Countdown to Ileostomy Reversal - What to Expect Post-Op?

Hi there BluHarley and welcome along to the site. Oh, I know well how you feel about wanting to have your reversal done. I went through that stage too and actually got to like mine. But I would caution you not to make the reversal date too much of a priority. I'm just trying to warn you not to rush it. I may have been the unfortunate one with having three cancellations and losing my surgeon, but it can be crushing having to build up several times only to have it cancelled. Just be prepared, that's all I'm trying to say. But on a more positive note, you'll find this place hard to beat for wonderful support and encouragement. By the way, if I'm not mistaken, I think there were various suggestions here on the site for those with insufficient insurance or the likes. Check with some of the suppliers too and explain your situation. I know Hollister has a similar scheme to help out.

So, be patient and take it one day at a time. You've only taken a slight detour on your Harley, and you'll soon be back on the highway. Take care, Colm

Hi there BluHarley and welcome along to the site. Oh, I know well how you feel about wanting to have your reversal done. I went through that stage too and actually got to like mine. But I would caution you not to make the reversal date too much of a priority. I'm just trying to warn you not to rush it. I may have been the unfortunate one with having three cancellations and losing my surgeon, but it can be crushing having to build up several times only to have it cancelled. Just be prepared, that's all I'm trying to say. But on a more positive note, you'll find this place hard to beat for wonderful support and encouragement. By the way, if I'm not mistaken, I think there were various suggestions here on the site for those with insufficient insurance or the likes. Check with some of the suppliers too and explain your situation. I know Hollister has a similar scheme to help out.

So, be patient and take it one day at a time. You've only taken a slight detour on your Harley, and you'll soon be back on the highway. Take care, Colm

Hi Ken-
Welcome to our little corner cafe!
As Colm said, you'll find a lot of good stuff on this site and some very poignant stories here as well.    Every person who graces us here weaves a tapestry .....the darker, bolder colors and twists that brought them here.....the lighter, brighter colors and weaves that tell of their survivals....their hopes, and dreams.
I've been where you are, too.    My large intestine perfed in 3 places one night and I went from "I feel sick" to "what the bleep happened and what is this appendage hanging off my abdomen?"
There are several of us who have been slated for reversals within a few weeks of one another.    I had mine on 2-1. Colm's came last week.     It was Dave's turn on 2-21; and since this is his thread I won't over-post on my own details!    We are all so thankful that Dave fared well with his procedures and gave us a quick "Hello" this morning!    One thing you won't lack for on this site is support.
Your screen name reminds me of that song "Life is a Harley; I wanna ride it all night long!"    Oh no, that's HIGHWAY!    
Again, welcome!    We will look forward to seeing more of you 'round here.

Darla

Thanks Colm and Darla! I know what you mean, Colm. If anything can go wrong with my plan, it will. I don't want to hijack Dave's thread either, I'll start my own soon. Thanks to all.
Dave, I hope your recovery is going well.

Hi all.
I'm still in the critical care unit, but mostly because there are no other beds.
Internet connection is sporadic, so I haven't posted much.
I have been keeping a bedside journal of everything that happens so I can keep my promise to the others here facing my situation.
I'll post it all when I can.
In short, the doc says he is happy with the reconnect but spent over 4 hours cleaning up adhesions from my bowel. He described it as being hard as a rock, so it had to be done.
That, of course, means he opened me up again. I have 56 staples down the midline and he left the stoma site open to be packed daily.
I'm up, walking around, and using the pain pump rarely. No bowel sounds or movement yet, despite daily enemas.
Anyway, time for respiratory therapy.
Darla, Colm, thanks for being here.
Harley, I'll do my best to answer your questions when I can. In the meantime, as they have told you, this place doesn't lack support.
Best wishes to all!

Words of Encouragement from Ostomy Advocates I Hollister

Hello there, dear friend!

Sounds like you are on the mend! I'm sorry they couldn't use "le scope"; but it sounds like you really needed those adhesions attended to.....a four-hour "ounce of prevention" now is definitely worth several other possible not-so-great outcomes later or, as the saying completes, "is worth pounds of cure!"
Did you ever verify what type of stoma you had....loop or end?
We're all so delighted that you made it through all this stuff in a good place. As someone told me a couple of weeks ago...."It's your attitude that is making everything go so smoothly" or something to this effect!
Any idea when you might be able to spring those lovely accommodations for the comforts of home?
I did a "brave" thing the other day. Bought great tickets to see "Jersey Boys" coming to Dallas at the end of June. Hedged a bet that I could sit through a show; plus the travel to and fro, parking, etc. etc. without 16 trips a day to the loo! I've wanted to see this masterpiece ever since it first played several years ago. Couldn't afford an NY adventure....so glad it's coming out my way in a few months!
My thoughts and prayers continue. Rest. Recover. Revel in the knowledge that you are wonderfully blessed and highly favored!

You. Rock.!!!!

Darla

Wow, Dave, sounds like you are doing great!

What a great record for ostomates anticipating a reversal! Knowledge is the best antidote to fear. Thank you for sharing your journey, and let's hope you pass some gas real soon so you can start eating solids instead of sucking on chipped ice.

Well Dave, I'm delighted for you. Like your good self and only a short week ago, I sat there at times wondering if my bowel was ever going to move again. I even sat up one night (Day 2) on the edge of my bed with sporadic hiccups and wondered if it was all worthwhile and let me tell you now that it certainly was. If you can relax at all a little and forget about it, those movements will come again. In fact, it was Day 6 for me, not a half hour after returning home with my sister did things begin to happen. I was actually far from sure that I should've been coming home, but my surgeon was more than happy to see me home.

And like you, I also had a lot of adhesions to remove............I really hadn't realized how nasty they can be. And yes, that respiratory therapy is a pain, but when you're up and walking about more, you'll certainly appreciate it. I know sometimes I just wanted to tell my therapist to go take a hike! So, tomorrow I'll be able to tell you how many staples I had as my sister-in-law, an actual stoma nurse, will be calling in to take them out. Yet another small milestone in the journey!
So, keep up those positive thoughts and we'll continue to have you in our prayers.
God bless and take good care, Colm

PS. PrimeBoy, I loved your recovery wish for me "may the wind always be at your back". Oh, how I laughed the first time it happened again for me in over a year. It still brings a smile to my face every time I pass wind!

Well, fellas, I know it is unladylike for us gals to pass wind; but I must say I've been guilty of it again the past couple of weeks since my reversal!
Guess I am gonna have to start brushing up on the "deflecting" game.....
Me: letting one "slip"; eyes immediately divert to the first person beside me...
First line of defense: SMILE!
If odor persists: look down at floor, begin to whistle a favorite showtune!
When all else fails: eyes back to person beside me, followed by a robust "EXCUSE YOU!"

It's a beautiful Texas Saturday here today! Dave, hope this is a great "turning point" day in your hospital stay.....perhaps an ETA date for going home, or some semi-edible cuisine?!?
Have a super duper day, my friends!

"Deflectin'" Darla

Darla,
I am feeling a bit down over my bad past few days...
Oh, I just can't wait to have a reversal!
I want to look down at my abdomen and see no bag. I want to massage, stretch...

Someone wrote here also counting days for reversal. I totally understand. I am the same way. Counting, counting, hoping, thinking... I can't seem to totally concentrate on other things... I feel like my life is partially on hold...

Happy-

(((Hugs))) to you.    We all know how it feels to wait, and to wait some more, and to feel like your life is "off track" and to wonder if we'll ever know what "normal" is again.    And the answer is that we won't feel that familiar, normal that we once did before our ostomy....but we WILL be able to create a "new normal"; based on where we are now, and where we have the potential to BE in the future.    I remember when I was having lupus trouble a few weeks ago and had to postpone my reversal; you told me "Just think about this in the span of an 80 year life.....one day you will look down and remember dealing with the bag and think, oh yes, that!"    Those words really helped me to realize that I DID need to look at things over the span of many years; and put the postponement in perspective as a minor inconvenience rather than a major, life altering thing.    So now I am telling you that eventually things WILL work for you to get your reversal, too.....you need to be healthy enough, though, to be able to endure another major surgery and then recover to BE your "new", no-bag self!    
We're all here for you and will all be here, cheering you on, as you build up your strength and health and make that reversal date a reality!  In the meantime, get out there and live your life to the best of your ability!    You are an awesome woman and a blessing to us here in our little "corner cafe!"    Things WILL work out!

Darla

HappyH9, I know exactly how you feel. I am in the same boat with my son, waiting, waiting, fretting. I am seeing the surgeon again this Tuesday to see if we can get a reversal date.
Darla, what a wonderful outlook. In the grand scheme of things, it is a "blip in the road" I guess, although the here and now makes it seem unbearable.
You are an inspiration to me and a lot of others, and I am so grateful I have found this website to give me the strength I need. Dianne

Dianne-

Were you able to see your surgeon on Tuesday about a reversal date for your son?   

Here's hoping that Dave is now home from the hospital and doing well!

Praying that this week is bringing good news for all!

Darla

Hello everyone!
This is my third attempt at posting today. Either my laptop or the website isn't playing along. I even tried typing my post out in MS Word then pasting it here. Apparently you can't do that, either.
Anyway, I am home!!
As promised, I will post my notes about my takedown/reversal of my ileostomy. One of the things that drew me to this website in the first place was my own personal search for what to expect when having my procedure done. Finding this site and some of the people here has been a godsend and the support has been better than what I have found beyond my computer screen.
What better than finding a group that talks your talk and walks your walk?

I even had an impromptu lesson with the nurses in Critical Care on some basic ostomy tips. What does it say when the healers take written notes from the patients? To me, it says they are taught basics but there is no way, like most subjects, to cover or know it all. They have much more to learn and worry about. I also believe it means that they care. For 15 minutes this week, I like to think I spoke for all of us here.

I waited to post until I got home, had access to my laptop, and a good internet connection. No way was I doing all this on an iPhone from a hospital bed.

As I type this, I have been home for just over 4 hours, and I am still in shock about that. Months ago I wondered if today would ever come, now here it is and it hasn't sunk in yet.

To make it easier to remember things, I kept a bedside journal of daily events. I will transcribe those notes here.

Before reading any of my posts that will follow, please note the following: Like most folks here, I am not a doctor, nurse, or medical professional of any kind. I write to relate my experience to you. If you do ask me questions, I can only answer based on my own experiences. Outside of that, your questions should be directed towards your surgeon or family physician. As well, my outcome so far is my own. I cannot and do not speak as to what will happen to you.

*There are risks and complications with any procedure.

*Trained driver on a closed course.

*Your mileage may vary.

Sincerely,

Dave

Hey, friend!

So good to see you back in the land o' "os"; you "bagless" man, now! Happy x 2 to know that you are home, and are doing well.
I will eagerly await your commentaries on your personal experiences!

Welcome back.
Welcome home.
Welcome.

All smiles
Darla

As I have said, to make it easier to remember each day's events, I kept a bedside journal of everything that happened. I will begin to transcribe those notes here. To ease confusion of what I think is relevant to this forum and what are just personal observations and highly subjective, I will write like this:

Things written in this format are about procedures and progress.

Things written in this format are personal experience notes and should not necessarily be expected as a part of your progress.

Surgery Day:
Arrived on time at 0945 hours and registered at the main desk. Headed upstairs to inpatient waiting area until my name was called just after 1000 hrs. I was taken to a small room where my personal belongings were removed, bagged and placed with my suitcase. I laid in small hospital gown on a gurney as my information was verified and vitals were taken. I drifted off to sleep to be awoken by the movement of my gurney. A small woman spoke to me in broken English to tell me we were on the way to the operating room and that everything, she assured me, would be just fine.

It was now 1145 hrs, a full 30 mins later than my designated time. I joked with the surgical team as they prepped. This gave me time to ask my surgeon the burning questions.

"Do I or do I not have a loop ileostomy and can you use the scope today?"

"Yes, and no." He replied. He went on to explain that the stoma site itself was set up as a "loop" site for easy takedown later, but when he got a look at the other damage nine months ago, it was decided to sever the connection to the bowel as an "end" procedure to protect the fragile stoma site. In other words, he had to open my abdomen to find the end of my colon. No choice.
Shit.

I was put to sleep without fanfare or even a countdown to amuse me. The time, of course, flew by and in what seemed mere seconds, I awoke to my sister's voice telling me that everything went fine, and that she would be there for me when I woke up. I closed my eyes and drifted off.

I did wake again several hours later, to the sound of my surgeon's voice this time. I felt surprisingly awake and aware. He said he had some things to discuss with me, but nothing that had to be done tonight. He had merely stopped by to reassure me everything had gone "well" and to check on me.

I drifted back to sleep.

I came through with the following:
1 Reversed ileostomy
1 Foley catheter (urine collection)
2 Inflating/deflating boots on my lower legs (prevent blood clots)
2 IV lines in my left arm
1 Pain pump installed in my right thigh. It delivered a constant slow dose of morphine and came with a button that I could hit for an extra dose once every 15 minutes max. It also had an audible tone, so if I hit it too much, the nurses gave me a lecture..lol
1 NG tube up my nose and down into my stomach to evacuate any stomach fluids as they built up until my "sleeping" lower digestive system could properly process them. Otherwise, I would vomit.
1 Midline incision from my belt line to way above my belly button. 56 Staples total.
1 3" long open incision, packed with gauze where the stoma used to be.
Good breath sounds and vitals.
No bowel sounds, no cramps.

End of surgery day.

P.S.
Hi Darla! And thank you!
I did write a "goodbye" on my bag, but no one commented. I was a little disappointed.
I will admit the first morning I woke, the first thing I did was reach down to check for a "football"!
Dave

Surgery Day + 1

Was woken early by the nursing staff. If they do nothing, it's get your ass out of bed fast.
That seems to be key, as soon as is safe, move, move, move. The longer you lay there, the harder it gets. It also helps the old digestive system to kick-start itself.

My surgeon visited early to explain what he had done.
He removed another 6" approximately of my small intestine just to get a clean piece to work with. The end had been my stoma for the last nine months. He then went on to explain that he spent half of his time in the operating room basically unsticking my colon. It seems that in the nine months since I used it last, it had become a mass of adhesions. He spent hours running over it and cleaning things up as much as he felt safe and possible. In the end, I lost a little more of it, leaving me with approximately 50% of my colon. He told me this was the critical part, the lower end, designed for most of the work and storage, and that I could fully expect my bowel movements to return to pre-surgery conditions. A bit of a relief.

He also told me that he had repaired three small hernias from last time and that since this was the second time in, I would be at an even greater risk now. No lifting anything heavier than the TV remote for 6-8 weeks.

He did not use any sort of mesh to help prevent hernias in the future or to close my stoma hole as planned. He felt that with the work he did on my colon and the damage he saw, there was a chance of leakage after the takedown and trying to get past a mesh repair at the point may have ended badly. He assured me the open site I had has been performed thousands of times without issue, the other way would just have healed faster. Pick your battles.

He also ordered a daily enema until I moved something. My procedure nine months ago was an emergency, and there had been no time for a proper cleanse prior. He wanted help in clearing that out as he encountered it during my takedown.

Walking, walking, walking. As soon as he left, the nursing staff made me walk around the halls. I walked three times that day, each for about 15 minutes. Keep moving.

Respiratory therapy was in, and I was given a spirometer and deep breathing exercises. As much as it hurts, these are required to get you breathing deeply again. It was explained to me that your breathing shallows during surgery, and these exercises help you breathe deeply again and to clear mucus from your lower lungs. The risk is pneumonia, otherwise.

Final result 8-9 hrs of surgery yesterday.
Pain is about a 1-3 all day. Very manageable, but still feels like you did about 1000 crunches.
Stoma wound was opened and repacked.
Midline incision dressing changed.
Foley catheter still in.
Inflatable boots still used when sleeping.
2 IV lines still in.
Pain pump still in.
NG tube still in.
Good breath sounds and vitals.
No bowel sounds and no cramps.

End of Surgery Day +1

Your transcribed notes are so interesting, Dave — thanks for sharing them with all of us, including me, another David in Canada.

Your transcribed notes are so interesting, Dave — thanks for sharing them with all of us, including me, another David in Canada.        

Thanks, Dave.
I know I can get wordy at times, but to me, I am always afraid of leaving too many holes in the story, since my head knows how to fill in the blanks. I do my best to put myself in the reader's shoes.
I have more to write, as so far I have only covered about 24 hours of the experience, but I think I may stop for tonight.
Thanks again for the kind words.

Best of luck to you.

Dave.

Dave, what wonderful news you're home! You'll do much better now I know. Reading your notes reminds me very much of my own first few days after surgery. I should have taken the time to do the same but wasn't really up for it. But thanks for sharing as I believe it will help those in preparation for reversal so much and hopefully take away some of the fear and anxiety during the lead up! So, well done once again for sharing and may your recovery be speedy! God bless and take good care, Colm

Thanks. Colm.
There is lots more to come when I get some time this weekend. Today is filled with home care nurse visits and some settling in. I have some close friends that have graciously allowed me to stay with them in a spare room for a week or so. My place has two floors and is a little harder to navigate for me right now. The truth is, no one really expected me to be home so soon. I didn't sleep all that well last night, but I feel surprisingly good today. I am sure I will need a nap this afternoon!

Hope you are doing well on your end.

Take care.

Dave

Good morning, Dave!

Thanks for all you have shared, to date.

One day at a time.

Keep the home care nurses laughing... they can be of great value to you at times!

I had a home care nurse for a 3-year stint back a few years ago; she would come and monitor my IVIG infusions that I was taking for a severe lupus flare. She was with me 8 hours a day, 3 times per week for 3 years. We ended up becoming close friends... she is one of those rare angels walking around this earth masked as people.

The next couple of weeks will be filled with physical and emotional highs and lows... getting used to your new plumbing and all that goes with it... your mind and emotions playing "catch up" with everything that is happening from a physical standpoint.

Your body will let you know what it needs; and sometimes your mind will want to argue with your body, and it is during those times that stillness will be your greatest ally. Be still and listen; and your answers will come.

It's a beautiful Texas Friday here today... temps near 80... I am going to get out and enjoy this day and do a little spring clothes shopping!

Take good care of yourself; and let others close to you take care of you, too!

Blessings!
Darla

Good to hear you're okay, Dave! And thanks for posting your notes, I'm reading them with intense interest. I saw the surgeon Wednesday and had a chat. They did the emergency surgery because they were on call that night. But they don't take my insurance. So I've been freaking out about who was going to do my reversal. Well, he said he'll work with my insurance, and I needed a colonoscopy before he would schedule the surgery. So my colonoscopy is scheduled for March 20. Now I'm wondering if they'll wait to schedule until after my colonoscopy, and how far out from there, or if they'll schedule now and hope for the best on the colonoscopy. April 20 will be 3 calendar months (13 weeks) since my surgery. I'm anxious, but I don't want anything to go wrong by being too soon either. Now the waiting and anxiety.
Thanks again for sharing your experience, it's of great value to us all.
Ken

Darla,
Thank you for your note. I try to be strong for my daughters, 6 and 9 years old, but sometimes I need someone to lean on. Your words mean a lot to me, such an encouragement indeed. I told only one friend (not so much in detail) about my situation, so I really don't have someone to discuss it openly. It's depressing...

You remembered what I wrote you before! I should tell that to myself. I went for a 1-hour-long walk and felt better. I woke up this morning and said to myself, "I choose happiness today." There are so many things I am grateful for in my life, embrace that first before anything else.

Darla, I really, really appreciate your kindness. It makes me cry... Thank you.

Dave,
I have been following you. Remember me? Fellow Ontarian waiting for a reversal. Your journal helps me prepare for my reversal and is very informative. Wishing you a fast recovery.

Happy, always!

Happy, you said you've only let one friend know. I'm the opposite, I'm much too open about myself. I am now a recluse because I can't face anyone. Just because someone knows, doesn't mean they understand. I get cracks like "save up those Walmart bags", and that was from my sister. Other jokes like the "kiss my ass" joke. I have no sense of humor about this. I wish I had not told anyone. Now I'm just waiting for my turn to get on the table. This has been an ugly interruption in my boring life, and I'm not happy about it.
I look forward to Dave's posts, hope you're doing well Dave.

Dave:
Glad to see you are on your way. Wishing you the very best and looking forward to your informative notes to come as they are a wonderful teaching tool for us. Dianne

Hi Dave. Thanks so much for sharing your first couple days post-op from your journal. I could relate to almost all of it. Looking forward to the rest of your journal as you are able to post. So glad you seem to be recovering well. It is certainly an ordeal and one that I don't think I was totally prepared for. I thought it would be easier than the colostomy surgery, but so far that has not proven the case. Maybe it's my "advanced" age (61) or the fact that my body has gone through a lot in the past 6 months. (I also had rotator cuff surgery in July before all this started).
Hang in there!

Happy-

I do so understand you wanting to be strong for your daughters....I only have one daughter, she is age 27 now, but I still find myself wanting to shield her from the "bad stuff"; even now that she is grown and going to have a baby of her own in July! nbsp; nbsp;One thing that I have learned over the years......kids can be so forgiving and loving and strong in their own ways; and it seems that the more "human" we are with them; the more they are strong for us....the more forgiving.....understanding....loving. nbsp; nbsp; nbsp; nbsp;Be strong for them, but don't be afraid to show your "humanness", too! nbsp; nbsp;They will love you even more for it; and as they grow and mature into strong, independent young women their respect for you will be a priceless reflection of the awesome mother that you are to them!
And, when the times come when you need somewhere to go....to vent.....someone(s) to lean on.....an understanding corner of the world......here we are! nbsp; nbsp;A place for you to rest, and be who you are, whether you're having a good day or a bad day....feeling weak, or feeling strong. nbsp; nbsp;A place for acceptance and support. nbsp; nbsp;I think it's especially hard for us to share a lot about our ostomies with those who haven't been through the experience....partly out of not knowing exactly what to tell or how to tell it.....partly out of fear of rejection due to a general lack of knowledge about what an ostomy is or having some sort of stigma attached to having "the bag".....
My family knew about mine, and a couple of real friends, but I didn't really advertise it for some of those very reasons......I am thankful, though, that I have a very supportive family and an incredible husband who has embraced me as a "bagger" and, now, "a bag-less, too!" nbsp; nbsp;I think that I had more of a problem with it, at times, than they did. nbsp; nbsp;Sometimes we just think too much!

Thank you so much for being here with us, and for us! nbsp; nbsp;You and your wonderful daughters are in my thoughts and prayers!

Darla