some questions...

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pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/23/2004 2:54 PM (GMT -6)   
First off, I just want to say I admire everyone of you who have had to come to this point with this dreaded disease, not to mention if there are people here who have had to endure any of these types of surgeries due to other reasons besides IBD.

Since 14 yrs(this June) ago, when I was first Dx with crohns and perianal crohns skin tags that were mistook for hemmeroids just shortly before my IBD kicked full blown, my biggest fear was the possibility of having surgery.  Six yrs ago, I was updated to crohns colitis (the crohns basically sitting in the lower colon where UC is typically hanging out)  I will mention, I had a hemmeroidectomy on the skin tags and have never been able to go into remission because of this, the tags are considered unhealed and flared, always causing a flare inside of my body as well.

Please excuse my ignorance, though I've heard things from all kinds of sources.  I cannot help but have a wild and un-vivid imagination about wearing a colstomy bag.  I'm clueless so please bare with me.

Where exactly does this bag stick out of your body from?

Is this the only kind of bag there is?

do they come in different sizes?

can you still bath/swim?

are you limited to wearing loose clothing?

what kind of maintinance is involved and is it costly??

isn't it bothersome when you're trying to sleep?

is it uncomfotable in any way? if so, please explain?

Why do they do a reversal?  what is that all about??

what about during "intimate" times? what's that like?

Anything eles that can be added would be appriciated.  Though I've been told surgery may be an option for me but it wouldn't guarentee a cure like with ulcertive colitis.  I do not have UC, but crohns colitis which is different, as I mentioned above. I'm not sure that I really would be a candidate for this type of procedure, though it's starting to affect me emotionally, fear of leaving the house (because of "accidents", depression/anger, suicidal thoughts(more along the lines of wishing I was dead, actually killing myself is not the appealing part, being dead is) and it's affecting my sleep ( my emtions that is)

Please accept my appologies if I have offended anyone in anyway.  This is not my intent, I just need to know and it's taken me this long to ask people with experiance. 

Take good care and best wishes to each and everyone of you!

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 3/24/2004 8:07 AM (GMT -6)   
Hey PB, glad you could join us here :) Let's see if I can answer some of your questions for you.

"Where exactly does this bag stick out of your body from?"

An ileostomy is usually placed on the right hand side approx a few inches across and below your belly button. Positioning may vary slightly depending on your build, whether the op is an emergency or not, etc. Before the op, a nurse specialising in stoma care will probably interview you and watch you walk, take into account the types of clothes you wear, etc and, accordingly, mark a point on the side of your abdomen for the best site for your stoma.

A colostomy is usually positioned on the left hand side in a similar area.


"Is this the only kind of bag there is?"

There are many different brands of bags out there because there are many different skin types. At first, you'll probably need to experiment with a few to find the best one for you. They come in many different shapes and sizes.

Ileostomates usually use drainable bags so that as the bag becomes full, they just drain it into the loo to empty. Colostomates usually use closed end bags and simply throw away the bag when it's full (this is because output from a colostomy is a lot thicker than output from an ileostomy).


"do they come in different sizes?"

They sure do :)


"can you still bath/swim?"

Absolutely! I was in swimming a month after my ileostomy operation. Bikinis might be out (usually) but the tankinis that are in at the moment work great for a lot of ostomates. If not, a one piece, with a splash of colour or a pattern over the ostomy site disguises any slight bulge that might be there. In 27 years of swimming, no one has ever spotted that I have an ostomy.


"are you limited to wearing loose clothing?"

Nope. In my younger (ie slimmer) days, I wore the tightest jeans possible.

Heck, I even know an exotic dancer who has an ileostomy and she hides it very easily while dancing.


"what kind of maintinance is involved and is it costly??"

I estimate that I spend approx an hour all up a week looking after my ostomy. two minutes to empty it approx 4 - 6 times a day and I change once a week and have that down to 3 minutes flat.

Of course, at first, you'll take a lot more time than that. It's like anything though. The more used to it you become, the quicker you become :)

It's very easy to empty and change. I was doing it all by myself at 10 years of age, so it really can't be that hard :)

As for cost, I can't answer that because in Australia we get all our supplies for free. I do know that in the USA it depends on your insurance as to how much you pay for appliances.


"isn't it bothersome when you're trying to sleep?"

not really. Most people find they can't sleep on their stomach any longer (but with a bit of creative pillow positioning, you can almost do it), but apart from that, you should be fine.

At first you may be up once or twice a night to empty but that usually settles down after a while.

You probably will wake up with the 'Good Year Blimp' on your belly (ie the bag will be full of gas) in the morning but a quick trip to the loo fixes that one.


"is it uncomfotable in any way? if so, please explain?"

At first you'll notice it cos it's new and you'll be very aware of it. Soon though, you'll forget you even have a bag until it's time to empty. It's a matter of getting used to it.


"Why do they do a reversal? what is that all about??"

There's two types of reversals:

1) Reversal meaning back to original plumbing. In this case, the ostomy is done to give the affected bowel a rest and you're reconnected when everything's healed again.

2) Reversal to a j pouch. Meaning the ileostomy is reversed and a j pouch formed. This is an internal type of pouch and you won't have to wear a bag. For more info on the j pouch, try http://www.j-pouch.org


"what about during "intimate" times? what's that like?"

There are many places that sell ostomy lingerie for those times but most people don't bother. A cheap alternative is to buy a tube top. A tube top around the waist and over the ostomy will suffice if you're worried about your partner seeing your ostomy. A lot of people don't even bother with that and just 'push' the bag out of the way (but that's usually only once they gain confidence with the ostomy).

Remember, a lot of times the ostomate 'thinks' that their partner must be bothered by the ostomy because the ostomate themself is. You can't predict what a partner will think and shouldn't assume. Most times, partners will be curious about what an ostomy is, will ask questions, ie 'can I hurt it', etc but ultimately, it's you they want. No where in personal ads have I ever seen 'must be loyal, friendly and poop via their anus and rectum.' How you poop is simply not a criteria most people base a relationship on and if they do, then I doubt you'd really want to be with them anyway.


Hope this helps matie.

Shaz

http://www.ostomates.org
I'm not a complete idiot - some parts are missing!

Last Edited : 3/24/2004 7:15:39 AM GMT


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/24/2004 2:41 PM (GMT -6)   
Hi Shaz,

Thank you so much for answering my questions, and making it easier for me to understand.

One thing I forgot to ask, Do you have problems with getting alot or even a few infections from wearing a bag?

Thanks again, hope you're well, take good care!

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 3/24/2004 9:00 PM (GMT -6)   
I've never had any infections at all and haven't really heard of ileostomates or colostomates getting them (urostomates can and do get bladder infections a bit). Sometimes, the skin around my stoma will get irritated from leakage (rare) but that's usually easily cleared up with the use of EAkin Seals in my case and by the next change time, the irritation is gone.

Until you find the right appliance type for your skin, you might get a bit of skin irritation but after every thing is sorted out, it should be plain sailing.

http://www.ostomates.org
I'm not a complete idiot - some parts are missing!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/25/2004 3:13 PM (GMT -6)   
Hi again and thanks Shaz,

Do you "snap" the bag to something that's attached to your body, or does it screw on like a cap?

Are you limited to not being able to drink sodas and eat nuts and jelly beans ect???

Sorry, these are ones I forgot to ask earlier, I know they sound stupider as I go, sorry.

Take care!

iliobob
New Member


Date Joined Mar 2004
Total Posts : 14
   Posted 3/25/2004 10:44 PM (GMT -6)   
pb

I am still sorta new to this, but I can help you with this.

First off, the only stupid question is one that is not asked. I was totaly ignorant of the care and feeding of a stoma and an ostomy bag at christmas, yet by the end of january, Ta daa, I had one.  Some of the biggest problems I have had in adjusting to having a bag were directly related to misconceptions and ignorance on my own part.  You are doing the right thing by asking these questions.  Belive me, my own adjustment would have been a lot smoother had i found sites like this one and asked a bunch of questions.

There are a number of different ways of attaching the bag.  There are one piece appliances that attach directly to the area around the stoma via an adhisive cloth patch.  When it is time to change the bag, you just peel it off, clean the stoma and the area around the stoma, apply some stuff that protects the skin from the adhisive, then pop on a new bag.

I personally use a two piece appliance.  It is attached the same way that the one piece is attached except that it is simply a flat or convex (dependant on the type of stoma you have) flange.  It has a round hole for the stoma to come through, and a tupper ware like seal around the edge.  The bags come w/ a matching seal that simply clicks or snaps into place. I find it a lot easier to change the bag by way of the seal, rather than changing the entire adisive patch.  I have also heard that this also reduces iritation as removing the patch can be a bit like pulling off a very large bandaid, or piece of tape. 

As to diet, everyone is different.  I found out just today that I shouldnt eat mushrooms, as they can swell in the digestive system and cause a blockage.  I have been eating spaggeti, w/ mushrooms, twice a week now since my surgery back in january, w/ no problems at all.  Personally , the only problem I have had was the day that all i ate all day was three bowls of shredded wheat.  I spent the evening drinking as much water as I could trying to avoid dehydration and blockage.  The firs month or so after your surgery the Drs will tell you what you can and can not eat.  Heed their warnings.  It will take a number of weeks for things to settle down w/ your stoma, then you can CARFULLY start introducing new foods to see how you react to them.  Just remember to chew all your food well and drink lots of water.

Hope this helps

Bob




pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/25/2004 11:04 PM (GMT -6)   
Thanks Bob and thanks again to you Shaz.

Like I mentioned, I doubt this will be an option for me, but you never know what reason there might be for having this type of surgery. I want to be well informed, just incase.

I have alot of quirky things about myself, I don't know how I would handle getting used to it. When I was 8 yrs old I had this obsession of always pulling up one side of my undies and or pants otherwise I felt like my left side was lower than the right. It never was, only in my head it was. I went on like that until I was 12 yrs old, from time to time switching the sides. Crazy I know, I beleive I have some obsessive compulsion problems. I cannot live without lip balm, I wake up in the night to put it on, I don't sleep well as is, without adding this to my many strange quirks. I couldn't sleep with PJ's for yrs, getting all twisted in them drove me insane. Now, I can't stand my bare legs or any bare body parts touching eachother when I'm trying to sleep. I'm a mess. Anyways I could just imagine how insanely uncomfortable I would be with a bag on me expecially 24 hrs a day. It's part of the reason I fear of having to wear one. I'm so insane, I doubt I could ever get used to it. Not to mention, I never know what will irritate me next.

Thanks and take care!

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 3/26/2004 6:09 AM (GMT -6)   
pb, Bob gave you some good answers there :)

I will reiterate what he has said about diet - everyone is different! I can eat anything I like (and it shows!) without a problem - I've never had a blockage in my ileo's 27 year history. Others find that things such as peanuts or corn can cause blockages. The key is to add one new thing to your diet at a time and CHEW! CHEW! CHEW! That way, if it does affect you adversely, you know to either limit it or avoid it in the future. Just because a certain food causes problems for one person DOES NOT mean it will cause problems for another.

The only thing about drinking sodas is that it causes gas. This really isn't a problem - you just release it (in the loo preferably unless you're alone in the house - the smell can be lethal!). Most people don't find this side effect bad enough to stop drinking sodas (or beer!) lol
I'm not a complete idiot - some parts are missing!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/26/2004 2:30 PM (GMT -6)   
Thanks again Shaz!!

best wishes and take good care! :)
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