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Successful ostomy reversal

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Tue Jul 30, 2013 3:24 pm
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?
Tue Jul 30, 2013 10:53 pm
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 dr 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 - Smile
Mon Aug 19, 2013 3:05 pm
Iam so happy for you.
I have had my ostomy for five years and I am having a reversal sugery on Aug 27, 2013. I am very very nervious. The reason I had the ostomey was because I had a heart attack and was put on plavix which cause me to bleed in my colon and lost so much blood i was told I wouldnt make it thru the proceedure. Im so scared but 5 years with dealing with a bag has caused many problems, and cause me to lose confidence and have low self esteem issues. But your words are very encouraging. Im 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.
Mon Aug 19, 2013 11:46 pm
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 digestive tract.  Those have helped a lot.  She also gave me some natural fiber tablet.  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 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 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
Mon Aug 26, 2013 1:28 pm
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
Mon Aug 26, 2013 3:19 pm
@ Latina63 - the body naturally produces the Mucus in the bowel and a way of cleansing its self -just we normal bowel movements we rarely could see it. i had a temporary loop ostomy and was originally suppose to be re-connected 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 being not actively used, and sometimes it would get infected, and when it did the would be a slight redish color to the mucus, and i would feel some discomfort. So if you mucus has any discoloration i would suggest seeing your dr and he'll likely put you on an Antibiotic for a week to clear any infection (Cipro usually)

James
Tue Aug 27, 2013 8:51 am
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...
Tue Aug 27, 2013 9:09 am
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 Brand 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
Thu Sep 12, 2013 11:18 am
Hi Nora,
The accidents have been reduced a lot. I have had many days now with out 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 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 Smile  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. Smile
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 ways to go.
Thank you to everyone for being there and offering what advice you can and support you share.
Thu Sep 12, 2013 12:32 pm
                                 
jodelin wrote:
. . . I have days where it is like I have the flu or something.  I go and go and go. . . . But then other days it is almost like normal except for the pain in butt.  And, also, on those good days I have a huge bloated stomach and have lots of gas.  I don't get the correlation . . .


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.
Fri Sep 13, 2013 9:46 am
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
Fri Sep 13, 2013 9:49 am
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
Wed Sep 18, 2013 1:47 am
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 ot think about a reversal. Yes a 2 to 3 % of infection. It has been 6 years since I have had it, due to a vegetable ball in my sygmoid area as I had a colostomy there over 20 years ago due to diverticulitis and my colon had exploded, wehre at that time I got peritinitus, 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 shoujld 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 succesful they were.
Wonder if anyone will read my reply to you??? We ravel a lot and also wonder how long a healing it would be?? Of course I will talk tot he surgeon again, but he sprung this qwuestion as we were about5 to leave the office, said just to think about it... and now I am.. thank you for reading my concerns.
Thu Oct 17, 2013 6:39 pm
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. 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 ok. 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. 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.
Sun Oct 20, 2013 11:24 pm
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
Mon Oct 21, 2013 9:09 pm
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 ok 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 (LGlutamine) again.  Maybe it will heal things so they don't hurt as much.

Thanks for everyone's help and good thoughts and prayers.  
Jody
Thu Dec 12, 2013 11:22 pm
Hi Jodelin,
I know it is 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
Sun Dec 15, 2013 9:23 pm
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 appt 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
Fri Dec 20, 2013 1:29 am
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 dr occasionally to all of this, bloodwork every 3 and 6 months, every 6 months they alternate between a 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 BM a day but normally it is always 5-7. I now take Miralax every day on the recommendation of my Gastro Dr 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!!
Thu Jan 02, 2014 12:52 pm
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 til 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 bathroom.  I bloat up really easy.
So my sagging butt is never going to get in shape at this rate Smile  I have gained almost all of my weight back so 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!
Sun Aug 10, 2014 5:52 pm

I am having my reversal on 8/25/2014. I have read a lot & after nearly dieing 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 few days & you need fewer pain meds then. They had trouble controling my pain with the first surgery because I take narcotics daily for advanced Lupus. One thing that I am concerned & 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 & I have written them down to ask him the morning of the surgery but that will be 6:30 AM & 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 is a panic? are they a problem with an MRI? & lastly, I am a bi-sexual man are there any complications sexually? I know that the perferation was about mid-colon so I doubt the last one is a problem but I kind of need to know & in this back woods 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.

Sun Aug 10, 2014 7:14 pm

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 

thatsrev2u wrote:

I am having my reversal on 8/25/2014. I have read a lot & after nearly dieing 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 few days & you need fewer pain meds then. They had trouble controling my pain with the first surgery because I take narcotics daily for advanced Lupus. One thing that I am concerned & 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 & I have written them down to ask him the morning of the surgery but that will be 6:30 AM & 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 is a panic? are they a problem with an MRI? & lastly, I am a bi-sexual man are there any complications sexually? I know that the perferation was about mid-colon so I doubt the last one is a problem but I kind of need to know & in this back woods 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.



Wed Aug 13, 2014 2:28 pm

I agree about checking in once and 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 and 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!

Thu Aug 28, 2014 7:31 pm

Thanks for the feed back. 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 & 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 titanim & not magnetic. They do show up on airport body scans & he will give me a letter if I want it. That will help if there is any confusion.

 

Tue Sep 02, 2014 2:00 am

That is awesome! Thx 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. frown

Sat Aug 13, 2016 10:40 am

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

Sat Aug 13, 2016 6:07 pm

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 discusions you've had with your surgon prior to the day will hopefully keep you empowered!

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

 

Wed Sep 07, 2016 7:25 pm

Reporting back for an update. It has now been almost 4 yrs 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 ilestomy 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 softners 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 NOONE is promised tomorrow so I refuse to worry about a day I don't even have yet! It robs me of today smile

Sat Sep 17, 2016 1:24 pm

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 your 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 everyday for what we have now. Worring about tomorrow only makes today seem unimportant.

 

Wed Sep 28, 2016 7:13 pm

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 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 at from losing weight. There was no flat plain to put 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 props 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.

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