Oh my god, I have never blogged before and, if I'm honest, I have absolutely no idea what I am doing! Still trying to find my way around this website (and I am supposed to be computer literate!!!), not to mention trying to work out the benefits (and cost!) between being a free member or a full member. But do you know what?... I just want to meet some new friends, friends who understand, friends who know what it's like, friends I can laugh with and, my god, if I stumbled across a special friend, wow, wouldn't that be great!
I had my op 3 months ago, I didn't have years of debilitating illness... I had the odd flare-up of UC and then I was fortunate enough to be able to lead a normal, almost symptom-free life for years. But we can't be lucky forever, I guess. In February this year, I got a flare-up that just wouldn't go away. I ended up in the hospital and was devastated to be told my bowel would rupture if I didn't have surgery. And so here I am, one ileostomy later... which I haven't accepted yet, but on top of that, my wound opened up following an infection so I still have two very large holes in my abdomen and they are taking forever to heal.
I've loads of good friends, but none that understand. Life is for living and I want to live it, and I know there are loads of you out there who know how to do that, and I would really love to hear from you all.
Hey honey, welcome! You'll find loads of people on here who understand. I know what you mean, friends can be great but I find if you haven't got one you can't fully 'get' how it feels. Anyway, I had UC from about Easter last year and it never really went, had my op on 1st July and honestly not looked back. Don't get me wrong, I have down days and some really wonderful people on here have given me some really positive comments. The people on here are great and will help you come to accept your ileo (just curious, have you named it?). Wishing you all the best, Mrs O xx
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Welcome Honey!! My story is very similar to yours. I was diagnosed with UC last year, got on medication, and lived symptom-free up until this last May. Nothing my doctor did could get the flare under control, so surgery was the only option. My wound also got infected and is just now starting to heal, but it is a slow process. You have definitely come to the right place. Everyone here is super friendly and supportive. Best of luck to you.
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Hi Honey B. If you imagine how ill you felt just before your operation and if you were going to go on like that for years, you should feel glad you had your ileostomy. I was a fit, healthy 27-year-old bloke one day, and the next, UC was ruling my life. I swore I would never have the operation, and for the next 8 years, I had virtually no life. In the end, like you, I had no choice, and believe me, when I was told I had to have it, I was ready. Yes, I've got a stoma, but other than that, I have now got my life back and am fit and well again. I remember feeling resentment after my operation and my stoma nurse saying I should think of my stoma as my savior and friend and that now I was an even more special person. She was right, and I have never looked back. You are not alone, and we all have the odd "Why me?" day. Things do get easier every day, and you just get better and better at dealing with it. Chin up!
Hi Honeyahh, a huge welcome, and if you want friends, you've certainly come to the right place. Like Dick says, it's exactly the same for me. It's been a long journey, but your quality of life is going to be fantastic. My story goes back to 2002 when it all started, and my last surgery was May 6th, 2010. Hope we can talk soon.
Hi Hunny, we are all in the same boat here. Never be afraid of wanting to talk or if you need any advice. We're here to help all of us. This site is just great. Welcome...tc ambies.
Hey Darls or Honey, hahaha, check out Mooza's "Me, My Pictures." Guess what? Yeah, you will survive the love/hate thing with your stoma. I have had this stoma for the third time since 1006, but it's been reversed a few times due to Crohn's Ulcerative (spelling sucks). Anyway, I have never done my own blog, so there you go. You seem like you've done something new, hahaha. I love to get out as well. My problem on this site is that it's all UK or USA, not too many Australians, and yeah, I do love drinks with friends, eating out, pretty much everything. My first stoma was when I was 29, so I did the bungee jump, hahaha, crazy thinking life was over only because I was turning 30, not for having a temp/ileo, lol. But yeah, my suture line came open where I tried to sit, so that took ages. If you're on here, I will send a wink, which some of us who aren't paid up use as an invite to go into the chat room, okay? That goes for anyone if you want to laugh, cry, or vent and laugh, whatever. It's actually like no one is there, but if you ask or invite, people get in; it's the time zone problems. Welcome, Darls, things should get better. TIME... Oh, boys' school, hahaha. Mooza, Melbourne, Aust. P.S. I volunteer time at Ostomy Assoc, so if you want info on pouches, powders, let me know, cheers. Anyone xx
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Hey, honey. You will make lots and lots of very good friends on here. The people are all amazing. But watch out for the MARE MOOZA. She is trouble, lol :-) :-) :-)
Wow, I'm amazed by all your lovely comments. I had been feeling very alone, but you've all put a smile on my face this morning...thank you. I hope that I will be able to make friends with you all. I haven't named my stoma yet...mostly because I don't like it, and if I were to name it now, it wouldn't be a very nice name! I know I should be grateful that it saved my life, and maybe in time, that is how I will feel, but at the moment, I feel that it has robbed me of a lifestyle I loved. Perhaps it's just early days, but it controls me, and I feel the opposite way to Shelly...instead of having an active part in my daughter's life, I feel like I am watching it pass me by. But all your comments have been so positive, so I guess I just need to give it time.
Hey Gizmo, I hope you meant that in a loving and affectionate way!! Or your Gizmo will be blocked, hahaha. Just made that bit up. I like it actually, thanks Gizzy. LOL, you wait, mate. GRRR :)
Yes, that's the attitude, Honeyb. It really is early days yet, as you say, and I know that I'm only now comfortable with mine. Didn't want to touch it at first, but now know how invaluable he is. But please don't let this distance last too long between you and your daughter... it should be such a wonderful time. I even feel slightly jealous when I hear folks talking about how they get on with their kids. So don't let your stoma rule your life... just try and get comfortable with it, and you'll be back to your normal life again! :-) Take good care, Colm
Keep your chin up, Honeybblunt. Things will get better with time, and your friends will still be your friends. I am sure they understand what you are going through, but they can't feel it, and they cannot give you any advice because they are just not walking in your shoes. That makes quite a difference, doesn't it? You've come to the right place here. Plenty of great people.
Honey, give yourself time to heal both physically and then emotionally. You will come around to understanding it and getting along as if nothing has changed at some point. Please give it time. Welcome. Guess what? You are not alone and will never be alone in this journey. There are hundreds of us out here who will help you through. Chin up, we are all here for you.
We learn to fly not by being fearless, but by the daily practice of courage. There are a lot of courageous people on this site. Listen, and they will help.
You got that right, lulu1313... very nice way of putting it. Yes, honey, think of all of us as your friends and chat me up anytime.
You are all lifting my spirits... For the first time, I realize I'm not alone.
Repeat after me. I am not alone. I am not alone, I am not alone... I hope you are laughing now... It's time to smile, Honey... Michael
Hi... Welcome... This site is great. Keep up your good spirit and your right life for the living. If you read my profile, it will tell my history. Feb/2011, just got my permanent ileostomy (tough surgery). My hernia burst when the doctor opened me up; I was in ICU for 2 days and in the hospital for 2 weeks and a day. This doctor did 3 of my surgeries. 7 months later, I am back to work. What I always say: think positive about life and enjoy what you have... mmb
Hi and welcome. I still have down days; I find just taking one bag of s%^$t at a time. The best part of Crohn's is the great people that you will meet.
Hi! Hey sweetie, you definitely are not alone; in fact, you belong to a very large family now... :) :) :) We are all understanding of how you're feeling, and we're here for you, dear. :) :) xoxo
Hey HoneyB, You are not alone... you are in good company. We ostomates appreciate life and its joys more than the average person as we have experienced difficult times and survived. Some when we are young, as myself, and some in later years. We have gained a better understanding of what is really important. We all have good, fair, and difficult days. Better days ahead. Barry
Well, I can certainly relate. I was diagnosed with diverticulitis in 2004 and went symptom-free for years. Then, in mid-2010, I started having more recurring flare-ups. They seemed to be getting more frequent and closer together. Well, enough was enough, and I spoke to a colo-rectal surgeon for a bowel re-section to remove the affected part of the colon, that was on 08/02/11. Everything seemed to go fine, but 2 days out of the hospital, my intestines started to leak into my guts, and I had to go in for emergency surgery for the infection, and ended up with a colostomy as well. So, I started off with 1 surgery and now will have, God willing, only 3. The surgeon said it should only be temporary, but the chance is there it might be permanent as well. So, I am trying to keep laughing about it and keep my head up. I asked the ostomy supply company if they sold mufflers or silencers for my bags since I work for a bank, it will make conference meetings quite interesting! LOL!
If you are thinking of mufflers or silencers, you can check out the website for Stealthbelt. They are making mufflers made of neoprene. I don't know if they are shown on their website, but they have a 1-800 number that you can call and ask about it. Have you named yours yet? My husband and I can't come up with the perfect name for mine yet. I have been calling it Chi-Chi for the time being until we come up with a good, funny name. Something that no one else will know what we are talking about if they overhear us talking.
Yesterday was a turning point... I ventured out, bought a new car so I can get some of my independence back and hopefully some confidence, invited friends around for a drink and a meal, and it made me feel really good... normal almost! So good in fact that I ventured out again this morning and went shopping with a friend... bought some lovely big knickers, so I can knock the old granny ones on the head... and to top it all off, I pick up my new car later. And it's all your lovely comments that have helped me to do that. I've got to ask though... what is a muffler?
Hello Honey - We have all 'been there' in one way or another. Welcome to a community that understands.
Honey, I doubt very much that any muffler device will deaden any unwanted/unexpected turbulence completely! I have found over the years that your stoma will usually give you a little warning (like a little tickle) before it breaks wind, and this is your opportunity to discreetly place your hand over the stoma to muffle any unwanted noise if you so wish. Of all my little niggles since my op, unwanted wind noise is the biggie for me when I am at work, but at the end of the day, if it does catch me out, my colleagues know my situation and laugh it off with me. I think it is important to be open about your new body image from the start. For me, it was the right thing to do, but this is a decision for you to make (no one needs to know). Happy New Car!