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Going from ileostomy reversal to colostomy

Sun Jul 25, 2021 7:57 pm

Stage 4 colon patient here, Mets to lungs, liver, nodes.  59 yro had original resection with resulting ileostomy.  Wanted bag gone 8 months later had reversal.  Been total disaster with incontience, pain, and burning.  Having colostomy placed in 3 days.  Wondering about eating habits with a colostomy as all I seem to see is ileostomy cases.  Did fine with my ileostomy but was busy every 2 hours needed attention.  Hope colostomy is better for quality of life.  My rear end issues have been diagnosed as radiation proctitis and the constant stool issues makes it a mess.

Sun Jul 25, 2021 8:45 pm

Indy,you have really been put through the ringer. Wishing you a successful surgery and speedy recovery. 

Mon Jul 26, 2021 2:42 am

Hello Indy.

From reading many posts about ileostomies and colostomies, My imprtession would be that you will probably be much better off with a colostomy in terms of management and control of your life with a stoma. This will be particularly so if you are (eventually) suitable for irrigation.

I wish you well with the surgery and hope that your recovery will be problem-free. 

Best wishes

Bill 

Mon Jul 26, 2021 3:01 am

i hve a colonostomy and i think of two differences , with an illieostomy the output is more liquidy because it  is believe it  a shorter process and being a shorter process you are more likely to become deficient in essential salts than with a colonostomy. i hasten to add i am not a member of the medical proffession. i am sure you will do ok with your new stoma. good luck. 

Mon Jul 26, 2021 3:09 am

indy, i eat most things without any problem. there are certain foods to avoid 

foods that cause odour

foods that may cause wind

foods that may cause blockage

go on coloplast website ...they will have lists .

good luck indy

Mon Jul 26, 2021 7:40 am

 

  Morning glory wrote:  

Indy,you have really been put through the ringer. Wishing you a successful surgery and speedy recovery. 

 



Thank you for your thoughts.

Mon Jul 26, 2021 9:17 am

Hi Indy,

There are pluses and minuses for both an ileostomy and a colonoscopy......I don't think there are any clear cut winners amongst us.  I'm sure each of us would like to trade some characteristics of what we have for the other, if we could.  The biggest differences I see between the two are;

 

Ileostomy;

You no longer have your colon in the game to reabsorb the liquids in your bowel.......so hydration is more of an issue, and your output will contain more liquid

You cannot irrigate, so your quality of life takes a little hit there, as you have to empty your bag more often....sometimes a LOT more often

Depending on the length of small bowel intact, food doesn't ferment as much as it does in the colon, so odor should be less

You'll never be constipated!  

 

Colostomy

You most likely CAN irrigate....which sounds like a really good thing, although I can't do that.  

Hydration should be much easier (and this is really important)

Odor is more of a concern

You CAN get constipated

 

So it's sort of six of one, half a dozen of the other.  Both have pluses and minuses. The best solution is to have neither...........but we're all a bit past that point, now aren't we?

You can make whatever you end with work.  The fine folks on here are proof of that!  Best of luck to you!!

 

regards,

bob

 

 

.  On the plus side, depending on how much small bowel you have left

Past Member
Mon Jul 26, 2021 10:07 am

Indy, consider hyperbaric oxygen therapy for the radiation proctitis, and read my post about it. HBOT is very effective for certain issues, radiation proctitis being one of them. You may need 6 weeks of daily treatment, but it is non-invasive and painless. It is one of the few treatments available for radiation injury.

 

Laurie

Mon Jul 26, 2021 10:34 am

Hi Indy5,

I had stage 3B colrectal cancer & luckily I did not metastasize to other locations. I had an ile for a couple months then reversed only a year & a half I ended up with a colonostomy. I had radiation proctitis twice. I was having issues going to the bathroom, I think I was on the toilet every 15-20 minutes. I would sit there & cry. My doctor went in & tried to cut scar tissue but said that I was like a ball of fire from the radiation & the more he tried to cut the more scar tissue occurred, so he tried dilation which then cause me to have a fistula which resulted in me having to have a permanent colostomy. As much as I hate having either, I would take a colostomy any day over an ile. I eat most anything I want, never had any issues, I've had my ostomy for 6 years come next month. I just make sure I chew my food really good.

One more thing they don't ever tell you, make sure you wear a support belt, this will help keep you from , hopefully, getting a hernia. I have one now that I goin for surgery for in about 3 weeks. Had they told me the importance of wearing one from the start to help prevent this, I would have.

Good luck on your surgery...

Mon Jul 26, 2021 12:51 pm

 

  Pinkie pooh wrote:  

Hi Indy5,

I had stage 3B colrectal cancer & luckily I did not metastasize to other locations. I had an ile for a couple months then reversed only a year & a half I ended up with a colonostomy. I had radiation proctitis twice. I was having issues going to the bathroom, I think I was on the toilet every 15-20 minutes. I would sit there & cry. My doctor went in & tried to cut scar tissue but said that I was like a ball of fire from the radiation & the more he tried to cut the more scar tissue occurred, so he tried dilation which then cause me to have a fistula which resulted in me having to have a permanent colostomy. As much as I hate having either, I would take a colostomy any day over an ile. I eat most anything I want, never had any issues, I've had my ostomy for 6 years come next month. I just make sure I chew my food really good.

One more thing they don't ever tell you, make sure you wear a support belt, this will help keep you from , hopefully, getting a hernia. I have one now that I goin for surgery for in about 3 weeks. Had they told me the importance of wearing one from the start to help prevent this, I would have.

Good luck on your surgery...

 



Thank you for the info.  

Mon Jul 26, 2021 12:52 pm

 




  Indy5 wrote:  

 

 

Thank you for the info.

 

 Did the colostomy help with the proctitis pain?

 

Wed Jul 28, 2021 9:17 am

Just wanted to wish you luck on your surgery for tomorrow. Sending prayers your way on a quick recovery.

 

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