Questions to Ask Your Surgeon Before an Ileostomy Surgery

Hi everyone,

I am meeting my surgeon to discuss my upcoming surgery. The surgery is a permanent ileostomy, total colectomy, and Hartman pouch to close the rectum.

On a previous post, some of you asked why the surgeon wants to keep the rectum in, and I should discuss it with him. (Do any of you have your rectum and are happy with it having stayed in?) Some of you also mentioned the need to discuss the length of the stoma with the surgeon.

These are both things I wouldn't have known to ask until you guys made me aware of them.

My question to all of you who have trooped through the trenches, is there anything else I should be asking or be aware of?

Thank you for your time and advice.

Will the surgery be done laparoscopically? If not, why?

If your surgeon is a general surgeon, I'd ask about experience with doing what you need done. I'm sure there's some reason, but I have no idea why anyone would want to keep your rectum if you're never going to use it again. In my opinion, it's better to seal up the leaking spots than risk having to deal with post-op drip. 😁

They left my rectum; I don't know why, and since my surgery was emergent, I didn't have time to prepare and educate myself beforehand. Wish they had removed it at the time because I don't relish the idea of another surgery. I had rectal cancer, so I still have to have proctoscopies every 6 months - if they had removed it, I'd be free of that business.

Hello Clara

My surgeon, who has operated on me five times and whom I know well, told me the rectum can become cancerous, so it is best to remove it. As for the length of the stoma, it is not an exact science. My first only just protruded past the skin and was great as far as I was concerned. After further revisions (long story), it got larger in diameter and protruded much more, which I don't like; one of them even prolapsed. My point is the stoma can change considerably over time just because it can. More importantly, if you haven't discussed it already, the site of the stoma is crucial. Make sure the stoma or flange of the appliance will be nowhere near a fold in the skin, as this could cause leaks and skin issues. Discuss this location thoroughly with the surgeon.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Totally agree with Axl, remove the rectum, much safer long term as it can become cancerous. Regards, IGGIE

Like others have said, having the rectum removed is like a ticking time bomb. Mine was removed due to complications during surgery to remove rectal cancer.

Having it removed will keep you from having mucus dripping out.

All good points you should discuss with your surgeon.

My only addition to this discussion would be if he plans to sew closed your butt hole, ask if he is going to sew your two ass cheeks together too.

This was a surprise to me when having my kenn butt surgery.

I'm not sure if everyone with either kenn or barbie butts have their cheeks sewn, but it should be asked beforehand.

Thank you for all your responses; these are all great questions, and I'm taking notes so I come to my appointment prepared.
I'll be happy to add more notes as more of you comment.

It struck me while reading this how crazy and scary this all is... It's a huge permanent change in life, and yeah, it's huge. It also struck me how lucky I am to have found this group. I really can't imagine having such a candid conversation on this topic in any other setting, and somehow here it's so normal, and you're all so gracious and positive about it. I am thrilled to have found such a safe place where all the ‘impolite' topics, which are not table talk, are discussed with such dignity and honesty.

Mine were

It's because we "get it." It's not table talk nor a water cooler conversation.

It's a unique group of people.

Only being stuck in the same boat means a clear understanding and candid talk amongst ourselves. Respect.

Admiration. Empathy. Courage. And a little humor. Priceless.

A few of us do have this. It is annoying to feel it when it shouldn't normally be there.

Hello Clara

I am happy you feel this way about the site. I discovered it after my surgeries, and I don't even know why I was looking. I don't know anyone with a stoma, that I know of, so it was a very comfortable and welcoming feeling to suddenly discover there were others just like me who understood all aspects, and I am very grateful for that. And no, there are no impolite topics here; once a team of surgeons has crawled right through one's body, often several times, there is no dignity or shame attached to any bodily topic 😂🤣😂

You may be able to get hold of an appliance/bag at your visit with the surgeon to find the best flat location on your abdomen away from creases when bending or sitting.

Axl

My Ken butt consists of just my butt hole being sewn; I have no idea why you would need your butt cheeks sewn as well, doesn't make sense. Regards, IGGIE

Right, mine's almost healed, besides a 🖊️ hole about 10 cm deep that has to be packed every other day.

Excellent advice! I would have said that the two points to discuss would be the stoma placement and height above skin level. As a general rule, I'd think the placement will depend on how one likes to wear clothes, with the stoma either above or below the belt line. But by far, the most important issue is the size. I've read so many reports of skin and drainage problems all because a surgeon wasn't smart enough to get the stoma high enough above the skin line to avoid those problems. Again, as a general rule, I would recommend a stoma that protrudes 1” to 1.5” above the skin. That length would allow for easy drainage and keep the effluent off of the skin.

Hi Clara! I'm currently recovering from Barbie butt surgery and it's definitely something you should be absolutely sure of before deciding on. Some people are very lucky and heal well, however, a lot of people (including myself) have complications due to the perianal area being a difficult place to heal. If you do decide on getting sewn up or if you're curious about my recovery, please don't hesitate to send me a message.

Hi Clara, I had the same procedure here in Australia around 2 years ago.

The surgeon wanted to remove my rectum.

Because of erectile function problems resulting from a previous radical prostatectomy and subsequent penile implant to rectify this, I did not want to risk any further nerve damage from the removal of my rectum.

Although I'm an older gentleman, I still enjoy an active sex life which is important to me.

So I convinced him to leave it there and to also be gentle when removing my colon, as the previous surgeon told me a lot of nerve damage occurs from the pulling and twisting during surgery.

I know we are anatomically different, but I would presume there are nerves surrounding your vaginal walls which may be damaged.

If you retain your rectum, the only downside is that it still produces some mucus which you simply pass when you go to the loo and is easily managed with no incontinence issues.

Regarding the stoma, here they make it about an inch or so long, with a slight downward angle so it empties into the bag more effectively.

You may end up with a hernia later. I tried to be really careful to avoid that but still ended up with one.

Once an ostomate, you will be up once or twice during the night to empty your bag, a fact of life I'm afraid.

As for the pouch you mentioned, I don't know anything about them and can't understand why you would need it if your colon is being removed. Maybe a revenue addition. There are some unscrupulous surgeons around, I'm afraid.

I wish you all the best; my ostomy has given me back my quality of life and indeed saved my life.

Cheers, Ian. 🌹🌹

Hi Clara, I had an ileostomy with Barbie butt surgery two years ago and had zero problems with healing. My surgeon knew that it was a good idea to remove the rectum and anus, as there was no way I was going back to a j-pouch. I am glad it was all taken care of in one surgery, as leaving the rectum in can be a needless annoyance, as it produces mucus that has to be expelled. Some here have said it can become cancerous, so I guess periodic rectal exams would still have to be done, which I don't have to deal with.

Also, ask if your surgeon will be using dissolvable sutures, which will eliminate having to have the stitches removed.

I've often wondered that as well...

Hi Clara. I had an emergency ileostomy in 2018 (perforated colon from colitis) and still have my rectum. Since my recovery from surgery was very long and drawn out with complications, my surgeon said he didn't want to do any unnecessary surgeries on me, so he wanted to wait to remove my rectum until my next crisis (which thankfully has not happened yet). I do have some mucus leaking down there, but it's minimal and not that big a deal. I do have to have an annual sigmoidoscopy procedure to monitor my rectum for cancer (it's just like a colonoscopy, but they're looking at my rectum not my colon), and so far, all is well. I'm in no hurry to get the barbie butt surgery, but I do worry about the potential for cancer. I try to stay positive by telling myself that I'm lucky to still be here, so I'll just have to deal with future issues as they come. Good luck with your surgery. Keep coming to this forum with your questions as everyone here is great and there's a ton of good advice and tips to make life a little easier and less scary.

I have a permanent ileostomy with my rectum intact...Hartman Closure. My surgeon did this because I had previous pelvic floor surgery which injured me and led to my emergent ileostomy. I irrigate the mucus out, but I never heard about possible cancer from keeping the rectum. Good luck to you, and we're all here to help.

Each case is unique. No "one rule" for all. Due to the convenience of a reversal, surgeons leave your healthy rectum intact. I asked Mayo to remove mine, as my disease originated in my distal sigmoid. The rectum was covered in huge hemorrhoids and was painful. However, you sign your rights over to the surgeon when you sign the permit. My sigmoid had an adjacent abscess, and I woke up post-op shivering and very sick. They took me back in the next night and cleaned it up, but still left the rectum in. Transferred to a nearby nursing home (yuck). I developed another abscess 4" above it. Back to Mayo and more tubes. 15 months later, I still had many issues and FINALLY got them to do a proctectomy. Things went uphill after that. Convalescing at home and bored, I looked online at my hospital bill, 46 pages long. The surgeon never told me I received a blood transfusion during the second surgery. You are at their mercy. Get your wishes in writing!

Iggs, I thought you mentioned a flap of sorts in a post a while ago. I understand the buttocks are sewn completely shut on you. Mine too. Twice! And he sewed up the cheeks for additional protection. Think of it as a padlock on a gate. To prevent stretching the sewn-up buttocks, he added a padlock.

Hi Clarad. I wish you good luck with the upcoming surgery. You asked if anyone still had their stump. I do. I kept it because the surgeon told me if I had it removed there could be problems. Like not being able to pee right and not being able to get hard. I guess all of those things are connected to each other. Now, as far as being happy I kept it, it leaks mucus so I have to keep an eye out for that. But mostly, I am glad I kept my rectum. I hope this helps you.

Hi, I had my first surgery in 1985, an ileostomy due to severe anal Crohn's. It was performed at Cleveland Clinic, one of the best in the world, by Dr. Victor Fabio, who was considered the best at the time. (I may be biased.) They left my rectum in, telling me that someday I could be "hooked back up." To make a very long story short, after 4 more surgeries, they said it had to come out, so in 2006, they removed it. I've been in remission ever since. I take no meds at all and just visit with my GI doctor to shoot the breeze and talk baseball. I guess my whole point is that from the day in 1980 when I was diagnosed until my last surgery, I never imagined that this would ever happen.

I did not have the rectum removed. My ileostomy surgery was planned (Nov 2015) and I did a lot of research, watched YouTube videos on changing the pouch, etc. I felt well-prepared. When I came home, I had a steady stream of fluid coming from my rectum. It was sticky and uncomfortable. This fluid accumulates and then comes out when it pleases, sometimes in a semi-soft lump. Sometimes I can push it out when I get a "feeling," but not usually. My surgeon said the only way to get rid of this situation is to remove the rectum. No more GI surgeries for me! I'm done! I've heard it's a hard recovery. I'll put up with the sticky stuff. Sometimes I go a couple of months with nothing. According to my surgeon, I have to have a sigmoidoscopy every 5 years to check for cancer. It's like getting a colonoscopy. Light prep, they give you some "twilight" meds, and the next thing you know, you're awake and it's done. I am into avoiding all unnecessary surgeries at this point in life. Good luck. I hope you have a GI or a GI surgeon you can run these by because I'm not sure a "general surgeon" would have the experience of "aftercare" that you can benefit from. Good luck and let us know how it goes!

Thank you so much to every single one of you for your replies and for sharing your journey and experiences with me. Once again, I'm blown away by the positivity here, and hope to be able to see it too one day.
For now, I have been writing notes on all suggested questions and have a list of 14 questions! I hope my appointment doesn't sound like me conducting an interview 🙈 

I will keep you posted and let you know what the surgeon says.

Hi Clara,

I live in Ontario, Canada. I was not offered the choice of either. I had my ileostomy in 2011. I do have a rectum and a small pocket, so I wouldn't know the difference. I can tell you about my experience.

When I approached two different doctors about a 'Barbie Butt', I was told it was a very painful operation and advised against it. I did learn to live with the pocket.

You will develop mucus plugs in the pocket of the rectum. I have learned to do a small warm enema that will help to remove these plugs.

Good luck with your decision and your future health.

Linda Stillmovin

No Warrior, we both answered someone who mentioned a flap, but it wasn't me. All he did with me was sew the butt hole. Padlock or not, it seems like an overkill to me and extra painful. But shit happens. From now on, you will be Double Ken Butt. DKB.

Regards, Single Ken Butt (SKB) IGGIE