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Coming home....and ostomy questions

jen2012
Posts: 1208
Joined: Aug 2012

Hubby is being released today.  I'm so tired of the back and forth to the hospital and toting the kids around, so in some ways it will be easier, but with all of the running I haven't given much thought to how things will be at home.   We have lots of stairs - I think he's planning on spending the days downstairs on the recliner and just climb the stairs for a shower and bed.  The ostomy nurse said there really aren't any restrictions on the diet - mentioned avoiding spicy stuff and nuts and seeds.   The rest she said to try and see what happens.  We are fortunate to have a wonderful friend who has arranged dinners for us for the month of May - every other day someone will be dropping something off....but not sure what people are making.   

Nurse also suggested getting lots of cheap washclothes and maybe just throw them away after using them to clean the ileostomy.   As much as I like the idea of less laundry...that could get expensive fast!   So any suggestions on alternatives (haha...thought I'd throw the word alternatives in and see what happens :))  for clean up.  She said baby wipes are not good - that would have been ideal.

Also any suggestions on supplies for the ileostomy would be appreciated.  He is using a two piece now, but the nurse said when the bridge is removed the one piece will probably be better.  It's temporary but not sure how long - as little as 6 weeks, but that depends on the oncologist according to the surgeon.

Feeling a little lost in not knowing what is next at this point.  Through chemo we had a plan, then stopped chemo to get ready for surgery and now ??

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

I have no experince with the ileostomy but I am sure many will offer valuable advice for you.

It sounds like you have strong support lined up when your husband comes home for your food needs ... that is going to be a great relief for you I know what with caring for your husband and children.

So happy that your husband can now be back into the loving arms-paws of his family and his "doggo"

Best to you ~ Cynthia

LivinginNH's picture
LivinginNH
Posts: 1313
Joined: Apr 2010

Hi,

So glad he's home!  As for cleanup, we found that steril square pads and sailine worked best.  We also used sensitive fragrance free baby wipes for general body cleanup (put in microwave for 10 seconds to warm up).  Also, use Convatec powder on the skin under the bag - not skin protector - or it will unstick and leak.  We learned this the hard way.   John23 gave us lots of great advice in this area, so check out his blog, it will really help.

Cyn

Chelsea71
Posts: 1170
Joined: Sep 2012

John23 offers great advice in his blog. 

As for what's next I would guess that he'll remain off chemo and they will scan every three months.  Watch and wait.  Hopefully all scans will be clear for the rest of his life.  If something pops up, they should nip it immediately and do mop-up chemo.  (or vice versa).  With Steve, I found this stage to be both wonderful and (for myself) highly stressful.  Unfortunately, for us this phase only lasted three months.  I often wonder if Cimetidine would have made a difference. 

I'm glad your hubby is home and that life will return to "normal."

Steve uses Ajax cloths.  Cuts them in two and throws them out after use.

 

 

bailee2012
Posts: 61
Joined: Jul 2012

For my husbands ostomy, we use baby wipes for sensitive skin with no added stuff such as aloe.  We have been doing it this way since his ostomy surgery in June and have had no problems at all. 

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

I also use baby wipes and have had no issues. The only issue I had was the skin prep wipes (specific for ostomies). I discovered they had alcohol in them (ouch). I ordered one online that doesn't have alcohol in it. It is much better, but doesn't dry quickly, so I have to wipe it dry before putting on my appliance.

jen2012
Posts: 1208
Joined: Aug 2012

Cyn, Cyn, Chels, Wawaju & Bailee - thanks ladies for your advice and support.  Good to know that baby wipes may be good! 

John23
Posts: 1832
Joined: Jan 2007

 

Re:

The ostomy nurse said there really aren't any restrictions on the diet

 

With an ileostomy, eating fiber is a no-go. Fiber is great for scrubbing the colon (like a pot scrubbing pad), but for an ileostomate, fiber is not only useless, but it can be a contributing factor (if not the cause) for an intestinal obstruction.

 

While most intestinal obstructions are a result of an adhesion or hernia, obstructions from food products that do not break down easily, can be a cause as well. Most often an obstruction due to food will be at the location of the stoma itself, since the intestine has to make a tough turn to exit the body (it usually goes downward, not sideways). It’s at that “elbow” of a turn, that undigested food can jam up.

 

Contrary to what that nurse has said, a diet modification is necessary for ileostomates. Chewing food well (like mamma always told us to do), is very important. If you chew well enough, things like peanuts or popcorn can be made into small enough particles to pass through easier. Things like Broccoli and corn can be difficult, and is often the cause of a food obstruction for those that are more prone to food obstructions.

 

As time passes, you may have problems with adhesions. Adhesions are a result of the normal healing process, and although good for the skin’s healing, they can be very problematic inside the body. The intestine will adhere to other organs, or itself, causing it to lose it’s flexibility that allows the passage of food products.

Adhesions usually take 2 to 3 years to develop into a problem, if they happen at all. The likelihood of having adhesions after abdominal surgery it upwards to 75%, so be prepared.

 

Taking care of dietary matters and avoiding what does not dissolve easily within us, is important for an ileostomate. As time passes, experiment with some of the things that were avoided at first, but always, always chew well!

 

Re:

Nurse also suggested getting lots of cheap washclothes and maybe just throw them away after using them

 

Where the $%^&* do they find these nurses?

 

Listen, go to my “profile page” and to my “blog” there. I have a fairly long dribble of dialog that you might find helpful in the “Stoma Care” section. (here’s a link: http://csn.cancer.org/node/227905 )

 

Use a washcloth that’s been washed in hot water, without soap or any type of conditioner. We buy the el’cheapo washcloths from Walmart (White cloths, 18 in  package for around $4~$5). Wash them out with hot water after use. When they get tired, toss ‘em; usually about a month per…

 

Wash the peristomal area with nothing but hot water. NO SOAP. No skin conditioner, no adhesive remover, no topical dressing. Dry the skin with a paper towel, or 4x4 cotton pads (I buy those in bulk on ebay for cheap).

 

All of that is explained in the “blog”. Let me know if you have any questions and I’ll be more than happy to assist.

 

There’s a ton of misinformation regarding the care of a stoma, and it’s been the cause of misery for new ostomates for years. The info in the blog is basically what the manufacturer provides, but no-one seems to read.

 

Be well,

 

John

 

 

jen2012
Posts: 1208
Joined: Aug 2012

John - thanks for taking the time to share so much helpful info.  I did check out your blog after Cyn mentioned it.   The discharge instructions came home with "low residue diet" restriction.   Which is completely opposite of his regular diet.  I'm the one that still has to sneak in the occassional while pasta when the quinoa or wheat pasta just isnt cutting it!  Weird how much our diets have changed - first with my son's diabetes diagnosis in Nov/Dec and now this.  Crazy how we felt we were eating healthier before diabetes and cancer!

I was telling him this morning that he has to chew up his food - not something he's used to after growing up the youngest of three boys ....inhale and move on or starve!  The visiting nurse told him the same thing this morning, so I think he's be more careful. 

Your instructions sound great and easy to follow - and we will follow them.   He has a little plastic bridge that holds the stoma in place right now, which makes changing the appliance a little more tricky - hopefully it'll get easier when it comes out next week.

This is the guy that even after 20+ yrs of marriage, he still locks the door every time he uses the bathroom - so he is less than pleased about me helping him with any of this.  So far he's been emptying and cleaning on his own, but I think I'll be doing putting on the new appliance for a while.

Chelsea71
Posts: 1170
Joined: Sep 2012

Hey Jen. Thought of a couple more things. Steve and I have learned everything the hard way. For example, it is imperative to drink lot of water when you have a permanent or temporary ileostomy. When the colon is not being used the body becomes easily dehydrated and kidney stones may develop. This is the last thing you want to have to deal with. On a separate occasion we learned that during the really hot weather, it is easy to become dehydrated and it can cause sections of the small intestine to shrink, therefore, a blockage develops. (The bag stops filling up). This lesson got us three nights in the hospital. This was back when we were novices. So, water is very important. I'm guessing the nurses at the hospital explained all this. The last thing is skins on grapes. (and likely other fruit skins). This can be big trouble! Pieces of skin can block off the hole.

I was just thinking back to when Steve was discharged after his colectomy. We arrived home from the hospital with a stage four cancer diagnosis and an ileostomy. I felt completely frightened. I remember thinking that this must be what it feels like to bring a new baby home from the hospital when you have no idea how to care for it. (Minus the joy, of course). I'm sure it's easier for you as you've adjusted to the cancer situation and then just the fact that the ileostomy is temporary. Anyways, I'm sure it will be somewhat of an adjustment for you guys. Good luck with it all.

jen2012
Posts: 1208
Joined: Aug 2012

Thanks Chelsea - I mentioned the drinking...and so did the visiting nurse again.  He looked at me like wow you have been doing your homework :)

I've brought home 3 new babies from the hospital...and a hubby with a new ileostomy.  This is much more frightening and overwhelming!  Last night was difficult for the whole family.   Hopefully we'll all get into a routine and find a new normal.  Yes the fact that it is temporary does make it easier. 

All of this advice from people who have been there is so helpful! 

Annabelle41415's picture
Annabelle41415
Posts: 4309
Joined: Feb 2009

Can definitely understand the commotion that goes on with this disease and especially with young children.  Going up the stairs is a problem but it is managable and the more he walks the better he will feel.  Believe me, walking hurts like heck, but it's the best way to get better, plus going up those steps is another good activity.  As far as the washcloths, they can become dirty, but they can always be washed and what I'd do is use the same washcloths just for the cleanup and just wash them.  You might have 5-7 but keep those specifically for those washings.  Why would you ever just throw them away.  Never heard of that and it is just a wasteful idea.  Shoot if I'd thrown away every underwear that had poop in them I'd never have any left.  Hope hubby is feeling better now that he is home and you get some rest yourself.

Kim

jen2012
Posts: 1208
Joined: Aug 2012

Thanks Kim - he made it up and down all of the stairs and did okay!  Pain meds help with that I'm sure.   Hopefully some rest will come tonight.  Dog was sick last night and vomitting from 3 to 5.  The fun here never ends.  Could easily dose off now, but have to go get my son in 15 mins.

Did you wash the washcloths in the machine, with soap? 

Annabelle41415's picture
Annabelle41415
Posts: 4309
Joined: Feb 2009

I'd always rinse them off first before putting in the laundry but yes, definitely used laundry soap.  Remember that lundry goes through a rinse cycle at the end and all that soap gets washed away anyway.  Never had any problems.  Also, washed those with a regular load of laundry so no need for special loads.  Hope you get some sleep soon.

Kim

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I use wet wipes for cleaning the ostomy.I use the flushable ones,and you can get them with aloe too.I use the two piece bags,for me it's easier to clean the bags,and reuse them if possible.The bags are about $125.00 a box of 20.To get ready for surgery he needs to build up his strengh for a better recovery.Good luck.

jen2012
Posts: 1208
Joined: Aug 2012

Thanks karguy!

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 460
Joined: May 2012

I hope hubby is feeling better. I never had an ostomy but had huge surgery last June. It seems like the first 2 days are bad and last forever. After that things get easier every day. Surgery was easier then chemo for me. Although, I didn't like either. I'm sure he is happy to be home just to get sleep. I worked in the hospital that I had surgery and told them to leave me alone during the night, no vitals, no blood sticks. The hospital is a terrible place for rest.
Sandy :)

doctorc
Posts: 12
Joined: Mar 2012

Yeah, we are new to site. my beautiful bride of 41 years just out of HIPEC for appendix cancer, 22 hour surgery....yeah, the dr said longest in history of MDA gastro. she is doing much better, surgery was April 5.  we have usual challenges, bathroom issues, nausea, eating and drinking enough and holding it in.  no feeding tube or ileostomy bag, thank God. we are truly blessed , dr said she is doing "much better than he expected." lol.  what does that mean...  hang in there,  . as dr hoffman said this is a marathon not a sprint.  praying for your recovery

Chelsea71
Posts: 1170
Joined: Sep 2012

Twenty-two hours! OMG! My husbands was between eight and ten. HIPEC is very successful for appendix cancer. Hope she lives a long and happy life.

Chelsea

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Last week I wanted salad, so I ate salad...two days in a row. Well let's just say you never know when the lovely sounds are going to come out of "Oscar" (yep, I named it). Being a teacher, these lovely sounds just happened to come during a writing prompt (all was quiet, yessah). I was in the middle of the room standing at my laptop, when Oscar bellowed out...three times. Well, the kids to the left of me thought it was the kids on the right side of the room, and vice-versa. So, it was ok, until...I met with a parent at noon-ish. Yep, Oscar bellowed out again. I explained to the parent about the colostomy (I didn't want her to think I just sit there and "let 'r rip"). So, just watch it with salad...

Judy

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