Transitioning from Temporary to Permanent Stoma: Seeking Advice

I am new to this site. I had a temporary stoma done last year due to having ulcerative colitis, but now I have to go back into the hospital to have a permanent one because my disease is getting worse. Just wondering who's been in the same situation as me. I would really like some info. Thanks.

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 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-fledged 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

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 they're at) in case

The nurse and doctor 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.

I'm down to changing my barrier twice a week.

I've 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 Bill, thank you for replying to my post. I've 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.

Hi Bill, thank you for replying to my post. I've 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. Thanks for the well wishes, and I wish you well too. I'll keep you posted. Best wishes, Marlene.

Hi hairdresser, thanks for the reply on my post. So glad to hear I'm not alone in my condition of UC. I also got offered a 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 that after, I should lead a happy and UC-free life finally. Best wishes, Marlene

Hi Balti, thanks for the reply on my post. Everyone on this support is so nice. I had my temporary stoma done last year, but my UC is getting worse. So, I'm due to go back in the hospital again for a permanent stoma. 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.

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.

I had ulcerative colitis too. The doctors tried fixing my colon surgically, but two days after, they told me they must remove the 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 NSAID like aspirin and ibuprofen at recommended doses before getting really sick.

Hi Marlene, I was originally diagnosed with UC 30 some years ago and had an ileostomy installed. But a few years ago, I had resection surgery and now diagnosed with Crohn's.

Hi Bill, thank you 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

Hi Baltimorewill, thank you 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.

Hi Omara, I have had UC now for nearly 10 years and tried everything the doctor and consultants asked me to try, but still no good. That's why I had to have a temporary stoma, but now I have to have it changed to a permanent stoma. Hope you are well. Best wishes, Marlene.

Hi Ron, I've had UC now for nearly 10 years and had a temporary stoma done last year in 2020, but still no good. So, I have to have it changed to permanent soon. Hope you are well. Best wishes, Marlene.

Hi, thanks for your lovely message. I have not been on for a while. I had my temporary stoma put to permanent this March. Now, 15 weeks tomorrow since having it done, so still recovering. Hope you are all well.