In Desperate Need Of Some New Friends!

on 08/29/11

Oh my god, 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 ya 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 month 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 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.

ConvaTec - Less Pressure More Protection

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Comments:

MrsO : 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 you ileo (just curious, have you named it??).wishing you all the best, mrs o xx

Past Member: Hi Honey, And a very warm welcome! Yes I think we all know what you mean about having friends but no one quite understands how and what you're feeling. I've found this place a wonderful eye opener and don't think I'd be in the positive frame of mind I'm right now if I hadn't signed up. You'll find some wonderful people here with similar stories and others who, bless them, really have been through the ringer. Always makes me think how lucky I've been so far. I've been lucky enough in that I'll hopefully be having a reversal of a colostomy in October after having emergency surgery last February for a ruptured colon. Keep thinking positively and you'll do fine. There may be some off days....we all have them. I'm just happy to be alive after what I went through earlier. Take good care, Colm

Past Member: dear heart keep in good spirits if you can there is no use telling you things are not tough because they are but keep your chin up things do get better or you learn to accept them better as my dear old mom used to say you get used to anything if you do it long enough even hanging

Past Member: Welcome Honey!! My story is very similar to yours. Was diagnosed with uc last year got on medication and lived symptom free up until this last May.Nothing my doc 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 definately come to the right place. Everyone here is super friendly and supportive. Best of luck to you.

Past Member: Hi Honey B.If you imagine how ill you felt just before your op 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 op 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. Ye 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 op and my stoma nurse saying i should think of my stoma as my saviour 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!!

dee05 : Hi Honeyahh a huge welcome and if you want friends you've certainly come to the right place... Like dick says exactly the same for me... its 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

ambies : Hi Hunny , we all in same boat here never be afraid of wanting to talk or you need any advise where here to help all of us.. this site is just great.welcomne..tc ambies..

Shelly2011 : I think my stoma is God sent. I can now go out with my family and have dinner without worry how close the bathroom is. I could tell you where every bathroom is located between my home and work. Now, I don't worry about it. My life is so much more calm than it has been in years. I can be an active part in my daughters life now instead of feeling as if I am watching her grow up through a window. I look forward to each thing I get to do with my children now. They think they have a new mom, and I feel like I get to be a new mom. Best wishes to all.

mooza : Hey Darls or honey hahahahah check out mooza's Me my pictures Guess what yeah you will survive love/hate thing with ya stoma i have had this stoma 3rd time stoma since 1006 but its been reveresed a few times from crohn's Ulcerative (spelling sux) anyway i have never done my own blog so there u go u seem like ya done somthing new hahahaha I love to get out as well my prob on this site is all UK OR USA not to many Australians ans yeah i do love Drinks with friends eating out pretty much everthing my first stoma i was 29 so i did the Bunjee jump hahahah crazy thinking life was over only cause i was turning 30 not for havin temp/ileo lolol but yeah my suture line came open where i tried to sit so that took ages if your on here i will send a wink which sum of us who arnt paid up use as an invite to go into the chat room ok that goes 4 anyone if you wanna laugh cry or vent and laugh wateva it actually like no one is there but if u asl or invite people get in its the time zone probs .Welcome darlz things shouls get better TIME ....Oh boys school hahahahax Mooza .Melbourne Aust.P.S I volunteer time at ostomy Assoc so if u want info on pouches ,powders let me know cheers.Anyone xx

Past Member: 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 :-) :-) :-)

honeybblunt : 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 a active part in my daughters 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.x

mooza : Hey gizmo i hope you meant that in a loving and affectionate way !! or your gizmo will be blocked hahahahah just made that bit up i like it sctaually thanks gizzy lolol u wait MATE GRRR :)

Past Member: 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. Even feel that slightly bit jealous when I hear folk talking about how the 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 afain! :-) Take good care, Colm

Mark : 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 the the right place here. Plenty of great people.

beyondpar : 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 the journey...there are 100's of us out here who will help you through..........Chin up , we are all here for you

Past Member: 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

Nicky : 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.

honeybblunt : You are all lifting my spirits....for the first time i realise i'm not alone.

beyondpar : Repeat after me. I am not alone I am not alone, I am not alone...............I hope you are laughing now.........its time to smile Honey..........MIchael

MMB : 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 perm. ilieostomy (tough surgery) my hernia burst when the dr. open me up, was in ICU for 2days and in hospital for 2 weeks and a day. this dr did 3 of surgeries. 7 months later, iam back to work. what I always say think positive on life. and enjoy what have......mmb

nogutz : Hi and Welcome.I still have down days, I find just taking one bag of s%^$t at a time.The best part of crohns,is the great people that you will meet.

WOUNDED DOE : Hi! Hey sweetie you definitely are not alone, in fact you belong to a very VERY large family now.... :):):) we are all understanding of how you're feeling and we're here for you dear :):) xoxo

mitdad : 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

Past Member: 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 spoke to a Colo-rectal surgeon for a bowel re-sect, to remove the affect part of the colon, that was on 08/02/11. Everything seemed to go fine, but 2 days out of hospital, my intestines started to leak into my guts, and had to go in for emegency surgery for the infection, and ended up with a colostomy as well. So 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!!

Shelly2011 : If you are thinking of mufflers or silencers, you can check out the website for stealthbelt. They are making mufflers made of neoprine. I don't know if they are showing on their website, but they have a 1-800 number that you can call them 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 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.

honeybblunt : 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 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 i pick up my new car later. And its all your lovely comments that have helped me to do that. I've got to ask though... what is a muffler?

nehamashira : Hello Honey -We have all 'been there' in one way or another. Welcome to a community that understands.

Past Member: 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!!

clippergirl : Hi Honey and welcome...I had my first ostomy at age 8 and I remember how angry I was when the docs told me that I would have it for the rest of my life...I had UC also and was hemorrhaging large amounts of blood daily. As a child it was unimaginable to me that I would have this awful thing for life...but with the help and understanding of my family and a few good doctors along the way..I learned that I could still have a full and active life...which I did. I became a mother (which amazed everyone) and have three awesome grandchildren..a career that I love and no one ever guess's that I have an ostomy unless I tell them. You will find your peace with your new lifestyle in time and you will be surprised when you realize that it will not be much different than it was before...it may even be better...good luck to you...hang in there.

Shelly2011 : One of the most helpful things that I have found over the past few months that seems to have almost cut mine out completely. I don't drink carbonated beverages, and most importantly, I don't drink with a straw.

bikerboy : welcome honey.you will find everything you ever wanted to know about any ostomy or life related crisis or just general having fun with your bag (like I do ).

Counting My Blessings : Okay, Honey. I'd like to understand why you have stopped doing the things you love. Is it your emotions getting in the way, or is your body keeping you from doing what you want? With my first colostomy (stoma died within a week, and the hole closed up requiring a 2nd colostomy 5 1/2 months later), I didn't want to be around people, didn't want to go anywhere (emotions) but physically, chemotherapy wiped me out and I could hardly go anywhere once I had healed.Now, all those emotions were a result of being made to think I had to put up with that horrible situation. Luckily I changed doctors, had a second colostomy, and everything is wonderful. The bag stays on for 4 - 5 days instead of replacing 3 - 4 times a day. I sometimes forget it's there.I do everything I used to do including swimming every day in the heated community pool. I just don't do as much in a day and everything gets done at a slower pace. But that's not because of the ostomy. Gettin' older, and the chemotherapy cramps my style slightly.The other things which really helped me was a great ENT (??) nurse and reading about ostomates on the Cymed site who liked that product because they could even do triathalons. Well, I've never done one, but it made me realize I could walk the dog daily, go swimming, and get a reclining bike to ride.So make sure your ileostomy is right and then get back into as many activities as you can that will put a bounce back in your step!!from Count Your Blessings

honeybblunt : Hi Counting my Blessings..in answer to your question, probably a bit of both. I still have a large open wound that is taking forever to heal, my fitness levels are rock bottom, i'm fed up of having to rely on friends for the simplest of things, i'm sick of worrying about bag leaks and in fact wound leaks!, and i'm fed up that all of the things i enjoyed doing seem like a lifetime away. Maybe i expect to much too soon, but i got upset today because i've had to ask for help just getting my daughter to schooljust because the new car that was supposed to give me my independence back still isn't ready for collection!! I just want my life back, and i hate feeling so pitiful especially when i read what other people have had to go through, yet still i can't help feeling sorry for myself.

Julz44 : Hi Hun - just wanted to say that I am new to the website too and after the operation, it does feel like somebody has taken the L plates off - Learning to Live Life Again! - you have our support.

Past Member: Honey, before my op i had my last severe UC flare up. I was so weak i couldn't walk and couldn't eat. I went from 14st to 9st in 4 weeks and would have died within a couple of weeks without my op. After my op (ileostomy/pan-procto colectomy)i felt like i had been run over by a bus for about 6 weeks, was having a few bag leakage issues due to my inexperience, plus all the usual self confidence and image issues. Before my illness i played guitar in a rock band, wore my jeans off my arse, and image was everyhing to me.Finally, after the first six weeks or so, i felt myself getting better and things really picked up quickly. I piled the weight back on to the extent that i had to be careful, i learned how to change my bags without worrying about leaks..TOP TIP... warm the plate with a hairdryer and it will mould to your shape and give a really snug fit...Started going out in public and finally realised that nobody needed to know i was an ostomist and that i could start to live a normal life again.It's not all roses, but for me its a million times better than the alternative and with a little time you will realise this and i guarantee you will get your confidence back, just don't expect this to happen overnight!!!

honeybblunt : Hi dickdastardly...i'm intrigued...do you still play in a rock band?, do you still wear your jeans off your arse or have you found another way to wear them that is just as image conscious?...cos i have a real issue with knickers..that is the ones i used to wear vs the granny knickers i have to wear now! My self confidence and image is also important and i find it hard to believe they will ever be the same again, did you regain yours? It's been over 3 months since my op, i had hoped that things would have improved by now. I know i still have problems with open wounds and maybe thats the issue, but i'm scared that when they have healed i may still have a confidence issue.

Past Member: Hi Honey, i gave the giggin up at 28 because a crowded pub is the last place you want to be when you need to make a dash for the toilet! I don't gig anymore, but that has nothing to do with my ileostomy, just other commitments.Fortunately, fashion these days says its cool to wear your t-shirt out, which is handy when you have to wear your jeans a little high,(simon cowell style, lol). These days though, i am happy in whatever is comfy and don't worry too much about my image, although i'm still one cool dude!LOL.Don't know why you have to wear granny knickers though? I had a choice of boxers over or briefs under and stuck with the briefs i wore before.Yes, i did regain my confidence completely, although it took a year or so. In fact,i have more self confidence because i had been ill with UC for 8 years and i knew most of the time i looked rough, something that i don't need to worry about since my op.When you are fully healed it might be time to re-invent your image but comfort should not have to compromise your style. I think that its easier for girls because they can wear a skirt high or a summer dress which is comfy and hides the bag better, in fact i'm thinking of becoming a TV !!!!TC, Dastardly....

Pilgrim : Honey, If I read your post right, I'm hearing what the others are not. That is that after a initial few bouts with UC you were fine. That was me too! Well the first few years were rough but then it all went away (total 17 yrs) If cancer did'nt show up I would have lived with UC just fine. But at that point a total colectomy was just the smartest thing to do to get rid of all disease. Please people.... we don't all suffer for years. Kevin

honeybblunt : Hi Pilgrim....you did read my post right and like you when i was first diagnosed i can a few nasty flare ups but then was symptom free for almost 15 years. It all turned sour in February, a flare up that just went wild, no cancer, but no getting on top of it. I was told my bowel would rupture if i didn't have it out. So it's been really hard going from years of normality...for want of a better word....to this. Sometimes i wake in the night and for a minute i believe it was just a nightmare, doesn't take long before reality kicks in again though.

Quietdreamer28 : Hey honeyblunt!!! Everyone on this site is beyond friendly. I love this site but I also wanted people local to where I live to be avle to coonect to so I did an internet search and found my local UOAA chapter and joined that group. It's a wonderful fun loving group of people that understand what you've gone through. Funny thing about my group is I'm 28 and everyone there is 50 or more years of age. I do have a good ostomate friend that is just a couple years older than myself so her and I are the babies of the group. We love the group and dont care about everyones age because ostomies don't have ages they have stories. You should look into a local UOAA group.

mooza : There Also is a young ostomate association here in australia i was asked to join years ago but i declined years ago i think i did fine they are still going i think its a great thing if people do join in i had No idea when i was young what all these groups were for i thought it was like alcanon hahahah duh hahahah good 4 u Quiet dreamer ..mooza xxxxx....

mooza : honeyb you wear granny knickers really ???? hahah i just dont bother hahahah shhh Dont tell!!mooza plus got a ileo and not wearin nothing over the pouch hell nooooooo chat ya's later xxxx

Carolw : If ever you are feeling down just click onto this site.I have had lots of comfort reading all the bloggs on here.I went in for a small operation that ended up me having to have to have nine trips to thearter and now I live with a permenant colostomy due to my bowel been damaged.Just give yourself time to heel, its not long since you had your surgery,take each day as it comes and dont expect to much of yourself,time is a great heeler and with all the support from this site you know that you are not on your own.Welcome x

nighthawksecurities : Looking for the same hope your still here

LadyElf : Hi Honeybblunt. know what you are going through. Had surgery last Aug. Was hospitalized because of a flair up on my abdomen, they operated, and I had a large drainage hole where my bellybutton is, it took 4 months to heal with an air vac to help with the drainage, and home care nurses coming every three days.. Ended up with an ileostomy. Had to go back this January to have another operation. This time to cut away the infection in the large intestine. Now the ileostomy is permeate and I am having Chemo treatments for 2hrs every 2 weeks. It have been a rough road, and especially at my age of 70. No I am not old, have had a very active life, and by joining an ostomy group here in Ottawa, I am able to overcome the hurdles, and become whole again. Yes I have named my ostomy "Penelope" after the girlfriend of Pepi le Peu. It makes people laugh when they hear noises coming from my ostomy and I say that this is Penelope giving her 2 cents in. Chin up, you will be able to do many things once all is healed. We are all her to help.