My stoma is a juvenile delinquent!

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Hayleybaby
Regular Member


Date Joined Aug 2007
Total Posts : 76
   Posted 10/3/2007 4:16 PM (GMT -7)   
Hello ALL! :-)
 
Well I made it home Saturday about 3pm and have basically been sleeping most of the time since. I was sent home with Vicodin who is my best friend now! tongue   I am doing well. I have had an
in-home-nurse come to see me twice now to observe me changing "the goods" and to inspect my incision. She will take my staples out next Monday-oh that is going to feel so good. I think I have the changing part down, but its the emptying that is difficult for me. My STOMA is a juvenile delinquent!!! I no sooner get it empty and clean and it is going again. Ugh!! It just won't stop going and it won't listen. I feel like I have a newborn baby in the house again.
 
And how do you empty the bag in a public restroom when it is so thick and won't come out of the bag and you really can't rinse it? I practice at home sitting as far back on the toilet as I can and just squeezing and squeezing but it sticks and if I don't get it all out it is just very heavy and tugs on my sensitive stomach too much??? I seem to be emptying 10-12 times a day and thats at about 1/2 full. Is this normal?
 
So I need emptying advice please, what's the best method, any tricks, anything to make it easier? How many times do you guys empty a day?
 
Thanks for the input and prayers and the continued best support EVER! :-)
 NEW me calls for a NEW profile :)
Ileum stricture removed laporscopic May 23, 2007
Subtotal colectomy & ileostomy September 24, 2007
Currently tapering off prednisone from surgery will be done and officially med. free in 3 more weeks :)
Will need rectum removed within next 10 years
 
Allergic to: Asacol, Pentasa, Imuran, Paxil, Zoloft, Penicilian, Ampicilian, Humira, and Vancomycin (sp?)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/3/2007 4:28 PM (GMT -7)   
well at first it will be really active. But i am not sure why yours is so thick, it's usually pretty runny at first. I put those gel tabs in mine to thicken it up when i go places, and it does make it harder, i just kind of push it down like toothpaste, then stick the tp in it and get the rest out. I dont' get it as clean as i would like in public though.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/3/2007 4:30 PM (GMT -7)   
Hayley,

WOW you sound like you are doing GREAT! My stool was like oatmeal and hard to get out of the bag so I added some juice to my diet and that helped me a lot. When the stuff is thick, I squeeze my bag like a tube of toothpaste and get as much out as I can then I keep a water bottle by my toliet to rinse my bag. I pour a little water into the bottom of my bag and swish it around. When I go out to dinner, go into the handicap stall and put water in my bag using the private sink. However, since I stated drinking more juice, I do not need to add water anymore. I have slow motility so my system is really SLOW. My bag stays empty until 2-3pm. I only empty 2-3 times per day and it only half full. For a while, your bag is going to feel heavy - like a small weight pulling on your stoma and stomach. As you heal, you wont even feel your bag anymore. It took me about 3 weeks to get over that heavy feeling. Also, do not try to get all your stuff out of the bag...you do not have to competely empty your bag. Although, I am still pretty compulsive with my bag and stoma. This process is still very new to me and I am constantly rinsing my bag and cleaning my stoma with wipes. It just feel cleaner when my stoma is not coated with stool.

You have great questions. Keep posting and I will try to help as much as I can.

Hayleybaby
Regular Member


Date Joined Aug 2007
Total Posts : 76
   Posted 10/3/2007 5:16 PM (GMT -7)   
Amey-- Did you have any kind of coloectomy or removal(s) at the time of your ileostomy installation? Or are you just temporarily disconnected??

summerstorm--Mine was very watery and for the first 4 days but I been eating more bananas and graham grackers and marshmallows to thicken it up. Maybe I am eating too much of them??
 NEW me calls for a NEW profile :)
Ileum stricture removed laporscopic May 23, 2007
Subtotal colectomy & ileostomy September 24, 2007
Currently tapering off prednisone from surgery will be done and officially med. free in 3 more weeks :)
Will need rectum removed within next 10 years
 
Allergic to: Asacol, Pentasa, Imuran, Paxil, Zoloft, Penicilian, Ampicilian, Humira, and Vancomycin (sp?)


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 10/3/2007 5:22 PM (GMT -7)   
Mine will go from super thick to completely watery at the next poop. :) I've learned to just not worry if I can't get it all out. At first, I wanted it ALL out, now, I'm happy if I can get most of it out. I am about five weeks out from surgery, and mine still goes and goes. I can't understand it, if I have dinner at 6 o' clock in the evening, and don't eat again, the darn thing can still manage to go, even at 8 AM the following MORNING! I am hoping it slows up soon. People keep telling me it will.
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 10/3/2007 5:23 PM (GMT -7)   
Yeah,  i try and carry a small water bottle with me.  Just squirt a little water in  the bag and it'll all come out nice and easy.
 
The staples.  Never felt a thing.  It was like removing them from paper. Clip and pull.
 
Crohn's for what seems like forever
Bagged in August 2006


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/3/2007 5:39 PM (GMT -7)   
Hayley,

I had a TC 7 years ago but it did not help. I have a perm Ileostomy. I did not have any of my small removed. I do not have a short bowel. I cannot recall, why did you have the surgery? Were you consipated like me or incontenent? My stool is normally always thick no matter what I eat and my bag stays empty for the first 3-5 hours after I eat. I constantly feel very full and I do not eat that much because of that.

Hayleybaby
Regular Member


Date Joined Aug 2007
Total Posts : 76
   Posted 10/3/2007 5:51 PM (GMT -7)   
Amey,

I had all the large intestine removed because I came up allergic to all medications that are helpful to the colon--Imuran, Pentasa, Asacol, and Humira and after 9 years sulfasalazine stopped working. I did not have any medication options left to treat the colon so out it came. It was bleeding daily and making my hemaglobin drop rapidly. Within a week I went from 9.5 to an 8.9 and then to a 7.5 three days later. Now after 2 units of blood and the evil colon removed I am holding at an astonishing 11.1 :) My surgeon said my rectum really needs to come out but it was just not a good time for me. Whatever he meant by that. I will have to ask him what he meant when I go back for my 4 week check-up. Do you have a rectum still? If you had a TC 7 years ago how were you going poo prior to the ileostomy? Was your small connected to your rectum?
 NEW me calls for a NEW profile :)
Ileum stricture removed laporscopic May 23, 2007
Subtotal colectomy & ileostomy September 24, 2007
Currently tapering off prednisone from surgery will be done and officially med. free in 3 more weeks :)
Will need rectum removed within next 10 years
 
Allergic to: Asacol, Pentasa, Imuran, Paxil, Zoloft, Penicilian, Ampicilian, Humira, and Vancomycin (sp?)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/3/2007 6:27 PM (GMT -7)   
I can't remember for sure where I read this hint, and I have to admit that I don't have the thick stool problem - mine is usually pretty watery, but I recall hearing/reading that folks have used a spray coating like PAM sprayed into the tail of the new bag. I have never tried it.

Maybe someone else has heard about this - Judy? Shaz?

I may have read about it as a hint in the UOA Ostomy Quarterly from way back when...
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/3/2007 6:30 PM (GMT -7)   
I do still have my rectum just incase I ever opted for a reversal. However, I do not see myself ever giving up my bag. After my TC, I was still very, very ill. I could not have a BM and when I ate, I would vomit. My surgeons tried to revise my colectomy twice to help me, but I still was ill. Like you, my blood work was horrible. All of my eletrolytes were dropping faster than the nurses could give them to me through an IV. I was constantly in the hospital with low potassium, magnesium, gluclose, protein, ect. My kidney were functioning at 30% and my heart was struggling because my blood was low in oxygen. This surgery saved my life. I had a blood test 2 weeks ago and everything was normal! It was my first normal blood test in seveal years! I am so grateful!

sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 10/3/2007 8:17 PM (GMT -7)   
Oh yeah, Hayleybaby, I forgot one other thing I like to do - I use baby wipes to clean just the end of the bag, Sometimes if I use TP, it comes apart and stays in the bag, or I'm a clutz, and I end up with poo on my fingers. Gross. The baby wipes do a better job of cleaning up the end of the bag, and I don't think they hurt anything, because I only use them on the end of the bag, never on my stoma or anything like that. You can get travel packs to keep in your purse. They're good for anykind of clean up necessary!
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/4/2007 6:00 AM (GMT -7)   
If your stool is normally thick, you can use the closed end pouches and when it needs to be emptied, you take it off (while standing, which I like in a public restroom) and empty it through the large top opening, and put it back on. The nice thing about the closed end (at least the in the Convatec brand) is that they come 30 to a box, they are cloth covered and insurance usually pays for 2 boxes a month, so if you need to, you can just change the pouch and throw away the old one.

My stool is like water, but I got used to the closed end pouches and I still use them. I hate clips, and I don't like how dirty the velcro can get. If I think I may not have enough time to empty it without my stoma spouting off, I just change it quickly. No sitting on a public toilet for me, lol.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/4/2007 6:11 AM (GMT -7)   
I use the closed in pouches by Hollister when ever I am running, biking, or teaching my fitness classes. The pros are that they are discreate and comforable. The con is that when you go to empty the bag through the big opening, you get a splash from the toliet and toliet water will get on you....EWWWW. The lower you emplty into a toliet, the less of a splash you get. However, I do not like to get my hands and face that close to a toliet - especially in a public restroom.

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/4/2007 6:18 AM (GMT -7)   
Always throw some tissue into the toilet before emptying, then aim for the tissue. It prevents splashing ;0)
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/4/2007 7:12 AM (GMT -7)   
Sweet! Thanks Judy! You're awesome.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/4/2007 12:30 PM (GMT -7)   
Rachel,

I'm so glad that you're home and are doing well. Vicodin was also my best friend after surgery. Pain meds will make your output more solid, and that will loosen up once you're not taking them anymore. The frequency of the output will also slow down over time. Once you heal up, it will not hurt your abdomen to have some weight in the bag. Hang in there, you're doing great!

:-) Cecilia
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


Hayleybaby
Regular Member


Date Joined Aug 2007
Total Posts : 76
   Posted 10/4/2007 5:33 PM (GMT -7)   
flchurchlady,

In the midst of all my surgery and medicated days, I forgot to congratulate you on your anniversary. Does this mean we will have the same colectomy anniversary together now---Sept. 24th :)
 NEW me calls for a NEW profile :)
Ileum stricture removed laporscopic May 23, 2007
Subtotal colectomy & ileostomy September 24, 2007
Currently tapering off prednisone from surgery will be done and officially med. free in 3 more weeks :)
Will need rectum removed within next 10 years
 
Allergic to: Asacol, Pentasa, Imuran, Paxil, Zoloft, Penicilian, Ampicilian, Humira, and Vancomycin (sp?)


Arundinaria
Regular Member


Date Joined Apr 2007
Total Posts : 160
   Posted 10/4/2007 6:13 PM (GMT -7)   
Hollister makes lubricant deoderant I think it is called adapt. This helps clear the bag for me, but I am sort of locked in to a clean bag and I wash it out every time I empty. I use Hollister open end pouches and just squeeze the end open and add about a cup of warm water, then swixh it about. I usually have to do it three times. I also try to regulate things so that I don't have to use public rest rooms. Drink more water. More Water MORE WATER
Arundinaria
When there are no more choices, tha decision is easy!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/4/2007 7:20 PM (GMT -7)   
wow that is quite the regimen! i tried that stuff you are talkign about wasnt' impressed, i just use a little squirty bottle, and if i get soem on the outside i use a little bit of mouthwash on a piece of tp and that usual cleans it off, and if it doesn't get rid of it, it at least kills the germs, lol

Hayleybaby
Regular Member


Date Joined Aug 2007
Total Posts : 76
   Posted 10/5/2007 10:42 AM (GMT -7)   
I'm so excited I just got my first official order via UPS. It's kinda like Christmas seeing how well I did on my first order. And it came with a catalog. WOW. I get to do more shopping and I don't even have to pay for it. Hey to me shopping is shopping :) no matter what your buying.
 NEW me calls for a NEW profile :)
Ileum stricture removed laporscopic May 23, 2007
Subtotal colectomy & ileostomy September 24, 2007
Currently tapering off prednisone from surgery will be done and officially med. free in 3 more weeks :)
Will need rectum removed within next 10 years
 
Allergic to: Asacol, Pentasa, Imuran, Paxil, Zoloft, Penicilian, Ampicilian, Humira, and Vancomycin (sp?)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/5/2007 3:53 PM (GMT -7)   

Hayley,

Also, the pain killers, though they may be needed, sometimes cause a slow down in output, or thickening of stool.  They can also make ya feel a little down too.  Are you able to move around more each day?  That helps to work those sore, disturbed muscles too.  Are you getting any fresh air, getting outside any?  A change of scenery?  How have you been doing?

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/5/2007 5:55 PM (GMT -7)   
LOL Hayley, I just placed my first official order last week. I was not sure what to order ..wafers with tape, wafers w/out tape, wafers pre-cut, bags in all shapes in sizes...minis, closed in, open end with clip, open end with lock and roll system. Sheesh, so much to choose from. I ordered the 1 box precut wafers for my car (emergency) and bags and I order 1 box w/ tape and 1 box w/out tape. Then I ordered 2 boxes of bags in 2 different sizes and finally, some no sting spray. My order was $586.00! YIKES!!! I certainly hope my insurance company is going to pick up the bill. I had to sign a form for Edgepark stating that I agree to pay for what ever portion my insurance does not pay. ACCKK! I am not shopping again until I find out exactly what I have to pay..if anything. It was fun flipping through the catalog and saying..I'd like a little of this and a little of that. I was elated with I got my box in the mail!

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/6/2007 7:02 AM (GMT -7)   
If your insurance doesn't cover it all, make sure you call the company (Edgepark, Byram, whoever) and get your balance reduced. They usually charge the insurance companies way over retail pricing. Pay attention to your EOB's, they usually say exactly what the supplier can charge you, and sometimes you can even get them to charge you less than that.

See, if you knew what wasn't covered, or that you maxed out for the year (which the supplier is supposed to know and keep track of, but are always behind) you could look on the internet for the best prices. And let me tell you, you can get some good prices out there. I always argue on the premise that they aren't doing their jobs (which they don't, billing is always months behind) and because of that I shouldn't be punished by being charged exhorbitant amounts. They always come down.

I've found places on the internet that charges less than half of what they charge my insurance company.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


sandybeaches
Regular Member


Date Joined Aug 2007
Total Posts : 22
   Posted 10/6/2007 8:47 AM (GMT -7)   

With the thick output, one thing that will help a lot is drinking 8-12 glasses of water a day.  Also, as you wean off the medication, your output will get thinner.  And be sure to eatly.  I eat  at least 5 times a day to maintain my weight.  Small mini meals do better for my output.

Sandy B


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/6/2007 10:31 AM (GMT -7)   
Thanks Judy! That is great information to know!

ATTENTION AL NEWBIES...READ JUDY'S MESSAGE ABOVE about SUPPLIES AND INSURANCE.
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