hey There - pre operative tests done - Wednesday is Ostomy marking day - Questions Help

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schrek-chewbacca hunk
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   Posted 4/6/2009 6:30 AM (GMT -7)   
I as told not to wear "dress pants" which I don't wear much now that I am retired (even though my wife blips me up new suits and pants/shirts monthly due to changing size).  I was told to wear  normal - even dressier jeans that are not tight - and that I wear should wear my normal belt.  No expandable waists because they wount give the right "rise" which I have been wearing since my 8 surgeryies last year.  I have a pair of tan jeans - that look nice, fit well on the waist not tight nor loose (normal) and a plain brown belt and a sport coat.  Is this allright?
Also, when sleeping, my mother in law told me that her friend goes to sleep in her own room and I shouldn't consider sleuping with my wife anymore in that in wouldn't be fair to spill feces on her.  Since I am scared of that I am tending to agree but my wife is in revolt.  She has told her mother to shut up and stop scaring me and let us get through this.  But I don't want to hurt her.
Along the sleeping lines, I sleep on my right side - my mother in law told me that I can only sleep on my back as the pressure on the bag will spill it into the bed - if not the contents, then definetly the odor.
Her friend told her to buy the cheapest white sheets and put hem over the hospital pad - but under the real sheets, get in - then put on glad seal around the appliance to prevent leaks and odor and secure with tape overnight, then put another clean white sheet over me, then my normal sheets to protect them. Then my blankets.
Her friend told he only to buy flannel sheets as leakage moves more slowly in flannel (in sunmmer in washington?).
Her mother wants to move in while I recover to make sure that I am taken care of, but to make sure that my laundry gets done separately from my wife's - towels, clothes everything - as infection is passed through leakage according to her friend.  She has bought two different sets of all bath and bedding things.
I was starting to feel better, but now I am scared again about my relation and olor and leakage.  She says it can't be avoided - and to put tincture of wintergreen on my body, but away from the stoma to make sure adhesion works.  This will make me not smell.  She also wants to put that in the bedding and in the room I will have to sleep in.
She says her girlfriend has lived this way with her husband now for 25 years and she knows what she is talking about.
I was doing better, and now I am a mess again...I am not willing to hurt my wife - when I said that to my mother in law - she said that it maybe time to "part ways".  My wife nearly thrrew her out of the house which makes me feel better, but having her here and her prescriptions are scaring me.  She said she will be with me when my visiting nurse comes - after my wife has to go back to work.
Am I in some strange soap opera here - I almost want to not have the surgery, and go off and live alone and recluse.
I am so sorry to burden you all - my wife is coming to the ostomy visit with her list of her mothers advice, and plans to shoot them down one by one.  She is so good to me - but I am SO AFRAID NOW.  Even the xanax isn't helping.
And her mother and my wife are fighting like cats and dogs over me - that has never happened.
I just don't know where to go or what to do.
love to all

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Date Joined Feb 2006
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   Posted 4/6/2009 6:47 AM (GMT -7)   

Your MIL needs to stay home and provide advice to someone else!

1. The clothing advisement is for setting the ostomy site. Everyone's torsos are different and everyone wears different clothing. They don't want to put your ostomy in a location that would be uncomfortable for you.

2. Of course you can continue to sleep with your wife!!! My ostomy never leaked in bed but I did keep a baby pad between my sheets and mattress pad cover in the event there was an accident. It never happened. You don't need to sleep in flannel sheets!!

3. You will be able to sleep on your side. It's the only way I can sleep and from the first night in the hospital until my ostomy was reveresed I slept on my side.

4. You can wash your clothing in the same cycle as your family clothing. You do not need to separate. Ask your MIL if she separated everyone's underwear when she did laundry!!

5. YOU WILL NOT SMELL! Trust me on this.

The more I reread your post the angrier I get at your MIL. I would seriously reconsider having her help you. Or in the event you must have her you need to set her straight. Have her read the responses you will get from this post or tell her to her face to grow up and back off. People like her make me really mad, can you tell?!!!

Bob, you are going to be fine and your life is going to improve drastically with the surgery.

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

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Date Joined Jan 2008
Total Posts : 381
   Posted 4/6/2009 7:10 AM (GMT -7)   
Good God- Bob
Like Sue I was getting angry about what you MIL was saying. I am sleeping in a separate bed ( guest room) only because the bed is softer and I can sleep better there for now.

I have not had a leak (knock on wood). I do get up and empty bag in the middle of the night though. I don't mind considering that I was getting up at least 6 times every night when I had UC.

Honestly, you will not stink.... The first week the output did smell particularly bad, though. When I emptied, I would pour bleach in the toilet, flush immediately and spray Lysol. After that it kind of settled down.

Your life will not be over. Geez- I can't believe your MIL said all of those things. You do not need to be around her. No wonder you are so upset. You need to be around positive, supportive people. Forget everything she said.

Stay away from her----- You will be fine and you will feel better.

Are you eventually having a jpouch or is this a permanent ileostomy?
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps

Regular Member

Date Joined Apr 2008
Total Posts : 99
   Posted 4/6/2009 7:13 AM (GMT -7)   
WOW, your mother-in-law doesn't really like you does she? LOL, don't worry I got one similar to that.

If your mother-in-law's friend really exists (maybe MIL made her up to push a point) then I would guess she (the friend) did all that she did because of her being grossed out or something. Sleeping on your side is no way an issue with an ostomy, I roll from one side to the other and have had no issues. We do have a "barrier" pad under the sheets just in case something did happen it wouldn't soak into the mattress, the sheets are washable the mattress is not. Unless your bag is open for some reason then odor isn't an issue when you sleep just like it isn't an issue when you are awake because the bag traps it all and if the filter works it vents through there, if not you vent it on your own. That is something you may want to learn for when your mother-in-law is with you and your wife is at work, LOL. Venting it in her presences could shorten her stay LOL.

The only way your wife is at risk for infection even if a spill were to occur is if both of you sleep through it and she had an open, uncovered, wound that came into contact with the feces. If infection from being around feces were that common then nurses would be sick all the time. Laundry don't need to be separate either, her "friend" sounds like she might have OCD, LOL.

I assume that maybe your mother-in-law views you as some sort of damaged goods now and thinks maybe her daughter shouldn't have to go through it or something. That is just my guess because that is the pattern that I see my own mother-in-law having. She tried to talk me out of the surgery even though UC nearly took my life and since then she has dropped hints to wife that are a little more obvious then she probably wants it to be. Unlike you though, my mother-in-law is in a whole different country due to Military Service so I get a break so to speak.

Oh yeah, the clothing you are planning to wear to your appointment should be just what you need to let the nurse get a good idea of were to mark the spot. Try not to worry about your mother-in-laws inconsiderate comments and just focus on getting yourself healthy. The ultimate "you were wrong" will be when your mother-in-law sees that none of her "concerns" have come to light.


Total Colectomy with End Ileostomy May 27th, 2008

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Date Joined Aug 2006
Total Posts : 6571
   Posted 4/6/2009 8:56 AM (GMT -7)   
Ok thats the craziest amount of stuff i have ever heard! That kind of stuff is from years and years and years ago! Like 100's of years, lol

As for the clothes, wear what you like to wear everyday. I wore a pair of jeans i liked, but also took my fav pair and made sure it would work with those.

Sleepign with your wife-you may want to sleep in a dif bed for the first few weeks, BECAUSE it is kind of hard to sleep at first and you might want to make it easier on her to sleep.

you CAN sleep on your side, i sleep on my stomach, or on my right side! Somehow, i dont really know how this happens, but it seems like in my sleep i know and always roll myself over on my back when i wake up.
Now you wont be sleepign on yoru side for a little while after the surgery, but only because it will hurt to lay on your stomach. It was probably a month before i started sleeping on my side, and 2 before i started sleepign on my stomach.

I do sleep with a waterproof pad between me and the sheets, just makes me feel better, but you dont have to do that. I covered my pad with a sheet and sewed it on, so it would be soft. I would not sleep with the bag taped up and covered with glad wrap. One of the worst leaks i ever had was because i went to sleep with my bag taped up and covered with a tube top (that's what i do to have "Fun" and i forgot to undo it before i went to sleep) and the extra pressure from that rubbed on the filter and caused a problem.

Your laundry does not need to be washed seperately, thats just silly. Now personally, when i wash the pads i lay on to change my bag, or if my kid gets poop on his clothes, i wash those seperately, thats just my OCD though.

LIke someone said up there unless your wife has an open sore or somehow gets it in her mouth (which i have no idea how that could happen!) she wont get an infection. If you could get an infection from touching poop then everyone that wiped their butts would have them all the time! Anyone with a baby would be in horrible shape!

you will NOT smell!!! I promise that unless you have a leak you will NOT smell. In 11 days i will have had this thing for 2 years and noone ever smelled me! I dont knwo about that wintergreen stuff, but i wouldnt put it on my body! there are things you can get to put IN your bag so it wont smell as strong when you empty it but i rarely use that.

just ignore your MIL, not trying to be mean here, but i think she might have a screw loose!
Do not worry abotu what she is saying! you have your surgery and you get healthy!

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 4/6/2009 9:07 AM (GMT -7)   
BOB! Please don't listen to her!!!!!! I'm am just going to say that, I too, got really mad at her while I was reading your post...everyone has done a great job with their responses that I'll just say this:

People I meet have NO IDEA I have an ostomy because I don't smell!!!

I have slept in the same bed as my hubby since the day I came home from hospital...I do use flannel sheets because I LIKE THEM in the winter...I'm in Ohio and it's snowing today:)

I also sleep on my right side and on my stomach (I wouldn't suggest it until your staples are out...!!!)

and lastly, for your sanity...DON'T LET HER MOVE IN TO HELP...it's not worth the torment.

You're going to be fine and you'll really feel so much better when it is over, I promise:)

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Date Joined Nov 2006
Total Posts : 552
   Posted 4/6/2009 11:45 AM (GMT -7)   

Hi Bob, from everything that you have written about your wife over the past few years, I know she is the one to listen to. Absolutely DO NOT LISTEN TO YOUR MOTHER-IN-LAW! If at all possible, find someone else to come stay with you when your wife goes back to work.
After Bratcat healed, she would sleep on her side, her stomach, any way that was comfortable. She doesn't sleep with anyone (better not at 17 nono ) except for the cats! Never had problems with them.
We never put a waterproof pad on the mattress (never did when the kids were little either...guess we like to live life on the edge-lol). We do have mattress pads on though. She did have one leak. All we did was change her sheets and the mattress pad. The mattress never got dirty.

When most people talk about leaks, it generally does not mean a major blowout of the bag (although that could happen I guess). The leaks most ostomates talk about are when there is a line of feces slowly leaking from the stoma out towards the edge of the appliance. In Bratcat's case, there may have been a few spots of liquid that ended up on her clothes. Which I threw in with the rest of the laundry!

Summerstorm is right. Anyone with kids knows that poop happens, poop gets on other people at times, and people do not get sick!

By the way, when my kids were little I learned that many times baby wipes would clean any stains off of our clothes. Things like a little spit up or a little poop. If you catch it early it worked great. You can try that if necessary.

For your own sanity and mental health to heal, you really don't need your MIL around you.

Maybe you can ask your surgeon for the name of a past patient to talk to. Explain the issues to the surgeon and maybe he can recommend someone who went through a similar thing as you...your age, married, etc. We spoke to a girl who had the surgery around the same age as Bratcat. She was now 3 years older and was able to tell us what it was like for her to be 17 at surgery and how the following 3 years had gone. It was a big relief to talk to someone who could relate.

Also, I think you said your surgery is April 16. Everything will go great because it is Bratcat's 18th birthday!
Cyber hugs to you and your wife!!



--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp

Regular Member

Date Joined Oct 2008
Total Posts : 262
   Posted 4/6/2009 12:00 PM (GMT -7)   
OMG..no wonder you are feeling so nervous/anxious..if I had your MIL around I would too!!  I had an ileostomy for 6 months and I never had a problem with leaks in bed or any odor.  I don't know where your mother in law is getting her information but with all due respects...in my opinion she is not only way off base, but toally out of line!!!  I slept on both my right and left sides...no problem.  Your wife loves you and together you will get through this.  MINUS your mother in law (my opinion).  Best of luck to you ....you are going to be surprised at how good you are going to feel once you get through all the post op stuff.  {{hugs}}

Hysterectomy 1998
Diagnosed IBS 2000
Vaginal Prolapse Surgery 2001
3 Hernia Repairs, 2004
Repeat Vaginal Prolapse Surgery 2006 (the mesh from previous prolapse surgery had let go and fallen into my bowels)...
Removal of mesh from bowels (it was piercing holes all through my bowels and appendix and cecum, causing 2 fistulas and heavy bleeding vaginally and rectally)...mesh was removed, two pieces of large bowel removed and resectioned with a loop ileostomy. 2008
I have underlying connective tissue disorder (Ehlers Danloss Syndrome) which is the reason for the two failed surgeries)
Ileostomy Reversal March 9/09

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Date Joined Nov 2008
Total Posts : 25
   Posted 4/6/2009 1:08 PM (GMT -7)   
Well, I agree with everyone above--don't listen to her, that is ridiculous!!  I have a colostomy, so maybe the chance of leaking is different, but, I've never had one.  I asked my husband to sleep in a different bed for a few days when I first got home from hospital (but, I had emergency surgery and was really in bad shape when I first got home--I had an open wound from drain, I was afraid of him bumping me in the night...) but it was only for a few days, and he insisted on coming back--then I put a pillow between us so we wouldn't bump into each other.  I can only sleep on my side (not my stomach), but I think it's because I have developed a large parastomal hernia--so do follow the lifting rules your surgeon gives you--I would be extra cautious as to what he says about lifting...for longer than he says--this hernia is causing more discomfort than anything else did.  I've never had a leak, but have worried that I may pull bag off at night (I use a 2 piece) but, that has never happened.  I am supposed to have surgery for reversal next week, although there has been some issues that I may need to postpone it to clear up, but, I'm with you on the anxiety level.  I hope everything goes well for you, it is very easy to be worrying about everything, and, your mil, while she may mean well, isn't helping---most of what she is saying sounds like something from a long time ago.   

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Date Joined Jan 2006
Total Posts : 768
   Posted 4/6/2009 4:45 PM (GMT -7)   
I'm glad to hear it makes your wife mad too!!!!! As everyone else said that sounds unbelievable!!!! I can't believe anyone would be that dumb and unkind at such an important time in your life. Hope everything works out well and you can laugh about it later. And forgive her, she sounds scary.

Regular Member

Date Joined Mar 2008
Total Posts : 137
   Posted 4/6/2009 5:49 PM (GMT -7)   
Seems like she is trying to make you feel like less of a person now that you are going to have an organ removed....

You will not need to make ANY changes in regular life routines after surgery! All that is different is you empty a bag instead of sit on the toilet. THAT's it!

Truly, Bob, i would have been so offended and upset if I were you, it would be very hard to forgive her words and attitude! But you seem to be handling it well :)

Don't put up with anything you don't have to--recovery is not a fun process and you don't want someone dragging you down!


Regular Member

Date Joined Jan 2006
Total Posts : 449
   Posted 4/6/2009 5:59 PM (GMT -7)   
Sweet Jesus!! I haven't even HAD my surgery yet, but I would be darn near ready to tell her where to go!

I'm scared to death of my upcoming surgery for a multitude of reasons.. So, I do thank you for your post ad the responses have reassured me (again) that this will all be ok!

Uhm, and how is emptying an ostomy bag or having a leakage ANY different then my 20 month old have an EXPLOSIVE poop episode? I remember a few nights we'd be awoken to her with poop shot up her back covering her PJs, blankets, sheets, and all! DH & I didn't pull out the hazmat supplies (gloves, bleach, buckets, etc... ) we simply picked her up, stripped her down, pitched what we could salvaged and started a load of wash. For goodness sakes, according to your MIL, I should be disease infection about 40 times over... because thats at least how many explosions and such I've dealt with just being a mother!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old

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Date Joined Aug 2007
Total Posts : 1998
   Posted 4/6/2009 6:24 PM (GMT -7)   
I am so frustrated at your MIL and I haven't even met her!!! Maybe that's a good thing. Bob, Please listen to what everyone else here has said. They are telling you the truth.

I don't know what era your MIL's friend lives in, but it surely is not current time. Maybe she needs to go thru some training to show her what new products are available NOW for her husband. 25 years ago, products may have been a little different, but not that much. After all, the products I use now are the same ones that I started using in 1984... yep 25 years in July of this year for me. Let's see, do I wrap myself in glad wrap? NO! Do I use only flannel sheets? NO!!! Do I sleep on my back solely? HECK NO!!! Sorry, I am getting carried away.

I'm thinking you and your wife need to block out any advice she has given you, whether meant to honestly be helpful or not. I'm betting the doctor will dispell all her ideas at the appt. Unbelievable!

Keep your chin up. WE are here to support you thru all of this mentally, emotionally as best we can.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Regular Member

Date Joined Feb 2009
Total Posts : 46
   Posted 4/6/2009 7:25 PM (GMT -7)   
Bob, Let me asure you.....It is nothing as your mother-in-law has made it out to be.....My Husband Steven and I were married 5 months when I got my colostomy....Oh the fun we had....Our honeymoon was 26 days in teh hospital.....When we came home we had home health for ten days and he said enough.....I love her and we can do this our self.....He still packs my wound of 11 weeks....and when i urrigate i get weak at times and he is with me....My bag broke in the bathroom and it went everywhere and he helps me and while I cry for loseing my dignity he holds me and says for better or worse, i love you and your sidekick...its makes you healthy and before you I was lost......He is the greatest.....and true love will sleep with it on you and them and get up and help you change the sheets.....Bob, I bet your wife is just as my Steven is.....Good luck to you......and it iwll be ok....kim/maggie
Maggie in tennessee....coping

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Date Joined Feb 2003
Total Posts : 1250
   Posted 4/7/2009 5:45 AM (GMT -7)   
Oh how I wish I could have been there to dispute every single thing your MIL has said to you. I've had my ileostomy for 33 years, never done anything different to 'bowel intact' people other than empty my bag rather than evacuate stool in the 'normal' way and I've survived and am here to tell the story. When I was at home, my dirty laundry was always done with the rest of the families (no sense in wasting water for a separate load of washing for a start!) and they've managed to survive too without getting an infection from me. Come to think of it, I've never gotten an infection from any leaks I've had either, go figure!

I went on school camps and slept in the same room with up to 10 other kids with nothing other than a sleeping bag and a pillow, they all managed to survive too.

It's funny. Years ago at work I told a friend (after working with her for about 5 years) about my ileostomy - her first comment was 'but you don't smell!' I think the 'odour' myth started about 40 years ago when bags weren't odourproof like they are today, and for some reason it's become a 'fact' amongst non-ostomates.

PS. I pity her friend if she really is living this way. It's sad really to think that people have such a view of ostomies and ostomates, which is why education is sorely needed in this area to the general public.
I have had an ileostomy for 33 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

Regular Member

Date Joined Jan 2009
Total Posts : 40
   Posted 4/7/2009 1:03 PM (GMT -7)   
Your MIL is nuts! When i read your post i was completely confused! She has no idea what she's talking about! Its actually kind of funny. I slept in the same bed as my fiance and slept in every position, except for on my stomach. I did have a leak one time and that was because i was lazy and didnt change a bag when it was needed. The marking was a problem i had. I didnt wear a pair of my higher jeans that day. I am 23 and so i have a pair of jeans that are pretty low. I wore those the day of my marking and i tell you, they wre the only jeans i wore the entire time! They were the only ones that didnt rub against my stoma, or leave room if it ever filled. The smelling thing, yes, it smellls, but the only place is the bathroom. The bag is a very tight sealed bag that doesnt let any odors out unless you open it. Everyone else basically said the same thing but this is going to be a hard thing for you. Afterwards, i have had my reversal for a few months now, i went from taking 26 pills a day for 9 years, to absolutely NOTHING! I feel so great and normal for once. You wont regret it! But you most definatley dont need someone scaring you! Everything will be fine and tell your MIL to butt out!

Regular Member

Date Joined Mar 2009
Total Posts : 31
   Posted 4/7/2009 5:05 PM (GMT -7)   
Is your MIL's picture next to 'insensitive' in the dictionary?? Can you divorce your MIL? UNBELIEVABLE baloney.

I've got nothing else to add because everyone has already said all the correct and true things! There will be annoyances along the way, but from what I can read, they'll be real easy to handle!!!! Hang in there and find a GOOD WOCN and listen to her/him ... and the lot of us! shocked

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Date Joined Jul 2007
Total Posts : 2765
   Posted 4/11/2009 4:36 PM (GMT -7)   

Bob, your MIL needs to stay far away from you, because she's mean and thinks she knows what she's talking about, but she doesn't! She and her friend are both crazy, and you shouldn't take any advice from them. All she's doing is upsetting you, and you do not need that.

I'm so glad your wife is protective of you and sees that her mom is way out of line. Please make sure your MIL stays away from you after surgery, because you are going to need to rest and do not need her keeping you awake with her negativity and nonsense.

This has been my experience:

I have never had a leak in bed or anywhere else.

I have no odor whatsoever.

I sleep on my stomach, side, or back with my husband in our bed with regular cotton sheets on it.

I wear regular clothes and wash our clothes together.


I hope all of our posts have helped you see that what she said was wrong, and you should not worry about those things.

Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.

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