Colostomy reversal/possible ileostomy

Hi all, I’m new to this site. I’m here trying to get other people’s experiences that might be similar to my mom’s. My mom is 78 and has been living with a colostomy bag for about six months now as a result of having a perforation in the distal sigmoid colon. We are discussing the possibility of reversing the bag. We just met with a colon and rectal surgeon to get a second opinion and she advised that sometimes during the colostomy reversal, if there is a lot of contamination/scarring, a second operation called an ileostomy is needed to help give the bowel time to heal. Has anyone on this site had a colostomy reversal and needed a temporary ileostomy bag? If so, what was your experience with the ileostomy bag and the surgery itself? Was the ileostomy different from having the colostomy bag? Was the output different? How often did you have to empty/change the ileostomy bag? Currently we are using a closed bag from Convatec and change it maybe twice a day, sometimes three. How long did you have the temporary ileostomy before that surgery was reversed? Was there any complications? Any information you might want to share would be helpful. Thank you.

Hi daughter, I've only ever had an ileostomy so can't advise you but I know you'll get feedback soon from those who have been through this process. Best of luck with your mom's decision.🌷

I will turn 73 this July. 2 ½ years ago, I had an emergency colostomy, but after 6 months it prolapsed very badly and my intestine fell out dragging part of my bowel with it. I then underwent surgery in which the colostomy was revised to an ileostomy. My surgeon advised against my having it reversed as he says there is a 50% chance of it being unsuccessful and, having undergone 7 lots of surgery in the past 3 years, it's not a risk I am willing to take, especially since once I found the stoma pouch that suits me best, my ileostomy allows me to live a perfectly normal life. It is less bulky, more like a neat rose bud of sorts instead of a turgid sausage hanging out my stoma (as was the case with my colostomy) and, according to my gastric surgeon far less likely to prolapse.

I am still experimenting with foods, but I now eat more or less what I like, but still with caution. My output is slightly different to what it was with a colostomy, depending on what I have eaten of course. It also has a different odour to before. Again, depending on how much I have eaten dictates how often my bag would need emptying. I empty my bag when it is about one-third full, and I can wear a bag for an average of 5 days and more. I use Coloplast products which include transparent (as it's easier for me to keep an eye on things) drainable SenSura Mio Convex bags with belt tabs, worn with the elastic belt that keeps the bag in place even when I turn in bed, Brava protective seal, curved elastic tape, stoma powder, and adhesive remover spray.

Wishing your mother all the very best. 

Thank you for your message and for the well wishes. It’s a very hard decision for my mom to make so I’m trying to get her all the information so she can make an informed decision on what is best for her. Even though your experience is different, would you mind telling me about your experience about the ileostomy? My mom is currently using convatec and I was trying to look on their website for products for an ileostomy surgery and it looks like they only carry drainable bags. How often do you have to drain a day? 

Do you have any issues with dehydration from the ileostomy?

Sure. I have an ileostomy after a temporary one and subsequent failed  j-pouch. The more I eat the more I empty and different foods create different consistency. I empty every time I’m in the bathroom to pee, too, so I empty about eight to ten times a day. None of the urgency, though, that I had with my ulcerative colitis or j-pouch so that’s good. No issues with dehydration and I’m really bad at getting enough liquids in. I use Hollister bags (mine is #8962), it’s convex, and it’s 12 inches long. I also use a convex barrier ring. My stoma doesn’t protrude much and the skin around it dips on one side so not really flat. 

Thank you for your response Bertha. Just like you, my mom finally found a wafer and pouch that works for her so she she’s scared about needing a different type of bag. She’s concerned about neither of us being able to drain the bag. We tried and tried and tried but were unable to drain her colostomy bag because her bowel movements were more of a pasty consistency. We found luck with a closed bag from Convatec that is a peel and stick version. I read online that with an ileostomy, bag needs to be emptied frequently, like 5 or 6 times a day. We don’t empty, we just change when bag is 1/2 or 1/3 full and it’s usually once or twice a day, three times at most.

Thank you for mentioning that you were advised the reversal was only 50% successful. Something else for mom to consider and discuss with our surgeon.

The reason for an ileostomy is to protect the colon anastamosis.  This is done sometimes if it is a difficult surgery.  There maybe other opinions regarding doing an ileostomy and it would be worth getting other opinions.  Ileostomies have more liquid drainage and more difficult to care for.  Loop ileostomies are sometimes very difficult get a barrier that fits.   

Regarding your bag changes, I have an ileostomy and I have a bag change yesterday at 6 days but I have an end ileostomy and most times the barrier is changed twice weekly.  Colostomies can be regulated by irrigation too. 

Don't hesitate to contact an enterostomal nurse who would be available in larger cities.

Hi Daughter,  I started with a colostomy due to a perforated bowel, just like your mom.  Mine was reversed around 8 months later, as it just wasn't working for me.  I was given an ileostomy, but mine was not intended to be temporary, and later the surgeon went in and removed my large bowel.  I assume from what you have said, that your mom still has her large bowel.  For this reason, reversing the ileostomy is much more likely to be successful.  I wouldn't stress about that part of it.  My ileostomy is permanent, and I have found that living with the ileostomy is pretty much like it was with the colostomy, with a few differences.  My output is more frequent, and I can't imagine using anything but a drainable bag.  I probably empty 8 to 10 times in a 24 hour period.  I find some pouches easier to empty than others.  I use a Hollister, one piece, and find it much easier than the Coloplast, but that is just me.  Everyone has their preference.  Practice makes perfect, but there are many ways of emptying.  Some sit well back on the toilet seat, some kneel in front of the toilet.  Some even empty into a container on the counter, or into the sink.  Figure out a way that works the best for you and your mom.  As far as ileos being more difficult to care for, I don't find that to be the case.  I have a loop ileostomy (which I assume your mom will be getting if its temporary), and I have no problem fitting my flange on it.  It's smaller and more petite than the colostomy stoma.  Keeping well hydrated is important and other than making sure to chew all foods really well, your mom's diet shouldn't be restricted, except of course in the early post-surgery healing time.  And keep in mind, the ileostomy is only going to be temporary right?  Have another discussion with your mom's surgeon, to put your mind at rest, but reversing a colostomy is not the same thing as reversing an ileostomy (someone with no large bowel).  If the surgeon is recommending it, he/she must feel confident that your mom is a good candidate.

Terry

Thank you gentilejohn. The surgeon who saved my mom’s life said during one of our follow up visits that he would not recommend reversing the colostomy because of how much contamination there was. We were a bit taken back by this information because during my mom’s 30 day hospitalization where she got the colon resection, the surgeon was discussing reversing after mom recovered. Then he changes his mind and said even though it can technically be done, he wouldn’t recommend it because of the large amount of contamination in her body which can cause scarring.He wasn’t a specialist so we decided to get a second opinion from a colon and rectal surgeon. The colon and rectal surgeon said contamination/scarring can make surgery harder and if its a difficult dissection, she might need this temporary ileostomy, but she won’t know for sure until she opens her up. I’m just concerned because other surgeon said there was a lot of contamination so I’m assuming the worst. I want to ask the colon and rectal surgeon if scarring/scar tissue heals in time or gets worse. Right now we are at the 6 month range, but wondering if we wait until 9 months or a year would the scarring get better?

Thank you Terry!! Your post was very helpful. While I try to learn as much as I can from the doctors and from an ostomy nurse that has been helping me via video chat/text, I still sometimes get confused. In regards to whether my mom has her large bowel, I’m not too sure. I only know from her operative notes that they did a distal sigmoid colon resection with end colostomy and hartmann pouch. I thought the sigmoid was part of the large intestine? When we met with the colon rectal surgeon, she looked at the operative notes as well and said my mom has a decent amount of rectum left. 

Thank you for your advice on draining the bag. That was very helpful as well. Do you have to wake up in middle of night to drain the bag?

You mentioned that you have a loop ileostomy. Other people were talking about j pouch. Can you explain the difference if you know? How many types of ileostomy are there?  

Thanks again!

Hi daughter, I had a j-pouch and can explain what it is. When the large intestine, the colon, is entirely gone, the surgeon takes part of the small intestine and forms a pouch in the shape of a J where all waste collects, then attaches it to the only thing left of the colon which is the rectal stump, right on the rectum, and the poop comes out there. So since the colon, which slows things down and absorbs water, is gone, the j-pouch has to learn to sorta, kinda act like a colon. It's doing the job of the small AND large intestines. It's not an ostomy, there's no stoma or bag, so lots of patients give it a go. I did, but had similar symptoms to my ulcerative colitis and chose to have it cut out and go back to an ostomy. Two types of ostomies are end and loop. I'm cutting and pasting because it's too complicated to explain and even I don't quite understand so here goes! : "These are the two general types of colostomies performed. A loop colostomy is usually temporary, while an end colostomy is performed when your condition is considered irreversible. The difference between them is mainly in what happens to the two ends of your colon after it's severed.".......BTW, bless you for trying to understand your mom's situation. We ostomates on here had our heads blown with all of the info that was happening to us at the time. It's confusing and a lot. I hope my explanation helped a little.

Thank you so much! You did a great job explaining the J pouch to me. 

I wish I actually found this group months ago when my mom came home from hospital/rehab. It would have been really helpful. My mom went in for a colonoscopy and the doctor removed a polyp. In the area where the polyp was removed, she developed a hole in her colon and needed emergency surgery. She had so many complications at the hospital. She developed an abscess in her pelvic area and a radiologist had to insert a tube into her butt to drain as much of the abscess as possible but ultimately the tube stayed in place for three weeks. The incision from her surgery was left open and a week after surgery, a muscle torn and a hernia popped out so she needed a second emergency surgery. Then the hospital advanced her diet too fast after second surgery and she got an obstruction, which eventually cleared on its own. The hospital had her on nothing by mouth and slowly gave her liquids and thankfully it did clear. When they were doing a tube check to determine if they could remove the tube for abscess, they found a fistula. It was just one thing after another. My mom was so scared and overwhelmed so I assured her I would learn how to take care of her colostomy bag and appliance. I learned a little from the hospital nurses but I was having difficulty remembering everything. When she went to rehab, we had a lot of issues with the nurses there. They weren’t checking and changing her bag regularly. I couldn’t wait for her to come home. I had an amazing visiting nurse at the house that taught me how to take care of her wounds and how to take care of her ostomy. I was nervous but did my best. We were having so many issues with the poop pancaking at the top and leaking under wafer. It was recommended to do a virtual visit with an ostomy nurse and that was so helpful. The nurse recommended switching from a flat wafer to a convexity one and things finally started to get easier. I would do anything for my mom. She’s the best! Even though i have learned some things, I sometimes still get nervous. The ostomy nurse, visiting nurse and the wound care nurses at hospital have been a great resource for me but I wish I also knew about this support group earlier. I always have questions and i feel annoying.

Hi daughter, I am exactly in the same condition as your mum. I went for a biopsy operation on my sigmoid colon, the operation went wrong, the joint leaked and I got sepsis, they had to an emergency second operation 7 days after the the first one I came out of the operation with a temporary colostomy which is in theory reversible. The biopsy result was negative. The surgeon recommended if we go for reversal it is best to reconnect the bowel to the rectum and have a loop iliastomy for the bowel to heal and reverse the loop after that.

he said the operation is going to be very difficult and chance of complications. It is best to do the reversal when the body is ready for another big operation. The reversal mustn’t be done no than longer 3years since I had my colonoscopy which was in Jan 2022. They say it is better for me to forget it and keep the colostomy but I am going for a 2nd opinion soon.

My situation and stoma reversal are a bit complicated. I had an iliostomy for a year just to allow the bowel to heal before reversing, so be patient the first few months and allow the body to adapt and adjust to the trauma.

A colostomy is the end where the stool is collected, whereas a Ilostomy is in the middle at our small intestine. The output looks different and smells different, in my case the ileostomy output is more like food being put into the processor (actually we chew it in the mouth and digest it a bit in the stomach) so the food is broken down loose and liquid (light brown), imaged like baby food, as the Ilostomy is still in the middle of digestion and absorption. However, the colostomy has already digested the food and the large intestine are absorbing the water, so the output is more darker brown and less watery. Bags are similar yet different, also more liquid contein means easier to leak from our folded skin.

I am sure your mum will be fine and get used to the new ileostomy before the reversal.

All the best,

MettaJo

Hi Syd34,

I am so sorry to hear about what you went thru. It does sound very familiar to what my mom is going thru. I wish you all the luck. I will let you know how my mom makes out. Hopefully your second opinion will be able to better advise you on your options. Don’t give up hope, we were also told not to reverse it by my mom’s surgeon and we got a second opinion and was told the colostomy is reversible. Even though my mom is older, she has no big medical problems (no heart disease, no high blood pressure) so 2nd opinion surgeon thinks she can tolerate the surgery. I’m still nervous and so is my mom but we were happy to find a surgeon someone we know recommended.

Thank you for your reply and for all the information on the differences between the output.

My situation and stoma reversal are a bit complicated. I had an iliostomy for a year just to allow the bowel to heal before reversing, so be patient the first few months and allow the body to adapt and adjust to the trauma.

A colostomy is the end where the stool is collected, whereas a Ilostomy is in the middle at our small intestine. The output looks different and smells different, in my case the ileostomy output is more like food being put into the processor (actually we chew it in the mouth and digest it a bit in the stomach) so the food is broken down loose and liquid (light brown), imaged like baby food, as the Ilostomy is still in the middle of digestion and absorption. However, the colostomy has already digested the food and the large intestine are absorbing the water, so the output is more darker brown and less watery. Bags are similar yet different, also more liquid contein means easier to leak from our folded skin.

I am sure your mum will be fine and get used to the new ileostomy before the reversal.

All the best,

MettaJo

I'm glad I could be of some help.  Yes, definitely find out if your mom has all of her large bowel, or most of it.  If so, the reversal has a much higher chance of being successful. I read your comment about your mom having scarring that concerned the surgeon (never heard the term contamination used for this) and I'm wondering how he thinks this would affect her outcome.  Does he think she would be prone to obstructions?  Or is he just talking about the surgery itself being more difficult.  It sounds like your mom's situation is a little comaplicated.  You shouldn't be worried about asking questions and being 'annoying'.  This is your mom's life and health, and that is what those professionals are there for.  Please try not to feel intimidated by them.  

A loop ileostomy is when they take a section of the ileum, or small bowel, and bring it to the surface, without cutting it off, and creating a hole for output to exit, but leaving the organ intact, so that it can be put back in place if necessary (like in a temporary ileo).  An end ileo, is when they bring your ileum to the surface and sever it, so it cannot be re-attached.  I as given a loop initially, and my large bowel left alone, to see how well I would function with an ileostomy, as I did not do well with a colostomy.  If it had not worked, they could have reversed it.  As it turned out, it worked perfectly for me, so the surgeon went back in and removed my large bowel.  The only reason I technically still have a loop ileo, is because instead of pulling it out and creating a whole new stoma with an end cut, he just left it alone, as I was functioning well with it, so why mess with a good thing.  I hope this makes sense.

As far as emptying, I meant to add that your mom's eating habits will play a big role.  I do have to empty a couple of times during the night, but I eat a lot late in the day.  I am a snacker and instead of eating big meals, I eat smaller amounts throughout the day.  If your mom eats dinner and then doesn't eat again before bedtime, she probably wouldn't need to empty during the night.  I should mention that transit time is quite fast with an ileostomy, so from the time you eat something, expect it to come out in four to six hours, or even faster.  

I think you said you didn't want to have to change pouches, had found one that worked well.  You shouldn't have to.  But, depending on the stoma itself, its size and the contour of your mom's abdomen after surgery, you might have to experiment a bit with different appliances.  If you like the brand and features of the one you are using, you should be able to stay with it, might just be a size or some other small adjustment.

By the way, your mom is so lucky to have such a caring and devoted daughter!

Terry

Terry,

If I am understanding it correctly, I think the perforation causes lots of fecal contamination which has the potential to lead to lots of scarring. Because my mom had a large amount of contamination in her body, the first surgeon was not comfortable performing the surgery because he believed the contamination would have led to lots of scarring and that makes it a more difficult surgery.

When I got a second opinion from a colon and rectal surgeon, she did agree that fecal contamination makes surgery harder. The way she explained it (or the way I understood it) is if she gets in there and its contaminated and a difficult dissection but can still get it back together, she wouldn’t want to just assume it will heal on its own. The temporary ileostomy would give the bowel time to heal. She said if everything comes together nicely and there is not a lot of scarring, and it’s straight forward, then she wouldn’t need the temporary ileostomy bag.

I am going to call the office of the surgeon who did the colostomy and find out if she has most of her large bowel left. 

Thanks again Terry. I feel very blessed to have my mom and I would do anything for her. 

JUST AN UPDATE..
I called my moms surgeon today who did colostomy surgery and left a message for the nurse. She spoke with surgeon and he checked my mom’s operative notes and she still has most of her large intestine.

Hello. I have a iliostomy and output is like a heavy paste which makes it very difficult to empty pouch and slide down the pouch. It get stuck to stoma a lot of the time and I have to help it disconnect which is very messy. I do use a Hollister pouch with a filter and lubricating deodorant. Any diet suggestions to help make stool more solid? Thanks~

Thanks. Pleas let me know how your mom operation goes hopefully I’ll follow the same pattern to do my reversal too.

Hi Daughter,  Sorry for late response, just seeing your post now.  Well, it does bode well for your mom in terms of a successful reversal, but it also sounds like her situation is a little more complicated.  I just hope everything turns out well for her, and you.  Please let us know how things go, and good luck.

Terry

Hi R,  Do you keep really well hydrated?  If you increase your fluid intake, it should loosen your output.

Terry

My mom has a colostomy (not ileostomy) so I’m not sure if this is helpful to you. However, my mom also had pasty poop especially in the beginning when she first came home from rehab. It was pasty and pancaking at the top and leaking out under wafer. I reached out to the wound care nurse at hospital and she suggested that drinking enough fluids, increasing fiber intake and using a lubricating deodorant are all ways to help. I’m not sure if increasing fiber would also help with an ileostomy but you can ask about that. I also spoke to a nutritionist when my mom came home. You should do the same. The nutritionist was very helpful. Based on my mom’s weight, she was able to tell me my mom should be drinking about 6 cups of fluid a day. She said water, tea, broth from soup etc all count towards fluid intake. I also had to try different lubricant deodorants to see which one worked the best. My first sample was Esenta from Convatac and that did not work at all. All the poop was still stuck at the top. I found Brava lubricating deodorant to be the most helpful at helping the poop drop to the bottom of bag. I was also advised by a nurse to squish the bag with the deodorant so it’s slippery no matter where the poop goes. Hope this helps..

No worries Terry.

You mention that my mom having most of her large intestine left is good in terms of a successful reversal.

What is an unsuccessful reversal? When it cannot be repaired and you have to keep the stoma? Or just complications?

Thank you for all your guidance. Our next consultation is Wednesday March 1st. Then my mom will make up her mind but she is leaning towards keeping the bag.

Syd34,

My mom is not sure she will have the operation as she is terrified with complications that may arise but I will definitely keep you informed.

Hi Daughter,  Of course there is risk of complications with any surgery, but that is not what I was referring to.  Reversing a colostomy is easier because all or most of your colon is intact and it just means hooking the end back up.  It is a larger organ, so less chance of blockage from scar tissue and your bowel function can resume as it always was.  Re-attaching the ileum is different, as it is very narrow, and wasn't meant to carry stool all the way to the rectum.  There is more chance of scar tissue and blockage.  The other major issue is that the output from the ileum is very caustic, and much more frequent.  Some have chronic diarrhea and skin damage from the output coming in contact with your anus, which it isn't meant to do under 'normal' circumstances.  I was told I could consider reversing my ileostomy, but chose not to for those reasons.  These are things your mom's surgeon should be discussing with you both.  Bring it up if he/she doesn't.  Wishing you good luck with the decision.

Terry  

Terry,

The specialist explained that in situations when they have to take out a lot of the rectum, there is less storage compacity for stool, and this can lead to issues with frequency of bowel movements, cluster of bowel movements, and fecal incontinence. She asked if mom ever had issues with fecal incontinence before which she never did. I thought these issues were for colostomy reversal and not the ileostomy reversal. I will speak with her in detail about all the risks/issues with both surgeries. 

Thank you for bringing it to my attention about the likelihood of scar tissue causing blockages for ileostomy reversals.

Hello Daughter

I hope your mother and you will receive good information at her appointment today. I just had a loop ileostomy reversal almost 3 weeks ago. My initial emergency colostomy was created in May of 2021 due to sepsis after a Gynecology surgery. I was given a 6 month range for a possible reversal. I found a colon and rectal surgeon (not the ER doc) based on a trusted recommendation, and had several consultations before he determined my abdomen had healed enough to withstand the colostomy takedown. (Basically determined by a Pillsbury Doughboy kind of poke to my belly - haha!) It took 19 months before the consistency was right. Then I had to have a loop ileostomy while my colon healed for 8 more weeks. I'm trying to post a surgery follow up on another thread that I think you have also commented on. I just wanted to mention here that sometimes the timeline takes longer than we are originally told! Good luck to you today though, and in the total process!