My mate just got an ostomy

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THE MATE
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Date Joined Jul 2007
Total Posts : 17
   Posted 7/18/2007 4:21 PM (GMT -6)   
   My hubby was diagnosed with rectal cancer in April.  He took chemo and radiation treatments, waited a month and then had his surgery.   They removed the tumor successfully and got him reattached.....so he has this iliostomy at present.   we are waiting on the doctors to consult over whether he needs followup chemo or whether he will be reconnected in a couple of months.    We certainly have had the rug pulled from under us the last few months....but it seems we have been very fortunate at the same time.   We are both very positive, but I can see that my hub is a bit down over the reality of this bag.   I am trying hard to talk positive, which is hard when I know hardly nothing about living with an ostomy.  his bag is tight with gas most of the time.   He has an incision from way above the naval to his pubic area...he is so sore he can't get in the positions to empty his bag or apply a new one.   I am his primary care giver at this point.   I don't mind at all....but I need help to answer the questions that I can see on his face.    We received care instruction at the hospital but that is 2 hours away from where we live.
    Is constant gas and burping of the bag normal at this point???   please tell me it will pass (no pun intended)  Hubby's stomach is so tender because of his incision that he can't stand to try to wear anything other than a pr of loose pajama pants....his bag is quite obvious, always full of gas and when we burp the bag the smell is rather awful.  I am mixing a couple of ounces of plain bath oil with water and squirting it in the bag before emptying...then we squirt a bit more in the rinsed out bag before closing.    The last time we emptied it, we tried a  capful of listerine (which I read about on here).        I was told there was a "vented" bag which lets the air escape but not the odor???  have any of you tried those and how successful are they?   His stoma is still quite swollen and at times it's "very" active.....and of course you never know when  He is mostly lying propped up in bed at this point, with several short walks a day.  he is on solid food and improving quickly, but we are sure clumsy and ignorant about all this.   He has a two part bag and a security belt.   I would like to get him some sort of pouch to cover his bag, it's clear and it is gross looking if anyone sees it.    and it seems continually full of gas and very obvious under his t-shirt.  It seems too high to tuck in his underwear?  of course his incision is awfully tender at present so even trying to wear normal clothing is out of the question.
     Friends come to visit and I can tell he is very aware of his bag and it's pretty obvious he has one...... how can I help him deal with this better?
    I hope it's ok for me to post here....he is a 69 year old farmer that would never post on a computer forum LOL.   It has made me feel better just finding a place where other people talk about ostomies.   No one we know has one.
                   Katy

Glad Bag
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Date Joined Mar 2007
Total Posts : 699
   Posted 7/18/2007 7:36 PM (GMT -6)   
you are wonderful. bless you for helping your husband when he needs u most....

he will get more adjuster over time.....and maybe the gas will subside......

i would go on, but if you read through some of the other posts, all your questions will find answers....

once the wounds heal, things feel a lot better......

i myself had a different kind of ostomy (ileostomy) so my experience is different, plus i am a 30 year old city boy (ok, suburbs, but 30 minutes from hollywood!)

I wish your husband the best of luck.....as you mentioned though, he is very fortunate.....many people live with more severe problems their whole lives....

stay with him and make sure you tell him it is a bigger deal to him than to you (and others).....that was helpful to me when the girl i was with let me know i tended to make a bigger deal out of it then she did.

it's an adjustment, but the alternative is far more unpleasant.....
Save yourselves.....do something crazy! download videochat from camfrog.com
my id is: natglad1 i'll see you in cyberspace..also find me on myspace.com/nathanael_glad aka Ned Flanders
****oh, yeah....my illness/symptoms/progression....ummm...it sucks....let's just say I put the "Bag" in "GladBag" ok! / diagnosed at age 15, i have made it to 30 now (yeehaw), temp. ileostomy 4/20/07 due to multiple, persistent fistulas of the worst imaginable variety....any fistula sucks if you ask me..but now that I had surgery....I am loving live..for the most part..if I could only find a new girlfriend


awesomeame
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Date Joined Feb 2006
Total Posts : 625
   Posted 7/18/2007 9:17 PM (GMT -6)   
yes, there are vented bags you can buy which let the gases escape, with no odor...but the filters which let the gasses out get plugged easily. personally if i get 2hrs out of a filter without it plugging up that's pretty suprising!

you can buy cloth covered bags from any of the major manufacturers. that way you don't see the contents of the bag. of course there's a cost premium on these...but they really are very nice. lock-and-roll style tails are very nice too, much easier to open up to clean

as for the bag and clothing, that's kinda something you need to figure out with him, to see what works. there are many different sizes and styles of bags out there, and all the manufacturers will send you free samples to try. some people put the pants belt above the stoma, others below. i wear my belt on my hips wearing hiphugger pants, then a buttonup shirt NOT tucked in with a minibag. seems to work for me. the shirt usually hangs 1-2" lower then the tail of the bag. honestly it's really something you need to experiment with, and it'll take a lot of changing into and out of things to figure it out...i threw out a lot of clothes, and also had some clothes custom made. (any good tailors will have experience with this situation, don't be shy) once you get this stuff figured out no one will know he has the bag unless he tells them. seriously. i have to add, i find wearing button-style shirts with a pattern really does help hide the bag. t-shirts or plain colored button shirts show off the bag the most. but still, unless he tells ppl about it, they won't know. he'll be much more concious about it then anyone else. i've gone to the store wearing a tshirt that really shows the outline of the bag and no-one was the wiser. i've found that even after you tell someone, no one really seems to care anyways!!

i would say all the gas is pretty nomal. 7 months after my surgery and my gas has pretty much subsided, but if i drink anything carbonated i will definitely get a lot of gas. but really, who cares. burping is no big deal...and if he were to wear a minibag like me he would have to empty it every 2hrs at least, which would also get rid of the gases.

anyway i hope this helps, goodluck

--matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


THE MATE
New Member


Date Joined Jul 2007
Total Posts : 17
   Posted 7/19/2007 7:42 AM (GMT -6)   
Thanks so much for your replies.
I guess the bag doesn't actually worry "me"....but I can tell it's worrying him...and that worries me...and we live in a very small town...everyone knows everyone type situation.....so the whole community knows what has happened to him. (small town gossip chain LOL) I told him this morning not to be discouraged, when his incision heals more and the soreness from all that subsides, he will be fine and can begin to deal more with the ostomy himself. I realize that at this point he feels awfully dependent on me to help him......I need to work on turning the responsibility slowly over to him. and he too has the ileostomy, on the right hand side.........and the plan is to reconnect, after additional chemo or perhaps sooner if they think the followup isn't needed, so in that we are lucky.
the gas and the smell is a real issue for him. the listerine helped I thought. he didn't think it helped that much. I am going to try a cap full of the peroxide and see if that helps better.
again thanks to you for responding.....that in itself gives me instant relief of some sort....it's hard to explain. I am still reeling from all this.
Katy

sewwatgirl
New Member


Date Joined May 2007
Total Posts : 9
   Posted 7/21/2007 9:36 AM (GMT -6)   

Hi I use peroxide to ward off the odor.  I purchased a plastic bottle with a long tip, I got it in the cake decorating aisle in Walmart :-) I just squirt 2 squirts in my bag after emptying and rinsing it out.  I wear the two piece system from Convatec and they have opaque bags that work well to hide the contents.I use regular Peroxide that I also purchased in Walmarts -a large bottle for $.97.

Virginia


THE MATE
New Member


Date Joined Jul 2007
Total Posts : 17
   Posted 7/21/2007 12:24 PM (GMT -6)   
   I got peroxide.....we also tried the mouthwash.....it helped....this time I put some peroxide in the bag when we were done.
    Hubby's incision looks better today.....it's still draining clear from around his naval.   he is sewed up from his breast bone to his pubic bone.   I am incouraged by the looks of it....better than yesterday.    he took a shower yesterday and this morning also.     Today I think he seems rather despondant.  He tells me he is fine....but there is no spark in his eye.    I am a wreck....waiting on him and hovering till I know he wants to scream (but that's not his way)   all his vitals are fine....he is passing stool, eating and drinking, although his appetite has fallen way off and I can't seem to tempt him with what used to be his favorites.   he doesn't sleep well at night and seems pretty weak.   I guess the pain meds in the hospital were prolly a lot better than what we have here at home.
    did any of the rest of you have a major surgery like this when you got your ostomy???   I am just being a worry wart I know.   Our kids are coming tomorrow....perhaps that will perk him up.   Then we make the trip back to the doctor monday.  hopefully that will relieve some of my worrying.   Did the rest of you suffer from depression in the beginning?
    and thanks so much for the replies, the hints, etc.    Talking to other osties helps way way more that just talking to friends who know nothing about what hub is going through.
     God bless you all
             Katy
p.s.   His gas seems a bit less....I got him gas-x

Post Edited (THE MATE) : 7/21/2007 12:31:06 PM (GMT-6)


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 7/21/2007 12:58 PM (GMT -6)   
I found this product while I still had my temp ileostomy. The website I found it at is http://www.exmed.net/default.asp?a=b scroll down and click on ostomy. That brings up different companies prodcuts in alphabetical order. click on Nu-Hope Ostomy. there are 3 items on the page this item is the last one. The price will vary on the size needed. On this site as well as the ostomy companies sites they sell products to be used for odor in the bag. I found the 3M drops worked well but I hear they stopped the production on it other companies have there own brands though.

Nu-Hope Fabric Pouch Support

more info...
With built in pocket; serves as a cloth cover. Safe retention of all types of ostomy and drainage bags. Easy to use and gives extra security during physical activity. Washable.


Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 

Post Edited (dragonfly137927) : 7/21/2007 7:45:05 PM (GMT-6)


THE MATE
New Member


Date Joined Jul 2007
Total Posts : 17
   Posted 7/21/2007 5:40 PM (GMT -6)   
...My sister in law came this afternoon.....brought muskmelons with her.....Hubby loves those.....we ate most of one.......we watched a movie and this evening we all went to our church to an ice cream social. Hub got along well and visited with all our church family.....it helped him a lot! tomorrow the kids come....and the grandkids.....that will help too.
thanks for the info dragonfly
Katy

sewwatgirl
New Member


Date Joined May 2007
Total Posts : 9
   Posted 7/21/2007 6:39 PM (GMT -6)   

I had emergency exploratory surgery when I had my colectomy and now have a permanent ileostomy.  I was sent home with an open wound from just under my breast to my pubic area and had a wound vac on for 3 mos. so I know how he feels.  I think depression is inevitable after such traumatic surgery but it is good he is getting out and seeing people.  The more his mind is occupied with others the less he'll have time to dwell on his situation.  My husband suffers from depression (no surgery) and he seems to do better when I get him to get involved with others.  I had my surgery last Oct. and am still learning little tricks to cope.  You and hubby will be fine and know you're not alone.

Virginia


THE MATE
New Member


Date Joined Jul 2007
Total Posts : 17
   Posted 7/21/2007 6:45 PM (GMT -6)   
thank you Virginia....this board is a great place....so glad I found it. I posted on another one before this one and didn't feel so welcome.....people here are certainly friendly. and yes, it's always better to find others to think about or help. and there are so many people that need help and understanding. I know we are very fortunate. thanks again
Katy

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/21/2007 8:32 PM (GMT -6)   
First off, I am so sorry you're husband is having such a time, and it's great for you to be so supportive, some people would not.  My husband has been great, I have been lucky, in fact, three months post surgery, he is still the one that changes  my bag for me. 
Anyway, the gas should go away, mine went away after about 3 weeks, have him take gas-x that should help some.  I like to try to eat fries or something kind of starchy, that seems to slow down the output.  Having bags with cloth will probably help more than anything, I was so grossed out having to look at that stuff!  Plus at first it's really nasty looking, it will change color and consitenicy (sp) after a while, and it will not smell quite as bad!  I put those gel tabs in when I go someplace, they help alot.  It's a little harder to clean it out, but they help it to not bulge.  As for clothes, for about a month I couldn't stand to wear anything, and my stomach is still tender, not too bad, but until just recently sometimes it would hurt just to have a t-shirt rub on it.
I can wear my old clothes, but I right now I am wearing a 10 instead of an 8, it is bigger on me but it seems to be better for me, I just tuck the bottom of the bag into my undies, and then wear a regular shirt, my shirts usually come down a fairly good ways. But they don't cover the whole area the bag is in.  I also put some mouthwash in there, but haven't found it really does anything, however i do use it to clean the tail, helps with the germs!
 

THE MATE
New Member


Date Joined Jul 2007
Total Posts : 17
   Posted 7/21/2007 8:54 PM (GMT -6)   
well I just can't imagine not supporting him. I love him no matter WHAT condition he is in. Yes, this is stressful.....but good grief, I am still operating normally....I feel nothing but the most compassion for him. I try to not be put off by this at all...and truthfully, I am not.....he needs me and there is no question of me not being there. I can't imagine the sadness of having a nonsupportive mate. My prayers go to all who are in this situation.
I feed him the foods that are supposed to give the waste more constancy, but the doctor also has him on a stool softner....his waste is pretty much liquid at present. One day after we got home, eating puddings, potatoes, it was thicker...the the stool softners started and it's mostly liquid these last couple of days. We are in horror of him getting stopped up.....they seemed to stress that at the hospital. I am afraid to feed him all sorts of stuff, they listed so may things that he should avoid.....but I see on the forums that people with osties eat almost anything? Sounds like chewing the food really well is important. I am making a list of questions for the doctors on monday.
we have some cloth? covered opaque bags from hollister and we are going to try one of those at the next change. they look much much nicer that what the hospital sent home with us.
I have more confidence when hub is feeling better of course :} and talking with all of you helps immensely. thanks
katy
Katy

flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 7/22/2007 6:20 AM (GMT -6)   
Katy,
God bless you for being such a supportive wife. You are truly a Proverbs 31 woman! I've had an ileostomy for over a year and am blessed to have a supportive husband. It makes ALL the difference in the world!

I agree with the tips that others have posted. I use the Coloplast opaque cover pouch with EasiClose. It has a cloth cover, so you don't see what's inside, and a velcro opening at the bottom for easy drainage. I also put in a few capfuls of hydrogen peroxide each time I empty it. It's an inexpensive deodorizer and works really well.

When it comes to minimizing gas, I've learned over time which foods are more gas producing than others. Beans, broccoli, cabbage, onions, and carbonated beverages are the culprits for me. I still eat them, but know what's coming afterward! Gas-X and Bean-O work well to minimize the gas.

I've never had an issue with my ileostomy clogging, and I eat everything under the sun! I would talk to your doctor about how long he wants your husband to stay on the stool softeners. In the meantime, foods and supplements high in Fiber will help thicken the stool when the output is liquid. And make sure he's drinking plenty of water, so he doesn't get dehydrated.

When it comes to clothing, a button down shirt that's roomy and untucked will hide the bag. Once he's healed up from the surgery, he'll be able to wear jeans again. And, if he's a farmer, he must have a couple of pairs of overalls in his closet. Now those would be perfect!! :)

I'm glad that you have family visiting and a church family in town. It's so important to be around supportive people who love you and to get together with them and have fun! It helps take your mind off of other things.

Most of all, we have God Who loves, guides, protects, supports, and heals us. He never promised that we would be spared trouble in life, but He did promise that He would be with us as we go through it. I will keep you both lifted up in prayer.

Cecilia
Dx'd w/ Crohn's in '99 at age 28.

After 7 years of trying every med and diet on the market to achieve remission, nothing worked.

Finally had proctocolectomy and ileostomy surgery in '06 and am loving it.

I'm pain-free, med-free, and am very thankful to be healthy again.


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/22/2007 10:10 AM (GMT -6)   
I live in a very small town too, and it is hard to keep a secret, lol. But it can be good, because you can get support from people too.
I eat most stuff, but for the first 6 weeks you are supposed to be careful. I get terrified of a blockage too, so I cut things like lettuce into little pieces, and take small bites. Also, if for some reason I think there isn't enough output I start chugging water like crazy!

awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 7/22/2007 3:01 PM (GMT -6)   
THE MATE said...
   Did the rest of you suffer from depression in the beginning?
   
i did NOT.  however, my family doctor says i'm his first permanent ostomy patient that he hasn't had to perscribe depression meds for or send for councilling.  he can't figure me out!  so NOT being depressed i guess is few & far between.  once the pain from the surgery is gone, life starts scool and if your husband is in pain, tell the doctor about it.  i was on dilaudid (stronger then morphine) for about 1-1/2 months after the surgery.  but be aware strong stuff like that is habit forming, and you WILL go through brutal withdrawl.  but the withdrawl is better then being in pain!
 
--matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


THE MATE
New Member


Date Joined Jul 2007
Total Posts : 17
   Posted 7/22/2007 8:58 PM (GMT -6)   
kids being here helped.....peroxide CERTAINLY helps!! LOL such a simple thing and also so inexpensive! showers are over...tomorrow we head out to the doc. that is 2 hrs both ways....

and let me say....being held in prayer is just great....we appreciate all of that we can get.....lately we have been awfully busy giving "thanks". We feel awfully blessed at the outcome of all this so far and we know the Lord is with us no matter what we face. hubby's pain was better today...his gas was much better too. today was just a good day all 'round

I am so glad to have found this place.
have a good night's rest all of you
katy
 
p.s.   my hub hates overalls....I have always thought he should try them....but he hates them......maybe he might have a different opinion of them these days....hummmmm????  it's a thought

Post Edited (THE MATE) : 7/22/2007 9:00:38 PM (GMT-6)


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/22/2007 10:03 PM (GMT -6)   
they told me to wear overalls at first also, and I said no way! I look like a pumpkin in them, i am way to short for overalls! OT for a minute, but while I was pregnant, my Sister in law and mother in law bought me a bunch of overalls, becuase they said, all pregnant women should wear overalls. Although when my sister in law was pregnat, she didn't wear them!
Anyway, i wasn't depressed either, not about the ostomy anyway, I was sad because my little boy was living at my grandma's while i was recovering and he was kind of scared of me, honestly i was happy to have it. The first time i really reazlied how great it was was when I went to my first drs appt, about an hour and a half away, and i didn't worry about where the bathrooms were, I didn't worry if there would be a traffic jam (it was kind of sucky that i had to wear baggy clothes, lol) and on the way home I actually got to eat in the car, without worry. That particular day made me realize how great it was to not be sick and even to have the bag!

flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 7/23/2007 2:39 PM (GMT -6)   
I was never depressed after my ileostomy surgery either. By the time I had the proctocolectomy, I was ready to be done with the pain and having to put my life on hold every time my colon flared, which was quite often.

Looking back at what I went through with Crohn's, I probably should have been depressed, but it's always been my nature to be positive and try to find the good in every situation. So, that's what I did. I was also blessed to have an understanding and supportive husband, and family, friends, and co-workers (I work at a church), so they really encouraged me and took good care of me while I was sick and even now that I have the ileostomy.

On the subject of clothing~ I also have never liked the way I look in overalls, so I refuse to wear them, too! I wasn't sure if it was different for men, but I've never found them to be flattering for women. Lately, I'm into wearing those umpire-waisted tops, which cover everything nicely all the way down to my hips. Since I've been healthy, I probably gained 20 pounds, so I'm trying to get used to having curves again :)
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 7/23/2007 2:57 PM (GMT -6)   
Katy,
I'm so glad that the peroxide worked and that your husband had a good day yesterday! Hope all goes well at the doctor's office today and after driving 4 hours round-trip, he takes some time to talk with you and answer your questions. I'm glad that you two are thankful and feel blessed. Every day will get better.
Cecilia

THE MATE
New Member


Date Joined Jul 2007
Total Posts : 17
   Posted 7/23/2007 4:00 PM (GMT -6)   
We had a great day. The trip didn't seem too hard at all. Got staples out.....and some little thingie that was attached to the ostomy? he didn't realize those things were pulling till they were gone! Doc answered all our questions. Hub looks to be cancer free, but we are going to go with the followup chemo......better overkill than to take any chance we figure. We heard from a new friend we made during radiation and she has been declared cancer free......whoohoooo a day of good news all around.
we celebrated at McDonalds on the way home LOL
Katy

flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 7/23/2007 7:12 PM (GMT -6)   
I'm celebrating with you!
Cecilia

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/23/2007 8:58 PM (GMT -6)   
That is great news! I hope he keeps getting better quickly!

Side note though, don't let him eat pizza anytime soon! I made the mistake of eating pizza about two weeks after my surgery and I was so sick!

THE MATE
New Member


Date Joined Jul 2007
Total Posts : 17
   Posted 7/24/2007 8:01 PM (GMT -6)   
ah no...no pizza anytime soon.....we don't eat that much anyway. mostly meat and taters.....he loves corn which they said to avoid....and cabbage which is one of his favs...:( oh well, it isn't the end of the world. all dairy is ok...and we love all of that. he is moving better each day.....he just says he has a hurt that won't quite leave him. but being cut from stem to stern is bound to take some time to get well....I tole him good grief...it isn't even two weeks.....have a bit of patience for the sake of a cow. men! LOL
I have gotten on line and applied for all sorts of osty samples....they are rollin' in in the mail....lol I swear we have a months worth of samples already! The hollister stuff looks awfully nice to me....we are using the cheaper looking stuff up first......I am put off by the clear bags, but we are gonna use the ones we have and then go to the solid covered ones. I would think they would be more comfortable against you also.
well, all of you rest well tonight....and don't take any wooden nickles.

oh and say.....where are you all from???? We hail from the good ole "show me state, Missouri" We live almost to the Iowa line in Northeast MO.
Kkkkkkkaty :)

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/24/2007 8:20 PM (GMT -6)   
I love the sake of a cow! I have never heard that! I am from NC, in the middle of nowhere.
He can eat corn and stuff once he is farther out, my dr told me not to eat a whole head of cabbage (who would do that anyway???) but in moderation it should be fine. I havent' tried just corn yet, but I have been eating hushpuppies (yummy!) and corn bread, and that's been ok.
The cloth ones are alot more comfy against you, I use the hollister ones, and I mostly like them

Nancy1
Regular Member


Date Joined Nov 2006
Total Posts : 125
   Posted 7/24/2007 8:59 PM (GMT -6)   
I can sympathize with what you are going through.  My husband had surgery on June 11th and now has a end ileostomy.  It has been eight weeks post-op and every day is a learning experience.  My husband has had good days and bad days.   He is having a bad day today because we went to a restaurant and he ate more than he should and is now dealing with gas and stomach pain.  He also worries that he will get a blockage or become dehydrated.
 
My husband teaches college and has to wear suits to work.   He will be returning to work this coming Monday and has put off trying to figure out how to wear dress clothes with his bag.  I convinced him to visit a men's store that carried Sanzibelt dress slacks because they have an expandable waist.  He ended up finding out they worked.  He has been fretting about dress clothes for the past eight weeks.  One problem solved but many more to come I am sure.  This entire adventure has become my life lately because we are definitely in this together. It sounds like you are a caregiver like me.  It isn't easy but hopefully things will get better for both of us as our husbands learn how to get on with living and not dwelling on their new bags.    This website has been my source of information and support. Good luck.
 
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