Ostomy Reversal- Do You Regret It?

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

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

 

 

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

 

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 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