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Stoma Support Group

Thanks Anna its still painful but bareable not taking painkillers as often. I still can't sit for long on it. The infection did knock me for 6 that was a couple of weeks after op. how you doing?
 
Dear All!!!
Very happy to have a found a place with fellow Ostomy friends. I'm based in the UK and I have found it very tough to link up with people that have been through similar experiences to me.

I'm a Crohn's sufferer...recently diagnosed last year. I've had two major ops this year already and hoping that I will get a reversal soon....although life is actually so much better than before having the stoma.

Lot's of love,

Zack.
 
Hi Zackattack! I'm a Crohn's sufferer too. I've been dealing with it for 18 yrs now. This disease is a pain intthe rear....literally! Lol. But I'm just now planning on having my surgery for the first time. They plan on giving me a stoma as well. Although, I'm now comfortable w my decision. I can't help but to feel relieved everytime I hear that when a person has been suffering then feel better after surgery it gives me hope. Im glad ur feeling much better. And welcome to the forum! :)
 
Wow, this forum actually works. It's my first time writing in any forum at all. Yes, the surgery will do you good. At first emotionally it can be a bit of a roller coaster, but when you get the hang of things your level of life improves greatly.

I had my surgery nearly three months ago and I can pretty much eat anything, drink anything, and do most exercises now. So you will be absolutely fine. At the beginning I had to go through a million different types of bags and products but I've finally figured out the best/safest combination. (The secret is adhesive paste!!!!!!) Just bear that one in mind.

Anyways, thanks for the welcome and a pleasure to make all of your acquaintances!

Much love,
Zack.
 
Yes, this forum does actually work! Lol. I wouldn't be as comfortable as I am now w my surgery if it wasn't for this forum! Hearing pols success stories and the amount of support I get my way it really is amazing. But thank you for the advise I will keep that one in mind! :)
 
Welcome, Zack!

I hope you will find as much comfort here as I have. I started off here thinking I would never need a bag and about a year later found myself making the decision to have one....and am LOVING it! It's wonderful that you have had a success with yours and are getting ready for reversal. Even after reversal, you will always be one of us---one of the cool kids! Please feel free to share your experience and any tips or tricks you have that will help out the next newbie stoma owner.
 

annawato

Moderator
Staff member
Welcome Zack, Yes we are very lucky to have such a great group of supportive and fun people here. Feel free to contribute in any way, or ask any questions, whatever.
What is the name of the adhesive paste you use? One of our fellow ostomates is planning to climb My Kilimanjaro and is having trouble with leaks - i'm pretty sure he is fromthe UK too.
 
hey Zackattack,
this forum is the dogs danglies.....ive sufferd for 7 years,had all the meds they could give,only thing that worked was prednisolone steriods which due to years on them caused Osteopenia,had my op 3 weeks ago and my biggest problem was the stitches in my rear end,caused me more pain sitting down that the stomach wound which was from bits to belly button,as soon as the stitched were removed i was sitting down pain free,albiet a bit numb after a few hours,but just talking with fellow osties is a big bonus,keeps you sane as no matter what your family say they will never really know what you go through,but i do have a good bit of banter with family and friends,the biggest laugh in hospital was when my wife read the book from dansac and seen a bit about Phantom rectum,my mates have renamed me that name and told me to start a Facebook page in honour haha
hope you find some peace of mind here the way i have.....
 
Dear All!!!

I am in need of a tiny bit of help.

I have just been offered a dream job in Mexico City (currently I'm located in London). I had my last surgery 4 months ago and since then I've been feeling absolutely great.

This is truly a once in lifetime opportunity as I'm only 27 and this job would set me up in a great way.

I am worried about my crohns coming back viciously. I currently have a temporary ileostomy and my thought plan was to get a good insurance before I go, and talk it over with my surgeon. The contract is for 2 years, so after that I would head back to London and perhaps get the reversal.

Has anyone out there had an ileostomy plus crohns for a fair amount of time? Have you had many problems after your surgery?

I appreciate any comments and truly hope you are well and happy. I have decided to get back in control of my life....although it is verrrry scary.

Much love and peace.

Zack.
 
hey Zackattack,
this forum is the dogs danglies.....ive sufferd for 7 years,had all the meds they could give,only thing that worked was prednisolone steriods which due to years on them caused Osteopenia,had my op 3 weeks ago and my biggest problem was the stitches in my rear end,caused me more pain sitting down that the stomach wound which was from bits to belly button,as soon as the stitched were removed i was sitting down pain free,albiet a bit numb after a few hours,but just talking with fellow osties is a big bonus,keeps you sane as no matter what your family say they will never really know what you go through,but i do have a good bit of banter with family and friends,the biggest laugh in hospital was when my wife read the book from dansac and seen a bit about Phantom rectum,my mates have renamed me that name and told me to start a Facebook page in honour haha
hope you find some peace of mind here the way i have.....
The dogs danglies....love it. A true Scott! My mother is from good old Dalry in Ayrshire. Yes, it is a relief to have a place to turn. Here in a london I have't met anyone with my wonderful toilet capabilities. :)

I was pretty weak just after my surgery but that soon changed when I realised that I could eat pretty much anything. I hope you're doing well and getting stronger by the day!

Peace.

Zack.
 
hey Zack,i know Dalry well.my uncle lives just doon the road in Kilwinning.aye eating pretty much anything helps loads as the light bites diet sucks monkey butts....

Im getting on pretty well,been out on my bike a few times now and done average of 30km per ride,Mountain biking as well,so its been a fair test of my progress,its been a long time since i was able to eat before or during a cycle which is a big bonus,so all in all 5weeks after surgery im well on the road to recovery.

Hope the new job works out ok,drink plenty tequila and yer sorted haha
 
Epic man. my gran is living in Stevenston now. Nothing like a bag chips by the smelly beach in Largs. :)
For me my health has just been getting better and better since the op so for you no doubt the same will happen. I read all this stuff about watching how much water I drank and blah di blah and was almost scared to touch the stuff. I then realised I could drink and eat as my as liked...and everything became awesome.

Anyways man, take care! Let me know how things go.

Peace.
 
haha Largs for Nardinis icecream...aye the water thing is a bugger,tell me i need to drink at least 2 ltrs,i feckin hate the stuff,then realise its fluids so just drink isotonic drinks instead,its a god send to be able to eat and not worry about p1ss1n out my arse after it,or bolting to the loo....fitness will come soon enough,few weeks of cycling and i'll be cruising...

take it easy mate,ever up in the bonny land and give me a shout,

craig
 

annawato

Moderator
Staff member
Hi Zack, the job sounds wonderful and you shouldn't let your crohn's stop you from doing it. My first stoma I had no trouble with my crohn's while i had it and I had it for a year. After I got it reversed the crohn's returned pretty quickly and pretty viciously so I ended up with another stoma. Stoma's won't prevent crohn's from attacking the bowel upstream but they do seem to lower the chances of it happening. It depends on what section of your bowel is mainly affected by the crohn's. If you have bottom problems then the stoma will definitely help. If you get it in the small intestine then it could recur. My Gi said that when you are reconnected the join is like creating another terminal ileum so the crohn's returns there, however it doesn't usually recur as quickly as mine did. Keeping the stoma will lower the chances of a recurrence while you are away.
I guess the worst that could happen is that you have to get on a plane and fly back to London if you get a bad flare up. So good insurance will be essential.
Have a fabulous time in Mexico. When do you go? And what is the job if you don't mind me asking? You'll have to tell us all about the whole experience.
 

nogutsnoglory

Moderator
Didn't even realize we had this support group so now I joined.

I have issues with the wafer hurting and stretching the skin when I lay flat or walk around. Is this just a new fact of life I need to get used to?
 

annawato

Moderator
Staff member
Hmm. I dont find my wafer uncomfortable at all. What position are you in when you change? Do you need to lift your tummy up to apply your wafer?
Maybe I've just forgotten what it feels like in the beginning.
:heart: anna
 

annawato

Moderator
Staff member
I think sitting up would be best as the is the way you stomach will be most of the time. I change mine sitting on the toilet so I can drop the copious amounts of toilet paper I use to catch drips right in to it.
You mentioned in another post that the bottom of the flange sits on your pubic hair. Maybe this is causing the problem?
You could also find that a softer flange would work better? Welland do one called flair active curvex that moulds to body shapes better. Also some flanges have a tape border that you may find more comfortable. I'm not sure which brand but someone on here is sure to know - they come in two piece too I think.
 
Hi Anna
Have you tried biologics for your crohns? My GI is going to try me on it as soon as im out of hospital. Nothing else has works for me either so I'm hoping this will.. 😃

My first ileostomy was temporary and this one may be. I had the first for a year and was relatively well when I had it but started getting problems as soon as I was reconnected. A year and a half later i ended up with this one which may or may not be temporary depending on how I'm doing. There are no medications left to control my crohn's so the ileo is the only alternative but doesn't ensure the crohn's won't return upstream of it.
Samboi has a temporary ileostomy for bottom problems - so far it hasn't helped but things are improving with medication so she may get a reversal later this year.
I think it depends on what you are having the stoma for as to whether it is successful both during and after the reversal.
Is your liver condition crohn's related? I really feel for you having to deal with that on top of everything else. I know what you mean about not 'feeling' the reality of the situation. I guess its the minds way of coping with what is a very 'unreal' situation. Probably good to be feeling like that and taking one day at a time rather than worrying and obsessing about the future.
 

annawato

Moderator
Staff member
Yes I have tried biologics but unfortunately they didn't help me. Most people find they help though so don't be discouraged by my failure. Interestingly my GI has retrialled me on sulphasalazine and although I was unable to tolerate it in the past this time it is not making me sick although I am very fatigued. But I'm often fatigued so maybe its not the sulpha....I would be surprised if it does work as nothing has so far but sometimes the old meds are good ones so fingers crossed.
How are you coping with your stoma. Any improvement?
:heart: anna
 

annawato

Moderator
Staff member
Yes I've been assessed for one but due to the amount of surgeries i've had and the complications they don't think I would be suitable. Plus the trials are all for more biologics which my specialist doesn't think will be any good for me. Thats why this stoma is now permanent, at least until something new comes up and he didn't think that would be for 10 years at least. My IBD specialist runs clinical trials in Sydney so knows about up coming meds etc.
 
I am about a month post-surgery (colectomy with ileostomy).... I am supposed to return to work next Monday. I seem to be doing well with adjustment to having an ostomy, I guess... no real problems other than figuring out which pouch I like best...trying a Hollister 2-piece right now, and find it is bulkier (which I don't like) but I do like the snap on and off option...

They (and by "they" I mean my GI doc) are telling me my ostomy may be permanent depending on some Crohn's thing I don't totally understand - supposedly if they try the surgery to reconnect me, the Crohn's may then attack my small intestine. I thought that could happen anyway..? Can anyone explain this any better?

Sorry for the rambling...didn't really know where else to put this. /n00b
 
Wow your going bk to work so soon after the op. Sounds like it went well and glad you haven't had any complications along the way. Glad your adjusting too it. Take care and take it easy when you go back it's still early days and your body will get tired easily. No lifting heavy things under 6 weeks or longer
 

nogutsnoglory

Moderator
How long did it take you guys to settle on a brand? I now feel confident in wanting a 2 piece but no clue which one. More playing around needed.
 
Hi I'm glad you are doing well. I use Convatec Surfit Natura with convex 2 piece in opaque as my stoma tends to move inward and the flat wafers leak. It took me a while to find 1 I liked and really worked well for me. I have good wear time with it and I really haven't had any accidents with this brand. I use stomahesive paste and I tape around it for extra security and I use a Ostomy belt as well. I have had several surgeries so my skin has gaps so the paste works great with that. I ordered several samples and found the 1 I liked I suggest you try and get several samples and try to find 1 that you like and works well for you. Take care!
 

PsychoJane

Moderator
They (and by "they" I mean my GI doc) are telling me my ostomy may be permanent depending on some Crohn's thing I don't totally understand - supposedly if they try the surgery to reconnect me, the Crohn's may then attack my small intestine. I thought that could happen anyway..? Can anyone explain this any better?
I know that for myself, when they realized I had crohn and not UC like they first believed, they told me that reanastomosis (or any other reconstructive surgery) was not the best idea with crohn. Often, if you have a full colectomy, they have to build a J-pouch (a resevoir constructed from your small intestine) and, with crohn, because it can affect anywhere from your mouth to anus, it is not highly recommended. Inflammation can install in these tissues and that can lead to major problems(pouchitis, etc) which often require to go back to ileostomy.

You may want to give a look at the brand coloplast for your product. After trying the others, I've settled with these as they are my favorite.
 

annawato

Moderator
Staff member
Hi Phoenix, Pj sums it up pretty well. Basically my GI said the rejoin is like creating a new terminal ileum so the crohn's returns there. Basically it seems to love attacking any new surgical join and this will happen with a j-pouch. they are only recommended for those with UC.
coloplast seem to be a popular brand so may be worth trying - also check out the following thread for more ideas:
http://www.crohnsforum.com/showthread.php?t=18610
I'm hoping lots of people will put their experiences there.
:heart: anna
 

annawato

Moderator
Staff member
NGNG, I settled on my brand pretty quickly although I do still have my ups and downs with it. I'm thinking of trying some other ones soon as its 10 months since my surgery and things have settled down. i initially tried everything in the first month or so and welland flair just seemed to work the best. Funnily enough I discovered it is the same as I used with my first stoma. I'd unknowingly settled on the same one so maybe it is the best for me.
I use a one piece since I change every day or two so there seems no point in using a two piece. I do really like the sound of the convatec ones that swell up around your stoma. Maybe I'll get brave and try them first.
I'm a bit like a gambler or sportsman that has their favourite routine for good luck- I'm scared if I change my luck will run out and I'll be having leaks all the time again.
How are you going finding one you like? I've resurrected an old thread about what people use and why. If we get enough good replies perhaps we can make it a sticky. Assuming I can work out how to do that.......haha.
:heart: anna
 
Well I'm still having trouble with getting a bag to last a day or two. I'm out of hospital and now it seems I'm house bound because of the bags. We have tried so many different ways with it. The skin just under the stoma is very red and sore I'm just at docs to see if they can suggest a liquid antiseptic.
My GI isn't putting me on any crohn's meds until next year when I get the stoma reversed.
Take care Anna 😄

Yes I have tried biologics but unfortunately they didn't help me. Most people find they help though so don't be discouraged by my failure. Interestingly my GI has retrialled me on sulphasalazine and although I was unable to tolerate it in the past this time it is not making me sick although I am very fatigued. But I'm often fatigued so maybe its not the sulpha....I would be surprised if it does work as nothing has so far but sometimes the old meds are good ones so fingers crossed.
How are you coping with your stoma. Any improvement?
:heart: anna
 
Well I'm still having trouble with getting a bag to last a day or two. I'm out of hospital and now it seems I'm house bound because of the bags. We have tried so many different ways with it. The skin just under the stoma is very red and sore I'm just at docs to see if they can suggest a liquid antiseptic.
My GI isn't putting me on any crohn's meds until next year when I get the stoma reversed.
Take care Anna 😄
I can't believe your GI won't put you on any meds until its reversed. That's alittle scary. But again I kno that every situation is different. I have CD and I just had my colostomy surgery. I'm a newbie. I'm only 1wk post op ( already seeing improvement). Seeing my surgeon in another wk. And seeing my GI in a mth. I was on cimzia for 2 yrs with no luck. Hence the surgery. But he absolutely believes its necessary to go back on cimzia bc he doesn't want anything to switch the Crohns to high gear. We don't kno what makes the disease to flare bit we hope with meds it'll keep it in low gear. Good Luck with everything. :)
 

nogutsnoglory

Moderator
I agree with crohnzie, why is your doctor waiting to put you on meds? If they feel you need it I don't see why a reversal is needed first.
 
I also agree, if you are having a flare they should put you on something now because to wait and do a reversal especially when you are having a flare you will probably need to end up on bags again I really don't understand the reasoning behind that. Most dr's would help your symptoms before thinking about a reversal so you have more of a chance to not need to have surgery again soon after. Also for the redness around your stoma have you tried stomahesive powder? I use it and it helps calm it down, you can try to get a sample and see if it works for you.
 

nogutsnoglory

Moderator
I'm finding that when I empty my pouch and close up shop that it immediately fills up right after. My stoma is playing games with me!

I do think however that I have some control over the output by rubbing my belly or bending slightly because I see more output. Am I fooling myself or do you guys also think you can help facilitate output a little bit if its close to the stoma?
 
I find mine does that too at times where I'll wash my hands and get ready to leave the bathroom and it's filling up again and I have to turn around and empty again. Your not fooling yourself I actually think the same thing where I'll get pressure and I'll press on my abdomen close to the stoma and it does help facilitate output as you said and also certain ways I lay or sit too so it's not just you I feel the same way and I've had a permanent Ileostomy for over 10 years now so you do start noticing more the longer you have it but I guess it's different from person to person.
 
I really have no idea what my surgeons are thinking I see my GI this months so I will speak with him about it. My redness has gone done heaps I was using stoma powder but it wasn't helping so I tried curash baby rash powder it worked in two days all redness was gone I couldn't believe. I'm starting to get about two days out of my bags I'm going to try for 3 days now the skin is good.
Thanks everyone for your reply's 😄


I also agree, if you are having a flare they should put you on something now because to wait and do a reversal especially when you are having a flare you will probably need to end up on bags again I really don't understand the reasoning behind that. Most dr's would help your symptoms before thinking about a reversal so you have more of a chance to not need to have surgery again soon after. Also for the redness around your stoma have you tried stomahesive powder? I use it and it helps calm it down, you can try to get a sample and see if it works for you.
 
My stoma nurse also told me to try Desenex powder it's a antifungal foot powder you can get at stores and other powders that are used for fungus that can help as well. I've had Nystop and Nyamyc powder prescribed also so maybe try to see if you can get them and see if they help. I have friends who are wound care nurses so they give me ideas when I'm having issues with my skin around my stoma area. I hope you find something that helps you I know different things work for different people.
 
Well I got 3 days just out of my bag woke up this morning day 3 with a small amount of leakage! I'm quite proud of myself considering my stoma nurse could only make it last a day if that. I've got rid of the redness which the stoma nurse couldn't she told me I would have it all the time until my reversal in jan and she couldn't do anything to help me any further. Just goes to show what they really know! I sent her a picture of my skin with no redness & telling her I was getting 2 days out of my bag and was applying the bag a different way to which she told me to and mind u a lot less fuss and a lot less products, and as I thought I got no reply. As they say less is more! Going to be interesting when I go for my appointment with her this month I can't wait to hear what she has to say! I believe with the 5 weeks in hospital she & the ward nurses irritated my skin with all the stuff getting applied not working and getting ripped off nearly 2-3 times a day! What they did and couldn't fix I fixed in 2 days with baby rash powder! Now why couldn't they think out of the box?
 
Good for you Ang71! I'm so glad you took matters into ur own hands. I always thought we know our bodies better than any Drs or Specialists.. Hope ur GI explains to you the reasoning to wait on giving you meds til after ur reversal. I was told by both my surgeon and GI that meds are still required bc if there was a potential for a reversal most likely I'll go right back into a flare then have to go thru another surgery. I sure don't want that.

So...to was the first time I had a leak. Actually twice. Now I'm worried bc I'm irritating my skin even more. I just went back to the original bags from Hollister I used when I was in the hospital. Stinks bc I liked the new ones bc it had a filter so no balloon whenever I break wind..lol. but either I'm having a hard time applying the bag on my own...or this new bag isn't right for me. We'll see.
 
Well I got 3 days just out of my bag woke up this morning day 3 with a small amount of leakage! I'm quite proud of myself considering my stoma nurse could only make it last a day if that. I've got rid of the redness which the stoma nurse couldn't she told me I would have it all the time until my reversal in jan and she couldn't do anything to help me any further. Just goes to show what they really know! I sent her a picture of my skin with no redness & telling her I was getting 2 days out of my bag and was applying the bag a different way to which she told me to and mind u a lot less fuss and a lot less products, and as I thought I got no reply. As they say less is more! Going to be interesting when I go for my appointment with her this month I can't wait to hear what she has to say! I believe with the 5 weeks in hospital she & the ward nurses irritated my skin with all the stuff getting applied not working and getting ripped off nearly 2-3 times a day! What they did and couldn't fix I fixed in 2 days with baby rash powder! Now why couldn't they think out of the box?
wooHOO!! You go girl!!!! :dance:
 

nogutsnoglory

Moderator
The other day I had to stand outside a single bathroom stall for 15 min till the person was done and it got me thinking about how nerve wrecking it is if you need to get in and change your bag due to a leak. I mean if its a small leak you can wait but if the bag bursts that's a nightmare.

I also need time to change my bag and being in a public bathroom unprepared will take me more time to ensure everything is sanitary. Do you guys worry that a long line of orople will congregate and start screaming mad that you are taking too much time?
 
I haven't had to deal with changing a bag in public. However, it's a matter of you gotta do what you gotta do. What is the alternative?
 

Nyx

Moderator
I've changed my bag in public more times that I care to count..lol I don't give a hoot if people are waiting or not...if it needs to be done, it needs to be done and I'll take all the time I need to get it on properly. I'm not sure most people would have the nerve to say anything anyway.
 
I worry about emptying in public too I'm going to a concert tomoz night in Newcastle and a bit scared worrying about my bum pain from op still and my stoma
 

nogutsnoglory

Moderator
Cheer maybe you can put on a fresh bag and flange just to be safe and secure. Yeah a concert or show where it's crowded or people go during intermission puts me in panic mode. Before my ostomy bag I would jump up 30 seconds before intermission to run to the bathrooms before everyone else.
 
Thanks for advice it does me and it's my first time going concert since my op 6 months ago next week and it still hurts :(:( and they changed my appointment today from January to February now! Great! I'm in pain and need to wait longer at least it gives it more time to heal I suppose.. I'm gonna get my mam to check my bum sorry tmi and if it looks ok leave it but if it doesn't look ok bring appointment forward
 

Nyx

Moderator
Good advice noguts...I'd put a fresh flange and bag on the day of the concert, and if you're still worried, you can always put some tape around the edges for added security. You'll be fine! Enjoy the concert!
 
I often use Micropore or other paper tape around the edges of the flange for extra security in situations like yours. Even better, although it is too late for you this time (but you'll have lots more concerts to go to :)), is Coloplast's Brava elastic tape. It is semicircular, so two pieces give full security. You could ring Coloplast and ask for some samples.

Have a wonderful time at the concert.:thumleft:
 

nogutsnoglory

Moderator
The brava strips are amazing but I find they only work more for coloplast bags due to the shape. With other bags I usually use HY-tape.
 
I just use cloth tape to "picture frame" my wafer to help me feel more secure and comfortable with my bag (as I call the entire thing) and not checking if it's leaking constantly I also use waterproof tape over that when I go to a pool or I shower and I blow dry my bag area on cool setting after a shower. Once in a while for a pool day I put the waterproof tape over the cloth tape I use an Ostomy belt also then wrap clear wrap around and tape the edges with waterproof tape to minimize the water exposure somewhat so I can not worry my bag is going to unstick if I'm in the pool for long then I take it off when I get out and blow dry my bag and if it's ok I can wait to change it until I get home to take a shower n change it there if not I change it right after I'm done in the pool for the day.
 
The concert was amazing struggled like hell tho had to stand all the through coz it was hurting that much. The journey was agony and it was 30-40 mins drive away. But apart from that it was awesome. I had no problems either :)
 

UnXmas

Banned
I guess I should be joining this group given how all my attention is on the stoma subforum since my ileostomy.

I love having a stoma. :)

I've only had it a few weeks, so I know I may get problems in the future, but so far I've had none. I wish I had had this done years ago. I can't get over how much better it is than what I had to go through before.
 

nogutsnoglory

Moderator
It's so funny how some people love the stoma and others hate it. I guess most fall in between because there are benefits and disadvantages. I'm
glad you are adjusting nicely. It only gets better from the beginning so you are off to a smooth start which rocks.
 

annawato

Moderator
Staff member
yes I think it all depends on whether you have a well behaved stoma or one that creates problems from the beginning. The good news is that most problems resolve in the first few months and things get easier the longer you have one. The first few months I really thought I had done the wrong thing (not that I had much choice) but now I can coping with all its idiosyncrasies and life with a stoma is much easier.
 

nogutsnoglory

Moderator
I think that's part of it but even if "buddy" was perfectly behaved id still kind of hate him. I just don't want a stoma and it makes life more complicated so it's a win/lose situation?
 
I guess I have mixed feelings about mine....he saved my life, so I am certainly grateful for that bit, but he may be permanent, and I was just divorced last year...I think if I already had a supportive partner who loved me, it wouldn't be as stressful, but I just can't imagine dating with this.
 
The other day I had to stand outside a single bathroom stall for 15 min till the person was done and it got me thinking about how nerve wrecking it is if you need to get in and change your bag due to a leak. I mean if its a small leak you can wait but if the bag bursts that's a nightmare.

I also need time to change my bag and being in a public bathroom unprepared will take me more time to ensure everything is sanitary. Do you guys worry that a long line of orople will congregate and start screaming mad that you are taking too much time?
...It was worse when the Crohn's was really bad and I was incontinent all the time. Although a pouch burst in public would definitely suck...I had mine break twice at home within a few days, but thankfully I was home alone. The one time was a HUGE mess. HUGE. *facepalm*
 
I had mixed feelings about my Ostomy and still do some days wonder if I made the right decision but honestly I believe I did as I have a better quality of life now since having it done over 10 years ago. I couldn't go out to eat often as I took a bite of my food and had to run to the bathroom and was in there for a while and ended up taking the rest of my food with me so it wasn't pleasant trying to really live my life the way I wanted to. I couldn't wear my belly shirts and low cut jeans anymore with an Ostomy as I am a slender person but it made my life much easier and I do more than I could do before and I also have more time of remission between flares now too. It's weird as I dated someone who had an Ostomy years before I had one and it made no difference in the way I saw him or felt about him so I knew in my heart if someone accepted me bag and all then they truly cared about me and loved me for me. I met my husband through a friend from work and he knew I had a bag and everything and he was giving her a ride home and it was raining pretty bad and they gave me a ride home as well and the 1st thing I said to him was "I'm sorry to tell you I'm taking a sh*t in your backseat" and he still married me and I always say there's a good story to tell our kids and grandchildren someday lol. I then said of course "thank you so much for offering me a ride that's very nice of you I appreciate it". So you can find love with an Ostomy if it's true love it won't matter how many scars you have or anything else they will love you for you. I just thought I'd share my story as I thought I wouldn't find anyone that wanted to be with me because of my Ostomy and scars and I did so I hope this gives you hope that you will find someone and if they stick around through everything knowing you have an Ostomy then they truly care for you and love you and they could be the perfect person for you and perhaps you will meet someone more genuine because they accept you from the beginning and it will be everything you want in a person at least that's what happened to me and I couldn't be happier with my husband and how he cares for me and loves me he's amazing. I hope you all find that if you didn't already we've been through enough we deserve good people in our lives to share our life and journey with. Take care everyone. :)
 
Aw that's lovely :) nearly had me in tears lol that's what I'm worried about relationships with it but my parents have told me if they don't accept it then they not worth it. I wouldn't be here without it and it's 2 yrs today since I've had it done! Thank you for sharing your story with us:) I only suffered 6 months with disease but left it until 4 months before I got treatment coz I thought it would go away. 6 weeks in hospital nothing worked and bowel could have burst at anytime it wasn't doing me any favours whatsoever. Had to have a blood transfusion during surgery now I've had it made permanent 6 months tomoz. I'm so grateful to be here and always will be :) take care too
 
Thank you CheerBear12. I was glad to share my story I know having an Ostomy and dealing with the physical changes is really hard to adjust to. I totally agree with your parents they aren't worth it if they don't accept you the way you are. I'm glad you are doing well! :)
 
It is and glad it's not just me they don't tell you these things and the impact it has on your body image I sound ungrateful and I'm not if it weren't for the surgeons... I wouldn't be here it doesn't bear thinking about. All of us have been through a lot and we're all inspirations to each other. We appreciate life more it's so precious :) how are you doing?
 

UnXmas

Banned
The other day I had to stand outside a single bathroom stall for 15 min till the person was done and it got me thinking about how nerve wrecking it is if you need to get in and change your bag due to a leak. I mean if its a small leak you can wait but if the bag bursts that's a nightmare.

I also need time to change my bag and being in a public bathroom unprepared will take me more time to ensure everything is sanitary. Do you guys worry that a long line of orople will congregate and start screaming mad that you are taking too much time?
I guess this is where the state we're in prior to getting a stoma affects how we feel about the stoma. Before my surgery, it would take me on average an hour to have a bowel movement. Sometimes up to three hours. I have nerve damage, so even though I usually had diarrhoea, straining to get it out was painful and took forever. Plus it could be so explosive that I'd need to strip all my clothes off prior to going to the loo, and shower afterwards. Sometimes I couldn't finish emptying my bowel, and any stool left in my rectum would then some out a little while later, usually when I stood up - i.e. I'd have an accident. This situation had been deteriorating for many years so that by the time I had the surgery, using a public bathroom was just not an option. Emptying the bag - even changing the bag - is so unbelievably quick and mess-free from my perspective.
 

nogutsnoglory

Moderator
Pre surgery I was in the bathroom 20 times a day with explosive diarrhea and pooped myself several times a day and was in adult diapers. It was miserable but that doesn't make a stoma feel anymore normal. It's more manageable but of course I just want a regular system with regularity.
 
It is and glad it's not just me they don't tell you these things and the impact it has on your body image I sound ungrateful and I'm not if it weren't for the surgeons... I wouldn't be here it doesn't bear thinking about. All of us have been through a lot and we're all inspirations to each other. We appreciate life more it's so precious :) how are you doing?
I agree with you, we have all been through so much that we appreciate the little things people take for granted everyday more and we are inspirations to each other with our different stories and struggles. I'm glad we have this forum to lean on each other and share stories and advice on it really does help to know we aren't alone dealing with all these things. I'm not doing too good at the moment but it has nothing to do with my Crohn's Disease or ileostomy I've been in remission since having my surgery to move my ileostomy back to the right side in May 2010 so we were trying to conceive our 1st child for a couple years but have had no luck and just when I was getting ready to start getting tests to see if there was a problem conceiving on my side or his or both I find out I need to get surgery to remove large masses on each ovary which causes pain and could possibly be cancer so I might need to get them both removed completely or possible more like the Fallopian tubes or hysterectomy. My surgery was scheduled October 8th but got put on hold due to my pre-op chest x-ray then I got referred to a respiratory specialist and had a Bronchoscopy done which shows the pneumonia I had for over 7 years that scarred or lay dormant in there all this time is now active again and I have an infection in my lung and also my lung is partially collapsed from all of it and it's all my right lung so I'm on antibiotics again for 10 days I did have a 7 day dose of antibiotics but my fevers started spiking again after I finished them so yesterday I had a chest x-ray and got put on another dose of antibiotics which are different than the other ones I was on. They make me super nauseous I've had a rough night barely slept but I'm hoping this clears it up so when I see him on January 7th I can get the ok to get the surgery scheduled again hopefully. Right now they are waiting to see if the lung biopsies which are in an incubation period grow anything else on them that's why there's such a long wait between when I see them next to get retested with a chest x-ray the week before my appointment. I'm doing great Crohn's and Ostomy wise though thanks for asking. How are you doing?
 
I was the same pre surgery 30-40 times a day had many accidents but I wasn't in adult nappies. My stomach swelled up like I was 9 months pregnant and I went down too 5 stone. Never felt better apart from pain from 2nd op
 

UnXmas

Banned
Pre surgery I was in the bathroom 20 times a day with explosive diarrhea and pooped myself several times a day and was in adult diapers. It was miserable but that doesn't make a stoma feel anymore normal. It's more manageable but of course I just want a regular system with regularity.
Sorry, I didn't mean to sound dismissive, just that in terms of the time spent in the bathroom and the difficulties involved in using public bathrooms, the ileostomy has led to huge improvements for me.

I think I'm so used to feeling abnormal, I'm just happy to have an improved version of abnormal. The idea of being actually normal is so unlikely that I don't even think about it anymore.
 
I had misdiagnosed untreated UC for 18 years before finally finding the right doctor and getting treatment. Unfortunately, no combination of meds helped me, and after 2 years of failed treatment, I had my surgery.

I love my stoma. I had forgotten how life could be without constant pain and being stuck in the bathroom all day, not to mention all of the diet restrictions and lethargy. It has turned my life around in a very positive way.
 
Melindar- I'm so sorry you are going through all of this thinking of you here for you anytime big hugs. I am worried about conceiving a child after having a permanent ileostomy done some people have probs and some don't. I'm hoping I'll be lucky and be ok when time comes. Can anyone put me at ease on that plz? But plz plz make sure you let me know how you get on when is it scheduled for now?:ghug:
 
Melindar- I'm so sorry you are going through all of this thinking of you here for you anytime big hugs. I am worried about conceiving a child after having a permanent ileostomy done some people have probs and some don't. I'm hoping I'll be lucky and be ok when time comes. Can anyone put me at ease on that plz? But plz plz make sure you let me know how you get on when is it scheduled for now?:ghug:
Thank you CheerBear12, I'm worried about conceiving a child with my ileostomy and all my problems but I went to see a high risk maternal fetal medicine Dr before we started trying and he's going to follow up with me once I'm pregnant hopefully if I can after all this as he had many women with Crohn's disease and ileostomies that he followed and he said my case is difficult but he doesn't see why I can't get pregnant it's just I'll have to be monitored very closely. I've had these masses over a year now and I was thinking the pain was from my Crohn's the whole time as I had my ileostomy moved from side to side several times so we figured it was scar tissue pain as there was no inflammation showing on x-rays so I just dealt with the pain but now I know I'm still in remission and it's my ovaries so I'm really hoping I stay in remission after the surgery to heal up and hopefully get the chance to try to conceive again. I will definitely post when I know anything new I'm hoping I get cleared by the respiratory specialist in January so I can get this surgery scheduled and done with.
 

nogutsnoglory

Moderator
No it's cool and I'm happy for those that do like their stoma and find it easier or less stressful. I guess id rather wipe my butt than a pouch. It's just easier and cleaner but maybe I'll get better at the cleaning.
 

Nyx

Moderator
I find cleaning my stoma much easier than I ever found cleaning my rear end. At least you can see what you're doing and get everything super clean before you put the bag back on.
 

UnXmas

Banned
I find cleaning my stoma much easier than I ever found cleaning my rear end. At least you can see what you're doing and get everything super clean before you put the bag back on.
I find this too. It's much easier keeping everything clean.
 
Ok so today I'm going on a plane for the first time since having my little friend. I can say I nervous as hell worrying about my bag bursting. I did a bag change last night in hoping it will be stronger for the flight. I'm praying everything will be fine but I never know with my bag it seems to have a mind of its own. I'm not eating until I get to my destination hoping it will slow my output down will only be drinking water and I may eat some marshmallows. Fingers crossed will let you know how I get on..
 

nogutsnoglory

Moderator
Be sure to let TSA know about your bag either by telling them or handing a card before going through the checkpoint. They may pull you aside for a private screening and you can request it.

I haven't flown yet with mine but it seems the bag bursting is unlikely. It can fill with some air due to cabin pressure but you should be ok from everything I read. Have a change on board just in case.
 

Nyx

Moderator
I've never had a problem on the plane, and I fly a lot. I've even done an appliance change on the plane once (while that was unpleasant, it wasn't horrible). I've never had a bag burst, or even fill with air for that matter. You'll be fine!
 

nogutsnoglory

Moderator
Nyx do you get pulled aside for examination? The TSA site says they can pull Ostomates aside and make the person pat their own bag and then check the hands for dangerous trace materials. I am not sure if that's done by you but can't imagine TSA is that different.
 
I don't think that there is any chance of your bag bursting. I have had mine for 13 years, travelled all over the world by plane and have never had that type of problem. For your own feeling of confidence, just make sure that it is very securely attached - I tape mine around the edges with Micropore or other tape or use Coloplast Brava elastic tape.

As you say, before travelling eat lightly and only things that you know don't cause you any problems.

I've only once had a problem when being patted down - in Jordan - and was taken into a room to explain. The women officials were very understanding and courteous.
 
No bag inflation issues and TSA looked at my x-ray a little longer than others in front of me, but sent me on through. I had my card ready for them, but didn't need to use it.
 

Nyx

Moderator
I've been brought back for inspection once, in all the time I've travelled. I showed them my bag (didn't open it or anything) and explained to them what it was for. The lady touched it and I laughed my ass off when I told her that she was touching my intestine and she jerked her hand back and then went "omg, really?" I offered to show her, but she declined...lol It wasn't a problem at all.
 

nogutsnoglory

Moderator
Nyx, I just laughed so hard. "Hey lady your getting on my guts".

When my friend annoys me saying "are you wearing your bag today?" Knowing full well I have no choice I take out my camera phone and show him a picture of my intestine. That shuts him up real quick.
 

PsychoJane

Moderator
I've flown quite a few time in various country and never had an issue with my bag and was never required to show it either. I think I might have had to say something about it once but I can't recall for sure. She did not ask to see or anything either.

Also, what is that card you are talking about. You have a card that says you are an ostomate in the US?
 
I was wondering the same thing about how to get a card. Thanks for the info nogutsnoglory. I did have a card saying I had Crohn's Disease from CCFA (The Crohn's and Colitis Foundation of America) when I first got diagnosed it's just to allow me to use the bathroom wherever I go especially those places that say employees only for the bathroom but I never used it really. I'm going to check that out then and print one out, thanks again for the info! :)
 

UnXmas

Banned
Had my first leak last night. :( Stupid me saw that there was a crease in the adhesive part as I was going to bed last night. But I was so tired I thought, I'll change it in the morning. Fell asleep, had a really good night's sleep (I'm on sleep meds - I can sleep through anything!) and woke up this morning to find some yuck had seeped out. Not a huge amount though, and I guess one leak (which really I could have avoided if I was a little less lazy) in six weeks isn't so bad.
 
I think that most of us have fallen into this trap at least once. I get itchy under the base plate and, as with you, if I am very tired, I have a tendency to say to myself: "It'll last until the morning..." No, no no!

I'm glad that yours was just a small leak. And, yes, you are doing very well.:applause:
 

nogutsnoglory

Moderator
In the future if you get a crease and you will because it's hard to put it down perfectly just use tape to pictureframe the appliance. It will give you more protection and sense of security.
 
Its going ok, last weekend it leaked 8 times but we are getting the hang of it. I think dansac is the name of the company?
 

nogutsnoglory

Moderator
Ki3 you have a good attitude about it which is great. At first I leaked 3-4 times a day. Was miserable. Thankfully I'm not leaking now.
 
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