Hello All - Got some questions now on living well with an ostomy

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schrek-chewbacca hunk
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Date Joined Jun 2005
Total Posts : 2666
   Posted 5/22/2009 12:21 AM (GMT -6)   
found a bag that I like from Hollister - 2 piece vented and beige.  It seems to have a different shaped tail that makes cleaning easier than the basics.  Also don't have the balloon affect.  But I have some questions.
 
I am not allowed to sit on the john yet to dispose, as my rectum is still feeling like lava burning Mount Vesuvious after 5 weeks now - I have asked before, but the pain drugs do make me forget - how long did people experience pain and being disallowed from toilet sitting.  The reason I ask is that I have evacuated whilst standing, but I am 6'9" tall and there is a considerable splatter even with a lot of tp rafting.  In fact I have clogged the bowl with too much.  So, I have a tiny office chair from costco on wheels that I have put in my bathroom (remember MIL would not let me even wash my hands in any of the others we have.)  So I sit facing forward on a soft chair and clean myself.  But what do I do when I go out, hopefully soon.  Can any body advise me?
 
Also, I do use the water bottle they gave me at the hospital for bag flushing.  How do you manage that in the kit I will carry when I am out - Is there a smaller product somebody could recommend?  My wife says take an empty water bottle for drinking in my backpack, the squirty kind, and fill at the sink.  How do I do that standing up?  And that seems kind of big, but that is about the amount of water that I use.
 
I empty about every 4-5 hours, is that normal?  I realise input/output - but that seems like a quick transit time, and sometimes a 2 emptying evening schedule.
 
Which brings me to sleep.  I have not been able to sleep at night at all.  I cat nap during the day, but I am only getting maybe 3 hours sleep a night.  My MIL says I am depressed and should go to a physchiatrist (sp?) - I think it is a more basic problem.  Has anybody had this after hospital discharge - remember that I am in the guest room so as not to disturb my wife.  But I am feeling this is starting to present a problem in not sleeping.  I am taking 4 mg hydromorphone, 2 xanax, 1 lunesta, 1 lyrica, and a percoset for breakthrough pain if necessary.  Could these drugs, which would normally zonk somebody out be doing the reverse with me?  I have never metabolised drugs well.  Any insight would be really appreciated.
 
For the gentlemen in the room, ladies please avert your eyes from this paragraph.  The clip on strip placed on the the tail of the bag stabs my testicles repeatedly - and this is not pleasant at all.  What do you do to protect your privates?  I can;t figure this out - and my doc was no help on this.
 
 
Ladies, you can come back now.  Thank you - I am very old fashioned about gender issues.  I have been called a terrible chauvanist.  hehehe  I don't think I am, I just really like treating women as special of God's gift to the earth. 
 
So far, those are my issues I could use your expertise on.  I appreciate any advice at all.
 
love to all
bob

ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 5/22/2009 2:31 AM (GMT -6)   
Hi
 
I had the exact same problem with sleeping when i came home from hospital.  I didnt sleep at all while i was in hospital so thought i would zonk out when i got back to my own bed.  That didnt happen!  I think there was a mixture of stress of going through the whole surgery, then the pain i was in, and the bigest of all being able to relax enough to go to sleep with a bag on my belly!  I went on sleeping tablets for the first time in my life.  After a few weeks i just started to relax enough to sleep.  I guess for me it was just a period of time needed to adjust and get use to my new body.
 
As for your Gentleman issue - again i experienced this too.  I bought boxers with higher waist line and inside pocket for the bag.  that made a big difference and also stopped the sweat smell from happening completly (where the bag would get pushed onto my skin it would get sweaty).  I also bought extra pairs to wear to bed - having some secure underware on while i slept helped me to not worry too much about the bag and also took the sensation away which i know helped with the sleeping.  I also angle the bag slightly more to my thigh which helps too.
 
Emptying - I empty on roughly the same schedule as you! I find that first thing, straight after lunch, tea time, couple in the evening.  Some days maybe more or less depending on what i eat/drink.  I use to get worked up about the number of visits to the toilet with UC and with the bag.  As you get better and start living your life again that worry will fade away - or at least it is doing for me.
 
I am sure more people will be able to comment on what they do - I have only been doing this for a couple months so other people will have some tips for you.
 
Keep staying positive - the recovery period will end and when you are physically feeling better these stresses are a bit more easy to face and over come.
 
Elli :)
 
Elli 28
UC since 17
Azathioprine, prednisolone, Asacol,
blood transfusions, iron infusions.
Colon Removed 18 March 09.
Ileostomy
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 5/22/2009 7:08 AM (GMT -6)   
Bob,

Your healing may take longer than the average due to your diabetes (you do have diabetes don't you?). I think you will sleep better once your MIL goes home for good! You're still in the very early stages of recovery and I would not expect huge leaps of improvement. If you feel depressed or maybe PTSD (post traumatic stress disorder) there are drugs that can help with that. Your regular doctor may be a better resource than a psychiatrist.

Sue
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


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 5/22/2009 8:09 AM (GMT -6)   
This may be a long post - sorry!

While it took my bum FOREVER (up to 1 year) to heal, I never was told not to sit on the toilet. Is that a directive from your ET or doctor? What is the difference between sitting on a chair or sitting on the toilet? You will have to forgive me, I don't know what your mobility issues are with your other health problem so I don't know what limitations you have. So ... I am concerned why MIL is still there (I would wash my hands in any ol' sink just to piss her off). I was THANKFUL my partner went right back to work (taking a couple of hours each day for 6 weeks of radiation was hard enough!) and my mom left 4 days after I got home. I am a very private person so I needed to learn how to take care of myself right away (packing my bum, cleaning up after myself, yada, yada). It was hard but ...

I have Crohn's so I have output about every 2-3 hours. If I am out and about I will take codeine to slow it down a bit. I don't ever use a squirt bottle, so I guess I can't recommend anything on that issue but I am sure as you get out there, you will get use to what you need to take with you as far as a 'kit'. I used to pack my purse with a boat load of items!!! Now if I am going out locally, I just carry a one-piece mini bag 'just in case.' It doesn't take up any room (fits in my pocket!) and it will hold me until I get back home. I can always redo it then with my regular eakin seal and two piecer.

As far as the tail digging in to you, that sometimes hurts us 'God's Gifts' too :-). There's men's and women's underwear that have pockets for bags (as Elli mentioned) that kind of put a 'buffer' between bag and skin. One of the places is: http://www.ostomysecrets.com/ The gal that started the company has an ostomy herself.

As far as sleeping - I admit I was EXTREMELY depressed. I took Ativan, it helped me relax and sleep. I also kept busy as I physically and mentally could during the day to help keep my mind off of what I went through. I went camping with girlfriends after one month, sore bum and all. Nothin' like the great outdoors to quickly learn how to stand and poop like men pee! And, no one cared where I washed my hands ... Oh. Back to MIL. I think ANYONE would be depressed with a person like her around when trying to cope with such a mentally and physically exhausting surgery. Plus, I wouldn't be able to sleep in a bed that wasn't MINE or without my significant other for very long. We don't have a guest room, thank goodness ....

Didn't you mention that your pastor said he would help you? I would take advantage of that and send MIL packing. Sorry, I just don't think she is helping you in anyway recover, in fact, quite the reverse. Just my opinion, and like they say "Opinions are like ... oh ... wait ... never mind.
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/22/2009 12:22 PM (GMT -6)   
I was never told to not sit on the toilet either. I would think that the reason they have told him that is because (i dont know how to say this without being graphic) is that spreading your legs to sit on the toilet enough to empty the bag into it would make your butt cheeks spread apart. And then that might cause problems with his pain?
WOW 6'9! I can see that you would have some splatter, lol. maybe you could do what they do at the hospital and empty into a container,although that is just asking for a spill, lol.
I dont rinse mine with water everytime in fact i rarely do, unless i eat something thatis very thick. And i sure dont take a water bottle out with me! I would get too grossed out by keeping tht in my purse, lol. Maybe you could use the handicap bathrooms lots of times the toilets are taller and kind of crouch?
Pain pills make it hard to sleep sometime,s even though they knock you out they make you have weird dreams and such and i never sleep well with them and wake up a lot, after i have beentaking them a while.
Remeber that meds go through you faster so you may need to take your lunesta in halves, if it's scored that is.
And unless it would hurt you get back in bed with your wife!
Your bag has clips, instead of veclro? the easiest thing to do would be get the ones with velcro. Then you wouldnt have that awful clip i hated that thing! And it dug into the side of my leg (obviously not man parts, since i dont have those, lol) but once i started turning my bag up into my undies and putting tape on the tail it softened the points and kept it from digging into me
Your emptying schcedule sounds fine like you said depends on what you eat though.

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 5/22/2009 2:56 PM (GMT -6)   
I never 'rinse' either. The et nurses did show me this but really...who has the time?!?!? I am way too busy--besides within a couple of hours it will be filled with poo again! In the beginning I would take alcohol wipes with me to clean the tail part. Now I'm an old pro and don't even do that. Like the others said, since I don't know your exact bum issues I cannot offer advice other than do whatever hurts the least. Poking...try tucking the clip in the waste band of your shorts if you can....men don't have as many undie choices as women...otherwise I would suggest changing styles and see what works. It truly can take months to heal and for everything to feel 'normal' again...it will get better.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/22/2009 10:22 PM (GMT -6)   
i dont know what kind of undies you wear but i think that if you changed to the type that have the legs on them, you know whaat i mean? you could tuck it up in those very easily

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 5/22/2009 11:17 PM (GMT -6)   
Sorry, I read the male part. What about just switching from a tail closure to a velcro closure. The tail closure was stabbing my female parts and didn't feel comfortable, but the velcro closure...I hardly know it's there.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Colozal. Failed Entocort. Failed Rowasa. Failed Steriods. Failed Steroid Enemas. Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira(severe reaction).
May 7th - Partial Colectomy - Sigmoid Rectal Ostomy - Partial Rectum left for possible re-connect later. Trying to get used to this new life with a bag.
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 - 21 months old


schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 5/23/2009 4:47 AM (GMT -6)   
Thank you for all your suggestions.  I appreciate it.
 
Regarding the toilet and not sitting on it...The doc said not to sit on a donut ring or the john as it would spread the wound more open.  So hopefully when that heals up we can move ahead with a more normal emptying process.
 
Yes, I am diabetic as well, and that may contribute to my healing issue.  The doc originally said four weeks...but he is now saying another four weeks on that darn vac - which has to come back and then off if the irritation is too high.  Also, many leaks with the vac, and the nurse is only 3x a week.  My wife, will remove it if it starts leaking and then we go wet-to dry.
 
My visiting nurse says that 5 weeks is still very normal for surgery of this magnitutde...so I am not sure what to think.
 
It is off right now, and the bum feels much better when the machine is off. 
 
I slept four hours last night...but I had to stay completely awake all day yesterday to make it - then passed out at 8pm.  Up since.  I am going to my main doc, and will ask for something stronger than Lunesta...again- I don't get much out of medicines ...I guess wookies are too big for normal pills! heheheh
 
love to all bob

Pin Cushion
Regular Member


Date Joined Feb 2003
Total Posts : 442
   Posted 5/24/2009 1:29 AM (GMT -6)   
I kneel down on one knee in front of the toilet to empty my pouch. As far as the clip stabbing problem. you could get shorter pouches but if you high output they fill faster.
Moderator for the Diabetes forum
 
Sigmoid Colostomy / Crohns / Type 1 Diabetic / Ostioarthritus /RLS/ Fibromyalgia / Asthma / High Blood Pressure / High Colesterol / Migraines. Ain't life a joy?



* I think it may be time for a colorful metaphor*


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 5/24/2009 3:10 PM (GMT -6)   
I always need to rinse the pouch after emptying... my output is on the thicker side, and now I don't like the sensation of having a pouch that is heavy with residue, just a personal preference.

I struggled with public restrooms for a while, at home I just keep a cup in the bathroom for rinsing. Lately, I've been keeping an empty water bottle with me in public, which I fill in the bathroom before using, and then I toss it at the end of the day.
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Proctofoam, Entocort, Remicade, Humira
10/10/08 colon removed, temporary ileostomy
11/10/08 FINALLY off prednisone after 18 months
2nd of 3 surgeries planned for '09 to form j-pouch


schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 5/25/2009 2:29 AM (GMT -6)   

Pippin, that was my solution as well in terms of traveling with a water bottle.  Good Idea I think.

I can't kneel as I have a mobility issue (Charkot Disease) which would make it hard for me to get back up.  This should correct itself however after an August surgery to insert a new titanium rod in the lower leg.

Also by then the bum should be well enough for sitting which will solve the problem.  Charmin makes a travel toilet seat cover than is so much better than the tissue ones than are occasionally available in the stall.  about 6.00  pack - they are soooo worth it.  Men's rooms are pig stuys (SP?).

Thanks for the advice!

 

love to all bob

 

 

 


awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 5/29/2009 7:52 AM (GMT -6)   
Hi bob!  I have yet to sit on the toilet to dispose, never done it since my surgery.  At home I have a 1 quart yogurt container I just put on the counter and empty the bag into while standing straight.  When I'm out and about I crouch & bend at the knees and empty into the toilet-doesn't seem to make much of any splash.
 
I have a smaller water bottle I picked up at a hardware store that is always in my pocket when I leave the house.  Works fabulous for me, I rinse every time.  I'd say it's about a 1/2 cup of water.  With some practice it's all you'll need.  I had to buy a couple bottles since the one I wanted didn't come with the lid I wanted, but regardless it was like $5.
 
Matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 5/29/2009 8:50 PM (GMT -6)   
Sorry Bob, but I think the Ladies ignored your warning and still read ALL of your post. We can have those probs too....well not entirely, since we don't have testicles, well, I mean most ladies don't............
ANYWAY sorry
The bottom of the bag kept hitting the top of my thigh (I have the opposite prob you do, since I am a shorty) so I started taping my bag to the inside of my shirt with medical tape. That way it can hang out and be comfortable, but also hidden. It also helps to support the bag when it gets full and I can't empty right away.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/30/2009 10:20 AM (GMT -6)   
ok im gonna ask this, how do yall stand putting the bottle back in your purse or whatever, you touched it after you touched your bag, which means you had poop germs and now they are on your bottle and then in whatever you put the bag in?
I am little crazy about bathroom germs though, lol. If food goes in the bathroom i wont eat it, and if a dish goes in there, or a cup or whatever, i throw it away!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/30/2009 7:56 PM (GMT -6)   
oh i thought you used the same bottle over and over and thats pretty icky, lol.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/8/2009 9:44 PM (GMT -6)   
yeah i use the same bottle at home too, if i use one. I keep a mixture of mouthwash and water in it, so it self disenfects, lol.

darksky602
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 6/9/2009 12:51 AM (GMT -6)   
I have found two ways to avoid splashing. The first is i use Kleenex instead of toilet paper. It floats and usually prevents splashing for me but i stand in front of the toilet and been over, and i am also only 5'8. Lately I flush to toilet first and then empty while there is not much water in it. By the time I have cleaned the pouch and put myself back together the toilet is full and I flush again, normally leaving no stain on the toilet. I rarely use water to flush the pouch but when I do, i use a dixie cup. Flushing the pouch while out and about I have never done.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/9/2009 7:54 AM (GMT -6)   
does the kleenex not clog your toilet?

something else to help with the spllashing, fix your toilet where it doesnt fill up as much, and it wont splash as badly.
I have made mine fill up to about 2/3 of where it should, and i very rarely have splashing, but when i go places where the toilet water level is where it should be i have splashing
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