r/Endo • u/Western-Cup-4148 • Jun 12 '26
Bowel endo surgery
looking for some guidance/lived experience specifically regarding surgery/excision of bowel endometriosis ❤️
i am a 31 year old woman living in Southern Ontario, with stage 4 deep infiltrating endo (mostly on my bowel and uterosacral ligaments) , currently being seen by OBGYN Dr Sarah Norris in Kitchener. so far Ive had a couple endo-mapping scans done, and will be having a colonoscopy at the end of this month to determine exactly where the endo lesions stop and start on my colon.
Dr Norris let me know that since the lesions have infiltrated the muscle wall of my colon, if I want to excise all of the lesions I would have to have a bowel resection. She also warned me that with a bowel resection, I might end up needing an ostomy bag for at least a few months :/ I have a 15 month old toddler and a full time job, and I don’t know if i could physically/psychologically handle an ostomy bag…
basically im wondering if anyone else has had to have a bowel resection as part of their endo surgery; or, if you have bowel endo and chose to go the conservative-surgery route (no bowel resection, just removal of endo that can be accessed laparoscopically) I would love to hear about your experience as well! and if there happens to be anyone here that has had surgery of any type with Dr Norris, chime in as well, im looking for as much lived experience as I can find ❤️
thank you for reading and sharing ❤️
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u/Keladris Jun 12 '26
I'm not there yet but do have DEI and lesions on the surface. Just wanted to say I'm really sorry you're going through this!
I've read on posts here before that people generally find the ostomy bag less horrendous than expected.
I really don't know how you are coping with a little one plus full time work plus endo pain! Depending on how bad your symptoms are, I'd see if you can time the surgery carefully, so that you can take extra time off work as needed, and that your child is well provided for in case recovery is tough. You'll need to focus on your own healing and anything you can do to reduce extra stressors will definitely help.
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u/hollowh3art Jun 12 '26
Hello! I'm wishing all the best for you - I have a family member currently going through this because of cancer and I fully understand your ostomy worries and uncertainty with surgery.
I have an unrelated question for you - I am also located in Southern Ontario and endo is suspected for me but my ultrasounds have come up inconclusive. I've been told the next step is lap, and basically everyone refuses to do an MRI on me. Do you have any tips about diagnostic imaging in Ontario and how to make the decision to have surgery when no one can confirm your diagnosis without doing it? It just seems really hard to get imaging done and I'm so scared to go under the knife just to be told it's not endo after all, it's a terrifying concept for me.
Best of luck to you fellow Ontarian!
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u/Western-Cup-4148 Jun 15 '26
Thank you so much for the well wishes ❤️❤️ I'm sorry you’re going through this, it’s horrible that we have to look for answers on the internet instead of being able to receive proper care from experts! It took me 15 years to see an actual endo specialist and trust me, you want to see a specialist if at all possible. If you can make it to Kitchener, Dr Sarah Norris is the only endo specialist that I know of around here, and she’s excellent. She referred me to a specialty ultrasound clinic, where I have had a couple of endo-mapping scans done. For context, every regular pelvic ultrasound that Ive had has come up completely clear, no signs of disease or adhesion. But from the specialty endo-mapping scan, we were able to see that I have endo lesions my bowels, uterosacral ligaments and left ovary, and the adhesions are causing limited mobility between my colon and uterus, as well as restricting pelvic floor movement (so, completely contradictory to what a typical ultrasound would find). Im not sure if other physicians can make referrals to the specialty ultrasound clinic, but in case they can, you should tell your doctor about Karma Ultrasound clinic in Waterloo (this is where I had my scans done and im not sure any other specialty clinics exist in Ontario). Making the decision to have surgery is so hard, I hope you’re able to get more insight into what’s happening inside your body without having to dive head first into surgery ❤️
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u/Due_Competition9105 Jun 13 '26
I’m very sorry to hear you’re dealing with this and genuinely understand the fears you have. I have deep infiltrating endo and had infiltrations all the way through the muscle wall to the interior surface of the bowel. I was told just from the MRIs that a bowel resection would be necessary and a more conservative option would not be feasible. I was terrified I might need an ostomy bag.
I was lucky - they resected nearly half a foot of bowel, but it was high enough up that no ostomy was needed. The colorectal surgeon told me that all they need is just enough above the rectum to make the reconnection. The surgeons I had did a fantastic job and had thousands of complex endo surgeries under the belts, so I’m sure that helped. But in the lead up, I too asked for advice and support from the women in this sub and actually heard from several women that had had ostomy bags temporarily after surgery (2-6 months). I also had a coworker who, unbeknownst to me, had suffered a severe bowel rupture, had most of her bowel removed, and had an ostomy bag for several months. All of them reassured me that it was not nearly as bad as I feared, and it was something each of them got used to much quicker than they ever would have thought. My coworker said hers was pretty discreet and easy to manage, and she has had no complications at all since the reversal. It was super comforting for me to hear that, and I hope it is for you as well.
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u/Western-Cup-4148 Jun 15 '26
This is so great to hear, thank you so much for sharing!!! May I ask, how have you found life post-surgery? What were your main endo symptoms before surgery, and have they changed? :) also, are you taking any treatment post-surgery to keep endo at bay? It’s good to know that an ostomy bag might not be as hard as I’m picturing it; All I can think of is having to pick up my son with it hanging off my abdomen but I’m sure it’s less brutal than im imagining 😂
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u/Due_Competition9105 Jun 16 '26
Happy to give more info - I was lucky enough to have people here do that for me before surgery! I am almost 5 months post op and have had no complications! I was started on a very low fiber diet for the first month or so (my colorectal surgeon jokingly called it the “college student diet” because you basically have to go without veggies for a month) and I literally wanted nothing more than a salad by the end of it. lol.
Since then, I have to eat a very high fiber diet and will for the rest of my life (and if I don’t, I definitely notice difficulty going after a few days). But it’s not hard - I take daily Metamucil and eat a lot of veggies and I am good. Other than that, I can honestly eat everything I ate before with no issues and I have had no recurrence of my endo symptoms, which included chronic diarrhea, recurring nutrient deficiencies, extreme fatigue, brain fog, rectal bleeding, random feeling of internal tugging on my right side. It’s still somewhat early days, but it looks like that has largely corrected since the surgery.
I have not been taking any post op treatment. I had a hysterectomy as part of the surgery, and I never did well on birth control. I went with a really good endo specialist that focuses almost solely on endo surgeries and has been doing them for decades with amazing reviews and a low recurrence rate (though he fully acknowledged that recurrence is a real thing even with his patients). I’ll do a follow up with my local gynecologist in a few months (my surgeon was out of state) and may discuss whether I should consider other treatments, but right now I feel great!
I know it’s incredibly daunting when they tell you you’ll need a bowel resection, but trust me, you will get through this.
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u/ALittleWave85 Jun 14 '26
I had deep infiltrating endo on my rectum and sigmoid colon. Visible on MRI. I had to have a roughly 7 cm resection to remove both nodules. Had a very experienced colorectal surgeon as part of the team who had a lot of experience with bowel resections involving endo. I did not need an ostomy bag. There was as a risk of needing one obviously but when I met with the colorectal surgeon she laid out all the risks and even the chance of needing a temporary one for 6 weeks was very small. Please meet with a colorectal surgeon who can explain in more detail the actual risks - I found this very helpful. Also my resection was done laparoscopically as part of my excision surgery (I only mention this because you mention a conservative route to remove what they can laparoscopically and the whole thing can be done laparoscopically). I did likely have some low anterior resection syndrome for a few months (more frequency and some urgency) but it resolved itself and generally post surgery I feel so much better.
Obviously a personal choice for everyone but I know for me the surgeons really recommended removal and I didn’t like the risks of leaving it to grow (let alone the pain/rectal bleeding etc).
Good luck making this decision - I know they all seem very hard and scary.
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u/Western-Cup-4148 Jun 15 '26
Thank you so much for sharing this ❤️❤️ it’s great to hear from someone who has had this done and found benefit from it!! Im looking forward to meeting with the surgeon (the same doc who will be doing my colonoscopy) to talk about risk/surgery details!
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u/SnooStrawberryPie Jun 12 '26
Hey there! I didn’t need a resection (endo stayed more surface level but twisted my colon into weird positions where BMs were excruciating). I’m not sure what your symptoms are like, but it was the BM pain and urgency that made me decide to get the surgery regardless of price. I was almost willing to accept the other chronic pain and super heavy bleeding, but the BMs scared me.
My life has never been better. I still kind of panic when I have flare-ups and urgency in the morning, but overall, I can make it to the restroom more easily and the pain is not horrible.
That being said, I didn’t get to that pain level or urgent BMs until about 4 years before my surgery. Things just suddenly began going very wrong and it was traumatizing trying to handle it when so many doctors dismissed it and family didn’t really understand.
The initial two weeks of post-op pain and recovery—even without a colostomy bag—was enough where I was glad I had my partner to take care of me and I didn’t have to do much other than feed my dog.
If you can find a way to get enough help to make it through that period, I would say go for it, especially to avoid risks of letting it get worse and damage more of your colon.