Anxious About My Upcoming Ostomy Reversal Surgery

Hello, so I got my loop ileostomy surgery in June 2023 and from the beginning, I knew I'd have it reversed one day. Now that day is almost here and I'm freaking out. My ostomy bag has become second nature and I'm used to it, yes it gets annoying at times but I'm scared to lose it, lol.

The main reason I got the ileo in the first place was because I had something called Hirschsprung Disease as a child and it went undiagnosed for many years and I developed mega colon and the colon expanded to the point it just couldn't be of use anymore and the only way I was able to go number 2 was with enemas and laxatives. And I guess I'm scared I'll revert back to that life of so much pain and frequent hospital visits.

Has anyone on this site had it reversed? What was it like? Is there any advice? Am I worrying over nothing?

Hi tnshaye,

It's completely normal to feel anxious about your upcoming ostomy reversal surgery. You're definitely not alone in this, and I'm confident you'll find plenty of support from the large community here.

Regarding your concerns, many people have shared similar feelings before their reversal. It's a big change, and it's okay to feel nervous. Some members have mentioned that the transition can be challenging, but with time, they adjusted well. It's important to stay in touch with your healthcare team and discuss any worries you have. They can provide guidance tailored to your specific situation, especially considering your history with Hirschsprung Disease.

This site has thousands of members, so I recommend using the search feature to find others who have gone through a reversal. You might even find someone nearby or around your age, which could make it easier to connect and share experiences. Best of luck with your surgery!

Hello... Welcome to the site.

I don't have the option you do, but yes, many here have had reversals. Some are happy with it and said it was easier recouping than their first surgery.

Some weren't so lucky and went back to the bag.

You do your research. Listen to some who reply. Question your doctor.

You have your youth in favor of healing quicker and you should take your time deciding.

You have not mentioned anything in regards to a hernia. So that's good news since June.

My question is if the issue was with your large colon, you still have that colon. Did they cut out the diseased area? Do you know what area was affected that led to your ileo now?

It's very important you know what's left (ascending, transverse, descending) and the length of colon left.

This will determine the success of the procedure.

Whatever questions and concerns you have, ask us. People here will tell you honestly.

Welcome wagon on way. Sit tight, kiddo.

Greetings from New Zealand, and welcome!!

I unfortunately ended up being diagnosed with toxic megacolon while undergoing an exploratory surgery approximately 25 to 27 years ago. They had to wake me up in the middle of the operation, after the surgeon had already spoken to my husband who had given verbal consent for them to remove my entire large bowel. I was a little (maybe that is a slight understatement) disconcerted when my surgeon explained that they had to remove the lot, or I'd die....
I did have my ileostomy reversed, but throughout the years I'd undergone 33 plus laparotomies as I'd had several bowel obstructions and an intussusception (when a section of the bowel moves into another section of bowel, which very nearly killed me; but not quite 😊). The reversal was an utter disaster though as I only had 3.5 meters of small bowel remaining, and I was running to the loo about 30 times or more a day.

First of all - having a second opinion never hurts! Especially if you are comfortable with your bag. After so many years, having a bag for me is normal, although I rarely tell strangers.
I have had well over 50 plus operations in the last 30 or slightly more years. So I spent a lot of time in the hospital.

I eventually came to the conclusion that doctors/surgeons still have much to learn, especially about the digestive system....

All the best,

Gracie

Waiting on the reversal date myself after having bowel cancer. I would say ask your surgeon and consultant about the fears you have. I'm sure they wouldn't do the surgery and put you back in the position you were. The fears you have about losing your stoma are understandable. Try not to worry. Look to the positives; that may help you focus before the operation. Good luck and all the best!

How much large bowel do you have left? Was it fully removed? This will have an impact on reversal for sure. It's natural to be scared before any surgery; I know I was.

How to Manage Emotions with LeeAnne Hayden | Hollister

G-Day tnshaye,

Please let us know if you still have your colon or not. If you don't have any colon left, then you will have to get what's called a J-Pouch or similar. If you do have some colon left, then there is still a problem with mega colon.

If you are happy with your ileostomy, then do what I did and keep it. My life is 1000% better with my ileostomy, and I would hope it's right for you also.

Regards, IGGIE

When I was deciding if I wanted a reversal there were 5 things I considered: 1) Heart-2-Heart conversation with my surgeons; 2) Results of studies assessing success rates of reversals; 3) How well the creation surgery went; 4) How well was I able to manage my stoma; 5) Discussion with wife.

1 & 3 went pretty much together and 4 & 5 went together; for 2, I looked at 2 studies summarized as:

Study 1:

A VA study analyzed outcomes and timing of ostomy reversal surgery, perioperative complications, and differences between colostomy and ileostomy reversal outcomes in veterans undergoing elective surgery for diverticular disease.
• 751 received a stoma
• 407 had ostomy reversal surgery (54.2%)
• 243 had colostomies (59.7%)
• 149 had Ileostomies (36.6%)
• 15 unspecified (3.7%)
• Median time to ostomy reversal was 5 months
• Complication rate after reversal was 23.1%
• Surgical site infection most common (9.1%)
• Factors associated with lower likelihood of ostomy reversal:
• increasing age
• hypertension
• comorbidities
• higher ASA classification
• There were no differences in postoperative complication rates after colostomy vs ileostomy reversals.
• Reversals after 4.6 months were associated with 3.4-times higher odds of complications.
• Creation and reversal rates are similar between the veteran and non-veteran populations in the United States.
• Delays in reversal surgery were associated with worse postoperative outcome
• A univariate analysis revealed that younger patients, those with lower ASA scores, those without comorbidities had fewer complications after reversal

Study 2

A retrospective review of patients with ileostomies and colostomies was performed at a university hospital.
• There were 96 patients (49 women) with an overall mean age of 56 years at the time of ostomy creation.
• Ostomy reversal was performed for 35 patients (36.5%) after an average interval of 5.6 months (range, 12-432 days).
• The mean age was 49.9 years for the reversed group and 60.5 years for the nonreversed group.
• Loop ileostomies and sigmoid colostomies  were the only types of ostomies that demonstrated a significant association with reversal.
• Loop ileostomy was five times more likely to be reversed than sigmoid colostomy.

Patients 50 and younger with no/few comorbidities and low ASA scores had the fewest complications after reversal. Stoma reversal complications include:
• anastomotic leak
• postoperative ileus
• bowel obstruction
• enterocutaneous fistula
• surgical site infection

I was tested for Hirschsprung's Disease, but was negative. Although, I did end up with megacolon. Still don't know exactly what caused everything. At my worst point, I was taking the largest bottle of Miralax that you can buy, every day! I had my loop ileostomy surgery last December and have chosen not to have it reversed. First, I don't want to go through another surgery. The first one ended up being more than just the one with my ureter being cut in half. That's another story! Plus, I'm okay now. I don't hurt anymore and I can control things this way. Yes, this all can be annoying sometimes, but overall, my life has been so much better ☀️ I hope the best for you no matter what you decide. I'm here if you need support.

I'm 80 and I have had my ileostomy for almost 2 years, and it has become comfortable to deal with. After surgery, I had a little over 50% of my colon left, and the surgeon said it could be re-attached, good news right? Not really. I asked the surgeon if, once re-attached, he could assure me I would not mess my pants at Costco, and he replied he could not. With that said, I elected to live with my appliance. It's not the greatest, but I have learned to deal with every issue thrown at me. For the record, the first surgery was to remove a polyp from my colon; the GI doctor did not mark the area well enough for the surgeon. The surgeon took out what she thought was the area, the wrong area, so I had to have another surgery to remove the correct polyp. Then the colon was re-attached; that reattachment failed and it almost cost me my life. Failures do happen. Legal action was impossible; doctors are a very tight group.

From what you have said, it sounds like you have reason for concern. I had my entire colon removed because it did not function properly. If you still have your colon, and, according to your description, 'it couldn't be of use anymore', why would it be any different if you had it reversed? That was what I faced. I had a non-functioning colon, and I started out with a colostomy, but it still did not function, so I had my colon removed. I function well with just my ileum. If you no longer have your colon, and they are talking about reversing it, with just your ileum, it has a whole other set of potential problems. People with no colons who have reversals often report being tied to their bathrooms, with frequent or constant need to eliminate, and also the caustic nature of the ileum's output can cause terrible skin irritation, being in contact with the skin around your anus. I would have a serious conversation with my surgeon, and yes, as suggested, a second opinion might be a good idea. Good luck!

Terry

You are absolutely and exceptionally beautiful !  May God bless you.

You are absolutely and exceptionally beautiful! May God bless you.

I had my ileostomy due to a complication with emergency surgery, and it was reversed after a little under 3 months, and I haven't looked back. This is my positive experience: the surgery was quick, as was the recovery. I didn't have any bowel conditions or cancers to begin with, so it's best to talk with your consultant/surgeon. What I've learned is that everyone has a different path, but I wanted to share that it can be positive.

My colon is just there; it does nothing anymore. I would have it removed, but I've had my belly opened twice and I'm not ready for another. Terry

Just to be clear, my reply was to the original poster, not you. Sorry for any confusion?

Terry

Wow you are a strong person with all you have gone through. I wish you all the best with everything going forward. 🙂

I have colonic inertia, which means my colon just does not work anymore as I am being told. Is this what your condition was called?

Hi Seashore Girl, Yes, colonic inertia was what I was finally diagnosed with, but this was after decades of what doctors just said was 'constipation'. It got worse as the years went by, and I lived on laxatives and was in constant discomfort and often pain. It wasn't until my poor colon perforated and I was given an emergency colostomy that things started to change for the better. It was clear that my colon did not function any better with a colostomy. The doctors could no longer blame it on pelvic floor issues, which was what one specialist insisted I had. I was sent for physiotherapy for my pelvic floor, which of course did not work. After my failed colostomy, my surgeon said it was pretty clear that removing my colon was the only way to go. It has improved my quality of life 100%. I read your bio, and it sounds like you have been through a lot, with more to come. I hope things end up as good for you as they did for me. I had four surgeries in a two-year period, plus countless ER admissions, all during Covid, but it's all good now. As they say, all's well that ends well. Good luck!

Terry

I'm an 82 1/2 male who had the laparoscopic-assisted Hartmann procedure with appendix removal on 12/16/24 on the descending sigmoid colon. The amount removed is unknown. Tending to the stoma 2-3 times daily is very tedious. I have 2 appointments for consultations with colorectal surgeons later this month to discuss reversal. I read your comments very carefully and intend to discuss them with the 2 doctors. I would guess my ASA is 1-2. Before writing this response, I read your 2/6/25 post yesterday.
The complication rate seems very high, especially the site infection, because prior readings indicated that anastomotic leak seemed to be the bigger concern.
The thought of not doing the reversal and cleaning and replacing the entire bag apparatus 2-3 times weekly forever, especially as I age, is also very daunting.
Don't expect any assurances from the 2 surgeons, but I can say that I'm not as convinced reversal is the answer as I was before.
I sure appreciate the support, though. It sounds like you're not planning the reversal, however.

G-Day Ojibwa,

Having a reversal is not always the best way to go. I went there and got a J-Pouch and had really bad times with it for 18 years and finally went back to my Ileostomy, and once you get better at changing it, you will, as I do, love your Ileostomy. I empty my bag 5 to 7 times a day; it takes less than 5 minutes. I change my bag twice a week, Mondays and Fridays; it takes me 5 minutes. Is that a problem? NO

Regards IGGIE

You are correct, no reversal for me — happy with my life investment management.

At 82, you are in the high-risk category for a successful reversal. Those who have successful reversals of the Hartmann procedure are usually 65 and under. As you noted, you have low ASA scores, which work in your favor. A colostomy is very manageable. If you are not already, try using a 2-piece appliance (barrier/wafer/flange and separate pouch). Coloplast, ConvaTec, Hollister, and Marlen all provide free samples of their appliances.

Starting with Coloplast, I recommend their SenSura Mio Click product line containing the following barrier/wafer/flange:

1. SenSura Mio Click — the area around your life investment (stoma) is level with your abdomen.
2. SenSura Mio Convex Soft/Light/Deep Click — the area around your life investment sinks into your abdomen. The convexity comes in 3 variants: Soft (if you have folds or valleys around your life investment); Light (if you have a slight retraction around your life investment); Deep (if you have a deep retraction of your life investment).
3. SenSura Mio Convex Flip Click (SenSura Mio Concave) — the area around your life investment rises from your abdomen (designed for curves and parastomal hernias). You may even prefer the Convex Flip if your life investment is on a flat area of your skin due to its strong adhesion.

Obtain the following free samples from Coloplast:

1. Pick one of the above barrier/wafer/flanges based on your anatomy.
2. SenSura Mio Click Closed Pouch
3. Brava Protective Seal
4. Brava Elastic Barrier Strips — Curved
5. Brava Lubricating Deodorant
6. Brava Adhesive Remover Wipes
7. Brava Skin Barrier Wipes
8. Brava Belt for SenSura Mio

Once you contact Coloplast, one of their product specialists will work with you in obtaining the necessary products. By using a closed-end pouch, you have the convenience of being able to snap one pouch off and another on without the hassle of draining your pouch. Normally, insurance will cover 60 pouches per month. If you allow your pouch to get between 1/2 and 3/4 full, you may only need to change your pouch twice a day. If your output is loose, try eating bananas to firm up your output. This should allow you to get at least 7 days from your barrier/wafer/flange before a change. If you have trouble reaching any of these milestones, ask further questions; many here are willing to help.

The other manufacturers have similar lines of products you can also try.