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Quality of life after J pouch - ileostomy

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Quality of life after J pouch - ileostomy

Postby garbovatwin » Wed Sep 10, 2008 8:05 am

Would anyone be willing to share how the quality of life has changed after the colon was removed and a J pouch was created?

With an ileostomy?

After ileo removal?

If you would rather private message me ok.

jamiana
OUR world is worth saving
Question everything. Become your own Advocate.
When we find a cure for one cancer it will lead to a cure for ALL cancer
Crohn's Colitis
Rectal Mucosa Resection - Oct 2010
Rectal Surgery - Sep 2011
Stroke Sep 2012
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Re: Quality of life after J pouch - ileostomy

Postby gofisch » Wed Sep 10, 2008 8:57 am

No! Don't Private Message! I want to hear too!! :)
Frances
47, Mom
Rectal tumor (stage III) 1/31/08
6 weeks radiation/5Fu
LAR w/ loop ileo May/08
Folfox 7/08-1/09
Done with chemo 1/2/09!!!
Reversal 10/8/09, ileus, blockage, resection, home after 30 days!
4 years NED!
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Re: Quality of life after J pouch - ileostomy

Postby NWgirl » Wed Sep 10, 2008 9:11 am

All I can attest to is quality of life with an ileostomy. I haven't had my reversal yet. I thought my world had come to an end when they first told me I'd have to have an ileostomy. But I have to say - going through treatment, I'm glad I have it. It makes the diahhrea much more bearable - no "butt burn" at all. The ileo is very easy to manage, so long as you have a GOOD ostomy nurse (I do). There really isn't anything I can't do due to the ileo - so quality of life is no different with the ileo than w/o it.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model
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Re: Quality of life after J pouch - ileostomy

Postby garbovatwin » Wed Sep 10, 2008 9:39 am

NWgirl wrote:All I can attest to is quality of life with an ileostomy. I haven't had my reversal yet. I thought my world had come to an end when they first told me I'd have to have an ileostomy. But I have to say - going through treatment, I'm glad I have it. It makes the diahhrea much more bearable - no "butt burn" at all. The ileo is very easy to manage, so long as you have a GOOD ostomy nurse (I do). There really isn't anything I can't do due to the ileo - so quality of life is no different with the ileo than w/o it.


Thank you nwgirl.
can you wear slacks? did you need to rethink a wardrobe?
OUR world is worth saving
Question everything. Become your own Advocate.
When we find a cure for one cancer it will lead to a cure for ALL cancer
Crohn's Colitis
Rectal Mucosa Resection - Oct 2010
Rectal Surgery - Sep 2011
Stroke Sep 2012
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Re: Quality of life after J pouch - ileostomy

Postby CAbttkkr » Wed Sep 10, 2008 11:22 am

I had my colectomy and j pouch with temporary ileostomy done on 6/24/08. Surgery went extremely smoothly and I was eating within a couple of days ad home in a week. I have had to adjust t the ileostomy while it was healing. There was discomfort from intestinal juices coming in contat with my skin. But now, 8 weeks later, it is healed and I know what to do. I have not had my takedown which I hear is a whole nother thing to get used to. But, overall, this ain't so bad. I also have the perspective of having gotten diagnosed with stage 4 since my surgery, so I think that anything is small beans compared to that.
My wardrobe has changed a little to include baggy shirts and slacks that have a little give in the waistline. but if the ileostomy is temporary for you, you'll go back to regular clothes with 2-3 months
The moral of the story, if you need it, don't hesitate. Who needs a colon anyways?
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Re: Quality of life after J pouch - ileostomy

Postby garbovatwin » Wed Sep 10, 2008 11:38 am

CAbttkkr wrote:The moral of the story, if you need it, don't hesitate. Who needs a colon anyways?


Haaaaaa! Who needs a colon anyway....FOR SURE! I am bracing for what i believe is the inevitable when i meet with my surgeons in a week.

Thank you so much for sharing.

jamiana
OUR world is worth saving
Question everything. Become your own Advocate.
When we find a cure for one cancer it will lead to a cure for ALL cancer
Crohn's Colitis
Rectal Mucosa Resection - Oct 2010
Rectal Surgery - Sep 2011
Stroke Sep 2012
User avatar
garbovatwin
 
Posts: 11857
Joined: Mon Jul 28, 2008 4:11 pm
Location: Chicago, IL

Re: Quality of life after J pouch - ileostomy

Postby NWgirl » Wed Sep 10, 2008 2:48 pm

I'm a stay at home Mom and pre-surgery I pretty much lived in sweats - so my wardrobe hasn't changed much. :-) You can wear slacks - just not real tight fitting pants - you need a little room for the pouch to do its thing. I was never into real tight pants so it hasn't been a problem for me at all. Before I had the ostomy done, I met with an ostomy nurse who helped pick the spot where the ostomy would go. She took into account what type of underwear I wore, where my pants waistline normally hit, etc. She was very careful in picking the spot so that it wouldn't get in the way of clothes or the way my body bent when I sat down and/or bent over. That made a big difference in the success of my ostomy as far as day to day living issues.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model
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Re: Quality of life after J pouch - ileostomy

Postby garbovatwin » Wed Sep 10, 2008 5:54 pm

NWgirl wrote:I'm a stay at home Mom and pre-surgery I pretty much lived in sweats - so my wardrobe hasn't changed much. :-) You can wear slacks - just not real tight fitting pants - you need a little room for the pouch to do its thing. I was never into real tight pants so it hasn't been a problem for me at all. Before I had the ostomy done, I met with an ostomy nurse who helped pick the spot where the ostomy would go. She took into account what type of underwear I wore, where my pants waistline normally hit, etc. She was very careful in picking the spot so that it wouldn't get in the way of clothes or the way my body bent when I sat down and/or bent over. That made a big difference in the success of my ostomy as far as day to day living issues.


Ah, the ostomy placement. Sounds like it is very important to have a good ostomy nurse.
Thanx for sharing.

jamiana
OUR world is worth saving
Question everything. Become your own Advocate.
When we find a cure for one cancer it will lead to a cure for ALL cancer
Crohn's Colitis
Rectal Mucosa Resection - Oct 2010
Rectal Surgery - Sep 2011
Stroke Sep 2012
User avatar
garbovatwin
 
Posts: 11857
Joined: Mon Jul 28, 2008 4:11 pm
Location: Chicago, IL

Re: Quality of life after J pouch - ileostomy

Postby Brendaindy » Wed Sep 10, 2008 8:55 pm

I love this thread.

I will be having my surgery 10-17 and these are all things I have though about. since I have 4 months of chemo after Im guessing I'll be glad to have the bag for that.

Thanks everyone.
Stage II Rectal dx 5/08
Radiation and Chemo
LAR w/Ileo & J Pouch 10/20/08
Finished Folfox 5/4/09
CT showed NED!
Illeo reversal 7/31/09
so far... so good....
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Re: Quality of life after J pouch - ileostomy

Postby forrpets » Sat Feb 07, 2009 4:35 pm

Well, I have spent probably 20 hours trying to find information on absorption of meds after J Pouch surgery. and also trying to get information on life after J Pouch. Cannot seem to find good info on either. I had the surgery 15 years ago and trying to reach others and find out how they are feeling. If they get tired easily. If they are able to work 50 - 60 hours. Do they ever have any downtime cuz of the health. And since I had the J Pouch, do I still retain the pills/meds I take?
forrpets
 

Re: Quality of life after J pouch - ileostomy

Postby Cured » Sat Feb 07, 2009 10:55 pm

A good friend's life is better than ever after having a J-Pouch installed after removal of his colon. He suffered from ulcerative colitis through his teens and early twenties. 2 yrs later things are good - now 30. I feel that few Surgeons are experienced with J-Pouch. My surgeon is the one who installed our friends'. if you need more info - tell me and I will try to have him contact you.
5-08:Stage 3 Rectal: 6/14 Nodes
Ace Surgeon Removed 90%Rectum & lots of Colon-Full Incision
Ileo Rev'd @6 Mos.
Radiation+5fu Pre-Surgery
FOLFOX 8 Cycles Done 1-09
Clear Scope 8-12; Clear CEA 12-13
Glory to God! Healed by prayers of many
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Re: Quality of life after J pouch - ileostomy

Postby forrpets » Sat Feb 07, 2009 11:53 pm

HI,
thanks so much for the reply. Yes, if he could email me that would be great. I just want to know more how people are doing long term. forrpets@centurytel.net
forrpets
 

Re: Quality of life after J pouch - ileostomy

Postby karenM » Sun Feb 08, 2009 7:56 am

I dont have either, but for future ref. what is the difference between the J-Pouch, ostomy, or ileostomy, etc or are they basically the same thing?
Colon cancer found Nov 08- stage 3
Surgery Dec 16th 08
in hosp 16th to 23,
28th to 1st of Jan for blockage
port put in Jan 12th
Chemo started Jan 09-
ended July 09
Hospital for a wk in April for bleeding.
As of Aug 09 am NED! Thank GOD!
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Re: Quality of life after J pouch - ileostomy

Postby lorrainem » Sun Feb 08, 2009 11:35 am

Karen,
An ostomy can be a colonostomy or an ileostomy. I had an ileostomy, which is your small intestine is used to remove waste instead of your large intestine.
You then where an "appliance" which is the bag used to capture the waste.
A "J-Pouch" is a surgical well made to hold stool when your large intestine cannot function properly. I have a colonic j-pouch which gathers the waste and emptys when full. More frequently, j-pouches are used in the small intestine when the large one has been removed completely. I only lost some of my large when I had my colon surgery. The ostomy helped to promote healing of the colon, but was reversed and the j-pouch hooked up on October 08.
Now I get to learn another "new normal" but it can take up to a year. At four months out, I have mostly good days, though I'm going through a tough spell right now.
Hoped this helped.
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08
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Re: Quality of life after J pouch - ileostomy

Postby karenM » Sun Feb 08, 2009 12:43 pm

Thanks for the information :)
Colon cancer found Nov 08- stage 3
Surgery Dec 16th 08
in hosp 16th to 23,
28th to 1st of Jan for blockage
port put in Jan 12th
Chemo started Jan 09-
ended July 09
Hospital for a wk in April for bleeding.
As of Aug 09 am NED! Thank GOD!
karenM
 
Posts: 480
Joined: Sun Jan 11, 2009 1:45 pm
Location: Western NC

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