Possible stoma?

[AtomicHair]

Hi all,

During my consultation I was pleased to be told that the risk of a stoma although increased due to how my bowel is attached near rectum, would be low. Surgeon said he was confident that it would not be needed. However, I have just received the letter he has sent to my endo socialist to proceed with a date, and it sounds like the risk and possible stoma is all we spoke about and almost sounds like a certain outcome.

Any ideas if this is just a common tone "just in case" or if this is really what he should have said during our call?

Will i have the opportunity to tell them to leave endo if it looks like removing it will result in a stoma?

My bowel is attached in a number of places, left and right ovaries which I am more confident about.

Has anyone else been through this and ended up with a stoma?

I have been so confident about surgery, but suddenly terrified.

Would appreciate any advice.

[Moon_maiden]

I’d give the secretary a call and explain concerns. They should be able to pass your query on and get back to with a response.

After the phone call I had a couple of weeks, I had concerns and booked a private appointment which I had today. Has really helped and it’s given him a much better overall picture.

[AtomicHair in reply to Moon_maiden]

Thanks Moon_maiden, that's a good idea.

Hope you are making progress yourself.

[Moon_maiden in reply to AtomicHair]

Let us know how you get on.

Much easier to consider options when it’s not for yourself.

Found out today that laparoscopic hysterectomy and any endo removal will now be open surgery. Hasn’t really sunk in yet.

[AtomicHair in reply to Moon_maiden]

Very true.

Wow, that is quite a lot for you to take in. I hope you managed to ask the question you wanted and feel like you understand why the change.

This is such a strange condition, the same but yet so different for us all.

We are so reliant on surgery to return some sense of quality of life, but we get so little information given during the consultations we wait so long for and end up with more questions once we have time to process, but no other chance to ask until the day we turn up for surgery.

Do you have a date yet?

[Moon_maiden in reply to AtomicHair]

No dates as yet. 😞

That’s why I booked this one, the telephone call did nothing, and had to find out things, he talked and answered most of my questions 😂

Well worth it though, glad I did.

[AtomicHair in reply to Moon_maiden]

Glad you feel like the session was well worth it. Felling confident in your treatment is so important.

Thank you for taking the time to reply Moon_maiden, you are very good at supporting people on here, I hope you are getting the support you need to help you.

[Moon_maiden in reply to AtomicHair]

I think the experiences I've had with the two gynaecologists has been the same either paying or NHS, just had longer when paying for appointments and more in-depth. Very frustrating and if they spent a bit more time with people on NHS it would save so much money in the long term. That is as long as they believe the patient in the first place

I think the forum has been a great help, although most of my experience is general with the medical profession rather than endo, but learnt so much here.

[Hidden]

Hi, I might be in a similar boat. I’ve been waiting for surgery since April so have had a lot of time to process! Why are you so worried about a stoma? From the info I’ve been given it would only be temporary to allow your bowel time to heal? Or have you been told it could be permanent? My consultant told me the chances are really really low but it was mentioned in the paperwork as a risk that I needed to be aware of. I do have a fear of waking up with one but I’ve now managed to convince myself that it’ll be ok as just temporary and necessary to have the best chance of getting rid of the endo.

Defo agree that emailing or talking to secretary to pass on any questions is a good idea. It is so annoying that they give you so much info that’s difficult to digest and then leaves you wanting more once processed! Xx

[AtomicHair in reply to Hidden]

Thank you for the response BeTheSunshine,

I think it is more the tone of the letter that took me by surprise. I just felt the consultation was very positive and the letter ignores all of that and focuses on the risk - legally I can understand that, but it just doesn't make for very balanced reading.

Its not just the idea of the stoma that worries me but the bowel surgery in total. My family have had quite a lot of experience with resections and they have not been good. I am trying to focus on the differences rather than the similarities, but it also means that my husband panics much more than normal (most of the time he is the calm reassuring one).

Hearing experiences like yours is very helpful and helps with perspective.

Do you have any idea when you will be getting your operation? I hope you are coping ok and not in to much pain.

[sjh_1980]

Hi

I had the same conversation before my last op as I was going to need a bowel resection. I had similar issues to those you have described.They went through exactly what the procedure would be and said a stoma would be a last resort - also a temporary measure. They have to give you a clear picture of all the potential risks before they start so that they can give you the best possible treatment. I didn't have to have a stoma in the end. As others have said, if you are unsure or have concerns then speak to them again - that is what they are there for.

Good luck 🙂

[AtomicHair in reply to sjh_1980]

Hi sjh_1980,

Thank you, its good to hear that you had a similar experience in advance of your procedure. Great to hear that it wasn't required, I hope you are recovering / recovered well?

Do you mind if I ask, did you end up having a resection? and how long was your recovery?

Thanks again for the advice.

[sjh_1980]

Fully recovered thank you. This was a couple of years ago. I did have to have some resection but it all went well. They said I needed 2-4 weeks recovery as a minimum. Definitely needed 2 weeks of total rest and had to take it easy for a while after that but it was pretty smooth going

[AtomicHair in reply to sjh_1980]

Thanks. Really good to hear you have fully recovered and everything went well.

Thanks again for taking the time to respond, it's very reassuring.

[Victoria81]

I had bowel surgery last year, including removal of a massive nodule near my rectum and a bowel resection to remove half my large intestine, my appendix and some of my small intestine. They prepared me beforehand for the possibility of a stoma and I saw the specialist stoma nurse to talk things through and look at bags but I didn’t need one in the end. I think generally they’re pretty good at joining stuff back together so fingers crossed you’ll be fine. My rectovaginal endometriosis was one of the sites that was causing me the most pain and it’s massively improved since surgery. Good luck!

[AtomicHair in reply to Victoria81]

Hi Victoria81,

Thank you so much for sharing your experience, sounds like you had quite an ordeal!

So pleased to hear that it went well for you and that your pain has improved.

I haven't been told I will have to see a stoma nurse, so that must be a good sign.

This is so reassuring to hear, thanks again.

[Noodle1984]

I was told it could easily go either way but they were fairly confident it wouldn’t be needed. They even put the marks on my body a few days prior for where the stoma should go if things went poorly. Almost all of my Endo was on my rectum. It took almost 3 hours for them to free my rectum from my vagina. Apparently the adhesion was terrible. I didn’t end up needing a stoma and was so grateful. The paperwork I saw said +- stoma which the nurse said could go either way. The issue with leaving any adhesions is that they’ll continue to grow and cause more issues with your bowels.

Try not to stress. If they’ve said it’s a low chance you’re probably good. Will they have two surgeons? I had one colon surgeon and one Endo one.

[AtomicHair in reply to Noodle1984]

Hi Noodle1984,

Thank you so much for sharing your experience, it is really helpful.

Sounds like you had quite a difficult surgery and I'm very pleased to hear it went well for you. I hope you are doing well?

I will be having 3 surgeons for mine, also quite extensive. Bowel surgeon, endo specialist and an assistant surgeon for him, with a special interests in endo. So quite a lot of cooks! I am sure I will be in good hands. Just had a bit of a wobble yesterday.

Again, thank you for sharing. Hearing from people who have been through this process at different points really makes a difference.

[Mdunc]

They just give you the info for the worst outcome, I think they just need to cover themselves and give you all the info.

I was told I could wake up after the operation with a stoma because of where some of mine is.

I wouldn't worry about it (easier said than done, I know!)

I am woke up after my last op and the first thing I did was check if I had one haha.

[AtomicHair in reply to Mdunc]

Thanks Mdunc,

I hope you have recovered well?

I have been quite aware and accepting of the potential risks until I saw that letter. There are days when I would let them hollow me out and send me on my way, but pain does funny things to us.

Just had a bit of a panic, the support on here is been great.

I am sure I will be doing the same thing as you when I come around - have a little pat down and check I am still in tacked.

I think I did that after my lap to be honest.

Thanks again for your reply.

[Supermary]

I had stage 4 OV debulking surgery last MOnday

I was told a stoma risk was very very small

And I signed the paperwork

Unfortunately I now have a stoma iliostomy and is REVERSIBLE

Thing is everyone’s anatomy is completely different and the Dr of mine who is fantastic and got out all the visible cancer said he felt that the healing process for me was less risky than without the stoma

He is confident in the reversal surgery

I didn’t expect this . It’s ugly it’s weird and uncomfortable and god knows I love wearing pretty things looking good exercising independence etc

I am very scared about living with it the next several months but I will do it

I have no idea during your surgery what the outcome will be I only know you WILL Not know until after it is over so worrying about it won’t change it

Just stay focused on getting well

Sending hugs your way

Margaret

[AtomicHair in reply to Supermary]

Thank you so much for your reply and sharing your experience. My surgery is booked fo Tuesday, so by this time next week I will know. The only thing I am confident of is that I can't carry on as I am, so I will trust my medical team and see what happens.

I hope you have a good recovery and take care of yourself. X