Stoma Bag and stage 4 : Just had my results... - Endometriosis UK

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Stoma Bag and stage 4

Just had my results from mri and been told I need my bowel to be corrected as it moved to the right side of my body and that it can potentially start to leak through my liver. So will need to have one small op for the cyst in the ovary and uterus. Then get a stoma bag fitted in till my bowel is corrected, then put on hormone injections which will give me a early menopause symptoms.

I am 30, not had any kids, not even married and now I feel like I havent even reached my goals coz my life is just falling apart.

I broke down in front of the surgeon and couldnt take in anymore he said. I feel like theres no life for me now.

Anyone else been fitted with a stoma bag?

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Did they say if the stoma bag is going to be permanent? I know other people have had one as a temporary measure until the bowel is sorted out.

Also check that your surgeon is one of the ones on the BSGE.org/clinic list.

Is it Zoladex injections you're getting? They don't cause a permanent menopause.

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yes mine is a specialist bsge centre. Atm the surgeon said he couldnt say if it will be permanent but definitely 9 months. As they need to look inside to get a clear image.

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It sounds like you need lots of hugs. Sadly there seems to be no crystal ball with this condition. Majority of us that have bowel issues have the colostomy temporary only. It does leave some scars but bowel should return to “normal”

I had zoladex for a year and it’s not a fun injection side effect wise (make sure you have HRT) but pain wise it was fantastic!

Lots of love to you 💕💕

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Hello dear how was the recovery after they put your bowels back toghether in terms of bowel movements and diet? I'm having stoma reconstructed in one or two months. Thanks!

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Aww Thank you, I have been getting hugs at work from colleagues who have noticed I look pale and not myself.

ok can I request for HRT.

Thank you for your reply.xx

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Ive done a lot of reading on this and have only seen people mention having a temporary stoma during the recovery. I would just say maybe google your gynae/surgeons and look into specialists, ive been referred to an endo specialist and despite the obvious worries i do feel way more confident in it now, having not been comfortable with a previous gynae.

Im 27 (and single) and currently on zthe reversible menopause injections (zoladex) and waiting for a bowel correction, so sorry to hear youre in the same boat, and totally get how you feel - bottom line is its crap but just keep picturing the end goal. Youve been diagnosed and its in hand, ive been told the surgery should hugely improve my chances fertility wise and your health has to be your priority before you can look after anything or anyone else! Just be kind to yourself, its a lot to go through but at least it is in hand... sending love xx

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Thank youu so much for replying. I feel so relieved there is someone out there who is almost so similar to me. I am with a endo specialist centre. The surgeon said to me when I am ready to have a family and if I do have to go through the IVF treatment he will be there as he also treats the IVF department and also in the delivery rooms. So it was assuring that I had someone who would be with me from the start till my surgery and guide me though. I definitely feel reassured with endo specialist than my original hospital under gynae which couldnt even answer any of my questions.

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Thats really good youve found someone you can trust and who knows what theyre doing! I think its also important to focus on the short term and your mental health around it all going on, its so hard but making smaller short term goals for myself while im going to be waiting up to a year for the surgery has helped me feel just a little less defeated and hopeless about it all. I honestly understand how hard it is when it makes you panic about body clock etc but you cant write yourself off because of it. Sending hugs and best wishes! Xx

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I have one, it's not as bad as I thought it would be taking into account that it saved me from a life threating obstruction. I'm a month and 12 days after surgery and I can pretty much eat anything and have managed to leave the house normally and even go to restaurants and outings. I can change my bag anywhere now, just make sure to bring a purse with supplies. It's only temporary so it's just collateral damage if you look at the big picture. You'll be fine! The menopause state will only last a few months but even if your endo comes back it will never be as bad as it was. Plus, you can control it with birth control and take breaks when u want to try for a baby. You're young! If one thing I've learned throughout my endo journey is that diet alone or mindfulness alone or exercise alone won't make it dissappear but stress will make it worse for sure. So please try to stay positive! Hugs

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Thank you for your message, I wish you a speedy recovery. I am currently on the pill and been told to tricycle. I think what really hit me was I had no pain, no issue with bowel movements only a flare up pain on my pelvis every 3 months but for 3months I didnt have a flare up no hospital admissions nothing and then been told I am stage 4 and my bowel needs correcting, along with the two cyst in my ovary and one behind uterus. I will take your advice in board. Thank you. x

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Thanks! My endo specialist told me nothing is settled with endo. Some people have super big adhesions and not so much pain and also the other way around. Everyone is different. Mine was all over the place. I also had cysts in left ovary but thanks to the shots (6 months) they shrunk and they could save my tubes and ovaries. Symptoms were that I pretty much feel like a 70 yo but for a few month they have saved my life.

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Sorry to confuse you I was speaking from experience as a nurse and also talking to loads of people as I get mine next month. Xx

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Good luck with your surgery x

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Hi, i've had my "temporary" stoma for nearly 4 years now, i was 29 when i had it done! Its not that bad, you get use to it. Ive asked my consultant to reverse it many times but he's unwilling to do it unless i have a full hysterectomy, says its too risky and that it could be really dangerous for me.

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Hi, thank you for your reply.

Why did they say temporary but it's been 4 years. Did you have endo in your bowel.

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I think my continual refusal to have a hysterectomy has made me have it longer than usual, theyve just left everything as it is.

I had a sigmoidoscopy recently and it showed no disease in the bowel but theres an obstruction right at the top, the camera couldnt go round the bend or something like that. Ive been referred for a dye test to see if it will get past this obstruction, really hoping it does as it could mean i can finally have my stoma reversed. Good luck with everything.

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Oh god, that's terrible why did they even call it temporary yet leave you with the bag for so many years. Surely if a patient does not want to get hysterectomy then they could have given you other alternatives.

I hope the results are what your looking for after the dye scan.

Thank you for the reply. x

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So sorry Jull that your doc is so reluctant to get it out. What is the suspicion on the obstruction? Endo? I'm having a barium emema this week to see if I'm OK for reversal. Did you have a rectal recession that's why you got the stoma? That's what I had. I live in Spain BTW, so some terminoloy might be different. Sorry if it's confusing.

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Yes the obstruction is endo. I got the stoma when they did open surgery to remove endo, it was never 100% that i was going to get it, i was surprised when i woke up and realised i had it. The endo was alot worse than they thought or had seen on the mri so they decided to give my bowels a rest by doing the stoma.

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How long did you have the stoma bag for?

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Still got it nearly 4 years on.

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Sounds like they didn't excise the endo from the rectum, only ablation? They cut a good part of my rectum because the doctors said it was not possible to just "shave" it as the endo was very deep in my rectum and very big. She also said that sometimes when they operate, the node goes up and stoma its not needed then but they don't know until they do it. In my case, I did need the stoma to give my colon and rectum time to heal but I it looks like I'll get it out next month. Hysterectomy has been proven not to cure endo totally unless your doctors has real medical reasons for it or maybe there is also adenomyosis? At least, that's what's I've read from the experts. Push for a better surgery, one that removes all the endo without the need of a hysterectomy. I'm sorry if I seem adamanant, your doctor is the expert, obviously, but I believe you can have your stoma out without the need of removing uterus. I live in Barcelona and I speak from my experience here. However, I know what having an stoma is like and even if you get used to it, we'd all like to have our bowels back to normal! Sending you and the original poster lots of good energy and hope.

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Hi there,

Just thought I would let you know, I'm in exactly the same position.

30, single, no children.

Have endo on the bowel with high chance of needing reaction.

Also have bladder endo so will require stents in my ureter too.

Just awaiting a surgery date.

Here if you need to chat xx

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Hii, Hi5.

The surgeon didnt say I had endo in my bladder he did say I have endometrioma in my bowel. Endometriosis in my ovaries and behind uterus. He said its stage 4.

I had slightly better day at work today as i had tonnes of work to do and was busy. I work in a school so we finish for the summer term tomorrow. Which I think it will then hit me hard as I wont have work to distract me.

Are you with endo specialist centre? I should get my surgery within 2 weeks now. They said as its stage 4 and urgent and also its hit the 3 months period. xx

Thank you for your reply.x

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