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Ileostomy 101 Education Continues (can I get an associates degree out of this?)

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Posted 6/1/2012 8:23 PM (GMT 0)
Our last standard skin barrier and pouch lasted just under 24 hours.  At 2 a.m. we discovered it was leaking but once again Bill was too sore and tired to let me change.  We put washcloths at edges.  At 5:00 a.m. when I got up to check, he was a total mess.  Leaking had gone all over him, his underwear, the absorbent pads under him, the quilt on top of him, and onto the floor, dripping down the side of the couch.

It took an hour to clean everything up and put one of the one-piece pouches I had purchased on him.  I don't know if I nicked the plastic when I cut out the stoma opening or what but it had a small leak immediately from the TOP of the bag...not the skin barrier but the actual pouch itself.  He is still wearing it and trying to sit upright so fluid flows away from where he thinks the leak is.  The trouble is that I can't see any hole, crack in the plastic, or the exact location of the leak.  We are waiting for the home health nurse and when change him when she gets here.  She wants to assess the inflammation of the skin around the stoma.

Convatec sent us a sample box of supplies so we do have something to put onto him when she gets here.  The back-ordered Coloplast supplies that were sent to us arrived this morning but I had already packed up everything that came yesterday to return.  SO...in order to avoid problems with insurance paying for it, we will return these and hope that the Convatec supplies coming tomorrow will work for us satisfactorily.  I am afraid to keep BOTH shipments because I don't know if insurance will pay for all of it if I do. 

We have learned ONE THING....when output is thicker and pastier, it seems to collect on top of the stoma, backs everything up and then seeps under the skin barrier....even when we use Easkin or Coloplast strip to seal.  So it appears that for us, liquid is better than semi-solid....particularly if my husband wants to try to lie down to sleep.  Of course the liquid fills up faster and means we have to empty more often.   So that means making sure we empty every 3 hours and sleep in naps instead of the rest we both need. 

Bill knows he needs fluids...which then make it hard for him to eat much in the way of food.  This balancing act of what to eat is difficult.

Posted 6/1/2012 9:56 PM (GMT 0)
Bill is now wearing a convex wafer with snap-in pouch with velcro closure and a belt.  All of this really makes the stoma stand out more so we hope it will not leak.  Fingers are crossed.   Skin is starting to heal up.

I checked with Teamsters and they are okay with paying for everything I have received.  So since I now have Convatec supplies arriving tomorrow AND some Coloplast wafers and pouches that work together, I am going to let APRIA know I am keeping both to find out which works the best for him. 

Thanks to all of you again for the help and advice.  I will keep you updated on how he is doing.  I am hoping the one we put on today will stay on through the weekend. 

I will also be sending up prayers for all of you and sending encouragement.

Posted 6/1/2012 10:31 PM (GMT 0)
Oh yes, the thicker output can "pancake" and when there it no where for it to go, it tries to get out under the wafer :( I had that same issue early on.

Additionally, I try to stop eating/drinking at 6pm. I find my transit time (mouth to out LOL!) is about 3hours - depending on what it is. I can sometimes rush thicker things through by ending the day with a hot cup of tea. Maybe just 1/2 a banana as the last thing he eats would do the trick to thicken it up for the night?

I'm glad your insurance is working with you.
Posted 6/2/2012 1:55 AM (GMT 0)
Normally we would be eating earlier than 7 pm but 12 hour schedule for antibiotics was 7 and 7.  Then I am being transferred at work which will change me from a 6-4 shift to 7:30-5:30 shift.  By the time I get home and make some dinner, it will be at least 7 before we can eat.

Bill is going to try and semi-recline in the recliner instead of lying down to sleep....not as comfortable but maybe the gravity will help things move down in the pouch.

Right now except for a little stool in the "cup" formed by the convex wafer, the bag looks good and has not leaked.  I really hope all of the difficulty with leaking is behind us.  I am trying to make sure he drinks more too even though it would mean getting up in the middle of the night to drain.  I would settle for just ONE night of a straight 8 hours of sleep!

Posted 6/2/2012 7:13 AM (GMT 0)
I hope things go well for you now.
Posted 6/2/2012 12:02 PM (GMT 0)
Yes...thinner is better for output...too thick does pancake as stated and just backs everything up...it is a balancing act however you do get used to it and the fluid intake helps...also if everything is too thick drink grape juice or (?) apple juice to thin things out.

Hubby doesn't eat a lot of vegs. so V8 is very important as it is high in potassium that is necessary too. He tries to have a glass of that each day.

The convexity in the wafer DOES help the stoma to push out waste if the stoma is not very long...my husband's is 1/4" or so at resting position. I think I read 1" or so is ideal so if that is true that is why he definitely needs convexity which we knew from day one.

Definitely slow the eating down at night to help regulate things especially when it is so new. My husband seems to eat whenever and does snack (too much) at night but it is over a year 1/2 now and things are working fine for him. Some mornings the bag is filled with air and stuff but never leaks.
Posted 6/2/2012 10:40 PM (GMT 0)
We have made it past 24 hours with one skin barrier and snap on pouch.  Hooray!  No leaks but Bill has had to go empty "air" from the pouch because they have no vent.  The Convatec supplies came this morning so we finally have enough wafers, pouches and belts for a month.  We have decided to keep the Coloplast supplies as well just as a backup.  Since insurance did not set any limits on what we can have for a month, we can then donate all unused supplies to our home health nurse for future patients.  Their home health office is poorly supplied with ileostomy materials and we would hate for someone else to go through what we have,

Some of you questioned Bill eating meat (Arby's roast beef).  In the hospital the first solid food they gave him was roast pork, mashed potatoes, green beans and canned fruit.  So since my husband has always been a "meat and potatoes" man, what should I feed him?  He doesn't like pasta, rice is so-so with him.  Chicken....only occasionally and it has to be fried or grilled....he hates gravies, sauces, cassaroles.....like I said meat and potatoes which probably contributed to the problem in the first place.

So any recipes you can suggest?  I did cut up into very tiny pieces some raw cucumber mixed wtih tiny pieces of red pepper and a tsp. of mayo as a salad for him one night.  But he did notice that it kind of plugged up bag later that night.  What kind of vegetables can I get into him...they said no corn, broccoli, nothing high fiber.  That pretty much only leaves green beans and carrots (which he hates but will eat if there is nothing else).   Such is the life of someone raised on southern food....fried food, breads (which he now cannot digest), fatty meats, and raw vegetables which he also cannot have now.   We are both getting tired of canned soup which has become the easiest way to get protein into him and a coffee mug of it with a few crackers fills him up. 

He also does not eat peas....basically  has had an aversion to vegetables most of his life.  Would live on sancwiches if I allowed him to.  Pathetic that after 43 years, I can't get him to eat healthy.

Tonight is 3 wings and a frozen pasta side dish that he made a face over but agreed to "try".  This means I will probably be eating it Monday through Thursday every day for lunch...ha, ha. 

Posted 6/2/2012 11:47 PM (GMT 0)
Maybe I am wrong but the hospital kitchen it sounds like didn't have involvement from a dietician as those foods kind of sound a bit advanced for new surgery and stoma.

You're limited in what he likes and prefers to eat but I think he needs to make safe smart choices just for the time being if he wants to have some kind of control on his output since you are both still trying to find your way and have some better results with wear time.

Cucumber...hmmm. gassy and alot of seeds...hubby will eat it NOW but I peel the outside and remove the seeds and he doesn't eat alot even at that.
Mashed potatoes don't bother him but it does bother many people and have caused blockages for others. I would eat small portions....well mashed and maybe on the creamier side as opposed to thick. Red peppers...the skin might not be digesting that well for him regardless if cut up small. Peel off the outer skin????

Green beans can also be thickening and give some people problems.

The Slim Fast powdered shake mixes...chocolate flavor with 8 oz milk is 15 grams of protein. Put it in the magic bullet or blender and it is like a frappe.

If he likes eggs that is good protein and they can be prepared in so many different ways.

As I said before hamburg can be prepared so many different ways to try to vary it up.

Glad you got 24 hrs so far...let's hope it goes 48-72 for you guys!
Posted 6/3/2012 12:20 AM (GMT 0)
Hooray, you've gotten through 24 hours! Fantastic!! I do hope this continues, again once these leaks cease, you can concentrate on the other issues.

As for the diet, I was different when I came home. I was hospitalized way too long, thus had lost over 40lbs. The hospital food, I turned my nose at, I only wanted the soup. When I came home, I had to gain weight, so I would force soup upon myself. A whopping 3 tablespoons, but would have a Ensure after every meal. After a week, I gained 7lbs, and slowly started eating everything. My bag would, with certain foods, fill up real quick.....but I was starving.

Keep a food log, restrict foods after a certain time. Alot of protein has to be given now for healing. I prepared eggs in different ways and had numerous different kinds of chicken soup. He'll get there soon!!

Continued progress :-)
Posted 6/3/2012 3:05 AM (GMT 0)

Yay, to 24 hours !!!   Not sure which Convatec you are now using, but I love my Convatec convex moldable wafer and an Eakin seal.  Not sure if anyone mentioned it along the way, but heat and pressure are key in getting a good stick.  I use my hairdryer making sure my stoma is shielded.  I have been meaning to try using the heating pad to heat the Eakin and wafer for a few minutes prior to a change.   But for now, I have just been heating them with the hairdryer before and after application.

The vents may have been contributing to the pancaking.  If I have a vented pouch, I use the little stickers which come with them to cover the vent.   The vents created a vacuum right over my stoma and sucked the bag down on my stoma.  I also make sure I leave a little air in my pouch now, so I don't have that.  My output is normally thick and it can collect there.   Spraying Pam in the bag does also seem to help.

Yeah, the hospital kitchens sometimes don't get word, or something.  For my very first meal after my ileo surgery, they sent me corn.  Thank goodness I knew I was not to have corn at that point, so I sent it back.

Even though it has only been 10-months, I don't remember what I ate at first.  I think eggs, and mashed potatoes and gravy, green beans and cooked carrots.  Mashed potatoes have never plugged me up, but I know others have posted about them. I think beef and pork are ok if cooked until very tender and cut against the grain and into small pieces.  Then, still must be chewed very well to avoid anything "stringy."  When my daughter had morning sickness, I would make her an individual serving of scalloped potatoes made w/cheese, milk, flour and margarine for lunch in the microwave.   I think meatloaf is pretty tame, too.

Here's to another 24 hours  :-)   

Posted 6/3/2012 2:49 PM (GMT 0)
Just checking in to see if there was an overnight update - I have everything crossed that you were both able to have a full night's rest!
Posted 6/3/2012 7:04 PM (GMT 0)
I have been through three surgeries from colectomy to take-down, and there were 8-12 weeks after each surgery during which I had to be very careful and limited about what I ate. For vegetables, during this time, cooked root veges and zucchini worked out very well, so carrots, potatoes, kohlrabi, but not much else. But at about the end of month 3 I could start adding things, bits of raw vegetables like salad and grated carrot. Cooked string beans never gave me any problems. Broccoli maybe wasn't such a good idea. Surprisingly, french fries gave my output a good consistency but no one should eat fries very often. There are some other complicated things like celery and asparaghus that I just haven't eaten yet and probably won't.

But for now, your husband could try cooked carrot and zuchini, but I have the feeling he doesn't like them... wink

Posted 6/3/2012 8:22 PM (GMT 0)
48 HOURS.....OH MY GOD!  Is it possible we have finally found a combination the works and won't leak?   I am almost afraid to hope.  We are going to try for 72-80 hours and I will change again after I get home Monday night from work (unless something happens).

Bill slept in the bed last night for the first time in over two months.  He did not sleep well....but that could be the mattress.  I have noticed that my back is aching a bit as well and the mattress is only a few years old....was top of the line Serta but for whatever reason it seems to be breaking down rather quickly.  Maybe once we get past all of this we can look for something else.

Just finished ripping out the last of our carpeting and padding in preparation for laminate flooring which comes in mid-June.  So a hot shower and two Loritabs....I am ready for my nap.  Back to work tomorrow and hoping the worst of all of this is behind us.  Thank you all and hope you are having a GREAT day!

Posted 6/4/2012 3:08 AM (GMT 0)
48 hours! Yay! :-)

I vote that you make that man of yours a nice meatloaf. :-)
Posted 6/4/2012 3:01 PM (GMT 0)
Hope your return to work is uneventful for hubby when you are out of the house. YAY on the 48 hours and hope this is the start of you both being able to manage this so it is tolerable and you both can start catching up on the much needed rest. Stuff in the house can wait..focus on your well being for the both of you.
Posted 6/4/2012 10:29 PM (GMT 0)
Well I got through my first day back at work but I am really tired. Not surprising I guess because although I slept well last night, I do have to be up at 5:00 am to be at my desk by 6. I checked on Bill just before lunch...he did not eat any breakfast because he didn't know what to make for himself. I suggested he eat some yogurt and some sliced peaches with it.

I don't know if he ate lunch or not. This is my biggest worry because he never has eaten 3 meals a day let alone the six small meals the surgeon suggested. He was always just coffee, coca cola, then ate dinner and snacked at night. While I was home, I made sure he ate breakfast, some Ensure mid-morning if possible, lunch, mid-afternoon snack of some kind, dinner, and then a snack in the evening. Now that I'm not there, he is reverting to no food during the day. Since he has already lost a total of 53 pounds since cancer was diagnosed back in January, this has me worried.

He hates the Ensure but will drink it if I force him to. But there is only so much I can do when I am at work for ten hours....bought him those chicken salad/cracker combos at 99 cent store and some deviled ham. He had hot dogs yesterday for lunch. Not sure what we are having for dinner because my back is in agony (did too much over the weekend with the darned carpeting) and I sure don't feel like cooking anything. We are both very tired of canned soup. The man pretty much used to live on sandwiches....would you believe that bologna is his favorite aside from White Castle cheeseburgers that is. I am married to a 61 year old child!
Posted 6/5/2012 2:28 AM (GMT 0)
Peanut butter and jelly for lunch if all else fails.  Have you been able to get him to try the SlimFast protein shakes...just put the scoop that comes with the can in 8 oz of milk....stir, shake or put with some ice in the magic bullet or blender.  15 grams of protein.  Taste much better than Ensure I think.

Hot dogs...be careful of the casings...some are tougher than others and harder to digest/pass.  The Kayem brand seems to be softer than alot of other brands.

Hubby really likes the frozen Stouffers Mac and Cheese and the Fettucine Alfredo which is very easy to do in the microwave when I am not around to cook.

Progresso has some great soups...hubby likes the Chicken Pot Pie one and there is a Chicarina one.

Having to work is tough and worry about his eating or not when you are not around.  Hard boiled eggs are good protein too.

 

Posted 6/5/2012 12:17 PM (GMT 0)
This may be a lot of work, but could you put food into containers that he could just pull from the fridge and eat? I did something similiar in the freezer when I was in the hospital so all my husband had to do was let it thaw while he was at work and put it in the freezer. For you, it could just be remove and eat! Hard boiled egg is a great one, cottage cheese, yogurt, avocados for good fat? Sounds like you have a picky eater on your hands ;)
Posted 6/5/2012 7:25 PM (GMT 0)
Uh, traffic donna - I hate to be a spoil-sport here but Bill needs to grow up and take control of his life back. HE should be changing his appliance not you and HE should be able to come up with something to eat for breakfast and lunch while you're at work. Your enabling his dependence on you and it's not going to go well for either of you I can promise. Also, he needs to see the "wound" or "ostomy" nurse on staff in the surgeon's office that performed his surgery to get a handle on these appliance and pouch issues.

Cleo
Posted 6/6/2012 1:28 PM (GMT 0)
Donna I can understand what you are going thru.....I myself "spoil" my husband and cater to him a lot. Always have in our 44 years together so I guess it's too hard to change now...lol.

That being said.....He is self sufficient when he needs to be. He can and does do his own maintenance but when I am home and around we work together as a team. Maybe that doesn't seem the way to go for most people but honestly from the moment he gets out of the shower we have that wafer on in under a minute with the extra pair of hands in the process.

I do however make sure there are things in the house and fridge as I am out a lot during the day and not here for lunches and most time breakfasts as my days start early. We live in a very active retirement community and by 9am or 10am I am gone most days. Plus I take trips with the girls once or twice a year for 4-6 days so he is on his own and survives just fine.

You do need to impress upon him that he has to have a goodly amount of fluids and the protein as stressed really helps the healing process. When the output doesn't cooperate and there is leaking problems, people assume eating less is better and that is not the case as he has to be nourished.
Posted 6/6/2012 1:40 PM (GMT 0)
Well, different relationships have different dynamics, and as UC Wife says, it's hard to make major changes after a long time.

But I wonder, has he mostly been healthy his whole life? If so, the big change for him is that he can't just get away w/things like he used to -- not eating or not eating appropriate foods or not drinking fluids etc. I think many of us have gone through a phase of denial when we first got sick, that we could just continue our old habits and everything would be fine. I did all kinds of things for a long time until I just really got it that I wasn't like a lot of my friends anymore, the consequences of neglecting my health were worse for me than for them.

Of course, some of this awareness also happens naturally w/aging.

But cancer is such a hard one, coming on so fast -- there are so many changes to be made at once, and the consequences of poor choices can be so severe. I hope he can find the will to live and to fight and to get it that eating and drinking is part of that fight now (maybe framing eating lunch in this macho way might help).
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