Community Forums

Can we talk about r...
 

Can we talk about reversal?  

Page 1 / 2
  RSS

BetterBowels
(@betterbowels)
Registered
Joined: 1 year ago
Posts: 24
28/06/2018 2:51 pm  

Hello all,

I'm an overthinker. I spend too much time worrying about things I have no control over or things that are pretty far ahead in the future. Can we talk about reversal surgeries for a moment?

First, a little background: I've had UC for many years prior to my surgery and was told after surgery that I may have a possible diagnosis of perianal disease.  I had a total colectomy and an ileostomy was placed but they left my rectum intact. I've been advised that a reversal is a possibility for me. I remember after my last surgery, the surgeon talked with me about the possibility of having my ileostomy for the rest of my life. The two surgeons seem to have quite different opinions. The colon and rectal surgeon told me that the reversal would likely consist of a J Pouch being placed, along with the removal of my rectum, which makes sense to me seeing as how cancer is still possible with UC remaining in my body. Additionally, he said the ileostomy would be connected during a later surgery. He seems confident that my age and health are good enough for reversal to be successful. He advised that 10% of people who have a reversal later have that surgery reversed to get the bag back. That doesn't sound like a lot, but I'm worried about the question of continence after the reversal, how it will effect my life, and having to recover from yet another surgery.

I know there are many people here who have permanent ostomies not by choice. Would you choose to do a reversal if it were possible? And those of you who know others or have had the reversal themselves, what was the experience? Positive, negative, life-altering?

Thanks in advance, 

Darla


SMW and Zvitusk liked
Quote
john68
(@john68)
Registered
Joined: 2 years ago
Posts: 1310
28/06/2018 3:09 pm  

Hi Darla, My ostomy is permanent but if I was to give you an honest answer if I had a choice I would keep my bag. reason I live life well with it pretty normal in fact! its now part of who I am. You have the choice and its a difficult call their are plus and minus for both!! My knowledge of a J pouch is sparce so I am not placed to comment. Any surgery has risks and when going for it those risks are made aware to you! but at the same time that don,t mean that it would not be a success. Plus I agree when you mention recovering from surgery. when we have been through the doors of the theatre so many times we want back to normality!! but we can,t let that stop us either.

ileostomy 31st August 1994 for Crohns


ReplyQuote
Sasquatch
(@sasquatch)
Registered
Joined: 2 years ago
Posts: 112
28/06/2018 3:52 pm  

Hi Darla, I am in a similar position as the one you're in.  At the end of 2016, I had my sub-total colectomy done, leaving my rectal stump in place.  I've been offered the the J-pouch procedure, but I'm not sure it's for me.  This choice is a personal one, I've weighed the pros and cons, and feel better about keeping my ostomy.  This is one decision that I truly had to do some soul searching, and would advise that to anyone in this position.  Take you time with it, don't let anyone pressure you into a decision.  Unless there are medical reasons that something needs to be done quickly, there is no reason to rush it.

UC since 2002, subtotal colectomy Dec. 2016, proctolectomy Nov. 2018.


ReplyQuote
BetterBowels
(@betterbowels)
Registered
Joined: 1 year ago
Posts: 24
28/06/2018 4:07 pm  

Thanks, guys. I figure time is really going to be the biggest factor in this all. I think I need to consult with my doctor more and hear the reality of both sides.


Zvitusk liked
ReplyQuote
john68
(@john68)
Registered
Joined: 2 years ago
Posts: 1310
28/06/2018 4:19 pm  

Darla, Hearing the reasons why the 2 surgeons have different approach and as Conor has said the decision is yours.

ileostomy 31st August 1994 for Crohns


ReplyQuote
Zvitusk
(@zvitusk)
Registered
Joined: 2 years ago
Posts: 396
28/06/2018 5:13 pm  

Right now, you are struggling to regain control of your life and body. We all want that. Emptying your bag a dozen times a day really is not the greatest. 

On the other hand, surgery is also a desperate move,  fraught with dangers, physical, emotional and FINANCIAL. 

 

There may be a middle option down the road. You need to find out what else is available . For instance , I am exploring , as a colostomate, irrigation.  I don't know if it is viable for you , but I am indicating that  there are some options around.

Z


ReplyQuote
BetterBowels
(@betterbowels)
Registered
Joined: 1 year ago
Posts: 24
28/06/2018 7:27 pm  

Z! Great point! I was discussing that very same point to my parents (they worry about not doing a reversal). I keep thinking about what the future of medicine might hold. Unfortunately, irrigation isnt an option. However, as I've mentioned before, I feel that the bag has improved my life. And I probably only empty about 3-5 times a day, honestly. Well, that doesnt include night time I guess, but I have insomnia anyway.


ReplyQuote
Bubbles
(@bubbles)
Registered
Joined: 2 years ago
Posts: 244
28/06/2018 10:02 pm  

Take your time and do much research. J pouches work great for some for others they suffer terribly with Pouchitis . The pouch is constantly inflamed and  infected and they have to stay on antibiotics mainly Flagyl and that is one nasty antibiotic.  This could lead to C-diff from constant antibiotic use causing chronic diarrhea. So you should ask your doc about Pouchitis . Check out a website called HEALLINGWELL . Then pick the UC group . There you will find a large community of people sharing their experiences. Take your time , heal your body . Every year some new procedure comes  out . Hopefully the perfect one is waiting for you . 

Wishing you all  the best , Bubbles 


ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 529
29/06/2018 2:00 am  

I had a total colectomy, Ileorectal anestemosis with a J-Pouch.  It was good for about 7 years and then things began going bad all over again. After 4 years of that business, malabsorpton issues, malnourishment, deathly weight loss,  the problems of incontinence while I was sleeping, I welcomed the stoma.  The amount of urgency I dealt with was bizarre. The burning severe. The insults absurd. The embarrassment almost worse. I intended to get to this for you, but I felt what you experienced should be acknowledged as it was a huge part of trust that you even shared it.  If someone were to tell me to have a reversal, I would have to say no.   I appreciate so much how my ileostomy has given me a sense of freedom I have not had in too many years.  Yes, it is trial and error thing at first and sometimes a real test, but when I found myself dealing with everything better and being able to leave the house...well, that nailed it or me.  The crippling pain and issues with doctors was too much to carry on with.  After 8 more emergency surgeries enough was enough. You have a big decision to make,  be sure and weigh in on all the pros and cons. Make a list if you have to.  

Has anyone else been faced with this possible decision and what  helped you through it?  Please share if you think it will help.

Linda

Linda


ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2338
29/06/2018 12:10 pm  

A reversal was a topic that was brought up during a live panel discussion that I was a part of. The surgeon on the panel gives some great info about it. 

https://www.veganostomy.ca/ostomy-questions-reversals-intimacy/

I also answered the question, "would you have a reversal if given the option?". 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


ReplyQuote
Robert
(@njewell1)
Registered
Joined: 2 years ago
Posts: 670
29/06/2018 3:48 pm  

Hello Darla . I remember when I was first talking to my Doc. (surgeon) . We had talked about a J-Pouch which he advised against for reasons of infections Pouchitis and possible redoing surgeries .  Also we talked about an Ileostomy or I'm sorry I don't remember the name of this surgery it was to take the small intestine straight threw to the rectum no J-pouch that is what I chose to do and that's when my colon was removed  . After 2 years of still having problems and being pretty much home bound . I received my Norman (stoma) and they took out must of my rectum . I know have an permanent Ileostomy and even though I was not real fond of it in the beginning and had problems my life has gotten better . It has worked out best for me this way I'm glad this is where I settled .

Like some say the decision is yours take your time .

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 529
30/06/2018 1:20 pm  

Hey there Eric,  that was an excellent video...I even enjoyed the plane landing and the tour...I appreciate how you addressed the issues of sex, odor and the fact that there is  difference between the IBD's.  In hearing the doctor speak I realized that I had not mentioned I had to have  done.  I had to have a Total Colectomy, Ileorectal Anestomosis, with a J-pouch and several years later , more small bowel was removed,  a few times, leaving me with short gut syndrome and a permanent Ileostomy. I am a rectal keeper. It has been handy as a bladder disease has made the medication still possible.  I think it would be helpful to make a video about communication with to our doctors and clarifying the importance of telling them every little thing even if we think it is not relevant. I had questions but did not know how to ask them as I was raised in a  household where personal things were not asked about or questioned.  Sad, but true. I thought it was normal to pass out on the toilet. That is until I was 22 and had gotten married and my hubby found me passed out  there one day.  He is the one who insisted I talk about these things.  As far as sex went, I relied on a towel to place over my abdomen in case of a leak and for visual matters, now I now there are pouch covers for my bag.  Hubby was awesome.  Anyways, sex is where there a lot of questions  I would think especially for the younger set. Your video talking about is bang on too.  Thank you for making this available to us.  Could we somewhere talk about  dealing with being mal-nourishmrnt from malabsorption.  I had been vomiting for over a year very spontaneously. On average five to six times a day. Also in the middle of the night.  I had no clue this could happen.I was wondering what you would think about having people tell there whole story from start to finish one person per week. I personally would find this interesting as we do get snippets here and there.  But to attach the snippets to one story would be great.  You could invite each person and then email us to let us know.  Perhaps, they could send it to you first and thru your approval  of what they write, you, post it to your sight. Including the date of there ostomy surgery (if they know it) and how they are doing now.   The changes it has made in there life.  Maybe even a story about an awkward happening. To prevent too long a read in one sitting, have them do it over a week or three days, they can make notes and divide and concur. Including the ones who have had reversals done. Your right tho, not that I could, but I would never have a reversal.  This is a rather pleasant way to live my life, compared to before hand. I just had to suggest this.  Thank you again for all of your hard work. I appreciate you so very much.  I have a young grand and she is experiencing her bodies growth and finds her new shape horribly embarrassing. She is now at ease with it because I pointed out to her...as you say in one of your videos, that no one looks at those areas to judge and criticize you.  She has stopped her shy covering up and twisting of her arms and hands over  the are causing her distress. When I shared my story with her, she was so happy and realized she did not have to be so shy about her changes either. You have helped me so much from clothing to sex...well,  I can't say the sex thing because you came along after I had to deal with those issues.  I changed bag systems because of your information, and for the better.

Thank for considering.

Linda  

Linda


ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2338
30/06/2018 11:30 pm  

Lots of great ideas, Linda. I'm keeping them all under consideration. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


ReplyQuote
SMV
 SMV
(@smv)
Registered
Joined: 1 year ago
Posts: 8
01/07/2018 9:57 pm  

Hello!  I just joined this forum about five minutes ago and my eyes immediately went to this topic. The advice and resources others have given you look good. I would add jpouch.org to your list. I participated in that site for many years and found it helpful. 

As others have said, it is a highly personal decision and, unfortunately, there is no crystal ball about whether it would be worthwhile with your particular body.  The best you can do is to make sure you’ve consulted expert physicians, talked with experienced people, and you’ve done some careful self-reflection. Be wary of some online forums/posters/support groups because sometimes they are filled with people only interested in venting and don’t necessarily reflect the majority.  Others are fantastic, though, so shop around.  At some point you make the decision and go forward with a positive attitude and focus on what you can control.  

I had a j-pouch for more than a decade, suffered horribly with pouchitis and increasingly intense medications most of the time, and I finally convinced my doctor to order a permanent ileostomy construction. Best decision I ever made and wish I’d done it years earlier. On the other hand, I know a guy who has happily and successfully managed life with a j-pouch without medication for 15 years. 

I wish you well in your decision-making. The good news/bad news is that neither option is perfect so there is not a “right” decision. Keep us updated!


ReplyQuote
Derek
(@derek)
Registered
Joined: 1 year ago
Posts: 26
10/07/2018 12:34 pm  

Although i have only had my stoma for three weeks my doc says reversal could be done in 4 months.

So am looking at all options and comments to help make a descion.

Am here in mexico and had colon cancer op.then developed septicimia, in hospital for nearly a month.

No insurance here so paid appx 30,000 usd for all the treatment so far. I will need radiotherapy soon which will cost as well, so wether i live with a stoma for the rest of my life not only depends on the success rate but financial as well.

Bit of a dilema.

Any input gratefully recieved.


ReplyQuote
Sasquatch
(@sasquatch)
Registered
Joined: 2 years ago
Posts: 112
10/07/2018 1:40 pm  
Posted by: Derek

Although i have only had my stoma for three weeks my doc says reversal could be done in 4 months.

So am looking at all options and comments to help make a descion.

Am here in mexico and had colon cancer op.then developed septicimia, in hospital for nearly a month.

No insurance here so paid appx 30,000 usd for all the treatment so far. I will need radiotherapy soon which will cost as well, so wether i live with a stoma for the rest of my life not only depends on the success rate but financial as well.

Bit of a dilema.

Any input gratefully recieved.

Once you get used to the ostomy, it's not all that bad living with it.  It really doesn't limit me very much.  Myself, I don't want the complications that could come from a reversal surgery. Even if it's successful, I don't see it improving my quality of life much.  Everyone who has to make this decision, in the end, needs to do what is the right thing for their own personal circumstances. 

UC since 2002, subtotal colectomy Dec. 2016, proctolectomy Nov. 2018.


ReplyQuote
john68
(@john68)
Registered
Joined: 2 years ago
Posts: 1310
10/07/2018 2:08 pm  

Hi Derck, the above advice is valuable, the reassurance that life with an ostomy can be normal from a young guy living with one. As stated its your personal choice and the feed back here and from other posts which will come in I hope will help make this decision

ileostomy 31st August 1994 for Crohns


ReplyQuote
Marcie
(@shulmjs)
Registered (M)
Joined: 2 years ago
Posts: 1497
10/07/2018 2:22 pm  

Derk, I would wait it out for a good year or so.  You have a lot going on now.  A lot of accepting and money adding up.  As stated, a stoma is liveable.  Once accepted with a stoma, we just go forward looking into bettering ourselves. 

Don't put your mind in a turmoil of such major decisions right  now.  Healing is your road and your doing a good job at it ! Live simple for now.. Best.....  Stay with us buddie!! Your American friend Marcie.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


ReplyQuote
Dona
 Dona
(@dona)
Registered
Joined: 2 years ago
Posts: 672
10/07/2018 3:00 pm  

Derk,

Welcome to the forum. That is good advise from others to heal and get your health back before deciding any further moves.

SO many things will affect your eventual decision.  You just need to live with it for awhile. Heal and see how it goes.

Also, sometimes at first it will take awhile to settle on the right appliance etc etc. Take that into account too. Your stoma will change a bit over time . Hopefully you will get a workable solution soon. 

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


ReplyQuote
Derek
(@derek)
Registered
Joined: 1 year ago
Posts: 26
11/07/2018 4:27 pm  

Thanks for all your input. 

Everyday does seem to get easier with the stoma. Bag cleaning and the occasional leak are the worst to deal with.

Early days and will try more products but here in mexico doesnt seem to be free samples.although going to a wholesaler next week.

 


john68 and Sasquatch liked
ReplyQuote
Page 1 / 2
Share:

  
Working

Please Login or Register