Bowel resection on Monday

[Violet89]

Hi everyone,

I have stage 4 recto vaginal endo and have been struggling for years. I had my first lap last December to remove a 4cm cyst from the left ovary. The surgeon found endo on my appendix and my ulterior wall.

I have now been booked in for a bowel resection + removal of the endo within my gynae area. I am petrified. I don't know what to expect, they've said I might wake up with a stoma bag I might not. I have the bowel prep to do on Sunday. I am very very anxious and scared.

Has anyone else been through this and if so is there anything you would advise I take to the hospital to make my stay more comfortable? Also how long did you have to stay in hospital after your surgery?

Thank you x

[Alita88]

hi I just the exact same procedure in June 2019. they performed rectum resection, bowel and vagina excision of endo. it was pretty much everywhere. I did wake with a stoma bag. the pain from op was non-existent. First month with the bag, no that good, I had strong cramps every here and then that made me go to the ER and psychologically it took me a while. second month was waaay better. OK, 5 months later I'm completely used to my bag and I'm on the waiting list for reversal! I had my first scanner last week and all endo is gone! at least the one the scanner can detect. it's been a rough journey but nothing as horrible as I was expecting, it's not that bad. my rectum, bowel and internal scars don't hurt at all. acupuncture has helped. I stayed for 8 days, mostly because they wanted to see I was producing just fine from the bag but if you don't get the bag you won't stay more than two days, I suppose. as my family was there everyday they got me water, aquarius, an homemade soups as the food was disgusting and non nutritious. I wish you the best, you'll be fine.

[Imo82]

Good luck. I'm in a similar boat to you. Surgery next Friday for excision of DIE and rectal and bowel involvement. This is the part thar terrifies me too. That I'll have no idea of the outcome until i wake. Sending positive thoughts your way x

[EKP31]

Hi

I also had stage 4 rectovaginal endometriosis and had it removed last September. I did wake up with a temporary ileostomy but only because the endo was so low down in my rectum. I think it’s more common to not wake up with a stoma so please don’t assume you will.

I stayed in hospital for 3 nights. I wasn’t in loads of pain as I kept on asking for oramorph (liquid morphine) so make sure you ask for strong painkillers as you shouldn’t have to be in pain.

I had my ileostomy reversed after 7 weeks. I had private healthcare so was able to push people into doing things a lot quicker. I’m now 1 year post op and in so much less pain with none of the horrible bowel symptoms I had so I can say it was definitely worth it!

The bowel prep tastes hideous but you can mix it with squash or apple juice which I found out afterwards!

Best of luck with the op! I’m here if you have any questions or want to chat.

X

[Sarah001 in reply to EKP31]

What were your bowel symptoms can I ask? x

[EKP31 in reply to Sarah001]

I had a throbbing pain in my rectum and lower back that seemed that it lasted weeks after my period so I was only not in pain for just less than a week every month and I also had leaky bowels so had to constantly wear a sanitary towel x

[Alita88 in reply to EKP31]

wow I had the exact same symptoms. I would only go one week a month without pain. I'm glad you feel better now. same here. was it hard to adjust to the ileo reversal? I'm worried about time off work. thanks

[EKP31 in reply to Alita88]

oh gosh. Sorry to hear that. No the adjustment post ileostomy reversal was really good as I only had the stoma for 7 weeks my body still remembered exactly what to do. The worst part was straight after the reversal where I felt so nauseous for days but again, I only stayed in hospital for 3 nights.

I was off work for nearly 3 months in total but my company paid my sick leave so it was ok x

[Alita88 in reply to EKP31]

thanks, well nauseous it will be as long as I can have my dear colon working again 😂 hope you stay endo free for good! 🙏

[LCI1 in reply to EKP31]

How low down was your endo?

[EKP31 in reply to LCI1]

Not really sure but was told it was very low down and close to my anus which was why I needed the ileostomy until the join from the bowel removal had healed

[LCI1 in reply to EKP31]

I have mine in a few weeks and know it is 7cm which is low so wondered for a comparrison

[EKP31 in reply to LCI1]

I think the endo nodule was around that size and had around 20cm of bowel removed in the end. Best of luck. Really hope it goes well. I’m so glad I did it as my bowel symptoms are so much better now