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Changing from a temporary stoma to a permanent one

Thu Sep 30, 2021 8:53 am
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i am new to this site i had a temporary stoma done last year due to having ulcerative colitis but now got to go back into hospital have a permanent one cause my disease is getting worse just wondering who's been in the same situation as me would really like some info thanks 

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Thu Sep 30, 2021 9:03 am

Hello Marlene.

I am not in the same position as you, but there are some conditions (mine was one) where a temporary stoma is not an effective long-term solution. I have not yet regretted my decision to elect for a permanent stoma, because the alternative would have been so much worse.

I am sure there will be many more who will chip-in on your post and share their own experiences.

However, I thought I ought to reply, if only to wish you well and hope that you will keep us informed of how you get on.

Best wishes

Bill    

Thu Sep 30, 2021 2:03 pm

Hi Marlene,

  I too started off with a temporary ileostomy due to UC. I was led to believe that I could have a reversal but that never happened.  After three operations in all I am now a full fledge obstinate!  I have never regretted it after realizing where I was and how my life was limited to where I am now, free and living my life.  I have had bag leaks and breaks but after I clean everything up my life goes on and I can do what I want with little or no restrictions.  So all I want to say is look forward, live your life and be happy and grateful..you are UC free!!  Good luck!!  🍀 

 

Fri Oct 01, 2021 8:56 am

Hi

 I'm also not a temporary stoma for re-connecting later.,

however I was going to re-connect to the anus.

3 Months in. And I have decided it's not worth it just for looks.

I would be going back to constantly looking for a bathroom...... ( knowing where there at ) in case

The nurse and doc really don't completely tell you everything about the skin barrier and bags.

nor that there are a whole lot of support belts that not only conceal it. But protect you against a hernia.

yes they have belts for swimming.

im down to changing my barrier twice a week.

Ive learned through trial and error plus free samples

that getting a perfect seal makes it unnoticeable to me that I'm wearing one.

A bag is no biggie.

 Hope this helps

 

Fri Oct 01, 2021 2:04 pm


Bill wrote:

Hello Marlene.

I am not in the same position as you, but there are some conditions (mine was one) where a temporary stoma is not an effective long-term solution. I have not yet regretted my decision to elect for a permanent stoma, because the alternative would have been so much worse.

I am sure there will be many more who will chip-in on your post and share their own experiences.

However, I thought I ought to reply, if only to wish you well and hope that you will keep us informed of how you get on.

Best wishes

Bill    

hi bill thankyou for replying to my post got to have my temporary stoma changed to permanent very soon on one hand i'm looking forward to having it done so i can carry on with my life.

Fri Oct 01, 2021 2:06 pm


Bill wrote:

Hello Marlene.

I am not in the same position as you, but there are some conditions (mine was one) where a temporary stoma is not an effective long-term solution. I have not yet regretted my decision to elect for a permanent stoma, because the alternative would have been so much worse.

I am sure there will be many more who will chip-in on your post and share their own experiences.

However, I thought I ought to reply, if only to wish you well and hope that you will keep us informed of how you get on.

Best wishes

Bill    

hi bill thankyou for replying to my post got to have my temporary stoma changed to permanent very soon on one hand i'm looking forward to having it done so i can carry on with my life and thanks for the wish you well the same to you too and i'll keep you posted to .Best wishes Marlene

Fri Oct 01, 2021 2:12 pm


Hairdresser wrote:

Hi Marlene,

  I too started off with a temporary ileostomy due to UC. I was led to believe that I could have a reversal but that never happened.  After three operations in all I am now a full fledge obstinate!  I have never regretted it after realizing where I was and how my life was limited to where I am now, free and living my life.  I have had bag leaks and breaks but after I clean everything up my life goes on and I can do what I want with little or no restrictions.  So all I want to say is look forward, live your life and be happy and grateful..you are UC free!!  Good luck!!  🍀 

 

Hi hairdresser thanks for the reply on my post so glad to hear i'm not alone in my condition off UC i also got offered reversal but now the consultant has said there's no point in doing a reversal now so he has now said a permanent stoma on one hand i'm looking forward to having it done but on the other hand quite scared but i'm glad to hear after i should lead a happy and UC free life finally Best wishes Marlene

Fri Oct 01, 2021 2:19 pm


baltimorewill wrote:

Hi

 I'm also not a temporary stoma for re-connecting later.,

however I was going to re-connect to the anus.

3 Months in. And I have decided it's not worth it just for looks.

I would be going back to constantly looking for a bathroom...... ( knowing where there at ) in case

The nurse and doc really don't completely tell you everything about the skin barrier and bags.

nor that there are a whole lot of support belts that not only conceal it. But protect you against a hernia.

yes they have belts for swimming.

im down to changing my barrier twice a week.

Ive learned through trial and error plus free samples

that getting a perfect seal makes it unnoticeable to me that I'm wearing one.

A bag is no biggie.

 Hope this helps

 

Hi balti thanks for the reply on my post everyone on this support is so nice i had my temorary stoma done last year but my UC is getting worse so i'm due to go back in hospital again for a permanent stoma and i'll be glad when i'm UC free and yeah it's not worth reversal if you end up back to square one looking for the toilet all the time Best wishes Marlene

Past Member
Sun Oct 03, 2021 3:17 pm

I wonder what does a temporary stoma look like do you have a rosebud?  I think my doctor at first was thinking temporary as I don't have a rosebud.  I have what looks like a baby's anus with butt cheeks all around.  Very hard to manage when most appliances sit above so of course it will go under the wafer.  I now wear Coloplast 2 piece click concave and use half of a ring to seal it better.  So far so good.  I was averaging 2 maybe 3 changes a day for leaking now I get to go days.  I sure hope and will pray that your new surgery will work great.  I would really like to hear the results.

Sun Oct 03, 2021 10:19 pm

I had ulcerative colitis too. The doctors tried fixing my colon surgically but two days after they told me they must remove colon due to the perforations. I'm 100% happier with my permanent ileostomy. Uc is no joke, I first got symptoms late 2020 and ileostomy early 2021. I wonder if it's caused by defective and adulterated food and beverage? I know I was taking over the counter n.s.a.i.d. like aspirin and ibprofin at recommended doses before getting really sick. 

Wed Nov 10, 2021 9:38 am

Hi Marlene i was originally dx,ed with UC 30 some years ago and had an ilieostomy installed but a few years ago i had resection surgery and now dx,ed with crohns.

Thu Nov 11, 2021 2:47 pm


Bill wrote:

Hello Marlene.

I am not in the same position as you, but there are some conditions (mine was one) where a temporary stoma is not an effective long-term solution. I have not yet regretted my decision to elect for a permanent stoma, because the alternative would have been so much worse.

I am sure there will be many more who will chip-in on your post and share their own experiences.

However, I thought I ought to reply, if only to wish you well and hope that you will keep us informed of how you get on.

Best wishes

Bill    

Hi Bill thankyou so much for your well wishes and i hope you are well too once i have had my operation done i will let you know how i get on from Marlene

Thu Nov 11, 2021 2:50 pm


baltimorewill wrote:

Hi

 I'm also not a temporary stoma for re-connecting later.,

however I was going to re-connect to the anus.

3 Months in. And I have decided it's not worth it just for looks.

I would be going back to constantly looking for a bathroom...... ( knowing where there at ) in case

The nurse and doc really don't completely tell you everything about the skin barrier and bags.

nor that there are a whole lot of support belts that not only conceal it. But protect you against a hernia.

yes they have belts for swimming.

im down to changing my barrier twice a week.

Ive learned through trial and error plus free samples

that getting a perfect seal makes it unnoticeable to me that I'm wearing one.

A bag is no biggie.

 Hope this helps

 

Hi Baltimorewill thankyou so much i am new to this site but everyone is so lovely and friendly which really helps hope you are well best wishes from marlene

Thu Nov 11, 2021 2:55 pm


O'Mara wrote:

I had ulcerative colitis too. The doctors tried fixing my colon surgically but two days after they told me they must remove colon due to the perforations. I'm 100% happier with my permanent ileostomy. Uc is no joke, I first got symptoms late 2020 and ileostomy early 2021. I wonder if it's caused by defective and adulterated food and beverage? I know I was taking over the counter n.s.a.i.d. like aspirin and ibprofin at recommended doses before getting really sick. 

Hi Omara i habe had UC now for nearly 10 years and tried everything the doctor and consulatants asked me to try but still no good that's why i had to have a temporary stoma but now got to have it changed to permanent stoma hope you are well best wishes Marlene 

Thu Nov 11, 2021 2:57 pm

Hi Ron i've had UC now nearly 10 years and had a temporary stoma done last year 2020 but still no good so got to have it changed to permanent soon hope you are well best wishes Marlene

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