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

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

bob  

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?

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!

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 ) 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!!

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.   

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!

-E

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.

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.

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!