Ostomy Reversal- Do You Regret It?

JanJan63

The subject has come up again about having it reversed and there have been a number of people mentioning the issues they've had after such as rectal incontinence, long tern use of Depends, going to the bathroom 50 times a day, that type of thing.

My question for those who have done it, do you regret it? If you could would you go back in time and just leave it?

Actually, I have another question. Is there anyone here who had it reversed and had a good experience?

Thanks for your input!!

Jan

Eryan330

Best choice I ever made

Hi Jan,

     I had an ileostomy for 8 weeks then had it reversed. That was 17 weeks ago. During the 17 weeks I was having upwards of 100BMs a day. My anus was always extremely sore no matter which of my 23 creams I'd put on it. I had to stop working which really depressed me and every day became ground hog day.  Some people told me to wait longer but I could feel my mental status deteriorating.  I sought a second opinion at Brigham and womens hospital in Boston and Dr. Bleday informed me that I could wait for years, it wasn't going to improve.  Chemo, radiation and the 2surgeries did a number on my colon and it resulted in bad blood flow.  I talked it over with my wife and decided that going with a colostomy bag and having my rectum removed would be the way to go.  I had the surgery 14 days ago and am excited with the results.  The bag is much easier to use then the ileostomy and there's no acid damage to the skin.  I empty it twice a day and in 6 weeks when the swelling goes down I'll switch over to the daily disposable bags so I won't have to even bother cleaning it.  For me the choice was easy.  It was do the procedure or go nuts.  I can now go and do what I want when I want with no pain or embarrassment of running to the bath room every 5 minutes. I hope this helps and would be more than happy to answer any questions you have. God bless

toddi1973

Chose the Reversal - twice

Hi Jan,

I had the opportunity twice to chose whether I want a reversal or not. The first reversal was a lot easier as that surgery left me with a little bit of colon. Once that little bit decided to act up and develop pre-C lesions again, that last piece of old plumbing was removed and with it the previously fine functioning j-pouch. The first reversal was a breeze compared to the second one. The second reversal (j-pouch direct connected to sphincter without any colon tissue in between) had me in screaming pain for the first couple of months due to the amount of BMs every day (50+ and all felt like battery acid). I am now a good year into this plumbing and things have calmed down tremendously after about 6 months. I am still going 8 to 10 times a day, depending on my food intake. I know there certain things that don't agree with me, but I also don't want to give up the joy of certain foods. ILEX protectant cream and Lomotil have been the two puzzle pieces that made the first 6 months bearable. Now I am happy with what I have and relieved that I decided for the reversal.

There's always the ultimate option to go with a permanent stoma, but me and my wife decided to give it every try to avoid that as long as possible. And so far it's working. (Knock on wood).

Good luck with your decision !!!! And be very selective with the surgeon that you pick for that surgery,

Toddi

JanJan63

Eryan330 said:

Best choice I ever made

Hi Jan,

     I had an ileostomy for 8 weeks then had it reversed. That was 17 weeks ago. During the 17 weeks I was having upwards of 100BMs a day. My anus was always extremely sore no matter which of my 23 creams I'd put on it. I had to stop working which really depressed me and every day became ground hog day.  Some people told me to wait longer but I could feel my mental status deteriorating.  I sought a second opinion at Brigham and womens hospital in Boston and Dr. Bleday informed me that I could wait for years, it wasn't going to improve.  Chemo, radiation and the 2surgeries did a number on my colon and it resulted in bad blood flow.  I talked it over with my wife and decided that going with a colostomy bag and having my rectum removed would be the way to go.  I had the surgery 14 days ago and am excited with the results.  The bag is much easier to use then the ileostomy and there's no acid damage to the skin.  I empty it twice a day and in 6 weeks when the swelling goes down I'll switch over to the daily disposable bags so I won't have to even bother cleaning it.  For me the choice was easy.  It was do the procedure or go nuts.  I can now go and do what I want when I want with no pain or embarrassment of running to the bath room every 5 minutes. I hope this helps and would be more than happy to answer any questions you have. God bless

Thank you so much for your

Thank you so much for your reply. I've had mine for 2 and a half years now. Recently I met a woman who'd had hers since the seventies due to Crohn's disease.

Jan

JanJan63

toddi1973 said:

Chose the Reversal - twice

Hi Jan,

I had the opportunity twice to chose whether I want a reversal or not. The first reversal was a lot easier as that surgery left me with a little bit of colon. Once that little bit decided to act up and develop pre-C lesions again, that last piece of old plumbing was removed and with it the previously fine functioning j-pouch. The first reversal was a breeze compared to the second one. The second reversal (j-pouch direct connected to sphincter without any colon tissue in between) had me in screaming pain for the first couple of months due to the amount of BMs every day (50+ and all felt like battery acid). I am now a good year into this plumbing and things have calmed down tremendously after about 6 months. I am still going 8 to 10 times a day, depending on my food intake. I know there certain things that don't agree with me, but I also don't want to give up the joy of certain foods. ILEX protectant cream and Lomotil have been the two puzzle pieces that made the first 6 months bearable. Now I am happy with what I have and relieved that I decided for the reversal.

There's always the ultimate option to go with a permanent stoma, but me and my wife decided to give it every try to avoid that as long as possible. And so far it's working. (Knock on wood).

Good luck with your decision !!!! And be very selective with the surgeon that you pick for that surgery,

Toddi

Thanks for your response. I

Thanks for your response. I had IBS that was pretty bad before the colon cancer and my surgeon says it'll be worse if I get it reversed. It affected my life in such a negative way that it's not something I want to go back to. I like not worrying about what I eat and if it will keep me home in the bathroom or not eating at all because of what will happen. I can't imagine it being worse.

Jan

danker

JanJan63 said:

Thanks for your response. I

Thanks for your response. I had IBS that was pretty bad before the colon cancer and my surgeon says it'll be worse if I get it reversed. It affected my life in such a negative way that it's not something I want to go back to. I like not worrying about what I eat and if it will keep me home in the bathroom or not eating at all because of what will happen. I can't imagine it being worse.

Jan

I had my ileiostomy reversed and my plumbing connected as normal .  The colon  attached itself to the ostomy incision, so I continued leaking.  This is called a fistula.  After about 5 weeks, the fistula quit leaking.  My Dr. said it healed itself from the inside out.  Lucky me!!!  A colonoscopy about 8 months later showed NED.  I've been NED ever since, about 6 years.  Only side effect is occasional diarrhea which I can control with LOMOTIL.  Leading a normal life. I've never regretted having the ilieo reversed>  

JanJan63

danker said:

I had my ileiostomy reversed and my plumbing connected as normal .  The colon  attached itself to the ostomy incision, so I continued leaking.  This is called a fistula.  After about 5 weeks, the fistula quit leaking.  My Dr. said it healed itself from the inside out.  Lucky me!!!  A colonoscopy about 8 months later showed NED.  I've been NED ever since, about 6 years.  Only side effect is occasional diarrhea which I can control with LOMOTIL.  Leading a normal life. I've never regretted having the ilieo reversed>  

Thanks Danker! So yours is a

Thanks Danker! So yours is a success. It seems like successful reversals are rare. I'm happy for you!

Jan

toddi1973

JanJan63 said:

Thanks for your response. I

Thanks for your response. I had IBS that was pretty bad before the colon cancer and my surgeon says it'll be worse if I get it reversed. It affected my life in such a negative way that it's not something I want to go back to. I like not worrying about what I eat and if it will keep me home in the bathroom or not eating at all because of what will happen. I can't imagine it being worse.

Jan

Had UC before colon cancer

Hi Jan,

I had ulcerative colitis before I had the cancer. And looking back to the UC days, I am doing so much better now. Sorry if my posting from yesterday didn't sound as enthusiastic as it could have. But I wouldn't do it any different. I consider both of my reversals a success compared to pre-Cancer times (UC would make me feel miserable all the time. I will never forget the permanent awareness of bathrooms around me with little to no time to get to them (or not)). Now with the second J-Pouch, a year after the reversal, I am as happy as I can be. The urgency is well controllable and Lomotil keeps the insides in check.

If I had to chose again, I would make the same choice again. As I said, the ultima ratio is always there. If everything fails, I would get the permanent stoma. But until that point, I will fight for 'normal' plumbing.

I was lucky enough to find a great surgeon down here in Florida at Cleveland Clinic who made this work. 

All the best !!!!!

 Toddi

John23

Janjanjanjan

I hope you realize that it all depends on what section of intestine has been resected, and by how much.

There are critical issues involved. Each of those you hear from have a different outcome based on what they have left after resection. Please be aware of that.

Colorectal surgeons or Oncologists do not always recognize the issues involved with intestinal resections, where good, well experienced gastroenterologists do.

You should seek the advice of a gastroenterologist and listen carefully.

The UOAA website is full of info, and can be helpful, but each of us is different.....

If you have an ostomy now that you can live with, great! But a "reversal" is a major operation, and nothing you'd want to do twice.

Good luck and best of health!

John

 

 

JanJan63

John23 said:

Janjanjanjan

I hope you realize that it all depends on what section of intestine has been resected, and by how much.

There are critical issues involved. Each of those you hear from have a different outcome based on what they have left after resection. Please be aware of that.

Colorectal surgeons or Oncologists do not always recognize the issues involved with intestinal resections, where good, well experienced gastroenterologists do.

You should seek the advice of a gastroenterologist and listen carefully.

The UOAA website is full of info, and can be helpful, but each of us is different.....

If you have an ostomy now that you can live with, great! But a "reversal" is a major operation, and nothing you'd want to do twice.

Good luck and best of health!

John

 

 

Thanks John. But my surgeon

Thanks John. But my surgeon that did the ostomy in the first place would be the one to reverse it. And he said the IBS will be worse. What would a gastroenterologist do? No doctor could ever get on top of my IBS and it was daily and almost constant. It affected my life in a negative way I wouldn't wish on anyone. I was surprised that it would be worse, though, because my IBS was very reactive to my emotions and stress as well as certain foods. So if the nerves have been cut by the ostomy, wouldn't that mean that my bowels would stop getting the signal that I'm stressed so it should work overtime and make me sick and head to the nearest bathroom asap?

And I'm worried about what happens in the meantime. I'm not okay with even having a few months of wearing Depends, let alone years or forever. I like eating potato salad, I don't want to have to give it up again. Or anything creamy or dairy or spicy or rich or whatever or even just water if it's in the mood to make me miserable. Things like processed food and fatty stuff, no problem. I didn't eat it before and I didn't miss it. I could eat it now but I have no interest.

I'm scared that I might be so bad I can't work at what I do because I'm crapping myself at work. And Depends are expensive. And what would I do? Bring them with me so I can change them during work hours? Um, no. The bathroom is right across from my desk and the patients sit right there. No way am I going to embarass myself publicly. I've had enough of that over the years with the IBS.

I just want to live well and the ostomy has given me freedom I haven't had my whole adult life. But it also inhibits me in some ways. I wish there was some way to know what to do. I'm so scared to get it reversed and then regret it.

Jan  

John23

Jan

Girl, I think you already know what to do. It sounds like you already decided on keeping the ostomy, so what's with the "confusion"?

Go with your instincts kiddo, your intuition is your best guide.

Be well,

John

 

RickMurtagh

total colectomy

I had a total colectomy, a jpouch created and a reversal.  Worst four years of my life and it nearly killed me.  Perm ileo now.  Life is as good as it is gonna get and I can live with this.  I could not live with that.  Your milage may vary...

best wishes,

rick

JanJan63

John23 said:

Jan

Girl, I think you already know what to do. It sounds like you already decided on keeping the ostomy, so what's with the "confusion"?

Go with your instincts kiddo, your intuition is your best guide.

Be well,

John

 

I'm really thinking about it

I'm really thinking about it again because I'm on a wating list and I think they'll be asking me soon if I want to go ahead with it and I need to have an answer.

JanJan63

RickMurtagh said:

total colectomy

I had a total colectomy, a jpouch created and a reversal.  Worst four years of my life and it nearly killed me.  Perm ileo now.  Life is as good as it is gonna get and I can live with this.  I could not live with that.  Your milage may vary...

best wishes,

rick

Thanks Rick.

Thanks Rick.

BillO60

Tough Decision

Prior to latest mets issue I was within about 6 weeks of having my "temporary" ileostomy reversed. I'd discussed the pros and cons with the surgeon before the initial surgery. She's an associate professor with the UCLA's school of medicine and more importantly she's been straight with me so I trust her opinion (one of the very, very few).

I'd had an ileostomy and reversal years ago and had problems due to bile acid diarrhea (a malabsorption issue) that caused diarrhea that nothing would touch along with urgency, frequency, the works.  It took a year before I found a doctor who knew what was going on and got me on the right medication to control it.  After that the reversal was fine. 

Now, however, the surgeon said that I have enough of the rectum left to do a reversal but did say that I would conservatively be going 6 - 8 times a day probably with some additional urgency.  I talked this over with two gastroenterologists who basically wafflled on their answers and deferred to the surgeon.  One basically said it would be pure guesswork considering how much of the internal structure has changed due to the last surgery.  Plus, the bile acid diarrhea issue is still there and although I'd restart the medication I'd been on before there was no guarantee it would slow things down significantly.

So, at his point the impression I'm getting is that I may be better off with the ileo. I've had it for a year and I've gotten more used to it. Do I wish it was gone, absolutely.  Do I want to get stuck having to run to a bathroom in a restaraunt and finding it occupied... nope.  I've been watching various video's on YouTube and reading discussions on ostomate boards and a few blogs.  Most people who chose to keep their ileostomy did so because the alternative was simply too painful and the situation was never going to get better, only worse.  Some lost jobs, spouses, became reclusive, or were at risk of losing their lives so going for a permanent ostomy wasn't really an option. 

But, I don't think I've read any stories of anyone who said they regretted it. Although there may be some out there that do but don't want to admit it.

This is maybe a pros and cons chart and then a what can you live with decision.

Good luck.

Bill 

JanJan63

Thanks Bill. I tried to find

Thanks Bill. I tried to find some statistics but couldn't. I think the problem is that most of the information comes from the doctors rather than the people who are actually dealing with it. I had to call the supplier for my pouches today because I got a box of defective ones that are leaking through the vent even with the sticker over it. It gave me the opportunity to talk to them about their opinions on appliances and such. She siad she doesn't understand why anybody gets the vented ones because they rarely work like they're supposed to. And she asked if my output is liquid, which it is. She said if that's the case the vented ones wont work for me. So two and a half years after getting the ostomy I'm goinng to switch to solid bags with no vent. I wish I'd had that at the start.

But the point is, it got me thinking about my output. Before the cancer when I had IBS I only ever had diarrhea, so liquid. And that's all I ever have now. So I'm thinking I could expect to have that if I have it reversed. It made me think about this reversal thing and think it's a bad idea even more so. And my cancer was very low. It's been called rectal cancer and colon cancer depending on which professional I'm talking to. So how much damage to the muscles is there? Also, I still have a little pocket in there from when I had the abcess. Would that become an issue?

Yeah, I think the ostomy is the lesser of two evils. And if I can get bags that are solid I'll be happier. The little stickers they supply are a different colour than the pouch and show through my clothes. 

Jan

John23

JanJan63 said:

Thanks Bill. I tried to find

Thanks Bill. I tried to find some statistics but couldn't. I think the problem is that most of the information comes from the doctors rather than the people who are actually dealing with it. I had to call the supplier for my pouches today because I got a box of defective ones that are leaking through the vent even with the sticker over it. It gave me the opportunity to talk to them about their opinions on appliances and such. She siad she doesn't understand why anybody gets the vented ones because they rarely work like they're supposed to. And she asked if my output is liquid, which it is. She said if that's the case the vented ones wont work for me. So two and a half years after getting the ostomy I'm goinng to switch to solid bags with no vent. I wish I'd had that at the start.

But the point is, it got me thinking about my output. Before the cancer when I had IBS I only ever had diarrhea, so liquid. And that's all I ever have now. So I'm thinking I could expect to have that if I have it reversed. It made me think about this reversal thing and think it's a bad idea even more so. And my cancer was very low. It's been called rectal cancer and colon cancer depending on which professional I'm talking to. So how much damage to the muscles is there? Also, I still have a little pocket in there from when I had the abcess. Would that become an issue?

Yeah, I think the ostomy is the lesser of two evils. And if I can get bags that are solid I'll be happier. The little stickers they supply are a different colour than the pouch and show through my clothes. 

Jan

Ileostomy

Ileostomy ?

It all depends on how much of what section(s) of intestine you have left after surgery. The way each of our systems processes food product is another variable that must be considered. And all of that is the reason you will read conflicting and opposing comments. There is no "one size fits all" when it comes to an Ostomy or an Ostomy's behavior.

As far as products and supplies (appliances, wafers, pouches, etc), what one works for you may not work well for someone else. Each product's adhesive is formulated slightly differently. Each manufacturer attempts to formulate their adhesive for various skin and body chemistry, and your skin and body chemistry can (and will) change over time and due to other chemical changes due to diet, illness, etc. If/when it does, your favorite appliance may fall off your favorite list quite quickly, depending on how much of a puddle you are standing in and how often.......

And (as if that's not enough?) I had batch after batch of appliances from Convetec fail at the pouch seam and/or from delamination of the wafer. Delamination is the separation of the product layers; separation of the adhesive to plastic layer, etc. They had me send the failed product(s) (waste and all) back to their engineering department. It was a clear case of very poor quality control. I received new products to replace those lost, but the problem was not resolved; I went back to Coloplast and have not had a problem since. (I had changed from Coloplast to Convetec due to the adhesive failures after a surgery that apparently changed my body chemistry for a short period of time)

It is all "trial and error" Jan. You will have to learn to go with the flow (yeah, pun intended). But if -I- had to choose between going back to pain during my expulsion of waste, versus only a minor possible inconvenience of the maneuvering of my waste, sans pain.... I'd go with the "no pain during drain" choice..... But hey... that's me. I'm a wooosie.

So anyway JanJan, try to fully understand that all the comments and "statistics" regarding any so-called "reversal" are as personal as the body parts you're concerned with. The absence of the Ileocecal valve, or the loss of a specific section of -your- intestine, can change your results dramatically, and drastically..... for the better or worse. It's like getting married. again. to the same person. again.

Good luck gal.

John

 

 

ellend

I ended up putting off reversal until after the 8 courses of mop up chemo are done, assuming I can get through them all.

My tumor was low, very close to the anal verge, so it may be more problematic than for those whose tumors were in the colon vs. the rectum. I think I will be having more discussions with the surgeon. I don't really want a permanent iliostomy, it gave me a lot of problems at first with leakage and the corresponding skin issues. On the other hand, living in the bathroom for weeks and ongoing incontinence issues does not sound pleasant either. Decisions, decisions.

Ellen

JanJan63

ellend said:

I ended up putting off reversal until after the 8 courses of mop up chemo are done, assuming I can get through them all.

My tumor was low, very close to the anal verge, so it may be more problematic than for those whose tumors were in the colon vs. the rectum. I think I will be having more discussions with the surgeon. I don't really want a permanent iliostomy, it gave me a lot of problems at first with leakage and the corresponding skin issues. On the other hand, living in the bathroom for weeks and ongoing incontinence issues does not sound pleasant either. Decisions, decisions.

Ellen

Exactly my concerns Ellend. I

Exactly my concerns Ellend. I'm picturing myself sitting at the front desk of the dental clinic I work at wearing a Depend. Which would hold any leakage but would still smell because it would be sitting there. Then having to do to the bathroom and change it several times a day. Some days it's so busy I have to wait over an hour to get to the bathroom when I have to go. And any hint of a smell would absolutely humiliate me. Not to mention that Depends are really expensive, much more than the pouches and appliances. And even if I had to just go to the bathroom a number of times a day I'd probably lose my job for jumping up when a patient is standing there. No, I just can't take the risk.

The IBS really affected my life in a very negative way. Not being able to do things because I was sick, having to go home or sit there so sick, not beng able to take my horse for a ride for any distance or go anywhere that wasn't close to a bathroom, having to use the bathroom in a public place or someone's house and stinking it up, the cramps, the feeling like I'm going to faint because I feel so sick, using creepy public bathrooms, all that nasty stuff is no more.