I will admit before I had an ostomy, I didn’t know anything except you had a bag of poop attached to you. After living with an ostomy for 15 months, I thought it was time to attack some myths. Here are some that I had, and also some that I got when I asked my friends what they knew about ostomies before they knew me.
Myth #1 – Jackie No Butt
One of my friends has a husband who doesn’t really know me all that well. When she refered to me in conversation, one time he asked her “Is that the one without a butt?”. People with ostomies most often still have a butt and a butt hole. Sometimes when it becomes a permanent ostomy, the butt will get sewn closed to prevent infection.
Myth #2 – Ostomies = Becoming a Nun.
Sex is a HUGE concern for people with ostomies or talking about ostomies. You can, and should still have sex if you have an ostomy. There are ways to cover it if you think you need to, and ways to avoid it being in the way in any shape or form. I promise you, if you’re even remotely interested in the sex you’re having, it won’t bother you. I’ve got some tips/tricks about all of this. Let me know if you need some advice.
Myth # 3 – People with ostomies are fat
Yup they sure are. They are also skinny, and tall and short and male and female. Old and young, rich and poor. Believe it or not ostomies and the people who have them come in all shapes and sizes. Also people with ostomies are not just ugly freaks of nature. I have found MANY obscenely beautiful people who have ostomies.
Myth #4 – Ostomies are permanent
Many ostomies are just temporary. Sometimes they are later changed to be permanent and sometimes they start out permanent. But just remember they can also be very temporary.
Myth # 5 – Ostomy = Colostomy
Actually there are 3 kinds of ostomies. This is actually something I didn’t know in the beginning, if you read my really early blog entries I say “colostomy” all the time when I had no idea what I was talking about. Even trained nurses don’t know the difference sometimes. A colostomy is made from the large intestine or colon. An ileostomy is made from part of the small bowel when the whole colon is removed. A urostomy is made when there are bladder issues. Yes, there are people in the world who wear two bags.
Myth #6 – You poop all over yourself constantly
While you can get a leak from time to time, this is pretty false. If you can find the right appliance to use and use it correctly you can prevent poop from flying everywhere.
Myth #7 – People with ostomies smell like poop
Even people with ostomies worry about this. I know I did. I was always afraid that if I smelled poop, the whole world smelled poop. Truth is we are better at smelling it because we are aware of it, however no, we do not just ooze poop smell. Yes it can smell when you change your bag, or empty it, but poop smell does not permeate the air you occupy.
Myth #8 – Only people with cancer have ostomies
Many people who have had colon cancer do end up with ostomies, both colostomies and ileostomies. However, an ostomy can be a result of IBD, a severe accident, or a myriad of other causes.
Myth #9 – When you say “ostomy” people know what you’re talking about
So many of my friends had to google “ostomy” when I told them. People really have no idea. Awareness is huge people, telling your stories will help bring acceptance.
Myth #10 – I don’t know anyone with an ostomy
We are sneaky little MFers. Trust me if we don’t want you to know, you won’t. I once had a friend ask me ” Are you wearing your bag?”, (as if I had a choice). Ostomies are easily hid and concealed. Before I had an ostomy I was always shocked when I met someone who had an one because they didn’t have a sign on their head or a swarm of flys around their poop stench. We look just like you do.
Myth # 11 – Ostomy bags are huge
When you start talking about your “bag” people can have lots of misconceptions of what your bag looks like. Most people really have no clue what they look like and how complex they can actually get. I wore midi bags which were actually very small and relatively easy to hide.
Myth #12 – Having an ostomy is like being disabled
While there are really trying times, and emotional let downs, living with an ostomy is just living. People with ostomies climb mountains, jump out of planes, serve in the military, go swimming and so on. It may take more planning, and extra tape, but we can do it.
Myth #13 – We are all totally ok with our ostomy
There is a level of acceptance that comes with having an ostomy. Eventually most people see that it is a life saving measure and become thankful for it, but that doesn’t mean that we don’t struggle with it from time to time. Some people are lucky enough to be grateful for their ostomies from day one, many are not.
Above all, most people I asked said that they didn’t know a single thing about ostomies. I know it can be very difficult to be open about your ostomy to those people in your life. But most people will be more than willing to learn if you’re willing to teach.
August 1, 2011 at 12:55 am
As always, very educational and very well put.
August 1, 2011 at 4:48 pm
Joanna put it very well. You were very educational. I did know some of it but you informed me more. Thanks for putting it in plain English.
August 3, 2011 at 1:06 am
I wanted to cry and even laugh at some of the information. I had many questions and didn’t know how to ask them. Your blog was
exactly direct and yet easy to understand. I liked how it was explained that this has saved the lives of many people and however inconvenient it may be, it’s better that you are here enjoying life, living life and sharing experiences with the rest of us.
August 20, 2011 at 3:13 pm
THanks. I have a new friend, _____, who had one for 14 years (starting at age 5) and then they took it away. She says it was a real mind-bender to deal with at a young age and that it has warped her sense of herself socially in a great way…but…she has ridden her bike from Canada to the tip of South America- ALONE- and now lives a very consciously ecological life in the woods and seems very happy at age 29. 🙂
September 6, 2011 at 7:52 am
anyone that reads this with an ostomy of any kind please email me at midnightrydah@hotmail.com i havent had the chance to sign up and become a member of any of these sites not even a single forum so maybe if some fellow ostomates specially young ones would contact me we could get in touch and i will have somone i can talk to and can answer any questions that i may have. im 23 i live in vancouvr canada and have had crohns for about 10 years and had my illeostomy surgery about 8 months ago and im still adjusting ive just been so sick and in and out of hospitals that i havent really had much time on the computer to do any research at all.. thanks!!! ps i hope this posts without me being a member lol 🙂
November 22, 2011 at 1:27 am
Thanks, I’ve been living with mine since this past February. 3 Surgeries at the Mayo Clinic (Stage 4 Colon Cancer…as if that diagnosis wasn’t enough at age 46) The 3rd surgery was emergency..and when the Dr. told me..either a colostomy or death…I weighed my options. There is somewhat of a stigma, but it’s not like I had a choice. Hey, I know what I’ll do today. Waiting on the results of my latest CT SCAN and hopefully getting a good prognosis, because I’m scheduled for a reversal, and I so want that. Anyway, the CT nurse was telling me her fiance had one because of Chrone’s disease. It’s way more common than most people know, and some people I know who know I have it, but aren’t real close came up to me the other day and said..so you had the operation? Yeah, we can hide it. The worst time for me was when it did leak in public and I thought..yep I’ll just join a nunnery now. But, what are you going to do…life throws you curveballs. Wish me luck on the reversal. And, thanks, for the blog.
December 22, 2011 at 10:40 am
Hey I love the article. I am a 21 year old male with crohns disease. I had surgery for my illeostomy placed in October. It’s only temporary. I feel like my life is on hold. I love to swim and have my shirt off. I know you can do all those things still with the ostomy. I am not ashamed of my bag at all, all my friends know and support me. My concern is sex? How can you hide it? I need tips? How to let a girl know with her freaking out. Anyone with tips and how to cover the bag better with clothing? Email me: jharaywoodard@gmail.com thank.
January 1, 2012 at 7:50 pm
Did you check out my sex info blog post? Find anything helpful or useful? If not! Let me know and I will find someone to answer your questions!
January 28, 2012 at 4:28 pm
Jackie, PLEASE get in touch with me. But, first read linebyline(WP) by omegetymon. / tananman@gmail.com
I’m working on an innovation to help raise fundings for diseases and cancers. Would you help to complete this task? ( Knowledges and such.)
I do this, in part, for a childhood friend who went through this in our Sophomore year of HIGH SCHOOL… Barb’s no longer with us, but , you know…
September 3, 2012 at 9:54 pm
My father-in-law has had a colostomy since his twenties. We never really talked about it until this past weekend. He shared the most amazing, heart-warming story about the days leading up to his first procedure. I wrote about it in my blog this week. It’s worth a read for anyone dealing with this emotionally difficult procedure… kateworthromance.blogspot.com/
December 14, 2012 at 3:59 am
Thank you so much for this post. My mum had an ostomy recently and are really struggling with it emotionally. I think this will help her.
January 2, 2013 at 8:28 am
My husband got his ileostomy in October at this time he will not even entertain having sex because of the bag. He says it will be hanging down right in the way. Do you know of products for men to use during intimacy? To help ease this issue so we can bring the romance back. Thanks so much.
January 24, 2013 at 2:13 am
I just wanted to add one additional type of ostomy to Myth #5 – both of our kids (and several others with the liver disease PFIC – Progressive Familial Intrahepatic Cholestasis) have another type of ostomy that is not considered a colostomy, ileostomy, or a urostomy. People with PFIC have livers which don’t process bile correctly and so in addition to ultimately causing cirrhosis and liver failure, the backed-up bile causes debilitating itchiness. So, our kids have what’s called a cholecystojejunostomy – it is a stoma that drains bile from their gall bladder into the bag so the liver gets a reprieve and the itchiness is (hopefully) reduced.
Just one more ostomy that people should be aware of… 🙂 Thanks for everything you do!
January 24, 2013 at 10:59 pm
I’ve had an ileostomy since September 12, hoping my reversal is next week but its already been postponed once. I wish I knew someone when I first got it to help with things, I’ve learnt alot though. I bought plain cami/vest tops to wear under all my clothes to keel the back flat, can also tuck it into your trousers with it less likely to come untucked. The tape is a life saver, if you have a leak, I had many early on before I knew how to tell, the tape is a life line, but if you feel itching or stinging, you probably have the beginnings of a leak so keep an eye or change it. Speak to your stoma nurse because I decided I was fine then it shrunk, I now cut all my bags myself, took me a good few mishaps before I got it right, it is possible but nurses generally know better. Adhesive remover spray, lifesaver. Aloe powder, again life saver. Chew your food, I avoid any vegetable that isn’t boiled, carrots, peas and sweet corn I avoid completely. Tomatoes burn, maybe that’s just me? Blockages will happen, keep calm and move about! If it lasts over 5 hours, ring the hospital/nurse. I can’t give you much on the sex side because I’ve been a tad self conscious, always with a top on and the bag folded into itself so it didn’t flap about, I use coloplast minis that are non see through. The mahussive see through bags you get in hospital are not what you have to stick with! Although I’d take some see through ones home to begin with to avoid panics that your stoma has stopped completely etc, the beginning was scary but it gets better! Im 21 the majority of the people I know have no idea and they won’t unless I tell them. I had emergency surgery so I wasn’t prepared but it has been a steep learning curve and taught me alot. If my crohns did get worse again one day, I would consider opting for a stoma again myself. Hold on in there people!
January 27, 2013 at 5:29 pm
Thank you for this! I have a friend who had to have a colostomy bag in place, due to colon cancer. He has since had it reversed (2.5 weeks ago) but he is experiencing some complications. I know that he was VERY insecure about it and said that if he had to live with it forever, he would rather die. I totally accepted it and loved him, regardless of whether he had the bag in place or not. I wish he could have known that when I said that, I meant it. He’s an amazing person and I just want him to know that if he has to have the colostomy bag put back in place, permanently, that it won’t change how I feel about him and how beautiful he is. This was inspiring and thank you once again for sharing. ❤
January 27, 2013 at 9:53 pm
I have had an ostomy since I was 3, and now I am 16. As a result, I do not remember the struggle very much, so I give you so much credit for going through this, and still being optimistic. You are so right- it is not a disability at all! I am a varsity swimmer and people never notice! Very inspiring, thank you!
February 28, 2013 at 7:29 pm
I think the things about istomies are very good and full of information. My husband is going to have a illeostomy. I feel better since reading these articles and I even had my husband read them.
March 28, 2013 at 8:11 pm
Hello. My father has an colostomy. It was a tough process for him to go through. And due to many facts like you say, he made and patent this system to solve the issue of disposing the bag. It also has a odor neutralizer. Sorry for my english, I’m from Argentina. Please search us on Facebook for more information. its Laboratorios HR. Thank you and good luck with your new life!!
April 2, 2013 at 9:49 pm
Hi
My ex- partner had his emergency ileostomy in early January after an obstruction in his small intestine. He is still in hospital 3 months later as his landlord evicted him for having rent arrears, he has a huge amount to deal with and i feel for him totally and although he is my ex, i have stuck by him whilst other friends have developed ‘compassion fatigue’ and disappeared.
I would like to know, for his sake, if there is anything which he can wear to hold his bag in place during intimate moments with any future girlfriends. I know this will worry him in the future although currently he is dealing with his other issues. he is due to have a reversal so it is temporary. He may, however, need to stay on TPN for the rest of his life…he is 57 yrs old -Thankyou
April 8, 2013 at 6:01 pm
Hi there, I’m 24 and I was diagnosed with Crohn’s Disease almost 21 years ago. Since I was 4, I’ve had numerous procedures and surgeries (lost count after 15) and 3 ostomies. I had a flair-up 4 years ago and received my 3rd ileostomy, and this one is permanent. All throughout my life it’s been a struggle trying to hide my secret from the general public. Things really got bad through high school; meeting girls was a nightmare because I always had it in my head that I’d eventually need to tell her sooner or later, preferably before things get too physical. It never got any easier either. I’m happy to say I recently met a wonderful girl online and we’re both really into each other, but we’ve only been texting and calling each other and haven’t met up yet. We’re hanging out this Saturday night, and I’m sure there’s probably gonna be some cuddling and stuff going on, and if we really click, it might go beyond that.Right now I’m not really sure if I should wait until I see her in person to tell her, or tell her over the phone. I don’t get a shallow vibe from her; she told me she’s genuinely attracted to my personality and that she’s mostly physically attracted by a guy’s face anyway….But on the other hand, she’s absolutely stunning and everything a guy could want in a girl, and could easily get anyone she wants- I’m kinda worried that when I tell her in person on Saturday, she’ll get mad for not being totally up front from the beginning or think that I’m wasting her time and leave. It’s not gonna be easy, but this article definitely helps, thank you 🙂
April 15, 2013 at 8:44 pm
I think the easy way out is to buy a support belt for pregnant woman ,they are soft and wide. I’ve used one quite often.You can also buy a belt made for us,it is called Celebration ostomy support belt.. One of my first invention was two pairs of shorts, All I needed was the elastic and about three inches of cloth .glued the shorts together ,it keeps the pouch in place ,My biggest enemy at our house in my wife”s little Boston terrier, if she gets a chance she will attack the pouch,.now that is nerve wracking We have one of the best Ostomy Clinic in the country,it only took three visits to get me down the right path.
I hope this helps. Thanks Dale
.
April 16, 2013 at 11:03 pm
Jackie! I loved your article and you are sooo pretty. Thank you for such an informative site! God bless you and keep you well!
June 3, 2013 at 8:39 pm
I help take care of my grandfather often and help with his colostomy. I actually didn’t know all of the different types of ostomies that are out there. I thought they were all colostomies.
One thing that has helped me out with the smell were these odor masks from amazon: http://www.amazon.com/Disposable-Odor-Mask-50-Count/dp/B00D5YHSKI/ref=sr_1_4?ie=UTF8&qid=1370291208&sr=8-4&keywords=disposable+odor+mask. They don’t take the smell completely away, but it helps cover it up a lot.
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August 15, 2013 at 11:45 pm
Myth #7 isn’t a myth for me. I have a colostomy and even though I’m clean and fit, I always smell like waste. I work at home and hide from people. I seem to be the only one though…
August 19, 2013 at 12:50 pm
Hello I found this information very useful and helpfull. I’m still a hot mess in even trying to decide to consult a GI doctor. I have MS and it has become harder to keep up with forever bowel habits. My standing too has become an issue. Well wish me luck and thank you. Dave
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September 20, 2013 at 5:25 am
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October 3, 2013 at 10:58 pm
I just got an ileostomy 5 weeks ago and I was told there is a place in Chilliwack bc that makes ostomy belts for men women and children and lace ones for women too 🙂 im going to order my first one this week. ive heared so many amazing things about them. the website is http://www.joeies.com and the inventor was an ostomate too
October 15, 2013 at 3:47 pm
I have had a colostomy now for one year. I have run into some issues with my belly being so big and round, I have developed a huge hernia under my stoma now I look like I have a third giant boob on my stomach. Becuase of these issues I have not been able to hide my bag under clothes, I am always afraid of going into shopping places becuase I look like I’ve stolen something. Please if anyone has suggestions let me know. I have tried wearing more tshirts or wraps and they really don’t help cover very much.
October 22, 2013 at 9:00 pm
I just got a colostomy on 8-14 because of colorectal cancer. I’m having a hard time adjusting. I’m a 30 year old married mom of two and any help would be very much appreciated. Thanks. Faerytale1982@yahoo.com
December 21, 2013 at 2:14 am
I,ve had one since 1997 and its never got in my way, stop all this crap and just get on with it, if you have one your loved one,s will not take any notice of it and continue to love you all the more. my wife of 36 years still thinks i,m her only man. how lucky is that???
January 13, 2014 at 6:56 am
Thanks for letting people out there know what we have. I am a military soldier and will keep serving till my retirement. I can do everything i used to do, even jump out of plane and fight for our freedom. People its no big deal, we are for the most part happy to be alive and live life to the fullest. Dating is a bit challengeing Everything go’s great until they find out. Ladies, guys, give us a chance, we are so easy to talk to. Because of what we went threw, we don’t judge we have no room for it, and sex well we can do it just fine you wont even know we have a bag, i promise. Thank you for your time
February 2, 2014 at 5:04 pm
I am waiting to have a permanent colostomy for faecal incontinence due to nerve damage.My life is not worth living at the moment as I rarely leave the house and I am losing touch with friends and family.I am hoping that this surgery will give me back my life…..Will it?
February 9, 2014 at 10:51 am
I had an ostomy when i was 3,but my struggle is i just dont know how to get hold of ostomy bags am suffering at school,and i hardly never had surgery, i’m frm R.S.A in limpopo
March 16, 2014 at 12:22 am
How does someone ‘serve in the military’? Can you even join with an ostomy?
May 23, 2014 at 9:20 am
I would like some tips on intimacy with an ileostomate male. …I’m his first serious girlfriend and I want to be sure that our intimacy is both pleasurable and takes into account minimal pressure/friction on his pouch. …
July 13, 2014 at 4:03 am
I am 58 yr old female, married for 40 years and have had my ileostomy since 1993. I was so depressed at first, but then my hubby and kids said,” we want our mom/wife back!” So I put my big girl panties on and got back to life! They sometimes forget I even have it….don’t get me wrong, I still hate it most days, but I NEVER want to be that sick again! I did not have cancer or anything, it just ceased to function form scar tissue. And if you get a blockage, you can use an enema..just be careful.
July 29, 2014 at 7:42 am
@sue,
to answer your question, YES you will get your life back (from my own experience anyway).
sorry for the long winded story, but this is the first time ive written it down, boy i didnt MEAN to write so much.
Im a 45 yr old male, and i live in Australia.
i had an ileostomy due to severe UC, on june 23rd, 2014.
i had only been diagnosed with UC November 2013, so it was a rough 6 months for me
I ate bacon and eggs for breakfast the VERY NEXT DAY after the surgery (i could actually eat solids 5 hrs after surgery but felt a little queasy from the drugs etc, so didnt push my luck that night.) For lunch that day i had soup, a bread roll, roast beef, gravy & veges, and desert and ice cream – i couldnt remember feeling so full in a LONG time – and i was IN NO PAIN, didnt rush to the toilet, and enjoyed it to the max !!!
The docs sent the colon away to a lab, and they confirmed it was SEVERE and HAD to come out. The surgeon and the GI doc said it would literally be the death of me if i tried to keep my colon and battle on.
I went thru all the drugs, finishing on 25mg a week of methotrexate and had 3 shots of infliximab(remicade).
The only thing that helped control the symptoms was steroids (prednisolone). I was on up to 50 mg of pred a day, and had 3 visits to hospital where they put me on the equivalent of 100mg a day. The docs warned me i had had more pred than was healthy – WAY more. One doc said he equated it to about 3 years worth of pred in 6 months, one said it was a lifetimes worth – and i could expect some/severe problems in my old age, like arthritis etc.
in my final weeks, as the docs weaned me off the pred (again) to see if the methotrexate/infliximab worked, i literally had to stay within 15 metres of a toilet. i stayed at home, and the family operated without me. I could not eat much, as when i ate, i then had to run to the toilet, and the PAIN, OMG, it was BAD. If i drank coffee, i had to run again. It was getting so that i just didnt WANT to eat, even tho i was SOOOO hungry. For about the last week of it i lived on cup-a-soup and white bread toast, and a very small meal at night (which sent me to the toilet, but i was SOOOO hungry i couldnt NOT eat.)
it got so bad, that as i have a shed about 30 metres from the house, if i wanted to go work in the shed, i had to have an emergency toilet set up in there, cos when i had to go, I HAD TO GO.
i realised that this was no kind of life. When the docs told me (after another stay in hospital) that my ONLY solution was an ileostomy, at least i was prepared – my GI doc had warned me time and again that the infliximab was my last hope (and 50% of those in australia who try it still have to get the surgery within 12 months) – so at least i was forewarned.
My lowest point was the week they sent me home to wait for the surgery – i wasnt in a good place mentally. I was on anti depression meds.
I am a squeamish person. At the start of the journey i couldnt even stand looking at them taking a blood sample. My personal worry was that i wouldnt be able to look after the stoma myself, i actually told my wife i didnt think id be able to live with myself – but my darling wife assured me she could help me with whatever.
To my amazement, I have been able to look after myself all by myself – only needing my wife to help shave my belly below my stoma (im a bit fat, and cant see under it, lol)
I had only one episode where i felt faint mid bag change and had to lie down on the bathroom floor – but i put that down to low blood sugar (hadnt eaten that day yet) and was feeling a little odd – i have learned to change my bag when im feeling good.
now, 5 weeks on from the surgery, i am nearly ready to return to my work, as a lawnmowing contractor.
I can eat what i want (within reason), drink what i want (on methotrexate i wasn’t supposed to drink alcohol)
I can go out with my family, and dont have to worry about ALWAYS KNOWING WHERE the nearest toilet was at all times, i can eat at restaurants with them, whatever.
We even had nachos this week – my sons favourite – he was missing out all this time cos i couldnt eat it. It was so yummy !!!
Coffee used to send me running to the toilet, in pain – it now makes my output thin, but a banana mostly makes up for that, so ive learned to eat more bananas, especially when i have a coffee. (im trying to cut down on coffee, but cant give it up – SERIOUSLY)
I can get the reversal in about 2 months, IF i lose 10 kilograms – but i am putting that on hold, we are just about to enter our peak lawn mowing season here, and i dont want to have a couple months off, then have to “train” the pouch – theres no toilets available most places i work (people not home).
I will at least wait until winter to go down that path – altho i am not comfortable with the idea of the j-pouch yet, and have to do more research and make a decision whether i’ll even GET it done in the short term, or perhaps wait a while longer – really the maintenance of the stoma, and carrying the bag doesnt worry me all that much.
im also ordering a stoma guard from ostomyresolutions (jackie, hope its ok to link?) http://www.ostomyresolutions.com/#!features-product-features/c1qjq
and my stomal therapy nurse (here theyre called stn’s, not wocn’s !!) helped me with ordering a support belt too.
so within a couple weeks, i hope to be at full strength, back at work with my support belt and guard, and enjoying life to the max.
thanks to jackie for this blog, i laughed a lot, learned some things – especially the tip about the tube tops, im gonna go shopping with my wife tomorrow for some – i was looking for this exact type of thing, i dont like my bag appearing under the edge of my shirt (feel funny around my kids, always have to check my tshirt is pulled down low), and i dont like to tuck it in my pants (well i havent yet, may have to for work, we’ll see) – but thanks for the tube top tip.
for me, the ileostomy was a CURE, and put an end to the pain filled travesty that my life had become.
Dont fear the operation, it will make your life BETTER.
Thanks very much
Brian
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August 8, 2014 at 3:22 pm
In an ideal world, people with ostomies only have them temporarily, are thin, odor-free, sexually fulfilled, never covered with bodlily fluids or sporting unsightly bulges. But till we reach paradise we gotta’ live in the real world, and too darn many of us have the stinking, leaky, unsightly, romance-killing variety of bag, and cheesy happytalk like this article only drives in the point that specimens like us are worthless and disgusting. My ostomy won’t stop issuing loud, disgusting fart sounds and when I complain to my stoma nurse about it she evades the subject by saying “well everybody’s stomach growls.” Excuse me, but a growling stomach is NOT a fart! I had to move out of a high rise apartment when my neighbors threatened to beat me up for stinking up the elevator. And I can’t even get a prostitute to touch me. Don’t tell me to “seek help” All they want to do is feed me psychiatric drugs to shut me up because they have NO practical solutions to a real dilemma. I ought to know. I’ve had this cursed thing for 20 years, it only gets worse and I won’t pretend otherwise for the sake of propriety. And I especially won’t shut my trap about how giving up smoking was what made me sick to begin with. Yeah, the fact that UC is 2-3 times more prevalent among ex-smokers than it is among the general population is the very LAST thing Therapeutically Correct America wants to hear. HA! You should see them squirm every time I mention it.
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October 3, 2014 at 2:01 am
I have this question … I was thinking and I’m sorry I don’t mean to offend…but I wonder…Do people with ostomies have an urge to go defecate like people with no ostomies, or do that urge completely stops? Thank You !
October 3, 2014 at 3:02 am
We still have the urge..like phantom pains for someone missing a limb.
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January 13, 2015 at 1:35 am
Hi,
I just found your page and it was really informative to read. I’m a new ostomate and had my ileostomy performed on Dec 19, 2014. Can you please give me the link to your site so I can continually refer back to it in case I have some questions… as I currently have tons? I tried contacting by email my local uooa rep, but still have not heard back from her yet.
January 26, 2015 at 5:16 pm
Hi
Like you I have just found the page and it opened my eyes too.
I have bowel and bladder problems after being in a road traffic accident with spinal injury.
I have been using self administered catheters for my bladder and irrigation for my bowel and am really fed up with it.
I know nothing about a Urostomy, but am considering talking about the process and if it might draw a line for me, does anyone have any advice ?
Jules
March 20, 2015 at 4:08 am
Hi there, I am hoping for some advice. I had my colostomy in february. It was an emergency op and I woke up with a bag after the eight hour op. I had infections, was terrified by hallucinations and am still having flash backs nearly two months later. But the main problem is my OCD and keeping my bag on when there s the tiniest bit of faeces in it. I am changing my bag three times a day sometimes more and despite my stoma nurse advice to persevere and leave it on, I feel dirty and smelly and itchy, and even though my skin gets very sore I cannot stop doing it. Don’t get me wrong I get it when the medical guys tell me I’m lucky to be alive. I love life so why can’t I be more accepting like other folk and be grateful and get on with it. Can u guys offer any advice xxx
August 27, 2015 at 8:48 pm
I have a new fiance who understands my illeostomy.But when I try to male love to her I find the bag impedes me and my penus is very soft.She says not to worry as she still loved me. But o feel inadequate.What can I do.I sometimes cry and feel she deserves someone else. Dave
September 19, 2015 at 3:42 pm
Just getting used to it but thank God for it considering my mobility issues today.
October 23, 2015 at 6:15 pm
Great article/site, appreciate the humour and folk who live it all. I had a sore tummy from Xmas 2014, on and off until April this year when it didn’t go away, after 6 days I went to A&E and basically woke up 7 days later, very confused and afraid, like some in vivo experiment with a bag. Was UC very bad in lower colon, which burst in hospital and I had two days on the theatre slab, 3 on a ventilator.
Anyway, I was not enamoured, but immediately accepted my wee rose bud and its bubble, better than being dead. I lost 17 kg in 10 days and looked like a hunted, starved mouse, in hospital for 22 days. First 4 weeks home were a nightmare, weak as a lamb, paranoid about that thing sticking out my stomach or any innard sensations, very very vulnerable feeling. A low time certainly, with my only ever bag disasters way back then just to cheer me up!
However, I’m 6 months down the line next week, put the weight back on, physically active, getting fitter – its okay actually. Far from how I imagined life might be, but okay. I was told mine was permanent, yet they left about 25cm at the top which was healthy and have since said labs said it was UC clear so they can reverse. Here we are.
I can only reinforce the original article, life’s pretty normal and just get on with it, most folk would never know and what’s the alternative. I do get wee quirks nonetheless – I keep feeling my thigh to be all wet – aw naw, bag’s burst/popped off – but its always fine, thankfully just imagined. Be well people.
Avant!
January 2, 2016 at 2:50 am
So true I went threw this with my Best friend and then a few other friends and then my husband had an Illistomy…Of course he had it removed but he now Is having a lot of Issues after we return from the Dr. I will add to your page I feel this Is very Important Kim……
March 16, 2016 at 10:24 am
Kim, you say, “Of course he had it removed”. For many, including me, it’s permanent. Although I enjoy reading about people with ileostomy running marathons and sky diving, the reality is many of us live in constant pain and discomfort. Yes I’m glad to be alive. Yes I would be dead without the surgery. But the truth is for some people an ileostomy is a nightmare. If you have one and you love it, congratulations to you and good luck.
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April 30, 2016 at 3:35 pm
Yes, I am scared to get my perm. Colosomy due to rectal cancer but I have no choise. I do wonder what it will be like. Will I need a different wardrobe? Can I sleep on it as I am a side sleeper. Can I ride my bike again? Will it be painful?
May 3, 2016 at 11:38 am
Hi Barbara,
More than likely you will not need a new wardrobe unless you want one! There were things that I wore, like maternity jeans, that made my life easier but I wasn’t forced to get new clothes. I just wanted to. You will be able to sleep on your side with no problem, sometimes you can even sleep on your stomach you just have to prop yourself up with a leg. You will ABSOLUTELY be able to ride your bike and do ANYTHING else you want. An ostomy will not limit your activity level. I promise! The ostomy itself is not painful. Surgery can be painful but living with an ostomy is not painful. Good luck on your surgery. Keep me posted! Don’t be scared. This ostomy is a life saver for you, and will enable you to do so many things!
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