many questions- please help!

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 8/11/2007 8:10 AM (GMT -6)   
Hi everyone- I usually post on the UC forum, but am seriously considering surgery & I need your help. I was diagnosed in '02, & have been on every med available with the exception of Humira- we may try that if my next Remicade infusion (scheduled for 8/20) does not yield immediate results. I'm currently flaring & am on Cipro to see if that will help with it. I am leaning to a permanent ostomy- I don't think I could handle 2 or more surgeries, & don't want the potential problems a j-pouch can have- pouchitis, leakage, etc. To me, that's not much improvement. Anyway- do any of you drink beer? Is it possible to have a couple w/out your bag blowing up with gas? And how does one "burp their bag"? I imagine you open the top & let the gas escape- it this so? Did you have to try many different types before finding one that suits you? And when you take a shower, do you leave the bag on? Does it get wet? How often do you change the actual bag, once a week or so? And the wafer stays on longer, or is it the other way around? What about the smell- I've heard of using benzoyl peroxide, or those drops that manufacturers sell? And how long did it take before you were %100 comfortable with the bag- changing it, emptying it, etc? Do you open the bag from the bottom to empty it? And are all of you happy with the choice you made- do any of you wish you had gotten a j-pouch, or for the ones with a j-pouch, do you ever wish you had a permanent bag? Please help me with this- my GI doc wants me to make an appt. with the surgeon for a consult, but I know that all of you provide just as much info if not more. I'm pretty familiar with the technical aspects of surgery, but not the nuts & bolts, so to speak. And speaking of nuts, were you eating mushy bland foods for a while? Any info would be great- I don't have the internet at hyome, so check it while at work. I won't be able to check the board again 'til Monday or Tuesday, but please give me some answers! Thank you SO much!!!!! Also- I forgot to add that my doctor recommended Dr. David Schoetz at the Lahey Clinic in Burlington Mass.- I live on Cape Cod. If any of you have been to the Lahey CLinic, how was it?  Or any other doctors in Massachusetts.


diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day

Post Edited (Eva Lou) : 8/11/2007 8:18:31 AM (GMT-6)


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/11/2007 10:15 AM (GMT -6)   
Eva,

I wish I had answers for you but I don't. I do not have a bag...yet. I am in the hospital awaiting a surgery. You can find many of the answers you need by searching the topics of this forum. There is one topic called THE MATE this is a spouse trying to learn as much as she can about her spouse's bag and how to care for it. There are many, many other topics that will answer most of your questions. Take some time and read through the different forums; I am sure you will be amazed.

Take care,
Amey

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/11/2007 6:36 PM (GMT -6)   
Eva,
I hope the Remicade works for you. Here are some answers to your questions:

Do any of you drink beer?
Yes, you can drink beer with an ostomy.

And how does one "burp their bag"? From the top?
My bags only open from the bottom, so I just open it and empty it.

Did you have to try many different types before finding one that suits you?
No, I liked the samples they gave me in the hospital, so I've never tried anything else.

And when you take a shower, do you leave the bag on?
Yes, and you can swim for hours in the ocean or pool without the adhesive wafer coming off.

How often do you change the actual bag, once a week or so?
I keep the wafer on for 7 days, and put on a new bag every 3-4 days.

I've heard of using benzoyl peroxide, or those drops that manufacturers sell?
Actually, it's hydrogen peroxide, and I put a capful in each time I empty. I've also used the other drops, but they are more expensive.

And how long did it take before you were 100% comfortable with the bag?
Fairly quickly.

Do you open the bag from the bottom to empty it?
Yes. It has velcro opening at the bottom.

And are all of you happy with the choice you made?
My rectum was diseased with Crohn's, so an ileostomy was my only choice, and I'm very happy with it.

Can you eat nuts? Yes, I can eat everything with no problems!
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.

Pain-free, med-free, and happy to be healthy again :)

Post Edited (flchurchlady) : 8/12/2007 8:01:37 AM (GMT-6)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/11/2007 8:38 PM (GMT -6)   
I can't answer the beer question, don't drink it, but I do drink sodas, and i don't have that much trouble, takign gas-x helps, but you will have some gas, at first you will have ALOT, but it will subside over the first month or so, i don't usually have that much trouble with it. I have a two piece bag so i just pull the top back a tiny bit and let the air out. Although I usually just empty it, the only time I do that is in the middle of the night, or when i put my clothes on, there is always just a tiny bit of air, so i let it out.
As for the smell, i was told not to use peroxide, to use mouthwash, i tired it, didnt seem to do much. So if I am at home, i don't really worry too much about it, if I go out i put those gel tabs in and that helps. It doesn't smell as bad, or take as long, as going to the batrhoom the other way,lol.
The frist week or so you will eat bland mushy foods, but that's probably all you will want! The day i got home from the hopstial i ate a pan of ravoli, and a week later i was eating fries and hamburgers. HOwever DO NOT eat pizza, lol, i learned that the hard way. Wait a while before you do that. Try to eat just alittle of a new food, if it is something that can cause gas or something like that.
I leave mine on in the shower, i fold the bottom up and tape it and then put glad press and seal around the area, then tape that off, and it stays pretty dry. Then i just wash around it with a washcloth afterwards. So it all gets clean.
I had been able to wear the whole thing for about 6-7 days, but i got an itchy spot and wouldnt' leave it alone, so now it's all irriated so i am changing about every 4 days. I am comfortable with it, but my husband usually helps me change it, it's just easier that way.
Like they said it emptys from the bottom, you just open the velcor, or the clip and let it out, then clean it out with toilet paper or a spray bottle works best and then close it back up. I always clean the outside of the tail with some mouthwash, just to kill those germs!
I am very happy with my decsions, i had UC for 8 years, i tried remicade too, and it didnt' work for long. There were times when i first got the bag the frist two weeks, when i was just really depressed about it, but when i went back to my dr for the fist visit, and i didnt' ahve to worry about the ride, and where the bathrooms were and all that, it was so great, that after that i have pretty much been happy! there are times when I think it's kind of weird, but for the most part i don't even think about it. I worked today and for most of the day, i forgot it was even there. Before when i worked, all i could do was watch the bathroom and hope noone was in there if i had to go!
I can't tell you the nuts and bolts of the surgery, i just know they make a big cut and take it out, and then you feel better afterwards!

I chose the perm ileo for the same reason you are talking about, the j-pouch can have problems, this can't.
good luck! this site helped me alot too

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 8/13/2007 8:54 AM (GMT -6)   
thanks so much everyone---- in some ways I'm eager to have surgery just to be finally be done with stupid UC. I haven't made any decisions yet- I plan to see if the upcoming Remicade infusion helps for more than a week or so. But based on past experience, I'll most likely be going to Burlington! Stacie- I probably will email you directly for more info on the Lahey itself, if I do wind up making the consult appt. Thanks again!!!!!

diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Cipro- 2 tabs/day


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 8/14/2007 4:25 AM (GMT -6)   
do any of you drink beer?
 
I hate beer (and I'm an Aussie - go figure lol) but I love Baileys yumm.  I know that doesn't have bubbles but Pepsi and other soft drinks do and I drink those without a problem. It might give me some extra gas but hey, I either just burp or empty it, no problem really.
 
And how does one "burp their bag"?
 
Usually those with a two piece bag, separate the bag from the wafer at the top and let the gas out. Those of us with a one piece bag just open the tail end to let the gas out.  Warning:  DO NOT do this in company - the odourous results can be lethal!
 
Did you have to try many different types before finding one that suits you?
 
Some do, some don't. A lot of people are lucky enough to find a system that works for them straight away, for others it can sometimes take a bit longer.
 
And when you take a shower, do you leave the bag on?
 
Again, some do and some don't. I leave my bag on most days during my shower except when I change - then I take it all off and shower with a naked stoma. If my stoma 'works' during my shower it all goes down the drain anyway. Some don't like the idea of pooping in the shower however and never shower without their bag on. It's personal preference.
 
If I leave my bag on, I just towel dry it after I hop out. Body heat usually gets rid of any excess moisture pretty quickly.
 
How often do you change the actual bag, once a week or so?
 
Like everything else regarding stoma care, this is sooooo individual. Average weartime is about 3 - 4 days. Some people can't go that long but others can go longer. You'll work out what the optimum weartime is for you.
 
And the wafer stays on longer, or is it the other way around?
 
If you wear a one piece bag, the whole thing must come off since the wafer is attached to the bag part.
 
If you wear a two piece bag, you can leave the wafer on if it's still viable and simply change to a new bag.
 
What about the smell- I've heard of using benzoyl peroxide, or those drops that manufacturers sell?
 
I LOVE 3% Hydrogen Peroxide. Ostomy odour can be lethal (as mentioned above) but since using HP I've had no odour at all. There are various ostomy deodorisers available from manufacturers but since they are aimed solely at the ostomy market, they're a lot more expensive than HP.
 
And how long did it take before you were %100 comfortable with the bag- changing it, emptying it, etc?
 
I was changing my bag by myself once I got home from hospital - but I was 10 years old and kids are a lot more resiliant than adults and just do it (I was also in the pool swimming 1 month after surgery - something a lot of adults wouldn't even contemplate!)  That very first time you change by yourself, you'll probably be nervous but you'll be so proud of yourself. It's the first step towards becoming independent again :)
 
Do you open the bag from the bottom to empty it?
 
Yep, bag usually have either a clip or a velcro closure at the bottom of the bag for ileostomates so we can drain poop into the loo. For colostomates, they have the option of using closed end bags which means they just change the entire bag rather than drain since their stool can be a lot more solid than ileostomy output and doesn't drain as easily. Of course, ileostomates have the option of using the closed end bags too (I know of at least one who prefers it) but to my mind it's a lot easier draining it than changing the bag all the time.
 
And are all of you happy with the choice you made- do any of you wish you had gotten a j-pouch, or for the ones with a j-pouch, do you ever wish you had a permanent bag?
 
When I had surgery 31 years ago, the j pouch was still very new and my rectum and anus had to be removed a year after my ileo surgery (nowadays they would probably have just scraped the rectal lining out and left everything intact so j pouch surgery would have been a possibility for me, but back then the technique was unknown).  However, I am completely happy with my ileo and wouldn't trade it back for UC for all the money in the world.
 
Would I have j pouch surgery if I could? Probably not. I really don't want more surgery to trade something that isn't broken for something that will probably work out well but mightn't lol
 
And speaking of nuts, were you eating mushy bland foods for a while?
 
You will probably eat bland foods for the first couple of weeks or so but once you have healed, you can start introducing new foods into your diet, one at a time.  I can eat anything I want without a problem (and it shows!).
 
Hope this helps :)
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/14/2007 5:01 AM (GMT -6)   
Wow - I feel like I learn something new every day! I never knew how to "burp" a bag, until I just read Shaz's description. It makes sense! I'm going to give it a try. (But not nono in a public place skull if I don't have deodorizer in the bag) tongue

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 8/14/2007 11:57 AM (GMT -6)   

I can't even begin to tell you people how much better you make me feel! The thought of surgery is a bit of a head trip, to say the least!!! But getting such good info from everyone here makes a huge difference. I have one more Remicade infusion next Monday & I am going to get it, then see how it goes after that. I really think surgery is the next step though. I'm looking forward to it, almost, at this point.


diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Cipro- 2 tabs/day

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