bag is gone

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johnnybegood
johnnybegood Member Posts: 1,117 Member
edited March 2014 in Colorectal Cancer #1
well i made it thru the reversal 4 days ago but found out after only having the bag for 5 weeks i have lost some feeling and control over how to go again.does anyone have any sugestions on helping with this problem,ya know we just all want to be "normal" again.God bless and my prayers are with everyone.....johnnybegood

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  • lisa42
    lisa42 Member Posts: 3,625 Member
    #2
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    prayers and thoughts
    Hi Johnny,
    I'm sending you the best wishes for recovery and for growing used to the "new you". I will be praying for you so that you will feel normal soon again! I wish I could give you more firsthand advice, but I didn't have the colon/rectal surgery. I do know from having my liver surgery, however, that there's time involved in recovering from all surgeries- just the anesthesia alone stays in your system for a while. I'm sure many here will come to your rescue with advice soon. Hopefully, there's also a support nurse from your hospital, oncology clinic, etc. who can be of help and support to you- but there's nothing like talking to someone who's been through the same thing you have- so I'll sign off now.
    Do take care and have patience- normalcy doesn't happen overnight.

    Blessings to you,
    Lisa
  • hollyberry
    hollyberry Member Posts: 173
    #3
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    lisa42 said:

    prayers and thoughts
    Hi Johnny,
    I'm sending you the best wishes for recovery and for growing used to the "new you". I will be praying for you so that you will feel normal soon again! I wish I could give you more firsthand advice, but I didn't have the colon/rectal surgery. I do know from having my liver surgery, however, that there's time involved in recovering from all surgeries- just the anesthesia alone stays in your system for a while. I'm sure many here will come to your rescue with advice soon. Hopefully, there's also a support nurse from your hospital, oncology clinic, etc. who can be of help and support to you- but there's nothing like talking to someone who's been through the same thing you have- so I'll sign off now.
    Do take care and have patience- normalcy doesn't happen overnight.

    Blessings to you,
    Lisa

    Hi Johnny
    I have a permanent colostomy but, I know a lot of people on www.uoaa.org who have had reversals. Maybe you could visit that site and get some advice.
    Congratulations on the reversal and hang in there; I hear it does get better over time.
    hugs,
    Hollyberry
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #4
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    hollyberry said:

    Hi Johnny
    I have a permanent colostomy but, I know a lot of people on www.uoaa.org who have had reversals. Maybe you could visit that site and get some advice.
    Congratulations on the reversal and hang in there; I hear it does get better over time.
    hugs,
    Hollyberry

    the j pouch group
    Holly,
    Your suggestion just reminded me of a website I'd seen in the past for this kind of support. It's called "the j pouch group". Google "the j pouch group", then click on their discussions tab & you'll come across a good and active group for support in all kinds of issues dealing with having the ileostomy, take down/reversal surgeries, etc. I bet you'll find a lot of help on that site.
    Best wishes!
    Lisa
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #5
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    lisa42 said:

    the j pouch group
    Holly,
    Your suggestion just reminded me of a website I'd seen in the past for this kind of support. It's called "the j pouch group". Google "the j pouch group", then click on their discussions tab & you'll come across a good and active group for support in all kinds of issues dealing with having the ileostomy, take down/reversal surgeries, etc. I bet you'll find a lot of help on that site.
    Best wishes!
    Lisa

    Your Body....
    Will adapt to changes in itself for a long time...It is called Phantom pain but in any course your body got use to the idea of a different type of waste ejection. Now that the reversal has been done it has to reprogram muscle memory and it takes a while for it to adapt to the new/old way of ejection. Remember it took the Lord 6 days to build the earth, and even He had to rest on the 7th day......Take your time and it will come back to you....God Bless you........
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #6
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    Buzzard said:

    Your Body....
    Will adapt to changes in itself for a long time...It is called Phantom pain but in any course your body got use to the idea of a different type of waste ejection. Now that the reversal has been done it has to reprogram muscle memory and it takes a while for it to adapt to the new/old way of ejection. Remember it took the Lord 6 days to build the earth, and even He had to rest on the 7th day......Take your time and it will come back to you....God Bless you........

    life does get better
    thanks so much for everyones support i really like the 6 days and resting on the 7th reply.My sister told me an uplifting comment i would like to share.Our lives are like a book,and right now we are on just one page of the book,it will get better......thanks again
  • Shayenne
    Shayenne Member Posts: 2,342
    #7
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    johnnybegood said:

    life does get better
    thanks so much for everyones support i really like the 6 days and resting on the 7th reply.My sister told me an uplifting comment i would like to share.Our lives are like a book,and right now we are on just one page of the book,it will get better......thanks again

    Awww....
    I loved that comment by your sister, taking one chapter at a time, you will be just fine hun :)

    Huggsss!
    ~Donna
  • tiny one
    tiny one Member Posts: 465 Member
    #8
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    I'm glad your reversal went well. This is the hard part now. I had my reversal in Dec 07. I had had chemo and radiation which can make a difference. My bag was on for 10 months. It's normal to have frequency for quite a while. I go small amounts now. For some they never go back to how they were. Don't get discouraged it will get better. I had to use pain pills for awhile also. Here's some things to make it easier for you. Find a good barrier cream for the soreness. Use super soft toilet paper. I take lomotil which has been a godsend, however some can't take it. Some take immodium. Some foods will make you go more. Sitz baths can be soothing. Wearing pads or depends will help, so you don't soil your clothes, especially if you need to get out in public. Smaller meals will make it easier on you. A word of advice if you experience depression get help please. Sayiong prayers that your reversal will be easy on you.
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #9
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    tiny one said:

    I'm glad your reversal went well. This is the hard part now. I had my reversal in Dec 07. I had had chemo and radiation which can make a difference. My bag was on for 10 months. It's normal to have frequency for quite a while. I go small amounts now. For some they never go back to how they were. Don't get discouraged it will get better. I had to use pain pills for awhile also. Here's some things to make it easier for you. Find a good barrier cream for the soreness. Use super soft toilet paper. I take lomotil which has been a godsend, however some can't take it. Some take immodium. Some foods will make you go more. Sitz baths can be soothing. Wearing pads or depends will help, so you don't soil your clothes, especially if you need to get out in public. Smaller meals will make it easier on you. A word of advice if you experience depression get help please. Sayiong prayers that your reversal will be easy on you.

    ups and downs
    thanks tinyone your advice was helpful in fact right on the dot on all symtoms.maybe this is how its going to be now,going small amounts at a time.i am working on muscle control hoping that will help.only having the bag for 5 weeks i didnt think it would be like this.i am taking one day at a time and checking in with my friends here helps.we are all in this together,helping eachother......thanks again
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #10
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    johnnybegood said:

    ups and downs
    thanks tinyone your advice was helpful in fact right on the dot on all symtoms.maybe this is how its going to be now,going small amounts at a time.i am working on muscle control hoping that will help.only having the bag for 5 weeks i didnt think it would be like this.i am taking one day at a time and checking in with my friends here helps.we are all in this together,helping eachother......thanks again

    Even though I have a permanent ostomy....
    I still exercise my (whats left of it) outer spincter muscle by just trying to pinch close and then release...this was an exercise used for incontinence also and seems to build up the muscles down there...You are probably doing the same exercise but if not its just another idea for you to try......God Bless ya......
  • tiny one
    tiny one Member Posts: 465 Member
    #11
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    johnnybegood said:

    ups and downs
    thanks tinyone your advice was helpful in fact right on the dot on all symtoms.maybe this is how its going to be now,going small amounts at a time.i am working on muscle control hoping that will help.only having the bag for 5 weeks i didnt think it would be like this.i am taking one day at a time and checking in with my friends here helps.we are all in this together,helping eachother......thanks again

    I too didn't think my reversal would be so hard to recoop from. My surgeon didn't prepare me at all for what I was in store for. Please don't get discouraged, it takes time and patience. This is so hard to do when it seems like all you do is sit on the throne. I found that some foods really do a mischief. I eat alot more chicken now instead of beef. Don't avoid eating though, just do smaller amounts. God bless

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