Successful Ostomy Reversal - Progress, Hope, and Life After Surgery

Big hug Jodelin, it will be alright. Hang in there. I could be wrong, but aren't you supposed to be incorporating more fiber now? What about straight Psyllium in juice or yogurt?

I think I was taking too much Metamucil as I was going all the time. That has definitely slowed down but I have had a few bad days in the last week. So, need to do something else.
But tonight after a week and a half with no fiber supplement, I have decided to try a 'little' bit of Metamucil. So I had a little over a teaspoon tonight with a glass of water.
I go see a nutritionist doctor next week. She is a natural doctor, so that gives me a bit of comfort.
I need to do something as nothing I do on my own seems to work.
Thanks for the hug -

I am so happy for you.
I have had my ostomy for five years and I am having a reversal surgery on Aug 27, 2013. I am very, very nervous. The reason I had the ostomy was because I had a heart attack and was put on Plavix, which caused me to bleed in my colon and lose so much blood I was told I wouldn't make it through the procedure. I'm so scared, but 5 years with dealing with a bag has caused many problems and caused me to lose confidence and have low self-esteem issues. But your words are very encouraging. I'm trusting in God and hoping I can have the same success as you. Hopefully, I can post progress after recovery and post a happy ending. Thanks to all on this site. It is really a great source of encouragement.

Having an ostomy can wreak havoc on your self-esteem. But, if it saves your life, you have to have it. Five years is a long time. Having your ostomy reversed is going to be good. It is a period of adjustment though. But, yours may be faster than mine seeing as you didn't have radiation.
The nutritionist gave me some probiotics to slow down digestion in my stomach and another pill to slow down the digestive tract. Those have helped a lot. She also gave me some natural fiber tablets. It was too much for me though. She also gave me some white powder you add to your water and drink throughout the day that helps rebuild soft tissue. It cleared up a sore I had since chemo. So, I have high hopes.
Things are going better but I still have accidents daily. But I have longer times during the day that are good. I have been out of the house more - birthday parties, weddings, shopping for our wedding coming up. So I am looking forward to getting some of my dignity back that cancer took from me and my ostomy reversal has caused.
But, I now see light at the end of the tunnel.
I wish you the very best. And congratulations on your scheduled reversal!!!

Jody

Hello,
I have had my reversal for 10 months now and doing much better, struggles here and there, but better. My question is, do any of you have problems with mucus? I was doing great and then poof, the last 2 weeks have been horrible, pain, diarrhea, and mucus! I hadn't passed any for about 3 months so it was a surprise, done some research and reading on the Colon Club I gather it is pretty normal but just wondering. Thank you

@Latina63 - The body naturally produces mucus in the bowel as a way of cleansing itself. Just like normal bowel movements, we rarely see it. I had a temporary loop ostomy and was originally supposed to be reconnected, but due to complications, I was left with no choice but to have a permanent ostomy. Before I was given a permanent ileostomy, my rectum and remaining bowel below produced a lot of mucus because they were not actively used. Sometimes it would get infected, and when it did, the mucus would have a slight reddish color, and I would feel some discomfort. So, if your mucus has any discoloration, I would suggest seeing your doctor, and he'll likely put you on an antibiotic for a week to clear any infection (Cipro usually).

James

Thank you James, so far it is just clear, like saliva, (yuck), it has stopped finally. I guess it just caught me by surprise as I thought I was done with it but I guess not...

Jodelin- I'm sorry, hopefully the accidents will get less and less, as far as fiber goes the recommended amount is 25-35 grams a day (for us it is 35g), yep that is a lot, and you have to do it gradually otherwise the gas will kill you! I do fiber bars and chew the fiber gummies but...the absolute best one is All Bran cereal, it has 50% of your daily fiber in one serving and it does not give me gas!! They look like rabbit pellets but they do not taste bad. You can mix them with your other cereal or grind them up for a coating on chicken (or whatever you like). I mix them with Raisin Bran and they are quite tasty.
I hope that by now you are adjusting better, our bodies are so different and they all cope differently after been traumatized. Stay happy and healthy!
Nora

Hi Nora,
The accidents have been reduced a lot. I have had many days now without accidents. They still happen. And, it is when I am having an exceptionally bad day bowel-wise. I have days where it is like I have the flu or something. I go and go and go. I get so weak on those days. But then other days it is almost like normal except for the pain in the butt. And, also, on those good days I have a huge bloated stomach and have lots of gas. I don't get the correlation.
If I take more fiber supplement than the teaspoonful in only 2 oz of water I go a LOT!! So, I only take the 1 teaspoon of Metamucil at night and I take the probiotic and enzymes before each meal. I had to quit taking the L-glutamine (white powder). That seems to make me go more too. I think pretty much everything makes me go more even oxygen.
I am hoping to make progress in leaps and bounds - my wedding is October 5th. I am so nervous that I will have an accident or be in miserable pain on my wedding day. So, if you think of it, anybody, please send me good thoughts and prayers for a good, uneventful wedding day with no accidents.
It has been almost 4 months since surgery. There has been improvement now that I look back. I have a little bit more control and output is less liquid. And, I have less pain. But, still have a long way to go.
Thank you to everyone for being there and offering what advice you can and support you share.

What I'm going to say here, Jody, is based on what I've heard from several people who've experienced reversals. I don't know if this is accurate information as it's not something I've experienced, but you could ask your doctor if this is perhaps what's happening inside you:

When the two halves of the bowel are reconnected, they are held together with stitches or staples. Staples are quicker and easier for the surgeon but tend to create more scar tissue and thus a narrowing of the bowel at the reconnection point. Because the bowels have a harder time moving stool past this narrowing, they respond by creating looser stool and/or secreting more mucus.

When something is done to thicken the stool, the body has a difficult time moving stool past the narrowing, and consequently, your stomach is bloated.

Three...you are correct, I have a small stricture due to scarring so it is harder for me to pass stool and I stay bloated for the most part unless I don't eat, well you have to eat right? Unfortunately, it is a very slow process and we will never be "normal" as our insides are not normal but we will adjust to our new "normal" and function quite nicely.
Jodelin...I will pray for you that you have a lovely wedding with no pain or accidents. My words are not just empty words, I believe in prayer...glad you are doing better! It has been 11 months for me since my reversal and it has gotten a lot better, some days I even feel normal! LOL

Oh...and I still go, go, go on some days no matter what I eat but it is further spaced apart, whereas it used to be every other day, and then every week, and then every other week, now it is about twice a month so it will get better.

Love your positive attitude. As I have had this cecostomy (ostomy on my right upper side), I have a post where I was hoping to get more response and input, but sadly only got one that suggested not to have the reversal.
I have 3 ventral hernia repairs in my belly and one at the sigmoid and now have a herniated ostomy. But my colo-rectal surgeon has said for me to think about a reversal. Yes, a 2 to 3% chance of infection. It has been 6 years since I have had it, due to a vegetable ball in my sigmoid area as I had a colostomy there over 20 years ago due to diverticulitis and my colon had exploded, where at that time I got peritonitis, survived that (but almost died). In any case, I was told by other surgeons it was quite dangerous to have the reversal because of my hernia repairs in the belly. But this surgeon (who is highly recommended and is supposed to be the best) seems to think I should think about it, no pressure. He says I do not have cancer, if I did he would not suggest it. I was concerned about being restricted by food again, but he says I would not have the large colon that I would be connected to the rectum?? Guess I need to ask more questions. It is great not to worry about what you eat, as I have been so restricted before due to diverticulitis. So I wonder if anyone has had this situation with a reversal and having 3 hernias or less. And how successful they were.
Wonder if anyone will read my reply to you??? We travel a lot and also wonder how long a healing it would be?? Of course, I will talk to the surgeon again, but he sprung this question as we were about to leave the office, said just to think about it... and now I am.. thank you for reading my concerns.

I am glad to hear of your success. I am going for a reversal on Dec. 2 of this year. That will be
6 months to the day since my surgery for my ostomy. Mine was caused by a blood clot that
took up residence in my small intestine. I spent 22 days recovering in the hospital after surgery.
I have high hopes for the upcoming surgery. I truly hate this thing and it has caused me to
make changes in my life that I had not anticipated before. I can say that other than problems
with raw skin for a while, the rest has been okay. I learned what to eat, not eat, how to cover the
bag and shower every day, found the right bag, and now can go, usually, 5-7 days without having
to change the bag. I gained back some weight. I do dislike that my bag needs to be emptied at
least every 20-30 minutes as food just seems to go through me like the dam broke. I have
great respect and empathy for those who have lived this life for many years. I am not sure that
I have the psyche that would or will allow me to do that. My wife is great, my caregiver to the
ninth degree, but she is also waiting for the reversal to be done. I want my life back as close to
what it was in the past. I don't know if that is going to happen, but I thank Pandora for letting
Hope out of the chest. It is what I have. Thank you for posting.

Blindsided - Praying for a successful reversal for you in Dec.! My surgeon is very cautious and for that I am so thankful. He recommended leaving it on for a year as he has had a much better success rate of no problems when it is left on longer. At first, I thought I would not be able to stand it, I literally went nuts for a while! LOL But then came a gradual acceptance and then I was so thankful for it and the year flew by, and now here it is 1 year since my reversal! Now, looking back, I don't know how I would have done it as my tumor was in my rectum and all of the work was done there. It would have been so painful! So in all things, I just have learned to give thanks - good luck and many blessings.

Thank you for all the well wishes. I made it through my wedding with only one minor accident at the end of the night. But I drank beer and I don't usually do that. It turned out okay and the wedding was great.
I hear that I am supposed to build up my fiber but I am taking in more natural fiber. If I take more Metamucil I go all day long. So, that doesn't work for me.
I am hoping to have the go-go days to be further apart, Nora. I spent two days of my honeymoon stuck in the hotel room but at least I was able to go on the honeymoon!!
I can't wait to be a year out and having less issues.
I don't have bloating much unless I drink soda. Which never turns out well, but sometimes I get tired of water. I just have no discipline. But I don't drink it very much. Maybe once a week.
However, I had heard there was something to make the output not so acidic...has anyone heard of that? That would help some of the butt pain.
I think I need to start trying to take the white powder (L-Glutamine) again. Maybe it will heal things so they don't hurt as much.

Thanks for everyone's help and good thoughts and prayers.
Jody

Hi Jodelin,
I know it has been a while since this post, but I still have butt burn occasionally, so I will recommend Calmoseptine ointment. It is over the counter, but you will have to order it from the pharmacy. It is a thick, pink ointment that coats your booty, and it is a wonder cream!!! If you have hemorrhoids, it works awesome for that too. Just thought I would pass that along.
Nora

Thank you, Nora. I love Calmoseptine.
Sorry to hear you still have issues with the burning bottom. I do too when I am having an exceptionally bad day. They are less than they used to be but still have at least 2 a week, sometimes more. This is a VERY LONG process.
I do now have days without accidents but still have them. Don't understand why. It has been over 6 months. I have an appointment next month to have a colonoscopy and my 6-month scan and they are going to see if I am a candidate for the therapy to get those muscles down there working. I don't know why a person wouldn't be. But then again, I am not a doctor.
Hope you and everyone reading this a great Christmas season.

Jody

I know Jody, it is a very long process, sometimes I get so discouraged but then I look back at where I was and where I am now and I say "ok Nora" "time to pick yourself up by the boot straps" and keep going. The follow up is what gets me, I went from seeing the doctor occasionally to all of this, bloodwork every 3 and 6 months, every 6 months they alternate between an EUS and a flex sigmoidoscopy (both are kinda like a colonoscopy), and my 6 month scans. Whew!!! That's what gets me the most, the waiting and holding your breath on the results every time, it's so stressful!!! Glad you are doing better at 6 months. It has been over a year for me and I have realized that I will never be normal when it comes to guts, and I finally have the guts to admit it! LOL, on a good day I have 2-4 BMs a day but normally it is always 5-7. I now take Miralax every day on the recommendation of my gastro doctor since I now have a small stricture from scar tissue and it is hard to pass stool. The fiber was just too inconsistent.
Sorry for all the info, sometimes it just feels good to unload on someone who truly understands. Have a wonderful Christmas and New Year!!

Nora.
It is so hard to be the sick one, the one that has as many bad days as good. I used to be super healthy and fit. Not anymore and it blows. I am glad to be alive but survival comes with a price. One I am willing to pay but some days it is hard to be positive and content with my now physical abilities. So don't ever apologize for venting. I DO understand and even though I didn't get a chance to respond until now, I have been thinking of your post every day.
Life is different. I dread the quarterly blood tests even though they said I had a 'complete recovery'. They don't know. Mine was stage 3 and I fear some rogue cell survived the chemotherapy or radiotherapy that almost killed me. I have my first colonoscopy scheduled on January 30 since I was diagnosed October of 2011. I am scared.
I am taking the Metamucil twice a day. I seem to be improving. I haven't had an accident since Christmas day. That is a record for me. There are still most days I can't work out due to pain or the feeling of having to go to the bathroom. I bloat up really easily.
So my sagging butt is never going to get in shape at this rate. I have gained almost all of my weight back so I don't understand why my booty and thighs have not filled back out. I think because I have to tolerate the nice scars on my stomach or the weird shape of my stomach due to the flap surgery that my ass and thighs should look awesome. I want some of these things to be as they were pre-cancer.
Our lives have a new normal and most of it isn't an improvement. Hang in there. We are still incredibly awesome people to those who know and love us. We just have to figure that out inside of ourselves.
Take care and I am sending you good thoughts. Hope your holidays were great!

I am having my reversal on 8/25/2014. I have read a lot after nearly dying with the original surgery. I do have a lot of fears. I am going to ask for an epidural for anesthesia since a lot of people said that lasts for a couple to a few days and you need fewer pain meds then. They had trouble controlling my pain with the first surgery because I take narcotics daily for advanced Lupus. One thing that I am concerned and curious to know if anyone else knows anything about is the procedure for connecting the two ends in the reversal. My surgeon said they connect the 2 ends using staples. That has generated a lot of questions and I have written them down to ask him the morning of the surgery but that will be 6:30 AM and I want to make sure I am clear-headed. If they use staples, how do they get them out? Do they come out? Does the tissue just grow over them? Am I going to put airport security in a panic? Are they a problem with an MRI? Lastly, I am a bisexual man. Are there any complications sexually? I know that the perforation was about mid-colon so I doubt the last one is a problem but I kind of need to know. In this backwoods community I live in, I could see the surgeon refusing the reversal if I ask that one before the surgery. Hope to hear from you all before I actually go to surgery.

Thatsrev2u......I had my reversal on 2-1-12.   I lost my entire colon to lupus vasculitis, so I know about taking pain meds for advanced lupus.   My surgeon used propofol, and did it laparoscopically.   He sewed my small intestine to my rectum.   I have never had an issue with the place where the two ends are connected.   I can't help you with your question about the sexual part of things....but I would imagine if you still have enough material to work with, things shouldn't be a problem.   I have LOTS of potential for accidents since my entire colon is gone, so I really have to watch it whenever I go into a deep sleep, or have an intense sexual encounter, because every time those muscles relax back there, I get a surprise!   I take medications to bulk things up and slow them down, but accidents still happen from time to time!   Those who still have a portion of their colon have much less of a problem with accidents!   I remember my apprehension so well, and I am sure there are posts out here from that time period from me and several others who were afraid, and excited, about the possibility of reversal!   I believe that Dave_Canada still has his diary out here as well.....he gave a day by day account of his journey which has been a valuable resource for others who are experiencing a reversal, or thinking about having the procedure done!   God Bless!   Darla  

I agree about checking in once in a while. I had my reversal 2 1/2 years ago and things are better now than they have been in 10 years. No more diverticulitis. Better and normal BMs. Only slightly diminished rectal capacity. I too, try to check in once in a while and give people some support. Unfortunately, it seems that you see more horror stories than good news on this site. I think that's because once things get reversed and people get back to normal, they forget about those still dealing with the bag and get away from this site. Good luck to all!

Thanks for the feedback. I got sick 5 days before surgery, so they postponed it. They thought it was a dangerous GI infection that people continuously on antibiotics get. It turned out I was just constipated! I am rescheduled for 9/8. I finally got hold of the surgeon and asked questions about the staples. He said what he finds when he gets inside will determine if he will use sutures or staples. They are titanium, not magnetic. They do show up on airport body scans, and he will give me a letter if I want it. That will help if there is any confusion.

That is awesome! Thanks for checking in. I had one failed attempt at reversal. So, I have been delaying another attempt for 1 1/2 years now. Just really nervous about it.

It's nice to see positive stories. My reversal is scheduled for Aug 16, 2016, and all the failures are starting to scare me.

Hi Jalabuhn,

I would think it's normal to feel this way since the date is so close. Think positive thoughts and all the questions and discussions you've had with your surgeon prior to the day will hopefully keep you empowered!

I also like to put my scary things in God's merciful hands.

Reporting back for an update. It has now been almost 4 years since my reversal, due to cancer I had about 4" of my rectum removed and 7" of my sigmoid, diagnosed in Nov. 2011, wore an ileostomy bag for a year and was reversed in Oct. 2012. Things are much better, never will be "normal" but better. I think it depends on where they have to connect and how low it is, my holding area is not very good because of the loss of rectum space, although I do NOT have accidents I have to take a lot of softeners to go...funny thing our bodies....hope everyone is doing great and living and enjoying life! Remember in this journey we must take ONE day at a time as NO ONE is promised tomorrow so I refuse to worry about a day I don't even have yet! It robs me of today

Hi Latina,

So nice of you to give us a recent update. It is good to hear things are as close to where they need to be to move on and continue with a good life.

You know, you're so right when you said "one day at a time," as we are not promised tomorrow. It's great to remind us that we should be thankful every day for what we have now. Worrying about tomorrow only makes today seem unimportant.

Hello everyone, I am charK63, and I have been posting under the subject line "ostomy reversal" but when I posted today I got a message it's no longer a valid topic and put my post under "ostomy tips" or some such.

I had my reversal May 17th this year after wearing a bag for ten months that we couldn't make work as my stoma was inverted and I have folds of fat from losing weight. There was no flat plain to put a barrier against and I was constantly exposed to fecal matter and often had to change 3 times a day.

I am now having a few problems and will try to bring my post here. I look forward to catching up with all of you but this has taken me hours to find where I belong but thanks for being here.