Reversal question. Very frustrated.

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.

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

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.

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].

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.

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.