Meet & talk to fellow OstoMates 20,226 members

Reversal surgery

Posted by Katy3943, on Fri Aug 12, 2016 8:45 pm

Am wondering if anyone can share what to expect after reversal surgery? I've read too many horror stories about the pain from gas and severe and frequent bowel movements up to 20 times a day!!! Had ruptured appendix that almost killed me 4 months ago and came out of surgery with a bag. Am so grateful it can be reversed in a couple months 

 

please any stories will help me understand what to expect!

Past Member
Reply by Past Member, on Sun Aug 14, 2016 11:47 am

I will watch this thread as well.  I was slated for reversal in October this year but due to exhausting FMLA is now on hold til February 2017.  I have read many negatives as well and am on edge.  

Reply by NJ Bain, on Mon Aug 15, 2016 11:11 am

Katy,

  Glad you survived the appendix bomb.  I just have a couple of questions.

  Did you end up with an ileostomy or colostomy?  How much of your small and large intestines were removed?  Do you have Crohn's disease, ulcerative colitis or any form of irritable bowel disease/syndrome?

  If you're not suffering from any of the above, or as long as the surgeon didn't remove too much of your large intestine, I do not foresee you having any issues with the reversal.  It might take some time for your large intestine to adjust being used again, but I think you'll be ok.

  I never had the option for a reversal because most of my large intestine was removed.  Had I gotten a reversal, the large intestine track was so short, I WOULD have been going to the bathroom several times a day with loose stool.  Since the large intestine's job is to absorb water and nutrients, the little bit of large intestine I had left would not have been adequate to do its duty.  I'm sure someone here has had a reversal with a positive outcome.

Bain

Reply by Katy3943, on Mon Aug 15, 2016 12:02 pm

Just about 2 inches removed.  It had abcessed throughout my entire abdomen. They think it ruptured 3-5 days before I went to the ER. Guess I have a lot more tolerance for pain than I thought!!

There was a large bowel obstruction they removed which was non cancerous.  No diverticulitis or any other issues, so am hoping reversal will not be too nasty. I had drains through my butt cheeks into the abcesses, an open appendectomy and they closed me up a week later. Total of 19 days in hospital. Figure if I can live through that I can do it again with reversal surgery 

Reply by NJ Bain, on Mon Aug 15, 2016 12:07 pm

I think you're gonna do great Katy.  Hang in there!

 

Bain

Reply by skylar, on Tue Aug 16, 2016 3:50 am

Early September it will be time for my  reversal, so happy for that but the problem is it was  emergency  surgery done by a general.  Surgeon and he told me flat out after a couple of follow ups that I need to find another Surgeon he isn't  qualified to do the reversal. Please tell me what to do next, I am so lost

Past Member
Reply by Past Member, on Thu Aug 18, 2016 8:53 pm

Skylar mine was er situation as well, I had colorectal surgeon and he will do my reversal.  Hope that helps.

Reply by CharK63, on Fri Sep 02, 2016 6:45 am

hello. I am trying to beat this site's tendency to vanish my long winded posts by writing on wordpad and now I'vd been hunting and hunting for you to paste it on. Let's see how it works because I put a lot of effort in the writing because I wish I'd been told, and in the finding, because you just may appreciate what I have to say. Now its so late I'm rumdummy but here goes! (I'm not fixing anything else cuz it will all diappear, sorry)

Hello, you asked what to expect after reversal operation ad I think that's a very good question.
I had my reversal 3 months ago and I have to admit to you that I quit reading this site. My support team: surgeons, family and friends had no doubts at all that my surgery would be successful but I would look here and folks talked about 3-4 surgeries and near death experiences. So I chose to be optimistic and quit reading all the negativity.
I had no trouble with the prep but I do suggest you shave your pubic area a couple days ahead because they don't do that anymore. They say bacteria gets on inflamed skin and causes infection, and thet are so rough removing bandages.
I had trouble after the first surgery when they gave me morphine but I was so sick I didn't realize it. This time they gave me dilaudid and I was aware of the side effects. I go into this alternate universe playing out in my mind but no one is aware that I'm hallucinating. Since I was somewhat coherent this time I caught myself saying bizarre things and getting pissed at myself while the nurse or my family was clueless.
I had 24 hrs of liquid diet and started soft solids 2nd day. I knew I couldn't go home til I had a bm but I just wasn't hungry. I had bit my tongue in surgery so that hurt to eat as well. Also, I was afraid to have my first bowel movement. I didn't know what to expect and I was afraid it would be painful. Dark colored blood passed first but not at an alarming rate.
I was in a lot more pain this time than the first surgery. I wasn't even alert for a whole week but here it was only day 2 and they expected me to take long walks thru the hall. I made it thru and was home by saturday 4 days after Surgery.
When I got home I didn't have the support system I'd had before. I didn't go to a recovery center. I didn't have home nurses and no one came to help with my mom like before. I changed the bandage myself which was just washing it, soaking a piece of gauze in saline water and using a piece of tape to hold in place. It is still oozing from a tiny sized hole now.
I take Miralax dissolved in water at night and a stool softener twice a day. Now I don't take many pain pills I need to cut out the stool softeners. Its unique to me to go to the bathroom every single day because that was not normal for me before. I went every 2-3 days and didn't notice if it became 5-6 days. Thats where my problem came from I think.
I read that we should set up a cot in the bathroom to sleep on because we'd be in there so much but just the opposite is true. I take laxative before bed and a bm wakes me up. I love it. I don't allow myself to take immodium if I have a blowup because I want to stay loose. Sometimes I'm so loose I don't even know and have had minor accidents but not that can be noticed by anyone else.
Also I notice that my impulse to go (the signal) comes from a different place than my rectum. It's more like where I think my appendix is.
I take zinc because its supposed to promote healing and a womans multiple vitamin. I also take omeprazole (pepcid) to avoid stomach aches but I don't have a good product for heartburn which I get more often now Im eatig again.
At home I had weeks of having no appetite but finally got some of my favorite meals and ate them day and night til i was normal again. Watermelon, spaghetti, spinach dip, etc. I jumped in too quickly to eat forbidden food like grapes and nuts and I paid for it. Had to go slowly. I'm still losing weight but not drastically.
The very worst part of it was getting my strength back and having people tell me I'm fine now. Good as new. I don't want to have to beg for help but since I live with my mother and shes old, 90 years old, I expect things to be nice for her. When my help quit coming around I hired some help who didn't do half what I could do myself so I finally explained to her she could help some in this rough spot and that I would do my best. She was actually pleased to be get something to do after being worried about me but feeling helpless. I would work for about 2 hrs and need to stop but it took aother half hour to get things back in place. In that half hour extra I would feel as if I was damaging myself and dieing for that rest time.
They said 6-8 weeks recovery and I feel they are so wrong. We don't have a car and before my first surgery I walked or rode the bus to do anything we needed pulling a cart loaded with groceries or books or whatever behind me. I am now shopping on foot again, do all the housework the way I like. I've got my bike serviced and ready to ride AND this weekend I went on my first vacation. We made a day trip to Santa Cruz Beach Boardwalk. I rode the Giant Dipper (with no hands) and I waded in the Pacific Ocean without getting tired and having to stop! I'm so proud and happy!
By the way, I'm going to be 64 years old this month, I'm single and have 3 grown kids and 5 grandkids between 5 & 15. I live with and take care of my 90 year old mother with her cat and my dog. Who could ask for anything more? P.S. I have a car in the driveway now to get licensed. Not too bad for someone knocking on deaths door one year ago. Hooray to me and thank you Lord.ope to have accomplished my mission and help you out as well! Here goes!

Reply by CharK63, on Fri Sep 02, 2016 6:51 am

Helo, I responded to Katy 3943, lengthy and boring but I was also responding to you.

I have a paranoid obsession with this site because of many hours of typing and spillig my guts disappears! How can that be? Well, that's foolish but where do they go?

hope you get something out of my long tale. Good Luck to you.

Past Member
Reply by Past Member, on Sat Sep 03, 2016 8:19 am

I did, thank you, gives me questions I didn't think of to put on my list for surgeon when we talk in December about setting a surgery date.

I do have one question if you don't mind.  I live alone, son is in medical school and can be here over spring break, gave me the dates last night.  He can't be here for surgery and first week home both.  He is leaving it up to me if I want him here for surgery or my first week home to help me.  My daughter will be here for surgery so I will have her and extended family plans on coming in as well.  How much help is needed that first week or more?  

Reply by Katy3943, on Wed Sep 21, 2016 12:10 pm

Thanks so very much go the input!!  My doctor also told me to stop reading so much about reversal surgery. Said too many people post only negative things. Did you have to have a barium enema before your reversal? Was wondering how that works with a stoma 

 

I am so glad to hear your positive story after reversal. I am blessed to have a husband who has been my support system from day one of this nightmare!!  I hope you can find some good help for you and your mom. 

 

 

I too too am concerned 

Reply by CharK63, on Wed Sep 28, 2016 10:54 am

Hi Katty3943! Sorry for taking so long to answer you but I have had my 64th birthday this month and while it's nice to be the "special" one for awhile it still sets me back to think "how can I be that old and when will I ever stop having all these problems and actually grow up?"

Right now I want to address your question and then post some things on my mind to all who may be interested. 

You asked if I had to have a barium enema and the answer is no but I had some prepping to do..

My surgeon wanted me to have a colonoscopy prior to surgery and we tried to arrange the test and the surgery a day apart so I would only have one prep but due to the doctors schedules we were unable to arrange the surgery any closer than 3 weeks.

The scheduler gave me written instructions for colon cleansing but told me I didn't have to do the full prep because I'd been on the bag for ten months. They gave me a jug that had powdered ingredients of GOLITELY that I had to add a gallon of water to and also added a lemonade type flavor.

I started drinking it at 5:30 the night before the test in 8 oz. glassfuls every 15 mins until I started my bowels moving. Normal dosage would have been until jug was empty. This was after a full day of liquid diet not anything colored except green or yellow or coffee colored.

I tell you I was starving that day. I did better completely fasting than just teasing my appetite with unsatisfying liquids.

When it came time for pre op I had a big surprise! My tests showed there was a lot of stool left in my colon between the stoma and anal passage. I had passed the mucous a few times as they said I would but had no idea of this!

I was also told the gastroenterologist first scoped my colon from my anus to my stoma. (I was unconscious) then turned me to put the scope thru my stoma up to my stomach (I guess) and he was unable to insert the tube because my stoma too small. He had to get a pediatric scope to finish the test.

He reported all looked good but the surgeon had me drink the entire gallon of Golitely and then I had to use a Fleet Bisacodyl enema 6 hrs before surgery so I was up at 4a.m. trying to decide the best way to perform this operation by myself! Lol! I'm actually glad I am by myself because I don't think I would have taken any helpful advice graciously. 

I was prepared well in advance of surgery date thank goodness because I was unable to find that particular enema in stock on any local pharmacy shelves. I had to order it from Amazon isn't that the craziest thing you ever heard? It wasn't a prescription, I had to buy it over the counter.

So that was my prep process and we thought I was ready to go in and out of surgery fairly quickly but ended up being worked on for 5 hrs because there was a lot of scar tissue on the outside of my colon that wasn't apparent in the test. 

God Bless my surgeon for saving my life AGAIN! She seemed completely done in when she checked on me before leaving the hospital! Apparently I was bleeding heavily too and she thought she lost me. I have so many people to be grateful to that I just hope I don't ever take this wonderful life for granted. It's up to me to pay forward my many blessings and I've already started to work on it.

Reply by CharK63, on Sat Oct 01, 2016 5:10 pm

Dear Katy 3943,

This is CharK60 and I want to tell you I saw the doctor yesterday and finally have them agreeing with me that still bleeding since May isn't quite rite.

I have an appt. With radiologist for Ct scan because there must be a pocket of gas or fluid that is trapped and once we locate it he'll know if I can have it drained in office under local or have to go in surgically. Darn!

What made me think of you though is that I have to pick up 2 bottles of barium before the test! Hope I have to drink it lol.

I had to have my stoma repaired surgically because it shrank down to 6mms. The repair came out at 19mms but shrunk again within a week. The whole time I had the bag i was bleeding from stools pushing thru then my body start trying to heal it again and it would shrink more. 

I'm hoping if I have to have surgery again it will be as minor as that was. At least that's what I'm telling myself to not get scared.

It's so strange to me to have planned surgery! Obviously I haven't ever considered cosmetic though I was wishing they could throw in a big tummy ticketing my reversal. Oh well. Guess we're lucky to be alive right?

Well, I will keep posting the latest trials I'm going thru. Sorry, no, scratch that. I mean the various successes I'm having and how much better I feel. And also my gratitude for having a place to speak freely on it.

Thanx, charK60

Past Member
Reply by Past Member, on Sat Oct 01, 2016 9:56 pm

i too am gettin/g ready for the reversal 60 yr old male should be withen next 30 days have had this silly bag for a year all by my self so it been tough real high maintace but sure better than being dead had colorectal cancer had large tumer removed and all the other nonsense chemo radiation blah blah blah but was days or weeks at most before busting all the other things that are in us i too read all the neg stuff on line untill my buddy told me same thing quit reading that stuff but i would like to hear some results are there any out there?millon thoughts going thru my head thought about saying forget it and just keeping the bag any positive storys

Reply by CharK63, on Sun Oct 02, 2016 8:42 am

Dear Baylee,

Oh yes there are many, many success stories and they are mostly under the "popular" forum topic Successful Reversal Surgeries. 

Under this topic there are quite a few who opted to keep their bag and not even try reversal.

I was unable to make my pouches functional because of inverted stoma I always had problems. The cause of my colostomy was a bowel blockage that resulted in ruptured bowel. I had septic poisoning pretty bad but not near as many problems as you had.

I'm having mostly a successful recovery and had ten days of feeling better than ever but my stoma closure has not completely sealed and healed and it's been since May. I may have a blocked pocket that needs to be drained maybe surgically but have yet to find out.

While I was in surgery they noticed an irregular heartbeat that I am being tested for. This is disturbing to me and I really wish I didn't even know about it but like you when it comes down to it I will choose life. It may be life with a pacemaker and that frightens me very much.

I am very glad to get rid of the bag. It wasn't noticeable under my clothes or obvious or anything but I stayed home all the time because I was so jumpy with every twinge. I don't have much of an outside life anyway by choice mostly.

I take care of my 90 year old mother so I filed for social security at 63 last year. I am a bookkeeper and planned to work longer. I was also an at home mom so I could've used more earnings from working until 65 but u deal with life as it's thrown to you and I choose to have no regrets about my mom for the rest of my life. 

Sorry, off subject. I do indeed consider my reversal a success and I'm very glad of it.

Good luck!

* Please, do not post contact information like email, Facebook or Twitter accounts, or phone number. These will be removed by the Administrator.
All times are GMT - 4 Hours
Currently online: 34    
11 members & 23 visitors
Jabid (m)
Sun (f)
w30bob (m)