Reversal question. Very frustrated.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 5/3/2011 8:02 PM (GMT -6)   
Ok so I have my check up to get released may 12th. I'm currently pissed off because my dad is really pressuring me to get the reversal surgery. I've dealt with enough trauma and wasted 3 months in a hospital being absolutely miserable. Right now the last thing I want to think about is surgery. Also I've heard that recovery from reversal takes up to a year. I'm 20 years old. I don't have a year to sit on my rear til things get working.

My question is, I have a rectal stump in. Not exactly sure of the details. How long can I put this surgery off for? Honestly the ostomy is easy to deal with. I don't want to have to deal with this after just getting used to it.
No colon, still rollin'

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/3/2011 9:08 PM (GMT -6)   
I'm not sure of the answer...just want to wish you well with your decision. If you are not ready it certainly seems like you should be able to postpone this for awhile until such time you are ready.

I've read the success rate is very high...reading some of the situations that don't seem to work out as hoped and planned certainly can be disconcerting and give one second thoughts too.

My husband's surgery was Dec 17th and we were giving it about a year before we made any kind of personal vacation committments as we were hoping for the 2 step process which was not meant to be as it turned out. So thinking you might need a full year to get everything done, settled, healed etc. to get back to normal is probably right.

If you are not ready for that you should not be forced either as it is important that you are in control of this decision. Good Luck.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 5/3/2011 9:25 PM (GMT -6)   
Right. I've done quite a bit of research on it. I'm going to talk with my gi doc the 12th. I don't really have anything scheduled yet, so hopefully I can wait a good while. I'm starting back at a new cOllege in the fall and I'm more concerned with that than this! I'm too active to have to take that six months to a year out lol. My parents dont understand that part I guess. It's killing me to not be able to get out as it is. Pretty sure I'd go insane with that kind of downtime.
As for the two step process you mentioned, is this referring to colectomy and then j pouch hookup? Or Colectomy and ileostomy? I had the second one done. I'm not sure if I have a j pouch or not. They just told me that they left a rectal stump in. Gotta ask about it lol. Thanks for your input! :)
No colon, still rollin'

smackie
Regular Member


Date Joined Feb 2011
Total Posts : 55
   Posted 5/3/2011 10:37 PM (GMT -6)   
SigmaChi - do you have crohn's or UC?

I'm looking at closing out my stoma later this year - either an ileum to sigmoid join - or a j pouch depending on what dr's say over the next few months. Still not sure if I have crohn's or UC.

If you only have rectal stump you could have an ileum to rectum join or a j-pouch constructed if its UC or crohn's colitis (some surgeons). The J pouch would be another 2 steps for you
Jul 06 - Dx with Coeliac
Sep 06 - Dx with Crohn's
Oct 10 - Pancolitis subsequent to a campylobacteriosis infection
Dec 10 - Dx Crohn's (GI) / Dx UC (Surgeon) / Dx Indeterminate colitis (Pathologist)
Dec 10 - Subtotal Colectomy & End Ileostomy [complicated by high dose IV steroids]
2011 - The year of recovery
2012 - Ileosigmoid anastomosis? J-pouch? Total proctocolectomy?

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 5/3/2011 10:46 PM (GMT -6)   
They never really decided chrons or uc. They believed UC though. I've had no chrons symptoms. Which one are you leaning towards? The ileum join or the pouch?
No colon, still rollin'

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 5/3/2011 11:02 PM (GMT -6)   
Hi,
 
July 2010 I had a total colectomy with ileorectal anastamosis.  But it disconnected, leaked and the horrible leakage turned into abdominal sepsis, gave me a blood clot near my liver and a blood infection.  Was hospitalized for 5 weeks, ICU 2 weeks,  ileostomy and an open wound.  This has scared me so bad. The pain, the uncertainity, being told I might not make it, it's an out of body experience.  I too have everyone in my life asking me when am I going in the reversal.  I say...when I'm ready.  They say what am I waiting for?  I tell them...did you not see me, I almost lost my life, came home after a 35lb loss, bones sticking out, white no color, couldn't walk or stand, and those abdominal issues?  And I'm a single mother, parents deceased, cared for myself with a nurse coming here to help everyother day.  No one understands.  The flashbacks, the depression, I still can't wrap my brain around it.  When I came home, thank god, I did do a fast   turnaround, it was dramatic and shocking how fast I healed.  Now I feel well, active, and to go back in, gosh I don't know.  My kids finish school next month and without the burden of the children, will probably do the reversal then (still have rectal stump, had severe diverticulosis.)  I don't know how to walk through those surgery doors again, how to withstand being hospitalized for a week if everything goes well, having abdominal pain again, and the bowel recovery.  What if it's not a success for me?  What if I have severe complications again?  All those what if's run through my brain all the time.  I know how you feel, my best advise is to do it when it is a good stressfree time for you, and your mentally ready because you will heal better.

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 5/3/2011 11:23 PM (GMT -6)   
I definitely have been there. I had a blood clot and was so weak from surgery that I lost 28 lbs. I weighed 128 to start with. I looked anorexic. Now I can eat and do whatever! I have about a year and a half of school left. After then I'd probably be fine with it. But right now I don't ever want to see a hospital, iv, nurse, or hospital food ever. Ever again.
But that sort of answers my question. You have had the stump almost a year. I just need to know if there's a required time to get it reversed or of it's safe to leave it in.
No colon, still rollin'

smackie
Regular Member


Date Joined Feb 2011
Total Posts : 55
   Posted 5/3/2011 11:34 PM (GMT -6)   
Sigma and windy city,

Struggling with the thought of going and getting more surgery and the risk of complications and learning how to use my bowels again - let alone the risk of either UC or crohn's returning. I am young too - at 26 and would like to have use of my bowels again [if only for a temporary while].

I'm feeling healthy again and although I would love the reversal (to be successful). After 2.5months in hospital over last xmas I would like a bit of a break before I think of the next steps.

I'm divided. 50% wants it down now - and 50% wants to wait. But 100% wants an answer if the surgery can be done!

I did tell my Surgeon I refuse to have any time-line for surgery that will put me in again over the xmas / new year break. He agreed and told me that can be my xmas present from him.

I'm not sure where I'll end up leaning towards. To be honest it will depend on what the surgeon recommends. The GI recommends I go with the simpler ileum-sigmoid join as it is a simpler operation / I have only ever had mild disease of that portion of the bowel and I am responding well to Pentasa and believed my last flare was caused by food poisoning that caused out of control colitis.

This will mean further medications for life though - and like a lot of crohnies - stepping up the medications to scary stuff ladder if symptoms return.

However, if they're wrong and it is UC I have to think about the risks of cancer.

Also - if the ileum-sigmoid join is done first there is still the possibility of a j-pouch being constructed later on. [but not the other way around]

Sigma - also - the year long recovery is more for everything to settle down completely. From my reading people take around 6-12 weeks off work for it. You'll still be able to get up and about much much earlier on [unless there are complications].
Jul 06 - Dx with Coeliac
Sep 06 - Dx with Crohn's
Oct 10 - Pancolitis subsequent to a campylobacteriosis infection
Dec 10 - Dx Crohn's (GI) / Dx UC (Surgeon) / Dx Indeterminate colitis (Pathologist)
Dec 10 - Subtotal Colectomy & End Ileostomy [complicated by high dose IV steroids]
2011 - The year of recovery
2012 - Ileosigmoid anastomosis? J-pouch? Total proctocolectomy?

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/4/2011 10:03 AM (GMT -6)   
Sigma
 
There really is no time period for keeping an ostomy ....and you can keep it forever if you like - it is purely a personal decision as to when you decide to have a reversal and it sounds like you want to have a bit of life yet before going down the hospital route again.  I had my ileo for 18 months.
 
so i think you have answered your own question - in any event it is your body and you make your own choices, you are an adult...no one should pressure you with regards to surgery or anything in fact unless they have a good reason to of course, which there is not in this case as far i can see. smilewinkgrin
Karen: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR procedure - mucosal prolapse/ODS/diagnosed slow transit constipation
2007: Sigmoid resection (MRI showed twist) - made colonic inertia worse (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal - not going well

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 5/4/2011 10:35 AM (GMT -6)   
SigmaChi...there isn't a time frame. I was concerned too, as not to wait too long, they initionally stated 6 months. But there are also things that could occur with indefinately leaving the rectal stump. I've have read on here people going in 2 years later because of life constraints, school/work.

When I have to go to the hospital to see my hematologist, I cringe and get flashbacks. When I run into people there,the residents, the hematologist, the nurses, infectious disease, WOCN, nutritionist, theapists, they don't recognize me and are shocked that it's actually me and I look so great. I too came home just over 100lbs. They are all encouraging me to go forward but understand my hesitance. I never want to be in pain like that, be in a hospital bed, be on a surgical table. But I have comfort in knowing that my clot was because of the abdominal sepsis, not genetic, and that I don't have any other underlying conditions. I'm also not on any meds. I've given my body the time to heal and I feel great. Biked 50 miles the other day. My body healed so quickly after discharge, I'm suprised because I'm 38. I feel so great, but what if, if everything does go well throught my surgical stay... my bowels don't work as anticipated. More suffering? I guess, the bottom line, because this is elective, we have to have all in place......body, mind and support from our doctors.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 5/4/2011 11:57 AM (GMT -6)   
I originally had a loop ileo done when I was 20yo with view to reverse it 6 months later. After 3 days I told surgeon that I didn't want it reversed as there was no way I was going to go through the pain and suffering I had done of for the previous 18 months with the CD. He turned round and said probably best decision as my colon which was still there was really badly damaged and he doubted if it would have improved even after 6 months rest but he left it as a loop ileo as I was so young and wanted to give me the choice should I want it. Six months later I had it made into an end ileo as the loop started to pull back on itself and left the colon in situ which was eventually removed 6 years later.

The reversal is a very personal decision and when to have it done has to be when you're ready. I think most people on here will understand the wanting some time out to enjoy life again before outting yourself through more surgery. I would just ask you surgeon when you see him what the options are for reversal and then say that you want to wait until you are ready then you can give yourself plenty of time to decide what to do.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/4/2011 12:21 PM (GMT -6)   
As others have said, Sigma Chi, it sounds like you can have what you want -- go, finish school, have fun, and when the trauma of the hospitalization isn't the first thing on your mind all the time, see what feels right then. It sounds like people go either way, and it is personal (and often permanent).

When you're twenty, a few months or a year is a huge proportion of your adult life to date. It's a very big deal to lose time then. When you're a bit older, years and months are still the same length, but not the same proportion of your adult life so far, and maybe the "lost" time won't feel as devastating. (Or maybe it will. I made my decision partly based on being tired of hospitals and being sick).

Sorry things are hard with your dad. He is likely thinking of what he considers to be in your best interest long term..... doesn't mean he's right, and as others have said, it's your body, your choice. But I hope you can work it out -- it'd be much better for both of you if you were on the same side.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, June 21, 2018 3:03 AM (GMT -6)
There are a total of 2,974,031 posts in 326,235 threads.
View Active Threads


Who's Online
This forum has 161223 registered members. Please welcome our newest member, otismacie.
267 Guest(s), 2 Registered Member(s) are currently online.  Details
alunke82, KarloVen