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Crohn's Disease Forum » Surgery » Stoma Subforum » Get married with bag or j pouch?


03-05-2015, 04:39 PM   #1
sarah4288
 
Join Date: Mar 2015
Get married with bag or j pouch?

Hi everyone, my name is Sarah. I have ulcerative colitis and have had it for nearly 5 years. Ive tried all the meds available and they haven't worked so I've decided enough and am having surgery in about 6 weeks time. I was all up for having 2 surgeries which would end up with j pouch. Having spoke to a surgeon i am now having the 3 step surgery so that my body has time to 'get well' and be at the best health before the j pouch surgeries. Now my dilemma is i was due to get married this August but cancelled it as i thought surgeries would clash with it and moved it to next year so i thought all surgeries would be out the way and id be used to a j pouch. Now after hearing about what lies ahead with a j pouch and how it takes a year to fully get used to it and to get to the 'norm' will be with it I'm debating whether it would be best to get married whilst i have an ileostomy bag. In my head I'm thinking this would be no rushing to toilet during my big day or potentially no accidents and id just have to change/empty my bag. J pouch sounds quite scary when i read about pouchitis/accidents/urgencies. Any advice greatly received, sarah xxx
03-05-2015, 05:14 PM   #2
nogutsnoglory
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The options arent great but the problems you mentioned can happen with an ostomy too. Not pouchitis but swollen stoma, going too far out or going too far in, bags falling off and accidents which results in urgent situation to fix it and skin damage.

I don't say this to scare you or to encourage you either way but rather to equip you to make the best choice.
03-06-2015, 10:43 AM   #3
sarah4288
 
Join Date: Mar 2015
Thank you for your reply. I think the best thing for me to do is wait until i have the surgery and see how i get on with an ileostomy. Im looking forward to getting my life back as long as all goes well but hate the uncertainty of it all. Sarah x
03-06-2015, 11:57 AM   #4
nogutsnoglory
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You'll find a very varied opinion on ostomies. Those who feel they got their life back and those who feel they lost it. It all depends on the person's view, their circumstances and how much of a problem they face with the ostomy.

I wish you the best of luck and health whichever road you go down.
03-07-2015, 08:26 AM   #5
2thFairy
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This is a question that is too personal for anyone to decide except you. What I can tell you is that I have a J-pouch formed, but have chosen to keep my stoma. When I had my colectomy, the plan was to be reconnected 3 months later and use the J-pouch. However, I have had such a good result with my ileostomy that I just didn't want to change a thing. For me personally (everyone has a different experience!), my life with a stoma is so good that having the reconnect and functioning J-pouch would be taking several steps backwards and I am not willing to essentially start over at this point. Maybe some day, just not today.
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"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
03-08-2015, 10:41 AM   #6
sarah4288
 
Join Date: Mar 2015
thats what i am constantly thinking about, my surgeon said some people decide not to have the j pouch as their lives are so much better with a bag. I actually can't wait to have my surgery and have a bag as colitis ruins life so much and its started affecting my children hence my decision for surgery and the fact no meds work. We booked our wedding for this august but only got as far as booking church, venue and buying my dress when i decided enough was enough and wanted surgery so we cancelled the wedding this year and booked next July. I tried my dress on friday night to see if having a stoma and bag would affect it and it would, the dress is quite fitted so i now have a decision on whether to get married with a stoma and buy another dress or wait until 2017 when i may possibly have a j-pouch. My current dress only cost 100 as i brought it off a friend. I guess i will just have to have my surgery and see what my outlook is. There was a big part of me that thought if i could have a stoma under my current dress then id love to still get married this august as I've had really crappy couple of years and was really looking forward to the day. Having a stoma doesn't worry me, i know it will be a shock but I've been doing research and watching you tube videos so I'm not going in blind. Sorry to go on, i know everyone is different and il just have to be patience and see how i go, thank you xx
03-08-2015, 07:11 PM   #7
Nyx
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Just so you know, you can wear things like Spanx with a stoma. If I'm wearing something fitted, I wear them and can go for about 6 hours before things get uncomfortable. Might be an option for you
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Crohn's Diagnosis: May 2006
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Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

03-10-2015, 05:02 PM   #8
sarah4288
 
Join Date: Mar 2015
Thank you all. I heard from the hospital today that my op is now monday! Excited and nervous. Will be my first surgery ever so thats why I'm nervous. Sarah xx
03-10-2015, 05:33 PM   #9
2thFairy
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Good luck to you! Let us know how everything goes.
03-10-2015, 06:07 PM   #10
Acacia
 
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I've had an ileostomy since 1995 at the age of 23, and personally thought it was the best thing i've ever done.. In 1997 (age 25) i permanently had it done.. Rectum sewed up etc.. Yeah things can happen.. as with anything.. The only problems i've had to have 2 revisions, due to the skin around the stoma grew tighter and it eventually narrowed my opening.. I feel so much better, there are times i have to empty often depending on what i eat. But 2x's after something that would get me going. I'm sure you will do what you think is best for you and i wish you the best on whatever you decide.. I am now 48 and has never regretted my decision..
03-10-2015, 07:37 PM   #11
2thFairy
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Welcome to the forum, Acacia!
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