!!
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
[...] 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: