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Ileostomy reversal (hopefully) in 5 weeks  

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mmz
 mmz
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I'm starting this topic in hopes of learning from other's experience with ostomy reversal, and hopefully having something useful from my experiences to share with others. I've read some of the past VO reversal threads and they've really helped me to look at the pros/cons of this procedure and helped me think of questions for the Doctors.

History:

Surgery 11/17/20 for removal of 4cm colorectal tumor at junction of rectum and large intestine, involving removal of 3" rectal/colon and resection of same. No need for chemo/radiation - good margins on tumor removal - 25 surrounding lymph nodes tested clean (Yay!). Surgery was done laparoscopically via robotics, so the largest incision was the one to retrieve the tumor. 

11/25 - medivacked back to hospital in shock/sepsis to flush out abdominal cavity and re-suture 1/3 of anastomosis. Ileostomy created. 1 week in ICU. Incision from tumor removal conveniently in the right spot for the stoma.

12/2; Embolization of a branch of an artery via angioplasty to stop blood leakage (caused by abscess in abdominal cavity?). Moved to regular hospital room.

12/5 - more flushing of abdominal cavity abscess & re-suture of 1/4 of original anastomosis. Drainage tube installed where abscess ate hole into vaginal wall. Released from hospital 12/10/20. Vaginal hole finally closed up and stopped draining fluid around 12/30.

I'm a 63 year old female. Went into this healthy and strong (thankfully) and getting that strength back day by day. I'm back to working pretty much full time, easy jogging, light gym workouts.

Reversal plan:

1/18/21; Fluoroscopic Colon exam (dye test/xray) to assess healing of anastomosis.

Plan A; If it looks well healed, surgery for reversal will be March 4th. Prior to removing Ileostomy, they'll scope the anastomosis to visually confirm it's health. 

Plan B; if dye/xray test on the 18th doesn't look as good as expected, we'll give it 6 more weeks to heal and then retest and set new surgery date if it looks good then.

Plan C; Don't want to put energy into thinking about this now, but I do have a pretty clear idea of what the options will be if reversal doesn't work out. 

I'm visualizing a very successful plan A and doing all I can on my part to be ready; eating really healthy, getting plenty of exercise, trying to put some weight back on (lost 20 lbs in surgeries and was pretty slender to start with), doing pelvic floor/anal muscle strengthening drills.

My surgeon has been with me about expectations and potential complications so I feel like my eyes are wide open. He's been super attentive, communicates well, is very experienced and well respected at the hospital.

The expectations (barring complications): 3 days (+/-) in hospital. 2 weeks out of work (resting between lots of bathroom runs I think). Ease back into work. 6 months to a year to find my new 'normal'. Large intestine needs to kick back into action and build back up healthy flora. Portion of large intestine that replaced top 2" of rectal tubing will stretch with time, but won't have the full elasticity of a rectum, therefore diminished holding capacity. Will need to adjust to what that means for my eating habits.

I'm stoked to have a shot at reversing the Ileostomy and am hoping all goes well. 

Thanks for any insights and suggestions you may have to share, and I'm happy to try to answer any questions about the process with my limited knowledge!

me & my little volcano 🌋


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zhtfreak
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Hi @mmz,

 

I have also had an ileostomy reversal that ended up being successful, but there's still so much that I don't know. It seems to me that success/failure of these procedures can vary a lot depending on the individual person and when and why they needed an ostomy.

 

I needed mine because of complications from being very premature, although no one else I know who was just as preterm as me also needed an ostomy. From what little I can gather of my records that I've had explained to me in the last year or two, it sounds like they weren't certain I would ever be able to be rehooked, but they were able to do it just after I turned 13  in mid 1995. I'm still not entirely sure what they actually did though. From what I've read here, it sounds like most people who have the possibility of a reversal are given a j-pouch, but it sounds like they didn't do that for me. So yeah, I would like to get more educated on my own situation, but the pandemic is still in the way of that.

 

since I was a young teen when I had my reversal, the docs were ovbiously not explaining anything to me, so all I had to go on was my parents trying to assure me that it was going to work, when there was obviously so much they didn't know themselves. Looking back now as a middle-aged adult, had I known what I do now, I would've asked a lot of questions when the possibility of reconstruction first came up:

 

How long did they expect that it would take for me to have full control of my bowel? It sounds like this can vary from person to person, and I think the time would be shorter if you had had normal use of your bowels before having the ostomy (i did not). So I was basically like a 13-year-old being potty trained. It took me close to a year before I got things to a somewhat normal manageable level, and I still have some problems from time to time.

 

How often would I have to go throughout the day? In recently trying to learn more about myself, I found that I have to go between 4-7 times in a single 24-hour period, but that's only eating once or twice a day. If I actually get three good meals in a day, that goes up to 5-8 times. This is most stressful at night, since I will usually need to get up once or sometimes twice during the night to go, and it doesn't always happen at the same time, so I can't set an alarm to wake me up. It's when I get into a deeper sleep that I have problems. I would think the number of times I need to go in a single day lines up with the number of times most people need to empty their ostomy pouch. Mine was never that much; by the end my pouch was only emptied 2-3 times a day, but that was also because I couldn't do it myself, so had to wait for someone else to do it for me, which sometimes came with its own set of anxiety issues. I may have emptied more often if I had been taught to do it myself.

 

The last thing I would have asked is: Is there a possibility that this doesn't work out? If they would have answered yes, I don't know if I would have gone through with it. I remember my parents getting quite frustrated that I wasn't progressing as fast as they had hoped. Looking at it now, it kind of makes sense; no one wants to see their child suffer like that, and face the possibility of putting them through another operation just to end up back where they started. During those first few months post op, I was yelled at and shamed quite a bit, so when they brought up to me that they were going to schedule me to have a stoma made permanent, I remember feeling like I had failed as a person and I hated the thought of going through another procedure that was difficult to deal with and the anxiety that would come with it. I might have done it though, if the Internet had been around then and I could have learned from a place like this that other people may have been in the same boat.

 

All that said, over all I am glad I did it. I am no longer dependent on supplies which I've heard can get quite expensive. The most annoying thing I deal with now that came along with my reversal is that I have an extremely noisy stomach and I have yet to figure out what causes it and if there is anything I can do to mitigate it. It's extremely embarrassing when people comment on it and sometimes even offer me food. It reminds me of the way I would feel when my pouch would balloon and people would ask what it was. It kind of puts me in a similar situation as the people here who have been dealing with pouches that are more noisy of late.

 

Sometimes I wonder if I would've ended up close to the same if I had been taught to take care of my ileostomy on my own. I think I probably would have, but I think the trade off ended up a little bit better having the reversal.

Brian


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Tigerlily
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MMZ, I hope things go well for your reversal, and it sounds like you have put a lot of thought into your recovery plan, and asked your doctor a lot of questions, but I wonder if allowing only 2 weeks before going back to work might be optimistic. Has your doctor discussed Lower Anterior Resection Syndrome (LARS) with you? I have only known 2 people who have had reversals, and they both had LARS issues. Maybe your doctor doesn’t think it will be a factor for you; let’s hope so, but it might be worth asking about. The two people I am referring to ultimately had successful reversals, but getting there took longer than they thought it would.  Good luck - please let us know how you’re doing after your surgery.

 

Laurie

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mmz
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@zhtfreak . Hi Brian. Thank you for sharing what has surely been a lifetime of experiences for you. I find it fascinating that you were able to have a reversal after being disconnected from birth to 13 years old. The human body is amazing, as are the researchers and practitioners that come up with how to treat them.

Every time I read or watch videos of kids and teenagers coping with the challenges of the various ostomies, I am both impressed and humbled. Those years can be painful enough under "normal" circumstances. What I'm going through is a drop in the bucket compared to your experiences. I'm not sure I could have been so brave, especially as a youngster. It sounds like you had way more than your share of challenges and the sorts of unkindness that usually comes from people not understanding and being afraid of what someone else is going through. 

I've read a few others of your posts and hope that you are finding your way with discovering meaningful work and navigating the world as you learn more about where you are headed. I also hope you are able, with help when needed, to shed some of the pain from past challenges. 

Are you still working on a book about your experiences? I see you have a lot to offer, and sharing your experiences so openly is a huge help to us who follow in your footsteps.

Thank you for writing and please take good care of yourself.

mmz

me & my little volcano 🌋


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mmz
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@tigerlily Hi Laurie,

Good ideas you bring to the table!

The two weeks off work plan is only realistic because my doc knows we're self employed, with my office at home where I can nap as needed, and more importantly, dash to the bathroom often without worrying about other people. I imagine I'll be slipping into the office for short bits as soon as I get home, and then it will be a gradual increase. I should have clarified that. 

The 'new normal' I find at 6 month to a year should have emphasis on the "NEW", as it will be different from my 'old' normal. There may be moments of wondering if I should have stuck it out with my little volcano. Given the pros and cons for me personally, I think its worth the risks of giving it a shot. Its a good reminder not to set myself up for disappointments by hearing of other's real work experiences with reversals.

LARS is on my radar as something I may have to confront, but we (me, my husband, and my doctor) have weighed the circumstances and are optimistic that I won't go that route. But, as my doc says, 'we never say never in medicine.'

I'll check in after I get the gastrographic test mid February, which determines if I'm on for March 4 surgery or back in holding pattern for 6 more weeks.  

I've been reading some of your other posts and appreciate all that you contribute to the forums. Thanks for sharing your thoughts and for your well wishes. 

m

me & my little volcano 🌋


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Tigerlily
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OK, that makes sense. Having access to the washroom will make it workable for you. I agree with you about going ahead with the surgery. If I had the opportunity, I would too. Best of luck to you. 

Laurie

Just a semicolon


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mmz
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Count down time! 

I go for my Fluoroscopic Exam (Gastrographic Enema w/x-rays) this Thursday to inspect how my colorectal resection is healing. After the multiple blowouts end of 2020, we want to be sure there are no further leaks, scar tissue blockage, or anything else that would deter or delay my planned Ileostomy reversal. Super excited and super nervous regarding the test, the surgery, and the recovery from resection. 

I've read up on the Fluoroscopic test, and found all kinds of conflicting info, so I called and was able to talk to the x-ray tech who'll be doing the procedure. He was able to walk me through what to expect, which put my mind more at ease. Since it is kind of a pressure test, I was concerned about it blowing out the resection if it wasn't yet healed, but he assured me they are monitoring from the start of injecting fluid, and will pull the plug (literally?) if things aren't perfect. He sounded very nice and wanted to know more about why I was having the test, so I think I'm in good, attentive hands. Anyone have any experience with that kind of test?

Fingers and toes crossed that the test shows I'm all healed up and good to go for the reversal as scheduled on March 4th. Plan B is to give it another 6 weeks to heal and then retest, but I'm still keeping my sights on March 4. 

I appreciate all the posts from people who've had experience with resection or contemplated resection. The knowledge and support is a huge help - thanks!

me & my little volcano 🌋


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mmz
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I got the green light for reversal surgery on March 4th. No leaks showed up in the fluoroscopic exam and scarring looked as to be expected after resection and 2 subsequent emergency surgeries for for sepsis and re-stitching. Fully warned of the possible complications, LARS, lengthy adjustment time.  It should be 2-4 days in hospital, possibly erring on the longer side since going home requires a 30 minute flight plus aprox. 30 min drive time on both ends of flight. Then a couple weeks married to the bathroom and 6 months to a year+ to find my new normal. 

While I'm quite nervous, I fully believe its worth going for it and have done all I can to be physically and mentally ready.

I can't say it often enough - how much I appreciate VO what a huge difference this site has made in handling the surprise emergency Ileostomy and the day to day management of it. I've have been and will continue to tell all the doctors and nurses I know about this site. 

me & my little volcano 🌋


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Tigerlily
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@mmz That’s great news, MMZ! I am super excited for you! You have been fastidious about planning for this, so that will pay off for you. We will all be thinking of you on the 4th, and wishing you all the best. Please keep us in the loop. Take good care.

 

Laurie

Just a semicolon


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mmz
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@tigerlily

@tigerlily

Thank you Laurie! All the supportive energy both from old friends and new encounters such as yourself are a tremendous boost to my courage and I know will make a difference in the outcome. I'll definitely post progress when I come out the other side.

btw - every time I see your signature, I love the play on words, but also think, "She is not JUST a semicolon - she is so much more than that - maybe a Super-Semicolon, and a kind and insightful one at that."

Thanks again.

Marian

me & my little volcano 🌋


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LK
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@mmz...this is so exciting for you! We will all be waiting on the edge of our seats to hear how things go for you!  It's wonderful you have a good supportive hubby and can work from home.  That alone will make things easier for you all around.  I think you have yourself a good plan and outlook on this whole reversal surgery!   I'm sure just your thoughts alone for a good recovery are 80% of the battle. 

Sure you may have challenges but then the outcome is worth it all around.  Considering  Brians, aka @zhtfreaks long time with an ostomy to having to train body parts he never had to use before presented a gigantic challenge on top of being blind!  The courage that took from a 13 year old is astronomical!!!   Brian,  you more then deserve the success you have in this endeavor! Hey, just incase nobody around you ever said it  to you before, I am very proud of you and how you overcame such monstrous challenges!!  You are very COURAGEOUS!! 

Marian,  you are courageous also!  You're so well prepared for the possible outcomes, I truly can not see it failing for you.  Yes, stay in touch regardless of the outcome & document your questions to ask and your journey well.  There will be others who need your experiences here and like Brian,   your openness to share them will be vital.  

All the best in every aspect of your journey including travel! You've got this!!! 

Linda

Linda


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mmz
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7-day countdown. I have phone appt scheduled w/anesthesiologist this afternoon & Covid test next Tuesday.

ps - @dlkfiretruck

Just saw your post here after reading/replying to your b'day post, so I see you found this thread as well. Thinking about people like Brian ( @zhtfreak ) and all the harder roads so many of you have traveled definitely gives me strength and reminds me I've had in pretty easy by comparison.

me & my little volcano 🌋


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SqueakyandLiza
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@mmz

How exciting that you reversal surgery is so soon!!  I’m happy for you, and a little jealous. That was the biggest blow for me, learning I could not be reversed. 

I have Kaiser too, and for all the problems they have and hoops you have to jump through, they have paid a bunch of money on my behalf and so my hubby and I decided no more complaining. 😂 Our plan is through his job and we have met our out of pocket maximum for 2018-2020. It is a bummer to have that much medical expense, but nice to know that once you meet your max, that is it for the year. 

I will be thinking about you on the 4th. As soon as you feel up for it, let us know how it went and how you feel. All the best to you! 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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Tigerlily
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@mmz. As you are being wheeled into surgery, take comfort in knowing that healing vibes are being sent through the atmosphere to you from points all over the globe. All your buddies here at VO are wishing the very best for you. Play the theme from Rocky in the OR! 🥊 

Laurie

Just a semicolon


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mmz
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@squeakyandliza 

I can only imagine having to face learning reversal isn't possible after you had thought it was going to be possible. That had to have been so rough! I know its not a given for me yet and am glad the Doctor has been up front with me about the risks.

Thanks for the support, and hope your day IS bright!

me & my little volcano 🌋


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mmz
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@tigerlily Laurie - What awesome encouragement!

Thank you!

Marian

me & my little volcano 🌋


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john68
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Hi MMz, The very best going forward. I would just like to say it’s not an ostomy that’s the enemy. It’s the ostomy that gives us the chance to kick illness to the kerb. Always remember that little red guy delivered you! 

The reason I raise this is that a new ostomate reading this and adjusting may take the post as negative especially someone with a bag for life. As well as celebrating a full recovery we need to assure that a stoma for life can mean being active and enjoying live to the fullest. 

Apologies if I have offended it’s not my intention.🙏😀👍

ileostomy 31st August 1994 for Crohns


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LLNorth
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@john68 I feel the same way, very thankful. Without the ostomy I would almost certainly not be alive today. I knew I would be getting one, so it was not a surprise; still, it was such a strange thing to see. But it gave me hope - I just hung on and didn’t let go of that hope.

A rather funny thing: when I first opened a box of pouches, once I got home, I thought to myself that the box is very much like the boxes that nice gift lingerie used to come in when I was a young woman. I think of that every time I open a new box, also that the texture of the pouch covering, when new, is like that of set of nice gift lingerie I once had, that came in a box that size and shape. Go ahead and laugh if you like!

Colostomy 4/30/18. I love the smell of coffee in the morning. It smells like .... victory.


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Tigerlily
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@john68

John, of course, you are correct. But I think it isn’t always black and white. Am I thankful for the ostomy giving me function after cancer? Yes, every day. Do I wish I didn’t have an ostomy? Yes, every day. Obviously, everyone on this site is a testament to the fact that one can live well with an ostomy, but it’s OK to acknowledge that there are often mixed feelings that come with it. To pretend that there aren’t can make new ostomates, who are already vulnerable, feel that they have to move to acceptance before they have grieved, and that would be a disservice. Yes, an ostomy is a wonderful medical breakthrough. So is a reversal. There is no right or wrong with the deeply personal feelings that come with either one.

 

Laurie

Just a semicolon


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john68
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Hi tiger lily, I can’t argue with that as what you say is perfectly true.

Hi LL, believe it or not I totally know what you mean! Like most guys I have braved the lingerie department for a gift, The shop assistants seem to have a system. Let the guy wander around for long enough to make him really uncomfortable! Next step ask all the questions he won’t know! Lastly wrap and place in a bag with the department store name which will let everyone he meets on the way back to the car know exactly what he’s bought 😂

ileostomy 31st August 1994 for Crohns


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