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Ileostomy reversal (hopefully) in 5 weeks

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(@squeakyandliza)
Joined: 5 years ago
Posts: 993
 
Posted by: @john68

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 ?

John,

Hahahahahahahahaha!!!  ????

I’ve never thought of lingerie buying from a guys perspective before. Thanks for the laugh!!!

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


   
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(@zhtfreak)
Joined: 6 years ago
Posts: 59
 

@john68 and @tigerlily agree with you both. Again, I'm probably the odd one out here, but for me since I didn't have any preostomy life to compare to as a child, I was very ashamed of it and saw it as a huge limitation, when a lot of people look at theirs the other' way around. Even though I eventually had a successful reversal, I still wish I had been taught to take care of my ostomy on my own because it would've enabled me to participate in a lot more activities, as well as saved me a lot of embarrassment from being dependent on someone else - especially when the people I was comfortable with weren't there.

 

Perhaps more normal, I was also taught to keep my ostomy on the down low, so I always got really anxious whenever one of my friends noticed it and asked what it was for. I've heard some people are way more open about their ostomy which kind of blows my mind. When I went to one of my local ostomy support group's meetings in 2019, the nurse there told me they have a DVD they give to people who will be getting an ostomy. One of the people featured in it is a body builder who flexes and has his pouch exposed. My first thought was I would never do that!

 

@mmz hoping your procedure goes well. It sounds really different from mine. Maybe that could be down to specific sircumstances and advancements in medical procedures. I was in the hospital for 9 days when I had my reversal. Got there on a Monday afternoon, had the surgery the next morning, and wasn't discharged home till the following Wednesday afternoon. I remember I couldn't eat anything for the first few days, and obviously had to build up the things I could eat again. Vanilla ice cream never tasted so good! I was so excited to be eating softer foods instead of just the clear stuff, and one night there was a mix up and they brought me a full meal with pork chops, rice and a piece of chocolate cake. Really? They were gonna stick that in front of my face and then tell me I couldn't have it? Then the doc walked in, saw what they had brought me and my disappointment, and said "let that boy have it!" I was so happy that I sang the Pocahontas theme song for all the nurses the next time they came in. Yeah, no shame. lol

 

It is interesting though, why some people like me can have a reversal, and a successful one at that, but other people can't.

 

Brian

Nechrotizing Enterocolitis 7/3/1982
Ileostomy 7/29/1982
Reversed 8/1/1995


   
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mmz
 mmz
(@mmz)
Joined: 3 years ago
Posts: 41
Topic starter  

@john68

Point taken. Removed questionable portion of posts. Hope I’ll be able to come to terms with all that has transpired in the past few months once this roller coaster slows down.

me & my little volcano ?


   
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(@squeakyandliza)
Joined: 5 years ago
Posts: 993
 

@zhtfreak

Brian, my world was turned upside down when I got my ostomy.  But I did the opposite. I took the power away from my ostomy by being completely open and honest about it with everyone. And maybe that is something that comes with age and life experiences that a child wouldn’t have. It wasn’t easy at first but got easier with time and I figured it was better to be open than to have people speculating what was going on. Plus it would make it easier if I had a problem at work. 

Now I’ve started applying for new jobs and my plan is to do the same thing when I do start a new job. But I will feel out the situation. At my last job, they all knew I had been really sick and had been out on disability for 6 months, so that gave me the good opening to tell people about it. 

It definitely would have been so much harder if it happened when I was a child. I definitely would not have handled it well. 

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


   
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mmz
 mmz
(@mmz)
Joined: 3 years ago
Posts: 41
Topic starter  

How to make a long story short….?

Ileostomy reversal in and of itself went fine last March, however, several days after returning home, I was back in the ER with major leakage and pain from a rectovaginal fistula. It was more than likely formed during the peritonitis/septic shock which followed several days after my colorectal tumor removal in Nov. 2020 and had gone dormant due to the original ileostomy taking off the pressure. The fistula did not show up during tests prior to reversal.

Emergency repair to the fistula did not hold. When a second, multi layer attempt at repair also did not hold, we decided to replace the ileostomy. This gives me the luxury of time to let everything heal and research/prepare for a more complex surgery once tissues are no longer inflamed and fistula has matured. I came home with PICC line to infuse TPN for 12 hours every night, and after about 2-1/2 months was able to regain the 20 pounds I had lost since last November. I’m been off TPN for about 3 weeks now and holding at my pre-surgeries weight and feeling very good. Its nice not to be hooked up to I.V. anymore and enjoy some ocean swims.

I have an early August in-person exam out-of-state with my new surgical team to determine when & how to do the fistula repair. Hoping for September. If all goes well with that, I’ll get tested (more aggressively this time) 3 months later to see if I’m ready for a 2nd attempt at Ileostomy reversal.

I’m at a total of 7 surgeries and 49 nights in the hospital since last November, and am hoping that just 2 more surgeries will more or less put all this behind me (pun intended). Life is amazingly good despite all this, thanks to great family, friends, overall health, work, and medical care.

I am ever grateful for @Veganostomy.ca for helping cope with day-to-day life with an ileostomy. Being social media averse in general, it’s the only spot I’ve actually posted on.

I understand why being enthusiastic in my hopes for ileostomy reversal can touch some sensitive spots. I also believe other (hopefully) temporary ostomates like myself may find this a great site for adjusting to whatever span they have their ileostomy and hope open discussion of reversals can be useful.

Parting thought: my new mantra is ‘an empty pouch is a happy pouch’. Getting in the habit of always leaving the house on empty and planning extra time to hit an ostomy friendly public bathroom when in town has eliminated the stress of former pouch blowouts.

me & my little volcano ?


   
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(@john68)
Joined: 7 years ago
Posts: 2048
 

Hi mmz, I am really pleased to hear that all the surgery will be in the past. The very best going forward ?

ileostomy 31st August 1994 for Crohns


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1496
 

@mmz...your a bit of  tough cookie!! I stalled reading "ocean swims" a bit happily envious for you & want you to know that I think that had to be the best outcome in the end!  Pun intended!  I live in ?? only ? desert &  love &  miss our ocean dearly. Beach walks were always a source of reflection and healing & a great place to unwind & breathe! Deep sigh.... 

 I think your very brave attempting a reversal and truly hope all goes as well as you need it to go. VO has been the best site possible for ostony chit chat and a very necessary one for sure. Eric is a bit if a guardian angel I  my books.  Good luck with further surgery I hope  compete  healing of it. Please keep us in the loop & don't be a stranger here.  it'll be interesting for anyone else having the ability to try a reversal also. Leaning on anothers good (or not) experience can be encouraging. 

All the best & heal well!! 

Linda


   
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LLNorth
(@llholiday)
Joined: 5 years ago
Posts: 543
 

Hello mmz, I do know a woman who had a temporary ostomy and then some complications (she is a relative of a close relative), and although we have never discussed it I think she is past that as she seems to be living her nice life as she had before the surgeries. The reversal was more than five years ago.  Initially, she was expected to have her ostomy for 6 months; she had it for closer to a year, I believe. Today she seems fine - my wish for you is that you will feel fine soon, too.

Oh, yes, the empty-the-bag-before-you-leave-the-house habit is a good one! And I am becoming somewhat of an expert on scouting out the friendly bathrooms, also - and on speeding things up in a not-so-friendly one!

 

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


   
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mmz
 mmz
(@mmz)
Joined: 3 years ago
Posts: 41
Topic starter  

Thanks for the encouragement. It's such a boost.

I am much more at peace with this 2nd Ileostomy that I was the first go around, although of course I'm still very hopeful for a reversal next year.

Someone mentioned changing out their appliance as a 'spa treatment' and I liked that so much that I've created that for my bi-weekly routine. And, once I got a handle on how to manage my unruly ileo better, Eric's input of showering with the appliance off and giving the skin some air time has made my skin under the gear healthier and seems to make everything hold better. Bringing my phone into the bathroom for the ritual lets me tune in whatever music suits my mood to create the ambiance. Then wrap it all up with a good head to toe lotion rub makes it relaxing and energizing. Amazing the power of words...  saying I'm going for my "spa treatment" puts my head in a way better spot than "I've got to go change out my $%!# appliance again" LOL. I never would have come up with this, or the many other ileostomy strategies without this fabulous site!

I'm mainly focused on being as healthy as possible going into fistula repair surgery this fall since I understand how often these surgeries fail (including the 2 attempts I've had to date). I trust the team of doctors I've settled on to do their best. They'll most likely harvest the gracilus muscle from my leg to do the reconstruction, so I'm expecting having to lay low for a while for that to heal and to give the repair the best shot at holding. I'm not so impatient this time around for the ileostomy reversal, as its now become the luxury item that's allowing me time to get out of triage surgery mode and into planned, well managed repair rather than the shock I woke up with after 10 days in ICU for breakdown of the colon resection. 

me & my little volcano ?


   
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(@squeakyandliza)
Joined: 5 years ago
Posts: 993
 

@mmz

I must have missed the original spa treatment post. I love that!!  I do the same thing with playing music on my phone during my shower and appliance change. 

I agree it is a good idea to get as healthy as possible before surgery. There was a huge difference in my recovery time from my first surgery and my last one, and being healthy was the biggest contributor to that. 

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


   
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mmz
 mmz
(@mmz)
Joined: 3 years ago
Posts: 41
Topic starter  

Happy ENDing! I'm almost a month out from my second Ileostomy reversal. As mentioned before, the first attempt was derailed by a large rectovaginal fistula which had not shown up in the Fluoroscopic exam prior to surgery. I wound up finding an excellent Colon surgeon out of state who took this 2nd reversal super cautiously. Patience, time to really heal from the 7 prior surgeries, get back in good health and up to a more normal weight, and her amazing expertise all paid off. The fistula healed on its own, avoiding the complex Gracilius Advancement Flap surgery that was originally thought to be a given. I’m in for a lot of trial and error getting my system working properly with most of the rectum removed along with the original tumor, and with my large intestine having been on a 1 year vacation, but their subsequent testing shows I have remained Cancer free for over a year, which makes everything else small stuff. So far, it’s going way better than I expected, though not without some challenges and mini setbacks. The details aren’t really relevant on this site, but I’m open to any personal messages if this triggers questions by others looking at reversals.

Mainly just wanted to take time to say again how much I appreciate this community for all the excellent information and support to get through my time as an ostomate. I know my Ileostomy was a luxury item that saved my life and afforded me time to heal and find the best team for follow up, all of which I'm eternally grateful for. I've passed on the @Veganostomy.ca web address every chance I get to my doctors and the hospital staff in hopes it will help others.

Now looking forward to ways to pay it forward, starting by having sent all my unused supplies of FOW-USA, and looking for some way to offer support to local struggling ostomates and/or recent reversal patients.

Many, Many thanks!

me & my little volcano ?


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4255
 

@mmz What a wonderful update, thank you so much for letting us know!

It's amazing to read that your fistula healed on its own! I'm sure that was a relief, knowing that you avoided more surgery. 

And good for you for donating those supplies ??

I wish you all the best, and please check in from time to time. I'm sure your experiences can help others who are looking. ?

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@john68)
Joined: 7 years ago
Posts: 2048
 

Yep it’s great to hear that you are doing well. And yes your experience will help others. Best wishes for the future ?

ileostomy 31st August 1994 for Crohns


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1496
 

@mmz  ... Wow! Good to hear back from you. This is fabulous news! I'm so happy for you & very pleased to hear your cancer free with the bonus of your fistula healing! Congratulations on all accounts & continue to heal as well as you can. 

You certainly have a good start & great outlook & I truly hope everything continues on this path for you.  I agee with Eric & John, keep your nose in this book of life & feel free to help others as you can. Your experiences are highly valuable.  There has been reversal questions here in the past & finding encouragement from one with a good outcome will be great info for those going or considering going through a reversal.  All the best!! 

Linda


   
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Tigerlily
(@tigerlily)
Joined: 4 years ago
Posts: 369
 

@mmz Wow Marian! Good for you!! This is incredible news! I am so happy that things have worked out so well for you. You can pat yourself on the back for doing your research and finding the best surgeon for you. I don’t think people always realize the responsibility they have to be their own advocate - you have just demonstrated how important it is. We tend to think that one surgeon is the same as the next one, which is naive at best. I know you probably didn’t feel like doing a lot of research when you weren’t at your best, but it definitely paid off. I’m so glad also that you were able to avoid the gracillius flap. It might have solved one problem, but it may well have brought other issues. I also was able to avoid that by opting for hyperbaric oxygen therapy. My mantra is to turn over every stone, looking for all the options before making decisions. You have done exactly that. I hope you will stay with us on VO. You have some valuable experience that will be helpful for someone else. So nice to hear from you!

 

Laurie

Just a semicolon


   
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LLNorth
(@llholiday)
Joined: 5 years ago
Posts: 543
 

Such wonderful news! I know, though not well, a woman who had a reversal about 7-8 years ago (her original surgery was because of sepsis with unknown cause, and she had her ostomy for close to a year). She has done very well since then. I am so happy for you!

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


   
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(@stella)
Joined: 3 years ago
Posts: 82
 

Marian (MMZ), it's so amaze and joyful to hear your post. So happy for you.

Brian And you Marian give me hope and light.

I had my rectum cancer in 2020 Nov. So far is tested cancer free. But I cannot urinate by myself since after surgery, I didn't think about the reversal although all doctors pass and my family doctor advised me to discuss with my surgeon about the reversal, I still hesitated.

I will see my surgeon to discuss with him about the reversal.

Brian, you're always in my mind. You were born as an hero. I read your story before and told myself that I cannot spoil myself, all I'm experiencing is still something taste like sweet, I meant all what I'm experiencing is actually not as bitter as I feel or think. 

This site really giving soooo much hope and light for ostomates (no matter permanent or temporary). This is really a family always give support and hope. It's my blessing God guided me to come to this site on the day I joined.


   
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mmz
 mmz
(@mmz)
Joined: 3 years ago
Posts: 41
Topic starter  

Six months out from reversal, 1.5 years out from 1st surgery, and all is well with no more internal leaks and Cancer free!

The main challenge is bowel management.

The available advice is all over the place - just like Ostomy advice (what would we do without @Veganostomy?) No wonder we get so confused! For Ileostomy reversal, I think it's partly due to individual colon health (Treated w/Chemo/Radiation? Chron’s/diverticulitis? Fortunately, I had neither).

Also, where and how much Colon/ Rectum were removed. If the rectum, your natural holding pouch, was removed (as mine was), it takes 6 mos. to a year, or 1-2 years, or never (depending on what you read) to find your new normal, which won’t be your old normal. It may mean multiple stools each day (up to 10-15 in my case). Since the Colon removes the liquid from the stool, loosing a portion of it can result in runny stools.

And that’s just some of the variables….

My doctor advised trying daily tap water irrigation. This is a tradeoff. For me it means from 30-45 min in the bathroom daily, but in one planned lump instead of the multiple unplannable trips. I’m very active, so this is a small price to pay. I’ll try weening off this from time to time but am realistic this may be a lifelong routine. Also, a tsp of Benefiber daily helps bulk up the stool. And exploring when/what to eat, especially if I'm out and about for the day or eve. 

Still a bit tender around my incision but given that same spot was opened and closed 5 times in my various surgeries, there were lots of adhesions to break up and repair of a small parastomal hernia during the reversal.

If you are considering reversal and want more info – you can message me direct. Hope this is helpful to someone considering reversal who stumbles across this!

me & my little volcano ?


   
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Tigerlily
(@tigerlily)
Joined: 4 years ago
Posts: 369
 

@mmz so nice to hear from you, and great to hear that you’re doing well. I hope that the irrigation is a workable solution for you. Yes, it’s all about trade offs isn’t it? Thanks for sharing your experience with us; you never know how helpful it will be for someone else. And you’re right - there isn’t a lot of information out there about living with an ostomy, or a reversal. So glad things have worked out well for you.

 

Laurie

Just a semicolon


   
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