Colonoscopy After Colostomy Reversal: Seeking Experiences and Advice

Replies
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583
DexieB
Nov 14, 2023 3:34 pm

Hello! I will be having a colostomy reversal in a few months, and the surgeon mentioned that two months after my takedown, I will need a colonoscopy for cancer surveillance. I had a cancerous polyp removed in February, and that's what triggered the chain of events that left me with a colostomy. Long story short, my colon was perforated by a surgeon during a procedure that was done after my colonoscopy to make sure I didn't have any more cancer cells (I didn't). I got sepsis, had an emergency Hartmann's procedure, a long hospital stay, and a colostomy (they also took 14 lymph nodes during my surgery - all clear of cancer).

For the past five months, the long ordeal I have been through has had me focusing on recovering and not thinking about the cancer - but just hearing that I will need a colonoscopy two months after takedown has brought all that terror back to the forefront of my mind. Trying to be positive, but it's hard not to be nervous about a recurrence. And it seems dangerous to go in so soon after takedown - the prep has got to be hard on the bowel, I would think. Just wondering if anyone has had a similar experience, and how it went?

Cplumber
Nov 14, 2023 4:26 pm

Yikes. That's a lot! I have no idea about this. But Monday is the monthly ostomy meeting in person or on Zoom. Someone there might know, or typically there are one or even two WOC nurses that attend that may be helpful. Or, this Saturday is St. Paul's meeting, same kind of thing except I don't think they use Zoom.

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AlexT
Nov 14, 2023 7:26 pm

Ask them to do the colonoscopy just before your reversal; then it's one less thing to deal with while you're healing. Mind over matter and positive thinking when your cancer tests come up. I get a tad nervous when mine come up too.

Syd34
Nov 14, 2023 8:45 pm

Hello DexieB, further to our previous conversation, I had a very similar experience as yours. A year after my Hartmann surgery, I had a colonoscopy which was in two parts. First, they inserted the camera into my bowel via stoma, checked for any sign of cancer; everything was normal, but they found another very small polyp which was benign. Then they checked the stump by inserting the camera via the anus and checking the rectum, etc., which was cancer-free. Afterward, I did a CT scan which was okay. Don't worry about the colonoscopy; it is going to be okay. Remember, this time they only do a visual check for abnormalities.
Good luck.

Newhere
Nov 15, 2023 12:51 am

Hey DexieB, I had my reversal done on August 2nd this year, same as you: perforated bowel, Hartmann's procedure. About a month before the reversal, I had a colonoscopy up through the stoma and then the rear end to check things out.

Ask the surgeon if he can do it before the reversal?

That said, I read that you said you're going in for a reversal in January, in another reply you wrote. Don't worry, all will go well for you.

Take care,

 
Words of Encouragement from Ostomy Advocates I Hollister
gentlejohn
Nov 15, 2023 1:23 am

If you have had a cancerous polyp, you definitely need follow-up. It makes more sense to do the colonoscopy before your colostomy closure. If something is found, it could be taken care of during the closure. Also, when someone has had a sigmoid resection, usually a colonoscopy is an easier procedure for the endoscopist.

Justbreathe
Nov 15, 2023 2:40 am

You still have time to do research and to heal a bit more - I faced this decision myself and had a major change of heart after a few setbacks and what I refer to as “signs”. We are each so different and these major decisions ultimately should be our own decision. I found so few who would actually share their opinion with me. Those who did express their opinions gave me the insight to see they don't really know what I have gone through. That is when I came to realize the decision was on me and me alone. This was because no one else has gone down my exact same path or experienced my innermost struggles. Least of all the surgeons, follow-up doctors, or any nurse. No one, and I mean no one else, has your skin in your unwanted game. I have no doubt all would have said - go for it.

I would suggest - seek all the information you can gather and go with what you feel is your best decision. Is there any reason to consider a postponement for a bit longer to get a better feel for your readiness? We all have a well-placed fear of any surgery. Readiness is key, though.

My advice - do not let others make your decisions for you. Yes, I have been accused of being “the devil's advocate” in discussions, but I feel the best decisions are made when all questions are answered with total honesty or at least something I feel I can trust.

Best wishes and hugs to you. Please keep us posted on your journey. jb

Axl
Nov 15, 2023 6:26 am

Hi D,

It's easy to beat yourself up when revisiting darker times, but the fact is, it usually works out fine. It's human nature to do that to ourselves. Good advice here regarding the colonoscopy; I'm sure you'll be fine.

IGGIE
Nov 15, 2023 1:52 pm

G-Day DB,

I agree with AlexT. Why can't they do the colonoscopy before the procedure? You poor thing, they need to be making life a bit easier for you. Keep us up to date, DB.

Regards, Iggie

DexieB
Nov 15, 2023 7:42 pm

Thanks everyone for the great advice, insight, and kind responses! I agree with you all and I did ask my surgeon why they can't do the colonoscopy before reversal, or even just look during my reversal while they are already in there - and he said it's better to wait until re-connection as he can get a much better in-depth look at everything. But if I choose to wait longer on getting the reversal, he will do the colonoscopy through my stoma at my 1-year mark. I said, but isn't it a little dangerous to go back in there so soon after reversal surgery? He simply said no.

I don't know what the normal course of treatment is for my situation, and didn't want to keep questioning his judgment as he did save my life once already - so hopefully I can trust that he knows what he's doing. Just wondered if anyone has had a similar situation - thanks for sharing your stories!

I know I need the yearly cancer re-check - the upcoming reversal surgery (Jan 30th) just complicates things! Guessing I will always be scared to get a colonoscopy - I have to remind myself it's better to find out sooner than later if there's a recurrence. I was incredibly lucky I caught it as early as I did - just unfortunate that a surgical error caused all these other problems. I will have to find ways to cope with my anxiety when it's time for my colonoscopy every year!

I do have one more appointment prior to my surgery, so I will go over things again with him to put my mind at ease. I feel I will be ready for reversal by January 30th, although it will be very scary (and my 4th surgery within the space of 1 year). I think at this point my hernia is bothering me more than my stoma - I won't miss that at all! Thank you all for your support. :)

IGGIE
Nov 16, 2023 1:13 am
Reply to DexieB

G-Day DB, I know it's okay to say don't worry, but we are all thinking and rooting for you. Keep us up to date. Now sit back and have a couple of whiskeys. Regards, Iggie

Beachboy
Nov 16, 2023 11:18 am

Hi DexieB,

Maybe consider getting a second opinion. Or even a third. We have to be our own advocate. Your reversal is coming up soon. Don't feel rushed because you're running short on time. You can always reschedule reversal surgery. Go online and look up reviews and information about your surgeon. Last year, when I was in the hospital, using my cell phone, I looked up info on the two surgeons recommended to me by my case manager. Both had graduated medical school over 20 years ago and had excellent former patient reviews. I also looked up infection rates for the hospital I was in.

Take care

DexieB
Nov 16, 2023 7:39 pm
Reply to IGGIE

Thank you so much, Iggie. I will keep you all posted. And that last part sounds good - I think I'll do that this weekend :)

DexieB
Nov 16, 2023 7:48 pm
Reply to Beachboy

Thanks, Beachboy! I didn't have a choice of surgeons when I had my emergency surgery, but all the nurses kept telling me during recovery that I was lucky he was the one who was available when I was transferred there. He is the same one who will do my reversal and apparently has a great reputation. I did my research on him after the fact, and all the patient reviews online agreed with that. But thanks for the tip on infection rates - that's a great idea! And yes, if I don't feel ready, I'll definitely reschedule. You are right about being our own advocate - thank you for always giving such sound advice. Have a great day! I'll be enjoying the 65-degree weather in November here in Minnesota! :)

Differentclass
Dec 19, 2023 9:43 pm
Reply to DexieB

Hi Dexie. I'm having a virtual colonoscopy tomorrow pre-reversal. I had emergency Hartmann's on September 9 due to a blockage caused by diverticulitis. My surgeon has put me straight on his list, probably to shut me up, as I always wanted to go for reversal in spite of being terrified! Please let us know how you get on with it all. Best of luck in your journey.

DexieB
Dec 20, 2023 2:11 pm
Reply to Differentclass

I hope all goes great for you! Best of luck - I will update you, and I hope you will do the same! Thanks ;)

Differentclass
Jan 17, 2024 6:23 pm
Reply to DexieB

Thanks, Dexie. I'm sure all will be good. Keep us updated.