Endometriosis UK
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Post op depression

Hello. I have exstensive surgery to remove endo from my vagina and bowels. I am still in the intensive care unit and feeling really crap to put it bluntly. Has anyone else had a stoma? I have to have one for about 3 months. Any advice would be good. I am feeling really down about it.

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Hi

I've just had a reversal of a stoma after an 'accidental' perforation of bowel during a gynae key hole surgery at Christmas. I'm not sure about advice.

Most importantly ; You will get over it. It will be tough -I can't deny it. I hated every minute of having the colostomy but now 13 weeks later its over and the memories have faded. My life is now much better.

There will be good and bad days, it will behave some days and on other days it will be a pain (not in the arse-cos that would be easier!!). But it will be over. You just need to keep reminding yourself of that fact.

Practically I learnt to irrigate (possible with a colostomy but not the other ostomies) it means that you can 'control' the output so that the bag remains empty for up to 48 hours till you spend time in the bathroom flushing it out. Sounds gross but for me a necessary evil as it meant smaller bags and empty ones most of the time. Talk to the stoma nurses -mine were fantastic and sooooo helpful. They helped with different bags as my skin is temperamental and lots of bags irritated it.

Give yourself a break its a hell of a shock but you will adapt. You will also obsess about poo and smells but there are things that help and sometimes its all in your head rather than noticeable to others. Easy for me to say, hard for you to believe or accept.

I'm not sure what else I would say; I bought maternity leggings as they were lose and didn't rest on the bag and create pressure (this can cause leaks) they were fab and I've only just stopped wearing them great for bloated /fat days. Tunic that float over your middle also help his the lumps and bumps of the bag.

The stoma nurses encouraged me to wear 'hold you in knickers' as soon as you could to help with supporting your stomach muscles. I bought some from the Internet from comfizz and then had some prescription strength ones from supportix - very sexy NOT!!! But you need to avoid a hernia developing. I developed one and it was uncomfortable. Not endo pain but frankly if you can avoid pain then its always worth it.

Hope this helps.

Beth x

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Thank you for your response! I knew there was a large possibility of having it just never thought it would actually happen. Just so much to get my head round. Feel well and truely out of it! X

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I'm sorry to hear you have had such a horrible time and I wish you a speedy recovery. X

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Where are you being treated if you don't mind me asking? X

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I am at Tunbridge currently in the intensive care unit. The nurses have been excellent but fedup of not feeling myself! X

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hi there

I have not been through what you are going through but it's on the cards for me.

You have been through a massive ordeal and I would feel exactly the same as you are now.you have a long way to go I know but things will seem brighter for you once you are on the mend so to speak from the huge surgery you have had .

No one but no one understands what we have to go through with this ghastly disease ,be kind to yourself ,give it time you still sound very post op ,I really hope you start feeling a bit more human soon,and I'm glad the nurses are being kind to you .take care and a speedy recovery.xxx

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I have a permanent ileostomy. I get aggravated with "Oscar my stoma" but it has saved my life. I have learned the ins and outs oh having it. There are times when I wished I could go back to normal times but that doesn't last very long.

I wish you luck if you want to email me you can

Jaimeelynngiles@gmail.com

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Thank you for all the comments guys. Yester was just a really bad day but i have had a shower today and feel like a new woman! Amazng what a little shampoo can do! I have a long way to go with getting my head round things but i will be ok. These things are sent to try us. Thanks again and i will more than likely keep u updated! X

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I can not give you any advice as I haven't been through the ordeal that you have.

I just wanted to wish you well and a speedy recovery.

(I am having a hysterectomy, excision and possible bowel surgery next month. )

Best wishes,

Barbara x

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Thanks Barb. Hope everything goes well for u in your surgery! Xx

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Hi! :)

Just wanted to say thinking of you and hope your recovery goes as smoothly as possible!

Take Care & sending you a big (gentle!) hug xx

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Hi - I don't have masses to add to what the others have said but I am well aware this could also be an option for me in the future and just wanted to wish you all the best. I also wanted to add that my mother, who is now 71, has had a permanent ileostomy since she was in her mid 20s (not due to endo mind you, ulcerative colitis). She just tells me that while it obviously was one of the last things she wanted as a young, single woman, it saved her life and it really hasn't slowed her down - she met someone, got married, went on to have me (frankly a miracle given her extensive medical history), is a very fit and active person, and is mentally one of the strongest and most upbeat people I know, largely because her illness shaped her determination to get on with her life. I recognise her approach in what Jamie and bp74 both say. Not sure how much this helps right now, you're going through so much, but there's lots of people out here thinking of you! x

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You must be so proud of your mum. Thank you for sharing. Hopefully i can be as strong as her. I have been moved off icu late last night into the gyne ward and feel so much better for it. Can move around and got some independence back. Hopefully can go home a in a couple of days x

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So pleased to hear you've been moved off ICU and are getting some independence back. Great news if you can go home in a few days - let us know how you gox

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