Reversal Surgery: What to Expect?

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Katy3943

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 a 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 of months.

Please, any stories will help me understand what to expect!

Past Member

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

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NJ Bain

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

Katy3943

Just about 2 inches removed. It had abscessed 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 abscesses, an open appendectomy and they closed me up a week later. Total of 19 days in the hospital. Figure if I can live through that I can do it again with reversal surgery.

NJ Bain

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

Bain

 
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skylar

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

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

CharK63

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

Hello, you asked what to expect after a reversal operation, and 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 of days ahead because they don't do that anymore. They say bacteria gets on inflamed skin and causes infection, and they 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 hours of a liquid diet and started soft solids on the 2nd day. I knew I couldn't go home until 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 through the hall. I made it through 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 it 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. It's 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. That's 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 a laxative before bed, and a BM wakes me up. I love it. I don't allow myself to take Imodium 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 it's supposed to promote healing and a woman's 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 I'm eating again.
At home, I had weeks of having no appetite, but finally got some of my favorite meals and ate them day and night until 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. I 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 she's 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 get something to do after being worried about me but feeling helpless. I would work for about 2 hours and need to stop, but it took another half hour to get things back in place. In that half-hour extra, I would feel as if I was damaging myself and dying 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, doing 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 death's door one year ago. Hooray to me and thank you, Lord. Hope to have accomplished my mission and help you out as well! Here goes!

CharK63

Hello, 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 spilling 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

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

I do have one question if you don't mind. I live alone, and my son is in medical school and can be here over spring break. He gave me the dates last night. He can't be here for the surgery and the first week home both. He is leaving it up to me if I want him here for the surgery or my first week home to help me. My daughter will be here for the 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?

Katy3943

Thanks so very much for 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 am concerned too.

CharK63

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 a while, 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. The normal dosage would have been until the jug was empty. This was after a full day of a 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 mucus 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 through my stoma up to my stomach (I guess) and he was unable to insert the tube because my stoma was 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 4 a.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 the 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.

CharK63

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 right.

I have an appointment with a radiologist for a 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 anesthesia 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 6mm. The repair came out at 19mm but shrunk again within a week. The whole time I had the bag, I was bleeding from stools pushing through, then my body started 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 tuck with my reversal. Oh well. Guess we're lucky to be alive, right?

Well, I will keep posting the latest trials I'm going through. 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.

Thanks, CharK60

Past Member

I too am getting ready for the reversal. I am a 60-year-old male. It should be within the next 30 days. I have had this silly bag for a year all by myself, so it has been tough. It's real high maintenance, but sure better than being dead. I had colorectal cancer and had a large tumor removed, along with all the other nonsense like chemo and radiation. Blah blah blah. But it was days or weeks at most before bursting. All the other things that are in us, I too read all the negative stuff online until my buddy told me the same thing: quit reading that stuff. But I would like to hear some results. Are there any out there? Million thoughts going through my head. I thought about saying forget it and just keeping the bag. Any positive stories?

CharK63

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 an inverted stoma. I always had problems. The cause of my colostomy was a bowel blockage that resulted in a ruptured bowel. I had septic poisoning pretty bad but not nearly 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 you 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!

CharK63

P.S. I was glad to be alone during my ten months with the bag. I had a support system, but when it came down to it, I was alone during more blockages or blowouts and not knowing whether to stand or sit to change my bag. I didn't have anyone helping me out if I had to get up several times a night or reminding me what to eat or not. Or bugging me to get up when I didn't want to. I often told myself how much easier it was to be alone.

I had home health nurses visiting twice a week, and I also went to an interim care facility, so I didn't go home until ten weeks post-surgery.

I went home on the fifth day after reversal and had no health aides or any help with my mom and the house. In my opinion, the reversal was every bit as serious surgery except for the sepsis. I was very unsure of myself treating the surgical wound without any professional eyes on reassurance. I was still glad to not have a partner, but an occasional nurse would have been nice. Even a cook and dishwasher would have been nice, lol. Families! What can you do? Best to just let go of it, no matter how tired I am of being the adult....

Past Member

I have the same issues. It's easy to cut and remove, but harder to reverse with the least problems. Find a doctor that specializes in reversals. I found one on the other side of Florida where I am. His name is Dr. Steven Wexner at the Cleveland Clinic in Weston, FL. His phone number is 877-463-2010. Birds of a feather flock together, so he might know a colleague in California. Google him and give them a call at 800-359-5101.

CharK63

Baylee,

I had my reversal done on May 17th this year. Just having problems because the incision is still bleeding after all this time. I am going to have a CT scan on Thursday to see if there is a trapped pocket of gas or fluid that needs to be drained. If so, they will determine where it is located to determine whether I need another surgery or not. It will be a minor surgery, and I think I prefer that over having local anesthesia and being aware of what they are cutting on. Too bad I surely won't get to say my opinion.

Well, actually, I always voice my opinion, but I don't get paid attention to very often. I think it boils down to cause and effect, and I should just keep my opinions to myself. Oh well....

CharK63

Hello again, I got the results from CT scan and I have 2 hernias. OMG why don't they listen to us?

Although the idea of more surgery would be devastating whether informed now or earlier.

But, hey, I'm jumping the gun. The surgeon has the report and has yet to get hold of me. Secondly, I'm not devastated just disappointed.

If I have to have surgery it will likely be inpatient and laparoscopic so not nearly as much recuperation time.

But damn I hate to go backwards again when doing so well. I need to trust my instincts, I tell myself all the time! I knew I didn't feel well at even 10 weeks but was made to feel like I was being weak and lazy.

So I pushed myself and I've been lifting and carrying any weight I had a mind to even above my head and when I had to use a pivot to help me lift. Don't laugh, I am just a caretaker but I'm all there is around here and don't wait for someone to show up and "help poor little old me" put things away.

Anyway, the wound site has a viable scab on it which will succeed in closing the site but I've got a bulge right above the stoma incision that is becoming painful.

I am susceptible to suggestion I admit, but being worried always makes things worse. And it's time once again to stop researching online and reading worst case scenarios.

Wish me luck please and say a prayer in my behalf to just remain calm and always optimistic.

CharK63

Primeboy

Hi Chark. Yes. We all wish you luck and will say a prayer or two, not just that you remain calm and optimistic, but also in real thanksgiving that you have shared so much of what you have experienced with so much clarity and reflection. Lots of folks here are on the same journey and you took the time to light the way. You deserve nothing but the best of everything.

PB

CharK63

Primeboy,

Thank you! That is so sweet. I really appreciate reinforcement right now. Very nervous. And also, all of a sudden feel pain that I didn't have before I got a diagnosis. As I mentioned before, I'm easily influenced.

CharK

Primeboy

For what it is worth, Chark, just remember you're not alone. None of us are "islands". We are all intimately connected as the poet Donne said. Be influenced not by what makes us isolated but by what makes us a "part of the main".

PB

Past Member

Probiotics aid in digestion and protect us from bad pathogens (thereby reducing inflammation/infection). A healthy adult has 100 trillion and over 500 types of probiotics - they are 70% of our immune system. Antibiotics, medicines, aging, and stress can reduce the natural probiotics we are born with. Without probiotics, we can develop food intolerances and can't fight off infection. Food intolerances can cause gas, bloating, pain, and diarrhea.

Once you identify which foods may be causing problems, you can also avoid that food group or try digestive enzymes for that type of food group. After taking apple cider vinegar pills for several days, my intolerances for milk products and carbs/sugars cleared up. Artificial ingredients, preservatives, and sweeteners can cause problems too (common in hospital foods).

After my second surgery, after 10 days of taking 30 billion probiotics a day (I had worked up to the 30 billion before), I felt almost as good as I had since all of this started. Now I am taking the Nature's Bounty-Ultra probiotic, 90 billion/day, and it is helping with the milk intolerance. Start slow, work up to a higher amount. Everyone's different - you have to find the right amount and the right type for you, a trial and error process. Always check for side effects and interactions. They should be refrigerated and taken 2 hours after eating and 20 minutes before eating. Most people will develop scar tissue and adhesions after surgeries. These can cause future obstructions - check for natural treatments for these too.

For me, probiotics was a much better option - by far.

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