I'm so aggravated! I wanna go home!

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praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/31/2008 5:11 PM (GMT -6)   
This bag they have on me is so long and it keeps getting so heavy and its filling with air so I can't tuck it! I have a two piece on but my belly is still so tender that i can't snap the pieces together. I don't even think I'm cleaning it right as its taking me forever. I just want to go home and bury my head under my covers.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/31/2008 5:18 PM (GMT -6)   
Hey Praying,

It's ok -- just remember that you are only a couple of days out of surgery. It is better to have that air OUT and have the air stuck INside. Much less painful!! So keep your chin up... it will slow down and yes, you will be able to tuck shortly. Be patient my friend. It does get better.

Are you still moving and walking and getting up and sitting in the chair?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 1/31/2008 5:24 PM (GMT -6)   
This is VERY normal. In fact, it is a sign you are doing well, if there's gasses in the bag. It WILL get better, but it takes time, my stoma didn't fully calm down until about 3 months out. It got much better in a few weeks, but it took a full 3 months to kinda get normal-ed out.
It takes time to get used to cleaning the bag as well. Like anything else it has a learning curve attached to it. You're doing great if you are even attempting to change and clean. I couldn't even TRY until about a week after surgery.
You're doing GREAT!!!
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!


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 1/31/2008 5:27 PM (GMT -6)   
Praying,

You're right! The snapping is very painful for a while. You have to push really hard to get it to snap. You may want to attempt a one-pc until your a little more healed. The bags are long and annoying. I always fold my bag in half and put it under my panties. I cannot have a hanging bag. Once you get home and settled, you can try different bags and brands. For now, you just have to tolerate what they give you. Remember, you are going throught the hardest part right now. It only gets better from here.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/31/2008 5:50 PM (GMT -6)   
Thanks u guys. Now I feel totally horrible about complaining when I just read elishas post about sammie. I feel so bad for her. I'd been worried about her and I didn't expect her to have so many setbacks
Yes peggy, I'm up and sitting and walking.sf, yeah I'm emptying and they have me on solids. I hope its not too soon.
Amey I'm trying to get thru this part. Its tough tho, especially with this ring going thru my stoma. Its so big and my stoma is shrinking. So cutting a flange to fiy is something that I'm not sure how to do bc if I cut the flange 2 fit my stoma, the ring won't fit thru. The nurses here aren't much hjelp at all when it comes 2 this thing.
N e way I feel like a jerk complaining. Sammie is n my prayers.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


donut
Regular Member


Date Joined Jan 2008
Total Posts : 54
   Posted 1/31/2008 6:07 PM (GMT -6)   
The ring(I had a big bar) won't be there for long, but it is very difficult to get the flange to lay down around it properly. My home nurse was a big help with that when I got home. We just worked around it until the bar came out 10 days later...then things got much easier. I, too, thought the bag seemed huge, but I bought underwear two sizes bigger than usual and then roll the end of the bag up and tuck it up . Works like a charm.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 1/31/2008 7:50 PM (GMT -6)   
Praying,

Does your insurance cover home heatlth care? I had a home health nurse come to my home every week for about a month. They were helpful with changing and questions. The hospital administator can contact your insurance and set up home health care on your behlaf if you request it.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 1/31/2008 9:58 PM (GMT -6)   
Praying,
What you are experiences is completely normal, it's also difficult to empty the bag in the hospital because they usually want you to empty into a container and have 1/2 the toilet with a urine cup! Trying to juggle the toilet paper and the container is difficult to say the least. I usually pile up the toilet paper and set it on my leg, empty and wipe, but I do remember using a lot more toilet paper in the beginning than I do now. It's much easier once you get home, but I went through the same thing thinking that I would never get the hang of it, but I did, you will too. I agree with the home health nurse coming to your house and I can't believe that they haven't had an ostomy nurse visit you in the hospital. Can you ask the nurses if they know of any other nurse that has experience in changing the appliance, maybe one of the surgical nurses, someone had to put the bag on you after the surgery, you would think that someone could help.

I hope you get the help you need soon and get home as soon as possible

Theresa
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/1/2008 6:24 AM (GMT -6)   
I forgot all about that stupid thing in the toilet to measure everything!  That is like a circus act trying to empty and negotiate that big Cup!  And you are still sore so moving around isn't really easy for you.  Be patient.  You are doing sooo well so quickly after surgery.  I am very impressed with your recovery.  Hang in there and don't push going home too quickly.  Let's make sure that you are totally ready.  We are all thinking of you.

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


elishasummers
Regular Member


Date Joined Jan 2008
Total Posts : 29
   Posted 2/1/2008 8:35 AM (GMT -6)   
don't worry sammie had probs with her bag too, but she was not up and about like u were your doing great by the sound of it. we all have our own emotions that which none of us can control, all u can do is take comfort in sammie condition, she is alot better today off all the machines all we can do is pray that things go uphill from now.

feel free to feel what ever you feel its part of recovering believe me

elishasummers
Regular Member


Date Joined Jan 2008
Total Posts : 29
   Posted 2/1/2008 8:36 AM (GMT -6)   
ps you are not a jerk for complaining you have the right what you went through you can say and do what ever you like and don't eva forget that.

your in my thoughts

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/1/2008 2:36 PM (GMT -6)   
Thanx elisha,
I'm glad she's feeling better.
Amey, I think my insurance does cover home care. I was supposed to have it, but this caseworker says no one in my county takes blue cross blue shield insurance for home health care. I find that hard 2 believe. Also, I don't really think she knows what she's doing. She said she was ordering my supplies but I think she ordered what I wear here at the hospital. She didn't even ask what I wanted even tho I told her anyway.
I'm worried that she ordered a lot and I won't be able to change the order. Also, I have no idea of how to order samples. I'm glad 2 b going home soon, but I just hope I'm adequately prepared...
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 2/2/2008 2:08 AM (GMT -6)   
If you put some liquid soap on your finger and put it around the flange, it will snap in much easier.

San's
Regular Member


Date Joined Feb 2007
Total Posts : 79
   Posted 2/2/2008 10:31 PM (GMT -6)   
Hi Praying,
I just read what other people have told you to do.They are all good suggestions. I am not fat,but I had four big babies when I was younger,so my stomach is frabby,so I had the advantage of snapping my bag on to my flange by pinching the flab against the flange and the bag,to snap it together.I found that it made it less painful by being able to get a hold of the skin around the two that you want to snap together.
If you don't already have some phone #s to call for different kinds of bags,I can give you some #s.
Convatec-1-800-422-8811, Hollister-1-800-323-4060, NU-Hope-1-800-899-5017, Coloplast-1-800-533-0464. If you don't have these #s,I hope that they can help you. I know what you are going through trying to find the right bag. I use the Convatet 2 piece,closed end,and I love it.fill it and through it away. You can get disposable bags at Wal-Mart in the baby section. They are just clear bags.I think they are call disposable throw away diaper bags. They have the one with the case and 1 or 2 refills. The case does not work,so don't waste your money,just get the pack of three.I hope that I have been some help to you,as I know the others have been too.
Good Luck
San's
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