I am almost 3 weeks since reversal date and all has gone well. Haven't needed pain meds for 3 days now and am sleeping on my sides again, so all that is big progress for me. The large gaping hole where my stoma was is closing up more each day. I have times where I am running to the bathroom to get there on time, but not always. I mostly feel in control but am comforted by being able to have a restroom nearby available. There are days I go several times a day and others twice. No loose BMs. My hemorrhoid friends are back occasionally and if there is one plus to a colostomy, it is not having those pia things around. After major complications with my first surgery, I was very scared going into this one, but I found a new surgeon and hospital with this surgeon being a colorectal specialist, which I highly recommend.
I have recently started to go on short shopping trips and outings again too, so I really feel I am getting my life back. Can't wait for the hole in my tummy to close completely and for the first time in almost a year be with hubby with nothing but the real me in my frontal areas!
Wanted to share the success to give hope to others as I think too many folks get rid of the bag and don't bother posting as it is a time that I'd like to forget, but we need to hear success and not forget those who need the hope and support of those who have been there.
Need to look into donating my supplies locally now!
Leanne
Congratulations, Leanne, and thanks for sharing your successful story. It is good to know what life is like when anyone goes through such a change. Keep posting as you heal and let us celebrate with you!
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Hi Leanne, congrats on the reversal. I'm about 9 weeks since my reversal and my hole where my stoma once was is completely healed over. It's really very amazing. I never thought I would ever be rid of my bag. But thank God I am. Yes, for the first time in over four years, I was able to make love to my husband without feeling embarrassed about my bag. My husband has been my best friend for over 25 years and my life partner and husband for 17. It was me that had a problem, not him! I even ate a salad for lunch today. How amazing is that! Okay, so I still have to run to the bathroom 10 times a day, but I'll deal with that if the trade-off is being bag-free! Take care, Barb
The good news is that you can avoid them with some small changes in your diet.
You are so right! We do need to hear about the happy "endings". I am facing the evaluation soon by my surgeon to see if it is a good idea. Congrats on yours!!
Thank you for sharing your positive story! I'm still deciding whether I want to go through the pain and hassle of a resection, and all I seem to read are nightmare stories. I'm so glad things are going well for you!
I
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
I am so happy to hear that all went well. I think sometimes people hesitate to tell about their positive reversal because so many people don't have the option on this site. I also have a positive reversal. Ducky Chick, look into all the positives and negatives. Of course, there is always healing time after surgery, but if the surgeon says it is right for you, go for it. Some people still go a lot after. I think it has to do with the location of the original surgery and also it takes a period of time for your body to adjust to using all its parts again...
Thank you all for remembering us who still have bags and dream of not having them. Please keep posting as time passes since these are the kind of stories we need to hear. Loretta
Sounds like your recovery was like mine. I am about 6 months post-op from my reversal. The only negatives I have to deal with currently are hemorrhoids and a possible hernia (going to look into that). Otherwise, it has been a positive experience. Best wishes to you!
I haven't posted in awhile, but after reading the recommendation to post success stories, decided to write. I am 17 months past my reversal. I had a sigmoid diverticular abscess and lost my sigmoid and most of my rectum. (I had never had an episode of diverticulitis so this complication and resistance to usual treatment hit me hard). I had the bag for 4 months while the tissue healed. Even though it was a pretty short time, it still was a life-changing experience. Recovery from both surgeries was pretty rough. I am doing extremely well now, but tell folks who ask me if everything is "normal" - that it is a new normal. Frequency averages 4-6x/day, smaller amounts and smaller diameter all due to the fact I have almost no "holding/storage area" - a function of the rectum. Urgency is much improved, which means I can delay for pretty long periods. Most of the time I do not experience the urge to "go" so it is not constantly on my mind and I can go about my day. I eat anything I want and have traveled extensively. Having the support of the folks on this website helped me more than I can say. Thanks to all of you who have posted. Of course, I will continue to think of those who are living with the bag and those considering reversals.
Patsy
Hi Patsy and others -
Good to see some of you again who had reversals around the same time as mine! I am 16 months "out" now and doing pretty well! Had a bag for about 15 months.....it seems so long ago, now, but I do remember the challenges and discoveries of the "bag" days! One thing that I can say about this journey is that it has taught me so much about myself.....some good things, and some not-so-good things!
When I first lost my entire large intestine back in Dec. 2010, I went through a period where I wasn't sure that I even wanted to go on. I was in a major pity party with myself, and there were several times that I could have just given up. But, when I found the folks on this forum.....folks like Primeboy, Dave_Canada, Yukon Steve, Patrice, Beaner, Mooza, Loretta, and many others, I discovered that these "earthly angels" could live life to the fullest.....some with reversals done or on the horizon, and some who would have their bags and conditions permanently. You folks are the ones who taught me to stop feeling sorry for myself and to get out here and live life! And, that is exactly what I did. Every day.....one day at a time!
Now I know that with or without a bag, that I can live life to its fullest! It's the size of the heart that counts; not the size of the bag or the plumbing!
Sure, there are still challenges with a reversal.....things like "going" 7-10 times per day on average; nighttime accidents; continued food restrictions for some; constantly working on the bulking up and slowing down aspects; etc......but, all in all, I am just happy to be here!
Take care, all.....both ye "baggers" and "bagless!"
God bless!
Darla
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Not sure if I am a success story yet. Had my reversal 3 weeks and 1 day ago. Still having multiple accidents a day. Was getting a handle on it last week by taking one Metamucil drink at night. Then, I caught the stomach flu at a birthday party. OMG!!! That was a nightmare. I couldn't stand up without waste pouring out of me. I think that is behind me. So, started back on the Metamucil tonight. I am hoping this is going to continually improve now. I am nervous I am going to be stuck in the house for months.
Our wedding is Oct 5th and I have to pick out a dress yet. I hope I can do that without a Depends on.
I am happy for all that have the success or wish that they have hoped for. And, have passion for the ones that didn't. The frustration with any step in this cancer process has been enormous. But I am happy to be here. Am ready for things to go smoothly (literally).
I have learned so much from this site. Nobody talked to me about how to live with the bag. Until I found this site it was like a prison. I had my bag for 16 months.
Thank you for all your help. And if you have any advice on how to make this part of the process easier, please let me know.
I am missing part of my rectum and the sigmoid colon because of cancer and 5 feet of my small intestine due to radiation damage.
God bless and take care,
Jody
Jodelin-
It is still very early on in your reversal process. I, too, was very skeptical when the docs told me that the body would eventually "retrain" itself to some extent. I remember those first weeks right after my reversal were tough going! (No pun intended!) I had several accidents, especially during the night, and had to stay really close to a bathroom in the daytime. For me, things began to get noticeably better by the 6-month mark but I could see improvement every week starting after about the 3rd month. Now that I am over a year out, things are pretty much in control during the day, and I can stay out for several hours without having to stop for a potty break! Nighttime can still be challenging at times, but I have noticed that the later I eat, the more problems I have with nighttime accidents. Or, as you say, when you got sick with a stomach bug things were like a faucet! I have been sick with stomach bugs about 4 times since my reversal, and you are right.....it is a bad, bad thing to be sick like that without all your plumbing! You literally have no control over the "pouring" until things are better!
Metamucil really helps me with the bulking up and slowing down; but I cannot stand the texture of the liquid so I take the capsules....about 10-12 per day. I take a couple before bedtime every night, and they do help with the nighttime bathroom visits as well.
In another 3-4 weeks, I bet you can get out and try on some wedding dresses without fear of an accident! I would plan on a late morning outing with a light breakfast like toast or something binding like oatmeal.....with limited caffeine beforehand!
Best wishes to you in your journey. Sounds like you have a lot of great living in store for you!
Darla
May I ask how they did your reversal? I haven't seen anybody say and my doctor said he thinks he is going to use a circular stapler and I watched a few videos on YouTube and some left a metal ring in that during the healing process it dislodges and you pass it with stool and others didn't! And when closing the stoma site some are talking about it being stitched closed and others are talking about it being left open to close on its own!! I am just curious as to what I have to look forward to! Thanks for any and all information that you feel like giving!
Sheri
Way to go, hockey mom! That stoma hole will close in time. The hem friends will calm down too!
Smiley....
I was reversed in August 2012 (ileostomy). There was a circular stapler used but I did not pass a ring that you speak of. As for the stoma hole, mine was left open to close from the inside out. This experience was sort of strange as the closing of the stoma hole looks quite impossible to begin with. It drains a clear chicken broth looking fluid that is quite aggravating at times. All in all, I would say it took about 9 weeks to fully close.
If I can make a suggestion.....buy a wrap or waist cincher from a lingerie store .... Just a plain spandex tube to cover your abdominal area. After a while, the tape you use to cover your wounds will begin to irritate your skin. This way, you can just place the gauze inside the cincher against your skin with no tape!!!!!!
The best thing I found to cover the stoma hole was a non-scented Kotex overnight pad. The backing is plastic and will keep the drainage from seeping through to your t-shirt or nightgown so quickly. Again....just place the absorbent side of the pad against the hole and pull the cincher over it.
The waist cinchers I use, I buy from Vanity Fair for $5 a piece.
Oh! One more thing.....I was reversed using an open midline incision technique due to the amount of scar tissue and adhesions inside my abdomen. While this certainly was not as easy as some of the laparoscopic technique scars I have seen...I do not regret taking the advice of my colorectal surgeon and going this route.
I was cut from sternum to near pubic hairline but I knew the surgeon could see everything inside of me and was literally freeing my guts from all those concrete-like adhesions. He is my hero!!!!!!
If you are curious, I only have about 9" of large intestine left. No regrets for the reversal!!!!!!! Just wish I would have found the surgeon who reversed me before the one who nearly killed me!!!
Hi, I was reversed without the ring you speak of. They didn't cut out any of my small intestine and reattach. It was healthy tissue so they stitched it with two layers of stitches. There was a 4" cut to remove denuded tissue around the stoma and it was completely sewed shut.
I was missing about 1 foot of colon and 5 feet of small intestine.
I am finally firming up some with Metamucil and Imodium. I have to take the Metamucil twice a day. Still have accidents. Went two days without one but then had 3 today.
I am doing the exercises for my bottom muscles I found on the Ostomy site of U.S. by Dr. Anderson. Fabulous - I give that the credit of my two accident-free days. But, oh my, I have a sore bottom from doing the exercises. Muscles are weak and working hard to do the exercises. But, need to or I believe I will have accidents FOREVER!!!
Wednesday it will be four weeks since reversal.
I understand it is a process. And, I do appreciate everyone's input. I need as much information as you can pass on. Thank you bag_n_drag! I don't like the taste of the Metamucil either. Wasn't sure if the pills would work. But, I think I will buy them when I have completed this container of Metamucil. Thanks for the encouraging words.
I will go in a few weeks to try on dresses with or without a Depends.
Or as my grandson says. "Grandma, do you need a pull-up?" He is 3. LOL
Thank God my stoma hole was stitched up and I had no problems, I'm 8 months out now.
I never had any accidents (was lucky) just the pain in my rectum itself is aggravating, can't sit/ride for long before it starts aching (donuts or cushions do not help) but I guess we pick our battles!
Hi Sheri. I had my colon stapled back together in a circular ring, and it healed well. The staples stay put. No problems with that. My ostomy opening was stitched closed at the same time (lower left side). That scar is about 2 inches and healed well. Hard to see now except for the small indentation. I also have a midline scar from above my belly button to the pubic area. Unfortunately, my surgery could not be done laparoscopically. Because it was opened twice, the scar is now indented and the two sides of my abdomen are not quite the same. Oh well!! Hope this helps with your concerns.
Patsy
L63, I've had hernia issues for a long time, and the doctor who did a colonoscopy a few years before my colonostomy recommended something unique and "homegrown" to take some of the edge off the irritation around the anal area. It was only a few weeks after hearing this that, for unrelated reasons, I'm now an ostomate, and so for the moment, I'm not using those suggestions. But now that you are "back together," perhaps, just perhaps, this may provide a bit of relief.
The "aid" is directed primarily at providing a bit of relief where butt cheeks can rub against each other and irritate the "seat" of the problems I was having. The purpose is to stop the direct irritation of the rubbing.
One part requires two cotton balls, another part requires Deisnex (sp?). For the cotton balls, he suggested gently pulling them out with a squeeze-pull-squeeze-pull pattern until they were approximately the shape of a pair of crispy Cheetos. Then gently twine them together.
I'm trying not to be gross, sorry if I fail:
Before applying, use the salve once a day on the length of the affected area, then insert the twine lengthwise as well.
He also recommended I carry extra cotton balls to renew them in between the times I "go". I hadn't quite developed that habit.
Cheers.
I am jealous of you, Latina63 (no accidents). I am still having accidents and I am 6.5 weeks out from surgery. I do the exercises, take Metamucil tablets, and use Imodium, but it all doesn't work. I go back to work tomorrow, but thank God I work from home. Otherwise, I don't think I could do it. It would be very embarrassing to have it happen at work.
Since cancer, there have been many things to contribute to my loss of dignity, but that would be too much.
I was wondering if anyone knows if you are taking too much fiber? I take 2 tablets 3 times a day. Going to change to 3 tablets 2 times a day today.
And, what about taking them around meal times.
Any help/advice would be appreciated. Thank you.
Jodelin - I take 2 Metamucil capsules right before meals and then 3 more at bedtime. This helps to slow me down and bulk things up. I did take Lomotil as well but it got to the point where it began to actually make my diarrhea worse, not better. So I have discontinued the Lomotil and never had any real luck with Imodium, either.
When I was in the hospital right after my big surgery, I had a nurse who had also been through the ileostomy and reversal process. She had no large intestine and most of her rectum removed.....the doctor did a J pouch on her. She is the person who advised me about when and how to take fiber and provided me with an immense amount of wisdom concerning her bag days as well as her post-reversal regimen. She took the powdered fiber in a teaspoon of water right before meals and at bedtime. At first, I couldn't understand what she meant about bulking things up and slowing them down....but how it all made sense right after my own reversal process!
For me, now, it's the fiber and a nightly dose of Tincture of Opium. The tincture slows down the whole digestion process.....it is a sort of last resort since it can be addictive, but really my only option besides the fiber. I now go anywhere from 4-8 times per day as compared to over 20!
You have a great attitude! Keep trying things in combinations until you find out the best regimen for your body! Best wishes on your return to work!
Darla
Thanks for the info bag_n_drag (love your alias).
I had tried Lomotril when I had chemo sickness, but it didn't work then either.
And, I haven't heard of it working for anyone. Imodium currently works for me (somewhat).
Still having accidents. I don't have any at night though. I guess I did find that odd as I
have them quite regularly during the day.
That I don't understand but working through the rest.
I have now upped my Metamucil to two tabs breakfast and lunch and three at dinner. May have to
add at bedtime. As things are only somewhat firm in the morning and then the rest of the day
not so much unless Imodium has stopped everything for greater than 4 hours.
How long did you still experience the purge daily? I hear some have it down to twice a month
after a few months.
Back to work as of yesterday. Like I said, glad I work from home. Or this may not be happening.
I better get back to work, but wanted to let you know I really appreciate your responses as well
as latina63.
Thank you!
Just to add my two cents worth..........I was in the hospital for 3 months with my original surgery and no rehab. When I came home, I could not even turn over in bed and had this stupid bag. Finally, the best therapist in the world got me sitting up in bed and eventually walking again after another two months of his therapy with me. You can imagine what that was like and with a bag to contend with. My original surgeon refused to do a reversal, so I found another one and had it done a year later. Best thing I ever did. Now I am back to normal since 2009.
I have a question, please don't be offended. Since most of the posts were from women, I have talked with other men about this and they had the same issue as me.
Did any ladies experience numbness in the groin area following the initial surgery? Or is that just something the men experience? Mine is mostly in the area of the scrotum, but also affects the penis. It has been 4 years now and still numb. The doc said I would improve but he was wrong. I still function alright but just not the same as before surgery.
Some surgeons are afraid of failure, I think. Mine, I don't think is too adventurous but she did do a few odd things to get it so I could be reversed. I had a leak that wouldn't heal so she did a flap to bring blood supply to the area. I am reversed now but I have heard of stories where people are missing their whole colon and do not have an ostomy. I am sure my doctor wouldn't have done that. She was pretty cautious.
But today I think I would opt for my ostomy back. This not being able to leave the house to do what I need to do because I cannot leave the toilet is so frustrating.
I have no numbness in my groin. I do not feel my stomach below my belly button but believe it will come back. I did have numbness in my left leg after the resection that resulted in my ostomy, but that is now gone and that surgery was in Jan 2011.
Hope your feeling in that area comes back for you.
Take care.
Glad to hear all the success stories. I had to have emergency surgery 4 weeks ago and due to the fact that I am taking chemo at the present time, totally unrelated to the colon rupture, I had to have the ostomy bag. I will be able to have the reversal surgery after the first of the year when I have completed my chemo. I've read some real horror stories about the reversals and was really nervous about it. But I also don't want to keep the bag any longer than I have to. So thanks for all the encouraging stories. Ruth
Christiesdad, my last surgery was in 2007 and I still have numbness. First surgery was in 1999 and things haven't been "the same" as before surgery for me either.
Leanne, oh what an inspiration! I am very happy for you. I have had my colostomy for two years now. February 2012, I had a failed attempt at reversal. I had gone back to the general surgeon that performed my life-saving emergency surgery in July of 2011. So, he now has referred me to a colorectal specialist. Yes, although I still am really nervous about it. I have been dragging my feet so to speak... I joined a ladies fitness club, and I have a few more pounds to lose, as I am trying to be healthy in body and mind when I go in. No date yet, just nervous...
Thank you so much for your words of encouragement. I know it helps me somewhat with my impending reversal....
Updates:
I am now 9 weeks out from my reversal surgery. Still having accidents.
Quit taking Metamucil and I go less often but there isn't any form to it. I guess I prefer going less often. I am still taking Imodium.
I was able to do the dress shopping without any embarrassing accidents.
But, very nervous I am going to be in the wedding and have an accident in front of everyone.
I really can't wait to have this part behind me. And, I do believe it will be one day, even though it seems so far off.
It is summer and haven't been able to do any of our normal summer activities - like fairs, camping, and beaches. Have to have access to a bathroom and I cannot wait in line.
Finding clothes to accommodate a Depends is as difficult as finding them to accommodate an ostomy bag. I am grateful I was able to be reversed and I can't wait to get to the part where it is better than having the bag. I just want it to get here quickly. I have bouts of sadness about this where I didn't when I was going through all of the chemo/radiation/cancer crap. I guess I always believed I would come out on top. So, this is a bit discouraging.
I am a Pollyanna and I really believed this part would go faster and I would already have it behind me. I have to quit doing that to myself.
Do some have to always be on low fiber diets? I think the Metamucil made the amount of trips to the bathroom worse, but it did bulk things up a bit.
Needed a place to voice my lousy thoughts about this.
Take care everyone