Regretting Ostomy Reversal? Need Support.

Does anyone else feel that way?

I don't have a pouch. I couldn't eat anything or get out of the house. I will take my stoma any day.

I like my bag! Didn't want reversal.

I opted out of having a reversal some years ago. My decision was based on the fact that I wanted to see what was happening rather than feeling what was happening. Not a day goes by now that I regret making that decision. I am totally comfortable with my ileostomy.

You made the right choice. I knew it could be rough and boy, has it been. My quality of life has changed and not for the better. It's funny, I had my ostomy for 3 months. After 2 months, I had gotten past all the bumps in the road and had gotten used to it. I even thought about just keeping it. It's been 10 months without it. I think if it was going to get better, it would have by now. I have an appointment Thursday with a surgeon to discuss getting the colostomy bag back. Thanks for sharing your story with me.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

That's so true. Not having a bag keeps you a slave to the bathroom. Eating causes so much stress because I know no matter what I eat I'm going to pay for it.

Thanks for sharing your lot.....

Did same!

My bag is my trade. I make it slap wiggle eyes on the top of it because it always shows. I am going to start letting it see the world when we go out walking. Hahaha.

Badge of Honour!

I also opted out of a J-pouch. I really didn't see any benefit from doing it. I managed well with an ileostomy for two years, didn't see any reason to fix what wasn't broken.

Did the same!

After my second emergency surgery for a strictured ileostomy, I was told I was no longer a candidate for re-hook up and I have to tell you I am fine with it. The pain and depression from those two emergency surgeries was enough for a lifetime! Plus, I lost my hair!! I would stand in the shower and weep every time I washed it. I thank God every day that I found this wonderful website! I have learned so much and found so many lovely people. Although I have had a rough three years, I truly think things are getting better!!

Hospitals are where they keep the superbugs!

Yep, the doctor told me to get out of the hospital as quickly as I could! Safer at home!

I had a reversal in August last year. The first five weeks were terrible, thankfully things have settled down. Some days I still go a bit, not as much as I was. Thankfully, I can leave the house. My surgeon told me it will be 5 years before I'm back to normal.

What is your diet like? I wasn't allowed to eat anything high in fiber for six weeks, then I had to introduce them slowly. I have unsweetened probiotic yogurt with kefir, foods and drinks low in sugar. Sometimes I sprinkle psyllium husks on my food; it helps thicken your bowel movements. Avoid raw vegetables and dried fruit.

It's hard; we all cope differently. There is no way I want that bag back.

I will not have mine reversed, and put myself through that again. I am 79, and will keep my bag. But I do see my surgeon this Tuesday as I have developed a Parastoma hernia, no problems as of yet but swelling. It was a long recovery for me. Intensive care, rehab etc. And after 2 years I am not again. No thank you.

I don't blame you. At 79, I wouldn't have a reversal either. Little Red, I hope everything works out for you.

Yes, been there with the hair loss twice... no more surgeries for me even if I could have a reversal... I've had a colostomy, attempted reversal then an ileostomy and another surgery for the reversal. Last year had Necrotizing Fasciitis from a leaky bowel and after 3 surgeries for my NF and another ileostomy... I am done!

I did see my doctor last week, he said I could have a reversal. I also have 2 hernias, one on my stoma (colostomy) and the other umbilical. He said he could do the reversal and the hernias at the same time, but I am looking at major surgery. But it is my choice, I have made up my mind to say no thank you. Unless there is an emergency and then I would have to have surgery and something done. I will keep what I have UNTIL ????

You have made the right choice for you. A reversal operation is quite simple, the two hernias not so simple. You need a lot of rest after any surgery. Not so easy after a reversal as you are always going to the toilet.

Sick of this, my reversal surgery would not be a simple surgery. For the reason, I had major surgery to begin with because of a rupture. He would have to go back in where the original surgery was done from my pelvic area to my waist. I was in the hospital for weeks after, on a vent in intensive care. I will not put myself through that drastic surgery again unless it is an emergency. I was lucky I made it through the original one; they gave me a 30% chance of coming through it. No thanks, I am too old to put myself through that again.

All surgeries are different. I don't understand why your doctor would put you through that again. Luckily, my reversal was a simple one, according to the surgeon. You have made the right decision. I'm only 51. For me, it was something I wanted. I hated the bag. Hopefully, my cancer never comes back.

I had my reversal almost 4 weeks ago and it hasn't been fun. For the first couple of weeks, I was going 10-12 times per day. The doc put me on Loperamide, which knocked it down to 5 times per day, but the med made me so tired I could barely keep my eyes open, so he said to take only 1 at night as opposed to taking it 3 times per day. I still go around 5 times, so I'm encouraged by the fact that a lesser amount yields the same result. I can do light activity but get tired easily. Sometimes I feel okay and other times I feel like pure crap. The doc expects that my new normal will be 4-6 BMs per day and that it'll take 3-6 months for things to settle in. I eat in small amounts and have lost weight - YAY! I read a lot of posts saying that this surgery was easier and that recovery time was faster. Well, my ass! I do see small improvements, so that's good enough for me. I can live with the more frequent BMs and I'll have to figure out a system as time goes on. I don't regret doing this as I hated the bag and emptying out that piece of shit 8-9 times per day.

Bagface, I was having 30 to 40 BMs a day for the first 5 weeks after my surgery. Things are a lot better now, still go a bit some days and other days I hardly go. I work 3 days a week if I'm not having a good day I take a gastro stop before I start work then I'm fine till I finish.

As I had chemo and radiation, my surgeon told me it will take me 5 years to get back to normal. It has been 6 months since my reversal and things are a lot better. Hang in there things will improve, try not to rely on medication all the time. If I don't have to leave the house I don't take any medication unless I'm having a really bad day.

Things will settle down after a while it is only early stages. How is your diet? Like you, I don't want that bag back, I hated changing it every day and having to empty it several times a day. It burst several times on me and what a mess to clean up. Good luck with everything.

If I were younger, I might consider a reversal. But mine was also an emergency surgery, and I am lucky to be here. I can live with my pouch. Yes, I have had a couple of accidents/leaks at first, but now it seems, after 2 years, to have settled down and I have learned a lot. My doctor said it is up to me. He would have to go back in the same way as my first surgery and then pull my remaining bowel down and reattach. Maybe it would not become infected, etc., or the stitching would hold, etc. He said the incision would not be as large as the first, but he can't go into the ostomy site itself as it can't be done that way. And then, I have developed a hernia, one in the ostomy and one umbilical, plus I have already had 2 repaired when I had my gallbladder out last year. So, that is my story and I will keep my colostomy unless there is an emergency and it has to be reversed.

Sickofthis - What you must have gone through those first 5 weeks! Glad to hear that things have greatly improved. I have no dietary restrictions, but I'm only able to eat small amounts at a time. I totally agree with you as far as meds go! I want you to know how much I appreciate your words of encouragement.

Chemo, radiation, tumor surgery, ileostomy, reversal failed, ileostomy, permanent colostomy! 5 years ago! Bag saved my life!

Had a chance to get one but turned it down, and I am very happy with my bag.

I've had a bag for 7 years and I'm now going through the reversal process but really regretting it. With the bag, I could tolerate most foods/drinks but now I have no idea what's causing constant watery output. I've put off the final surgery as things still haven't settled down and can't seem to find any answers.

I know there are no guarantees with this surgery, but does the consistency of the output improve after the J-pouch is connected?

I'm thinking the problem comes from the fact that my stoma is attached further up, so food will not be processed as much as before no matter what I'm eating or drinking.