17 year old newbie stoma-girl with questions!

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hannaaah666

Joined
Jan 24, 2011
Messages
41
Location
Kent, England
Noone ever discussed stomas with me. They were my absolute worst nightmare and the worst situation I could think of. When they told me they could t calm me down for hours. When I woke up they told me it's temporary. THE RELIEF, I cannot tell you!

I came out the hospital yesterday, had surgery a week ago. They removed a stricture and a not-too-big amount of colon, which was all the crohnsy bits in me. I have a huge wound whichll make a pretty impressive scar but I'm looking forward to showing that off on the beach when I'm better!

How long did it take you to recover from your ostomy (to a point where all you're worrying about is the bag)?

How long til you had it reversed?

How long did you recover after reversal?

How often do you empty your bag? Mines about every 3-4 hours which sucks cause I only had to go to the loo twice a day before! My nurse is putting me on Immodium.

Whats it like recovering from the reversal?

I know I'm rushing ahead but... I have A2 exams next summer which is when the surgery probably is. I want to go on holiday after exams to say goodbye to my friends before we all go off to uni. When should I get the reversal? My surgeon said I only need it 2-3 months but I'd rather wait and see how I go recovery-wise. It sounds like itd be best to have it after exams but before the holiday but I want to be recovered, obviously! Dilemma! Any suggestions?

How long did it take you to get used to the bag?

What clOthes do you wear?

How do I stop it from being so damn windy?! Haha my friends will notice and I've only told one of them (my most trusted friend) that I have the bag! x
 
Hi Hannaaah
It has taken me six months to fully recover from the ileostomy surgery - although I was very unwell before the surgery.
I initially wanted the reversal done as soon as possible. I am now waiting at least another six months.
Initially I had to empty my bag frequently - including during the night. It drove me crazy! Now I only empty my bag about three times per day. I sometimes burp it overnight - depends on what I have eaten etc.
I have got used to the bag - forget it's even there. Has no real impact on my life at this point. It has taken me a very long time to get my head around it though.
Good luck with yours - hope it all goes well for you.
 
Noone ever discussed stomas with me. They were my absolute worst nightmare and the worst situation I could think of. When they told me they could t calm me down for hours. When I woke up they told me it's temporary. THE RELIEF, I cannot tell you!

I came out the hospital yesterday, had surgery a week ago. They removed a stricture and a not-too-big amount of colon, which was all the crohnsy bits in me. I have a huge wound whichll make a pretty impressive scar but I'm looking forward to showing that off on the beach when I'm better.
It sounds like you had quite a bit done there. And it sounds like it was an emergency surgery?
How long did it take you to recover from your ostomy (to a point where all you're worrying about is the bag)?
It depends on how sick you were before you went in. At least 8 weeks. 3-6 months for a full recovery.
How long til you had it reversed?
Very much depends on your state of health! Look after your rectum is my best advice! 3 months to a year or more, again, depending on your health.

How long did you recover after reversal?
Reversal surgery can take as long to recover as the original op. It can be shorter if your health is good, but any major op you are looking at 8 weeks, minimum.

How often do you empty your bag? Mines about every 3-4 hours which sucks cause I only had to go to the loo twice a day before! My nurse is putting me on Immodium.
Your stool will thicken up. It will take a good while, but your body will regulate itself so that you dont have so much diahrea.
Whats it like recovering from the reversal?
Same as the the stoma surgery, only you will have to run to the loo!

I know I'm rushing ahead but... I have A2 exams next summer which is when the surgery probably is. I want to go on holiday after exams to say goodbye to my friends before we all go off to uni. When should I get the reversal? My surgeon said I only need it 2-3 months but I'd rather wait and see how I go recovery-wise. It sounds like itd be best to have it after exams but before the holiday but I want to be recovered, obviously! Dilemma! Any suggestions?
Just see how you go on recovery for now, dont make plans yet!

How long did it take you to get used to the bag?
Very quickly. I had to! Just a learning curve.

What clOthes do you wear?

Try www.forever21.com for some lovely blouses and tops. You can wear what you want, but DONT squeeze your stoma off or you will be sorry!

How do I stop it from being so damn windy?! Haha my friends will notice and I've only told one of them (my most trusted friend) that I have the bag! x
You will have alot more gas for the first few weeks. Just put your hand over your stoma to make it shut up! After a few weeks, watch what you eat to avoid gas causing foods, like broccoli and beans. But, you are probably on a low residue diet to begin with. Add foods carefully.

Have a good look thru the sub forums to get some good advice! Welcome to the club!
 
I wasn't rushed straight in as a proper emergency but it did need to be done ASAP or else the worst would've happened. I wasn't burst or infected but I had a stricture which my Consultant had kindly made me fill with MoviPrep after not believing how much pain I was in, so it was fairly rushed after that (nothing came through, obvs!) Not that much was removed, I don't think, and they only got rid of bits of colon because that's the only bit of me with active crohn's which is pretty lucky.

I've been told it can be reversed in 3 months but I'm thinking of waiting a little longer.

Ah, recovery time sucks. Everyone's been very impressed with my recovery so far but it's only been a week. I'm walking about but can't stand up straight yet, and can handle stairs officially as of today :) Getting used to the bag slowly too! It's still kind of horrible and scary but it's getting easier.

Oh dear, I was rather hoping the reversal would be easier!!

I know I shouldn't make plans, but it's irritating because I've been saving up for two years and have JUST reached my total so I do want to go. It's just the question of being in a hot country for the first time in my life and being unable to wear a bikini or possibly having not fully recovered!

Thanks! I think I'll be in baggy clothes for the time being at least though. I'm not comfortable with waistbands pressing on my bag or stoma yet so tend to let it hang out and cover it up with a long top, but we're only a week in so far so...

That's good that it'll quieten down! It was dreadful this morning, and it makes me jump which makes me snap forward and hurts where they cut my muscles so that's not good at all!

Thanks very much for the advice :) x
 
Three months is doable, but you will just be recovered from the first one. As a 17 year old though, your powers of recovery will be ALOT better!

You CAN wear a bikini. Just a high waisted one. We do anything and everything as ostomates, so believe me, it wont hold you back.

After a week, I'd say you must be doing pretty well. You will get there!
One day at a time...nice and easy does it.

I hope you are able to do all the things you have planned. It doesnt sound to me like anything will hold you back!
 
Mine was similar to yours. Not an emergency, done because of multiple strictures in colon,. They removed about 75% of my colon to get a point without diseased tissue.

My Surgery was April 24th and I am having the reversal on Tuesday. So about 2.5 months. It was originally planned for the end of August, but two weeks ago my stoma prolapsed so they gave me a colonoscopy, everything looked good, so they are just going to reverse it now.

I was told that due to the prolapse they may not be able to stretch what I have left of colon to the bottom part. So they may just scrape what colon I have left and connect the small intestine to my bum.

After about 2.5 weeks from the surgery I felt better, just got tired very easily. A trip to the store was exhausting. I am 34, but was pretty healthy before the operation, I only spent 3 days in the hospital. I made sure I walked at least twice a day, I think that helped me get my strength back. I also really stuck to a low residue diet. I still am not eating any raw fruits or vegetables, and not eating things on the no-no lists for low-residue diets.

I empty mine when it gets about 1/4 full or every time I go to take a pee. I feel more comfortable when it is mostly empty.

I didn't wear pants with a button until about a month after surgery. Now I wear just about everything I wore before the surgery execept for a couple of tighter shirts/t-shirts.

As for gas, I try not to eat anything on the list of foods that cause gas, no carbination, etc.

As for the reversal, I can let you know how that goes next weekend. I should be home from the hospital by then.
 
Hey Hannah,

I'll just talk about the clothes issue for now....honestly I wear almost all the clothes I wore before...and most of my clothes are fitted. I wear a belly band all the time ( it's basically a fitted tank top without the tank part, they are intended for prefers women to extend the-shirts to cover the belly. They are not at all constricting, yet fitted enough to keep the bag folded against my body without flapping around. I just throw on my regular T's and such over the top and empty my bag often so that you don't see the bulge. For swimwear I bought a couple of tankini tops that are longish with ruching ties on the side and again the wrinkles from the ruching hide the bag...I actually wear a belly band (just type in vonnas belly band in eBay and they'll pop up...7$ each or 5 for 35$.... And no I am not affiliated with the company in any way....they just really work for me and I'm too lazy to sew my own!!! Lol) under my tankini top and tucked into the bottoms and that way the bag won't poke out the bottom. I also bought a one price with one shoulder strap that has ruffles on it...I sounds a bit hideous but it's really cute for a one price and again it hides everything while still being functional. I wear low rise jeans so they sit under the bag and again tuck the bag into my belly band (k now I'm sounding a bit ridiculous). I should mention that I am quite slim and have a boyish middle so this system is really comfy for me. I do know that some of the more curvy people find anything around their middle somewhat not comfy from the posts that I have read...but obviously once you are healed you will figure out what works for you. K I've rambled a LOT here...but I know that clothing was a big worry for me and I'm like old compared to you (35....haha), but regardless of age I believe that looking and feeling good about your body is very important.....and even more so at 16 when that stuff is often more focused on. Anyways I hope some of this helped even a little....If you have any more Q's please contact me and I'll be happy to help if I can. Oh and of course as Misty mentioned...I think, empire waisted baby doll type tops cover everything without having to worry about the "bump"...

All the best,

Kat
 
Hello Hannah!

How long did it take you to recover from your ostomy (to a point where all you're worrying about is the bag)? Not long well, back in the day, when it happened the first time, maybe it took me a few months to feel comfortable, like 3-4 or so.

How long til you had it reversed? Never had it reversed. Had it once, then had a second surgery to relocate the stoma but have had it for 13 years-ish now.

How long did you recover after reversal? Reversal was not an option

How often do you empty your bag?Maybe 4-5 times a day or so... It depends of what I wear. I empty it as long as I am comfortable with the way I look.

Whats it like recovering from the reversal? can't answer that sorry...

How long did it take you to get used to the bag? Honestly, I've had it for so long I can't remember how long it took me to get used to it. I guess it took me around a year maybe. I had it relocate this year and I mean, it changed nothing. I'm as used to it as I was before. Nothing new, just not the same side.

What clOthes do you wear? Everything but bikinis. Today I'Ve been complimented about my outfit. My friends are aware of my surgery and they were amazed by what I was wearing. I have many nurses friends and they are always surprised about how I manage to wear really tight outfit even though I have my stoma.

How do I stop it from being so damn windy?! It will get better. First weeks can be pretty terrible but after that, the winds get really moderate. At first, stoma don't behave much...
 
Thanks everyone! Anyone know how long it'll be before I can laugh, sneeze, cough or stand up straight without feeling like I'm going to ping apart from the muscles? x
 
Oh - be very careful laughing.
I managed to do quite a bit of damage laughing at some of the funny threads on this very site!! Avoid them at all costs!
Stay away from amusing people, and don't watch any comedies.
You will be in agony!!
 
Thanks again everyone! ANOTHER question: Every so often the output is black and kind of sludgy... is this ok? My nurse is coming round either tomorrow or tuesday and it IS a brand new stoma but I'm a hypochondriac and it was a bit of a shock to see dark stuff emerge!! x
 
I have to say, my poo was all over the place after surgery! (ok...NOT literally) But, you may have some blood in your poo, and OR your iron stores are getting better.

Did they warn you that you will have mucus poos the 'normal' way through your back passage as well by the way?

Keep a log (yeah...disgusting) of your poos and how you are feeling. It will help the nurses and Dr's with your recovery.
:kiss:
 
Oh my god that's so cool if it's iron. I've been anemic for 2 years, unable to absorb it! I had a few units of blood in hospital so that'd boost the iron in my blood, i guess. Is blood in the output an ok thing for post-op? Good idea, I'll turn my crohns-diary into a poop log for now!! x
 
Blood isnt unusual in your poos after that surgery, or even after a colonoscopy for that matter. Poo diaries are very helpful!!! :ylol: But, you need to keep a log of what you have eaten and drank as well!

Me...I had blue/green poo...totally freaked out..till I remembered I'd had a powerade! (well duh me!)
 
hannaaah666 said:
Noone ever discussed stomas with me. They were my absolute worst nightmare and the worst situation I could think of. When they told me they could t calm me down for hours. When I woke up they told me it's temporary. THE RELIEF, I cannot tell you!

I came out the hospital yesterday, had surgery a week ago. They removed a stricture and a not-too-big amount of colon, which was all the crohnsy bits in me. I have a huge wound whichll make a pretty impressive scar but I'm looking forward to showing that off on the beach when I'm better!

How long did it take you to recover from your ostomy (to a point where all you're worrying about is the bag)?

How long til you had it reversed?

How long did you recover after reversal?

How often do you empty your bag? Mines about every 3-4 hours which sucks cause I only had to go to the loo twice a day before! My nurse is putting me on Immodium.

Whats it like recovering from the reversal?

I know I'm rushing ahead but... I have A2 exams next summer which is when the surgery probably is. I want to go on holiday after exams to say goodbye to my friends before we all go off to uni. When should I get the reversal? My surgeon said I only need it 2-3 months but I'd rather wait and see how I go recovery-wise. It sounds like itd be best to have it after exams but before the holiday but I want to be recovered, obviously! Dilemma! Any suggestions?

How long did it take you to get used to the bag?

What clOthes do you wear?

How do I stop it from being so damn windy?! Haha my friends will notice and I've only told one of them (my most trusted friend) that I have the bag! x
Click to expand...

Hi hannah :), recovery for me was a slowish process tbh, probably a good 2 months from coming home to my wounds healing and being a bit more confident.

Like you I have to empty probably every 3 hours, it does change a bit depending on what and how much I've been eating, But you'll get into the routine of it.

Can't really comment on the reversal, mine was meant to have been reversed by now but things aren't really going according to plan on that front.

Hope your recovery continues to go well, immodium will certainly help slow your output :)
 
Getting a little better everyday. If I stretch out on my bed for a while then I can stand up 75% straight, I'd say! And today I managed to walk to the corner shop (10 mins there, 10 mins back!) though I was knackered afterwards!
Just reread the comments... "Mucous poos"?? No, they didn't warn me of this haha! What on earth are they? I'm starting to feel like there might be something or other about to work the normal way and I'd quite like to be prepared! Don't spare the details, one thing I love about this forum is the total honesty and openness! x
 
Mucous poo's are exaclty what they say on the tin lol, It happens less often in some people, for me probably every couple of days. Basically your colon still produces mucous which would normally be passed alongside the usual... but now there is nothing passing through the mucous still has to go somewhere!... it's very sticky and yucky but doesn't tend to come out in large amounts.
 
Hi there! i am turning 30 this year and have had my Ostomy for 2 years now. Just wanted to share my quick advice.

First thing is Bananas, Peanut Butter and marshmellows will thicken your stool! ;) I have a nice thick banana, pb, ice smoothie every day to help, sometimes twice a day but thasts cuz they are so good lol.

Second is, go get some leggings, maternity pants & maternity shorts! With the maternity you can wear cute form fitting tops and you cant even tell the bag is there. With leggings I wear cute off the shoulder loose tops and stuff like that.

Third is, I used the same bag I came home with for like 1 year and a half, didnt know there were better options! The one I went home with from surgery always started to break down when it got wet. I got a new kind that is more of a cloth/bandaid type of adhesive that does wonderful in water :) Call the manufacturer, I use Hollister. they are wonderful in finding the right bag for you. I use bag 8531 and its awesome.

I absolutely love my ostomy :) I control my Crohn's with the SCD diet now and my Crohns stays away as long as I dont eat carbs, grains, sugar or dairy. Sometimes I do slip up and I flare but my Ostomy makes Crohn's SO SO SO SO much easier to deal with :) I was tortured with 20 times + a day of running to the bathroom and crying and vomiting at the same time. Glad that is over lol.

Anyways, I hope your time with your precious stoma isnt too long if you dont want it. For now, enjoy not having to poop lol Get well soon ;)
 
Also breads cakes and cookies made with nut flours like almond flour or coconut flour will make your stool super thick! and they are delicious ;) There are tons of blogs with lots of recipes!

Just google SCD cake or cookie or whatever you likfe to eat :)

Great blogs with SCD/paleo type recipes
Heal-Balance-live.blogspot.com
www.againstallgrain.blogspot.com
www.comfybelly.com
my blog is www.foreverscd.blogspot.com hehe its really new though

DON'T FORGET DIET PLAYS A HUGE FACTOR IN IBD!! SCD cured me.
 
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Hi Hannah i have been diagnosed with indeterminate colitis which means they don't know where it's Crohns or ulcerative colitis it took me 3 months to recover from my op but I was very sick before they done it was too save my life. I don't know about the reversal because opting for my rectum being removed so will be keeping the ileostomy. If anyone has any info on rectum being removed any info will be appreciated thanks. As for the clothes I can wear everything I could before the surgery I just wear a cami sole underneath. Imodium will really help your output I take 45 mins before I eat. Many thanks
 
Cheerbear12 I had my rectum removed 2 years ago...... Unfortunately, I had the worst case scenario. My rectal wound wouldnt heal. I had 2 more surgeries to attempt to close it but it was infected and the docs tried everything to kill the infection. Had a cavity the size of a sand dollar behind a tunnel that is now my rectum. In May I went into the ER borderline septic and the wound was bad. The only thing the docs wanted to do was another surgery including a muscle transplant from my thigh. Anyways, I went to Chinese medicine college and they gave me herbs to drink and apply to the wound. I am almost completely heald now except there is still a 3 inch long tunnel where my rectum used to be. Hoping I will heal soon. I am sending my story to discovery health because Chinese medicine saved my life.
Anyways, i dont want to scare you, just make you aware. If you do get it removed make sure and keep it clean and it seems to me its healing better now that im keeping gauze between my cheeks and keeping it as dry as possible. you should really talk to your surgeon about proper wound healing and how to help it along. Mine didnt even tell me to clean it :( Anyways, i hope my story can help you in a speedy recovery :) Good luck
 
Snoflayk505 thanks so much did they go through your stomach and bottom to do this? How long did it take before you could sit without pain? Sorry for all these questions want to know as much as possible before hand. So sorry yours ended up being infected and thank goodness for the Chinese medicine. I'm just really petrified about everything but I feel that with being diagnosed with indeterminate colitis i haven't got any other option they dont know whether it's Crohns or ulcerative colitis. Shame on your surgeon for not telling you to keep it clean and I'm so glad everything has turned out well for you. You have no problems with it now? Many thanks
 
Snoflayk505 said:
Also breads cakes and cookies made with nut flours like almond flour or coconut flour will make your stool super thick! and they are delicious ;) There are tons of blogs with lots of recipes!

Just google SCD cake or cookie or whatever you likfe to eat :)

Great blogs with SCD/paleo type recipes
Heal-Balance-live.blogspot.com
www.againstallgrain.blogspot.com
www.comfybelly.com
my blog is www.foreverscd.blogspot.com hehe its really new though

DON'T FORGET DIET PLAYS A HUGE FACTOR IN IBD!! SCD cured me.
Click to expand...

I'm very happy that the SCD diet has helped you to be in remission. Sadly, it cant cure crohns, but alot of people have found that diet is helpful.
 
How long did it take you to recover from your ostomy (to a point where all you're worrying about is the bag)?

About 3 weeks. I had open surgery, so it was a pretty major operation.

How long til you had it reversed?

Exactly three months, my resection was on 29th March, my reversal was on 27th June

How long did you recover after reversal?

I was in the hospital for 4 days and was able to start working from home the following day. Two weeks on, I am not fully recovered I still have some pain, but in much better shape than I was after the resection.

How often do you empty your bag? Mines about every 3-4 hours which sucks cause I only had to go to the loo twice a day before! My nurse is putting me on Immodium.

It varied a lot depending on what I ate. If I was careful with my diet, my stoma output was quite firm and I could, for example, sleep through the night without needing to empty it. Eat the wrong thing, e.g. onions, and I would have horrendous gas and lots of output. You need to figure out a diet that works for you and it may help to keep a diary so you can identify your problem foods.

Whats it like recovering from the reversal?

It is a very minor operation compared with the resection, so the recovery is quicker. I feel very well, two weeks after mine, but I am having some issues with pain and urgency which is to be expected aas thing settle down. I am seeing my surgeon again tomorrow, so will see if there is anything he can suggest to speed up getting this back to normal.

When should I get the reversal?

When you feel ready and it is convenient. Usually, they recommend you leave it 3-6 months after the resection.

How long did it take you to get used to the bag?

I had some issues initially with leakages and sore skin. Then I found the right bag and from there on, I had no issues.

What clOthes do you wear?

The same clothes as I did before I had a stoma
 
Cheerbear12
Honestly it hurt so bad :( Mine was infected from day one though. i tried to tell them something was wrong in the hospital cuz it didnt seem right. Was an awful smell and opening up and lots of puss. They did the removal during my stoma surgery but I do know my rectum removal was done face down. LOTS of people recover quickly with no problems. They say people with active disease in the rectum have healing problems. My disease was severe there so I guess so ;) About the time Was supposed to be like 6 weeks healing time but it will be 2 years in august and I still have a tunnel. So, like I said my case was so worse case scenario. I would still do the rectal removal surgery again if I had to do it over. I just would have listened to myself when I knew that smell was not right. Sometimes we have to take things into our own hands. I would have seeked alternative treatment when the docs treatments failed to cure the infection....and I would have kept it alot cleaner. I just didnt get enough info. All my doc said was dont do anything, just leave it alone.

Terriernut
I know there is not necessarily a "cure, cure", but I just dont feel like any other word lives up to what this SCD diet did for me. :) I am just praying that some will try the diet too. The success rate is higher than humira. I will look for the study I found showing that.
 
Snowflay505 Sorry pressed wrong button omg that sounds really bad :-( sorry you had to put up with that:-( they never done mine during my ostomy surgery because I was hoping to be able to have it reversed. I can't take that chance with my diagnosis:-( I'm hoping the pain won't be as bad as the ostomy surgery that was absolute agony:-( I can't believe your nurses said not to do anything and just to leave it. Ridiculous!! I hope it heals up properly soon for you:) Can they do it keyhole? My last one was keyhole. Many thanks
 
How long did it take you to recover from your ostomy (to a point where all you're worrying about is the bag)?

How long til you had it reversed?

How long did you recover after reversal?
I am 19 and had mine 3 months ago, I felt fully recovered after 6 weeks and returned to work. I had keyhole surgery though which i believe has a quicker recovery time than open surgery.

How often do you empty your bag?
Around 4 times per day, i tend to empty when i wake up, just after lunch, dinner and just before bed.
 
AlexJ it took me 3 months to recover from it properly I couldnt do anything for myself afterwards I was so weak and needed to build my strength up. I had my done keyhole but I was really really ill going in it was to save my life. Not sure about the reversal coz I'm opting for my rectum being removed. With my diagnosis I feel I have no other choice than to keep it. I got diagnosed with indeterminate colitis which means they don't know whether it's Crohns or ulcerative colitis. I'm not sure how often I empty havent counted and I use Imodium 45 mins before I eat which really helps. Hope that helps you!
 
I had my rectum removed as part of a total proctocolectomy. Unfortunately I had left it far too long and the area around was just rotten, so I was left with a hole the size of a large man's fist. The surgeon sewed it up to start with, and I was discharged, but a large amount of blood collected in it and the stitches just burst open. It was a bit frightening to wake up with my bed full of blood! They considered a graft with tissue from my thigh, but decided to leave it open so that it would grow in from the inside.

When I went home I was fortunate in that the district nurses came every day to dress the wound. I took an Endone tablet for the pain about 40 minutes before they were to arrive and had a shower just before they came. My surgeon didn't like them using anything but saline to wash it out -but the best thing that he advised was to get them to use alginate dressings made from seaweed for packing the wound. It took almost 7 months for the wound to heal completely, but I had absolutely no infection during that time and the district nurses were certain that was because of the alginate dressings.
 
Susan2 I'm so sorry you had to go through that I'm glad its healed for you now. I'm hoping I won't have any probs with healing when they do it... I've been diagnosed with Indeterminate colitis and apparently they have more problems than people diagnosed with uc:( how long for pain/ recovery? I know everyone is different many thanks
 
Susan! Our situation sound extremely similar. I wish mine would heal :( I had the same size hole but mine was lead up to by a tunnel. Did you have a tunnel too or could you just see your hole? On my way for another MRI at noon :( Having trouble controllong the bleeding, have a feeling im going to be on my way to the 4th surgery.
 
hey hannah! I know how you feel, I had no idea what a stoma was till I woke up from surgery! I was 14 and mine was also temp. I got used to it SUPER quickly, and I'm sure you will too :) As for clothes, I suggest high waisted stuff cos it covers it up but if it's tight it's pretty uncomfortable.
Although I'm pretty ok with my stoma, I'm not gonna lie to you: it can be SO depressing sometimes :( Right now I'm having those 'what if noone ever likes me cos of my stoma' moments, cos I'm 18 now and my doctor says my stoma may have to become perm :/ you're lucky you have a friend to tell though, and don't worry about A2- schools and unis are generally really sympathetic!
and if you decide to go to uni, I suggest applying for disabled students allowance. They give equipment to make your life just that lil bit easier hehe :)
 
I'm glad I'm not the only one who has depressing periods I also didn't know what a stoma was until I looked at it the next day:/ I know mine is going to have to become permanent :( I don't like the idea but don't have a choice. Best of luck keep us informed xx
 
Please help me. My bag keeps falling off. It's been a month since the operation. It just peels off. It's nothing I'm doing wrong, because the first one that peeled off was one the nurse put on me. I don't know what to do. I can't do anything and I'm going on holiday soon. I can't sleep a whole night because I wake up at 3 or 4 am and find it's come off. Which is unpleasant to say the least. Sometimes it happens when I'm out. I find myself holding onto it just in case. I wear those granny-style support knickers over my regular underwear to try and keep it stuck to my stomach but it just comes off. Please help I don't know what to do and I'm really upset. I've got to ring the nurse but I just don't know what to do or what she can do.
 
Hannah keep your hand on it for a few minutes after you change it it will keep it stuck to your stomach and the heat from your hand will keep it stuck. I hope this works for you and hope the nurses can help you. Keep calm it will be ok and don't stress. They can try different types of bags. Keep me informed big hugs xx
 
Hi Hannah. Sorry to hear about this, nothing worse than not having a secure appliance!

What products are you using currently? All of them. Can you let us know what bags, base plate, rings, barrier wipes, the works?

Also, is it falling off due to leakage? Or just simply not adhering to your skin?

We hope to be able to get this solved for you! But by all means ring the stoma nurse as well, they are an incredible help as you are getting used to dealing with an ostomy.
 
I found mine would lift off if I didn't add the wings - not sure what they are called - but they are like a frame that goes around the baseplate.
They give me a lot of comfort.
Hope you find the trick that will work for you.
 
Hey:)
I'm in the same situation as you. I'm almost 18 (tomorrow! yay!) and I got my ostomy around the same time you did (19.6.2012)

I think I got fully recovered three weeks after I got released from the hospital.. something like a month from the surgery:)

my plans to take off the bag are pretty soon- in october (4 months after). I graduated high school this year (from the hospital lol) and planning now to volunteer in the army like all of my other friends even though I got released from the obligation (I live in Israel in which army is a must)

I empty my bag twice a day+ I change my bag twice a day, at morning and before I go to sleep. I don't know how it works aboard but here in Israel you get all the supply for free so I don't mind to use a lot of bags.

I wear now only dresses and skirts because I don't feel safe in pants... they put pressure on the bag.

all my friends know that I have Crohn's (kinda hard to hide when you miss almost all of your last year at school) and only few close friends knows about the stoma.

I don't really mind and I live normal life. the only thing that sucks is that here in Israel we go very often to the beach cause it's always hot and the beach is near, me for example, live only 20 minutes from the beach, but now I prefer not to :(

If you got fb or something I would love to add you as a friend and get you know a little bit better, I don't know anyone with a stoma, especially in my age.
 

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