Scared of the reversal

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Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 1/27/2009 2:49 PM (GMT -7)   
I have spent most of my life since getting the ileostomy looking up everything I can find on reversals.  I have just got to the stage where I am starting to enjoy life I've been able to take my son out and have a life again, no pain! fantastic.  But what I've read about reversals it seems they are doom awaiting.  I've spent too much of my life on the toilet and I'm scared of going back to that again.  I'm afraid I will never dare leave the house again because as soon as I'm ready I get that feeling I have to go so off come the shoes and coat and the rest of the day gets spent in the bathroom.  I've also read that they don't really work people get ill again well I'm bound to get ill again I have Crohns.  To be honest I'm scared.  So...
 
Have I only read bad things because tons more people are off enjoying their lives?
 
What can I expect from the operation itself?
 
What is a realistic (ish) timescale to expect to spend near the toilet (weeks, months, forever?)
 
What can I do to help myself for the operation?
 
What can I do to help myself for after? (I know bananas and mashed potatoe thicken things up what else is there?)
 
Is excersising straight after helpful or not like walking and gentle Yoga?
 
I would be grateful for any advice on how to handle this and hopefully on the better side of things I've read to much bad
 
Thank you so much
 
 
36 year old single mum to a 2.5 year old son
Suspected Crohns when 10 years ago had a very painful rectal abscess
Diagnosed with Crohns desease properly 6 years ago
2008 developed fistula bowel perforated onto bladder resulting in temporary ileostomy
hopefully a reversal around March 2009.


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 1/27/2009 3:11 PM (GMT -7)   
Trust me, you want a reversal if you can have one. It is so freeing!! Yes, there may be complications but it is all worth it! This is only my opinion of course, I don't want to speak for everyone. I want to try to answer your questions though and see if I can help.

You only read bad things because you are scared, and truth be told you probably read good things too but you only remember the bad ones.

From the operation itself you can expect what you would normally expect, about 4 days in the hospital and pain upon waking up, etc. You'll really need to walk and drink LOTS, those are two of the most important things.

Every body is different so I'm not sure anyone can tell you how long to expect to be near the toilet, but for me I went about 15-20 times a day for the first month and then it drastically reduced down to 3-4 times a day.

To prepare for the operation just be as healthy as you can. I don't know your healthy situation now, but make sure you are strong and healthy. I would be walking everyday if I were you. The healthier you are going into it, the quicker and easier your recovery will be because of your strength. Also - think positive!

I had several things on hand for after the surgery - Depends, calmoseptine cream, flushable wipes, tucks, soft toilet paper (take all these items to the hospital with you) I know I'm forgetting some things and when I remember I'll tell you.

You won't be able to exercise right after the surgery, you'll probably just be able to walk which is what will be most important. You'll have to follow your doctor's advice where anything more than walking is concerned.

I hope I've helped you some. I can tell you this; from start to finish (TC to Reversal) I've had complication after complication and I would do it all over again. That's how happy I am. It is SO worth it!!

I'll be more than happy to answer any other questions you may have.
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - March 13, 2007
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Temporary Ileostomy due to small bowell perforation Septepmber 29, 2008
Ileostomy Reversal - December 15, 2008
Multiple Small Bowel Abscesses-December 22, 2008
Leak at original Anastamosis -December 25, 2008
JP Drain removed - January 23, 2009
 
The whole world is at your feet; so paint your toenails Red!
 


Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 1/27/2009 3:23 PM (GMT -7)   
2 Ris 2 I'm so grateful for your quick and very helpful reply you know how it is just desperate for any information possible.  You've certainly given me hope in that you've been through so much but would do it all again.  If they do the reversal next month there might be hope then that I could make it up to my son by Summer.  What are depends? can you by them or English equivalent from a chemist?  Is it true I might not make it to the toilet in time I'm most fearful of that!  I'm already out walking but I shall make more of an effort now.

36 year old single mum to a 2.5 year old son
Suspected Crohns when 10 years ago had a very painful rectal abscess
Diagnosed with Crohns desease properly 6 years ago
2008 developed fistula bowel perforated onto bladder resulting in temporary ileostomy
hopefully a reversal around March 2009.


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 1/27/2009 4:16 PM (GMT -7)   

My daughter had her reversal in November. It's been wonderful! She had much less pain with this surgery than she did with the 1st one. She was up and about within 24 hours. She walked and walked the entire 4 days she was in the hospital. And had a smile on her face. She took minimal pain medicine.

The first 2 weeks or so were a bit tough on her bottom. The first few days home she had a few minor accidents (getting to the bathroom just as she had to go so her undies were a bit soiled). And she had a little butt burn during those days. We think it was more because she still had so little food in her system. Within 2 weeks she was good at controlling her system and the butt burn was gone.

To the hospital, we took toilet paper (the hospital stuff is usually scratchy), and Desitin baby ointment (the stronger version). We also bought wipes. We learned about some things to bring on the j-pouch website. She used the wipes and the ointment in the hospital the last day.

When she got home, she started using Cottonelle wipes (instead of the generic wipe). Much better for her bottom!

She went back to school 3 weeks after her surgery (that included Thanksgiving vacation when school is closed anyway). No leaks, no accidents. She did carry around a change of stuff and wipes and ointment.

She is having a great senior year in high school. She has a relaxed look on her face that we haven't seen in 2 years.

I wish you luck.


--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 1/27/2009 4:33 PM (GMT -7)   
Depends are like adult diapers. I only used them at night for peace of mind, but actually only had one accident.
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - March 13, 2007
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Temporary Ileostomy due to small bowell perforation Septepmber 29, 2008
Ileostomy Reversal - December 15, 2008
Multiple Small Bowel Abscesses-December 22, 2008
Leak at original Anastamosis -December 25, 2008
JP Drain removed - January 23, 2009
 
The whole world is at your feet; so paint your toenails Red!
 


Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 1/28/2009 4:27 AM (GMT -7)   
Thanks guys, Bennie I'm glad to hear your daughters doing well now.  So if suffering from the runs would you say it's better to eat rather than not eat?  It's bad enough to know I will need the toilet a lot but awful to think I might not make it there, oh please don't let that happen in hospital or the journey home smhair
36 year old single mum to a 2.5 year old son
Suspected Crohns when 10 years ago had a very painful rectal abscess
Diagnosed with Crohns desease properly 6 years ago
2008 developed fistula bowel perforated onto bladder resulting in temporary ileostomy
hopefully a reversal around March 2009.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/28/2009 5:28 AM (GMT -7)   

MissUK--It really is an individual thing.  I have Crohn's, too, and about 10 years ago I had a reversal.  I couldn't wait to have it done...even tho I had had a WONDERFUL three months with an ileo. 

My body had healed from my surgery complication and I was ready mentally to have it done.  With me, since my diagnosis was Crohn's, all the old problems came back...fistulas being the worst and I even developed another stricture in a place that surgery was almost impossible.  Since I knew what life with an ileo was like, I went back into surgery, and came home with another!

That being said, that was my situation, and EVERYONE IS DIFFERENT.  The reason I told you that is that you have to do what is right for you...you need to be 100% behind what ever situation you decide!  I don't know what it is like in the UK as far as getting into surgery...but have it done (if you want), get through the recovery and live your life...if you have problems down the road, you know what the ileo is all about, there's no secrets and you can make a decision then if you have to...nothing ventured, nothing gained:)

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