Joining you all in 6 weeks!

[lotte26]

Hi there guys!
I am getting a panproctocolectomy and ileostomy in 6 weeks. I was sure I would be getting an ileostomy soon, but for some Strange reason I never factored a stoma into the equation, I always thought I would be in my 30's when I got one (I'm 22). I had just had yet anither seton added to my bum and was still n hospital - So you can imagine when the surgeon told me, I burst into tears (it didn't help that I was alone too !). But after a couple of hours I got calmer and started thinking over the pros. I still felt pretty gutted tho.
Since then I have been searching the web and finding as much info as I possibly can, I am feeling a lot better.
I swear reading these forums and stoma sites have done nothing but calm me about this op. I still have so many questions tho! I am meeting a stoma nurse on Friday and another ostomate lady on Sunday hopefully they will answer some questions.

I still would like to ask you lovely people as well if that's cool!

Can you sleep on your tummy?
Is it more difficult or annoying having a bag if you have a larger tummy?
Do those bag silencers actually work?
Did you get an epidural before your op?

I'm sure there are heaps more I just can't remember them!
I am also glad as the surgeon said I can keep my bowels!

Anyways thanks tons and have a good day

-charlotte

--------------------------------

 

[Crohn's 35]

Hi Charlotte, I can't help you with your questions but I wanted you to know that it is okay to be scared and cry. Nothing ever prepares you for this surgery, nothing. It happens to others but not you... You are a strong person, having this disease instantly makes us stronger. Someone in the stoma club can help you. All the best in your journey. Take care, and keep us posted!

 

[vickyoddsocks]

YAAAAAYYY! I fellow Ostomate.......or pre-ostomate! Im having mine THIS THURSDAY!! I'm 25 so were similar ages! I also have had setons in the past and a lot of 'bottom troubles'. There are some great websites out there that made me feel loads better about products and clothes etc! Theres also a lot of GREAT posts and people on this forum that provide loads of support and answer loads of questions
Hopefully after my surgery i can give you LOADS of advice and tell you that its not that bad.....fingers crossed! Lol!
Lovely to meet you.....*virtual handshake*
Vicky
x

 

[ameslouise]

Hi Charlotte!

Good luck on your upcoming surgery. I am 4 weeks post-op and doing great. Having a bag is really not so bad, it makes life easier in so many ways!

I can't answer any of your questions except the one about the epi and yes I did have one and it helped a lot.

I'm not much of a stomach sleeper, but I don't think it woudl be too comfortable with the ostomy. Too much pressure and danger of pulling the bag. I sleep on my side mostly.

Keep us posted! You'll go thru a range of emotions before your surgery probably. Hang in there. The waiting is the hardest part!

- Amy

 

[Terriernut]

Hi Charlotte, welcome to the 'club'. We are very select you know. Many of here are 'cool bag ladies'!

I've not been able to sleep on my stomach. I've had to sleep on my side.

It can take awhile to get over surgery. But if you can have it done lapo, all the better. Mine was emergency, so no. And my recovery was much longer due to that.

Good luck. And sorry that you will join us, but I must say, having an ostomy has allowed me much of my normal life back.

Misty

 

[Terriernut]

I forgot to add, I'm skinny, but my stoma nurse said that being heavier would hide my stoma better. (My left side sticks out big time where Stan is, and I look half preggers) Also I dont know about bag silencers??? I have to put my hand over 'Stan' to make him be quiet. He likes to make noise especially during meetings when things are quiet. Typical male. (sorry guys)
Misty

 

[lotte26]

Wow guys I feel so welcomed!
Hehe. I feel so lucky to have such a cool group to talk to
It might sound weird but I am actually kinda excited about getting a stoma.. I am so over my crohns pain and everything I have almost forgotten what its like to have a normal life.
The reason I asked about tummy is I sleep on my tummy or the side I will be getting the ostomy so that's probably the weirdest thing, changing my sleeping positions.

I guess there is a plus about being a big girl then! I was just worried the bag would get lost in a roll lmao. I'm not absolutely massive or anything I just have a weird shaped tummy that is like a pear.

Are there any other good sites I can check out? I've devoured stomaatje.com and need some more to look at if there are any clothes ones would be good too. I was thinking of buying some tight singlets to wear under clothes - does that help conceal the bag?

xxx

Lotte

 

[lotte26]

Oh and Vicky! Good luck for your op! I hope it goes well! My boyfriend is also an odd socks wearer, occasionally wearing one of mine too! Hhehe

 

[ameslouise]

I just discovered maternity jeans since I got my bag and they are GREAT! So comfortable and you can't tell at all they are maternity jeans!

 

[lotte26]

Oh and another question I had is do they usually staple you up or use stitches to close you up? For some reason I always thought staples were the lazy mens stitches but this may be untrue.

 

[lotte26]

Ooooooo I totally thought about maternity jeans too that's a great idea! I've actually thought about them before as I can hardly wear jeans - as they hurt my tummy.
Thanks

 

[CDDad]

Hi Charlotte,
I've had 3 surgeries and had staples each time. For my last surgery with the butt incision, they used stiches, but those broke open on me.

I don't do it, but I think I could sleep on my tummy. I used to but I stopped doing that after my first surgery and the habit stuck.
I did have an Epi for my proctocolectomy and it is a good thing - but only if you don't like pain! After my 1st surgery, I woke up in terrible pain, so I was wary of that. With the Epi, there was no pain at all.

Like many others here, having an ostomy has greatly improved the quality of my life. No more constant diarrhea, urgency, etc. And never another seton!!!

Good luck to you!

edit - if you haven't been there yet, another good forum is the UOAA forum at:
https://www.ostomy.org/forum/

 

[Nyx]

Hi Charlotte,

I'll throw my answers to your questions in here too...

I sleep on my tummy. Oscar's always being squished, and he seems ok with it! Mind you, I have no output overnight for the most part, so I don't worry about leaks or my bag coming off and making a mess. I also have a colostomy so my stool is normal, very hard and formed, not like an ileostomy where it's much runnier. My bags also lock onto my flange, so I don't worry about them coming off (I can actually pull pretty hard on the bag and it won't release from the flange).

I'm not a bigger girl, so I can't comment on the bigger tummy issue. I'd bring that up with the stoma nurse and your surgeon. They may have ideas about good placement for you.

I've never heard of bag silencers, but I'd be interested in that!! I usually just put my hand over Oscar and hope for the best...lol

I didn't have an epidural before or after my surgery. I just had Demerol and Gravol in IV. I was actually off the pain meds after about 4 days, and I had open surgery. I just went to plain old Tylenol after that...and that was for back spasms, and not incision pain.

I had staples..they didn't bother me at all. Till the last one wouldn't come out and the doctor just yanked on it...lol

Good luck with your surgery..we look forward to having you in our little club

 

[lotte26]

Hey! Wow I didn't realize that a colostomy produced fully formed poo! That must be weird! Not any weirder than a ileostomy though I guess haha.
I hope I can sleep on my tummy it's so comfy! All got to compromise tho don't we
It's interesting to hear about the different pains - I think I am going to ask for an epidural as well though, as I like most people, hate pain lol. Plus I'm a wimp
I can't remember where I saw the bag silencers, I'll go back in my history and try and find them! x

 

[lotte26]

Heres the fart silencer, its called a quiet pouch!

http://www.quietpouch.com/

Gotta wonder if it works tho aye?

 

[Ari]

Hi Charlotte,

Welcome to our world.

The only thing I could add to what's already been said is that I used to love laying on my tummy and I thought I'd never get used to sleeping on my back or side. Well, I wasn't exactly right about it. I think your body will tell you which position is most comfortable for sleeping and you'll be amazed that you can actually sleep on your back or side.

I had staples, didn't have an epidural and I don't have a larger tummy.

Bags have improved the quality of life of so many people over here and I hope yours will do the same.

Good luck with your surgery and a complication free recovery.

 

[ameslouise]

Hi Charlotte - I've had staples in the past, this last surgery was just surgi-tape. My incision was much shorter this time so maybe that's why they went for the surgi-tape.

Not so sure about that bag silencer. Bilbo has let out some loud farts recently (eliciting cries of "Mommmm! Eeew!" from my son) and I don't think any bag cover could completely silence them!

- Ames

 

[Terriernut]

I had staples too.

I'm with Amy on the silencer. Stan is obnoxiously loud when he wants attention. And ALWAYS when it is most inappropriate! Always at work in a quiet environment, usually in front of as many people as possible. The bastard.

Misty