14 Month Post Reversal Update

Wow. I haven’t been here in a while and I had this feeling wash over me like when after you see a friend you really love for the first time in ten years and it’s just like you saw them yesterday and no time has passed.

so, I’m 14 months out and I just wanted to drop in with some updates so those out here considering can get some first hand experience context.

quick background I had a mass detected in a colonoscopy, ended up with the leak from that surgery, it was caught in tube but close to sepsis, so they gave me a colonoscopy. Reversal 6 months after that - so three major surgeries in less than 7 months. 

back to 14 months later! 

First off, all that skinny girl weight I lost came back. Was looking so good in those small jeans too! I guess that makes sense thinking back to when I would eat 5 chunks of watermelon in a day. 

one really weird and also great thing that happened is that I’m now almost 19 months sober. I def loved my makers on the rocks and 90 shilling but after my first surgery I just lost the craving for booze and I haven’t gone back. Best side effect of this process ever!

Poop update: shit is literally happening everyday, but the consistency is erratic. Very rarely is it close to “normal”. although The fact it’s happening each day is a major change for me as for years before my resection I pooped maybe twice a week. Weird, right?
According to my surgeon I have a “lazy colon”. 

my energy is almost back to normal although I think I look really tired. You know it’s true when a co-worker asks you if you are feeling ok when you do feel okay on the inside. So I might need to upgrade that to a do look pretty worn out.  I don’t know for sure though because I rarely look in the mirror because I am always the cutest in my own mind and I’m ok with that! 

I did go through a stage where my hair was falling out due to all of the anesthesia I went under and it’s been a couple months now since that’s happened. That was one of the things that gave me some anxiety because it felt like a symptom of getting worse.  I found spine niacin shampo and ate skin had and nails gummies.

I am traveling this summer for the first time in two years and I’m so exciting - Portugal and the Netherlands! Yeah! I finally feel relatively confident that I can navigate 9 hours on a plane. I’m still gonna have to put thought into my travel plan for the comfort items I need for emergencies - like the colon spasm med I needed after reversal and individual packed wipes infused with prep H. If you’ve read my other posts you’ll get in a real creature comfort person so I will make sure to have everything to make me feel better.

right now I’m struggling with my poop it’s either somewhat runny, totally tiny or I don’t poop for two days. Went to a new doc, not my surgeon. In hopes they could guide me with better diet and instead he just wants it cut me open because my Solon has a structure/ scar tissue post reversal. I’m pretty pissed they go straight to the cutting before even talking to me about diet changes to see if being more hydrated or taking miralax could help me get more regular. Gonna try really hard at that and exercising regularly for a month and see how I feel. 

that’s all for now! Gotta go to bed.

Yeah....where the hell have you been ...

Good to hear from you cutest .. 🤣

Wishing you all the best.

Thank you for your update.  I have a colostomy due to hernia repair mesh puncturing my colon.  I'm now at 1 year post op.  I've really struggled with my decision to not undergo reversal.  It's another major surgery, and I was worried about complications.  

Like you, before my colostomy, I used to poop around 2 times a week.  My output now follows the same pattern.  Which is convenient because I don't have to drain my bag all the time.  

It seems getting back to "normal" via reversal, for many of us Ostomymates, is probably not entirely possible.

Hopefully you can discover a non surgical treatment to alleviate your current condition.  

Thanks again for sharing a very personal experience.  

Wishing you a great vacation.

Dan

 

Hi Elie have you tried adding fiber to your diet to get it to firm up, as for dieting maybe keep a food diary and also track what your poops are like for different foods. 

Hello and welcome back and thank you for the visit and information sharing.  I am sure every ostomate on this site who is able to be reversed is indeed interested in the pros and cons regarding the results and the opinions of those who have had a reversal.  It is very kind of you to do so - THANKS and best wishes as you continue on your journey(s).  jb

Thanks for the update.  Congratulations  on you being sober. Enjoy your upcoming  trips. I hope you can get everything  worked  out diet wise so that you won't  have to undergo another surgery.

Wow!  Lots to be thankful in your update.  I’m only 13 months post reversal.   Very happy with the results and support from this group.   Have fun on your vacation journeys!  

Elle when I had a J pouch I used psyllium husk powder, worked well for firming up output.

Hi elle,

  Wow..........so glad to hear you're doing well!!  That's awesome.  Don't trivialize that last part though.  If there's a stricture.........an MRI or CT should tell definitively......that's not something to ignore.  Strictures form wherever there's scar tissue, and you have scar tissue form anytime sections of the bowel are cut and re-attached.  Strictures never get better, they either stay one size or grow, which shrinks the bowel down until nothing can get thru.  Then you'll have a blockage that can't be cleared, even with a balloon dilation.  So be careful.........I've had my fair share of strictures and they're NOT fun.  I'm not saying you need to do anything now, but monitor it routinely and have your Doc check its progress.  It's really something you don't want to pretend isn't real.  And the problem is the only way to fix it is to cut it out........which means new scar tissue will form and the whole process starts over again.  But regardless..........don't ignore it. 

  As for diet.........Gastroenterologists are not the people to talk to.  You need a Dietician who specializes in IBD, not diabetes.  They're rare, but getting easier to find every day.  Your Gastro should be able to point you to one.

  Congrats again on the reversal.............tell us more about what it's like to be normal.........I've completely forgotten!

;O)

Great explanation of what a stricture is, and its complications.  One the reasons I refused reversal.  I'm content with my bag butt.

Hi Beach,

  Yeah, me too.  The type of Crohn's I had was the most aggressive and every time they resected my bowels I'd get a stricture at the anastomosis, sure as shit.  So when they asked if I wanted to connect what's left of my small bowel to what's left of my colon I said 'hell no........but thanks for the offer'.  Wish it would have worked out different, but it is what it was.........that's just the cards I was dealt.  But I can still remember the pain I endured when I fully obstructed........and wouldn't wish that on anyone.  So like you say........bag butt it is!  

;O)

Love the picture not far away,love to hike,how bout you