I am having a reversal this fall after a year and five months

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Bloodhound
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Date Joined Jul 2008
Total Posts : 4
   Posted 7/7/2008 7:22 AM (GMT -6)   
Has anyone had a reversal after that long and is the effect much more traumatic on the colon?
My ileostomy was done because my doctor perforated my rectum after surgery on a polyp a year and four months ago. I developed an abscess which developed two fistulas. He felt the ileostomy (done June 07) would allow the abscess heal. He then found out after six months and multiple drains in the fistula that there were two fistulas and that he had not drained both. He then put a collagen plug in in March. My surgery was scheduled and before that, I had an MRI. They found that it hadn't healed and my surgery was put off - AGAIN!!!

I am worried about my colon getting back to normal. I am worried about the fact that they might not be able to reverse it. I am worried - and tired of all of this, but am actually very happy to be feeling good after all the infection last year.

Bloodhound

suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 7/7/2008 8:00 AM (GMT -6)   
Yes, people have gone several years between surgeries. Try to focus on the positive, as hard as that might be.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 7/7/2008 9:41 AM (GMT -6)   
I had my reversal on May 28th which was almost 3 years since I had the ileostomy. I had about 50% of my colon removed during my original surgery. So I was also concerned how my "revised plumbing" would work. Progress has been slow but steady. I think suebear hit it on the head, focus on the positive.

I think it's important, prior to the surgery, to build yourself up physically and also to research diet issues and have the proper medical support (internist, GI doc, etc.) in place.

Good luck!

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 


Bloodhound
New Member


Date Joined Jul 2008
Total Posts : 4
   Posted 7/7/2008 11:09 AM (GMT -6)   
Thank you so much Sue and Richard. I have just started researching what a reversal would be like since it hasn't been in the cards up till now. You are quite right - being healthy, taking care of our bodies, continuing with our lives is the best of ideas.

I lost my sister to colorectal cancer in November. There are a lot worse things than what I have been through. She worked up until August and kept her spirits up, determining that her life would be as full as she could make it.

lipgloss
Regular Member


Date Joined Jan 2008
Total Posts : 70
   Posted 7/9/2008 8:50 AM (GMT -6)   
so sorry to hear about your sister.
keep ur spirits high and remember everyone on this site is great, they really helped me through my ordeal in january. and everyone will be thinking of you and praying for you.

hope everything goes well

samie xxx

Bloodhound
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Date Joined Jul 2008
Total Posts : 4
   Posted 7/9/2008 12:36 PM (GMT -6)   
Thanks Samie,
We are given some interesting journeys in this life. I am new to this forum, but I think I should have been reading it a year ago.
Bloodhound

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 7/9/2008 4:56 PM (GMT -6)   
Hi Bloodhound!

I've been away from the forum for a while so I'm playing catch up. You and I have very similar stories. I too had to get a "temporary" (it was supposed to be for only three months) ileostomy because after having some colorectal surgery, I began to go septic so my doctor decided to put me back under because I was in so much pain and found that I developed a horrible abbess. After my second surgery, everything fell apart within a month because of the infection. On my third surgery, my doctor fixed everything he did once again. In addition, fixing a fistula that developed and gave me a loop ileostomy. Two months past and I went under the knife again to try to fix the fistula once more. He did this by doing a "z" plasty. By my next visit, my doctor and I were discouraged. The fistula would not heal. He then referred me to a partner in his office who told me to wait three months - thinking it may heal on it's own. I decided to look for another doctor. I found an excellent surgeon at the Cleveland Clinic. She performed my fifth surgery. We're hoping this corrected the fistula. My next visit is to meet with a plastic surgeon that will hopefully, be able to do some reconstructive surgery. But first, my colorectal surgeon will check to make sure I'm completely healed. My last surgery will be to reverse my ileostomy. So, my three-month temporary ileostomy will probably be "two years" (hopefully, no more than 18 months!)

All this is from a doctor performing an episiotomy on me 22 years ago when I gave birth to my son. I received a fourth degree laceration and over the years, I've lost muscle and nerves.

I too lost my sister from a horrible disease. She died one month shy of her 46th Birthday - August 15, 2006. She had kidney disease from the time she was 15 years old. (Our dad donated a kidney, but they had to remove it because she rejected the "rejection" medicine.) She fought a hard battle, but was such a strong, positive individual. I totally admired her. She worked her way through college, did dialysis three (or more) times per week, and worked her way up to CFO of her company before she slowly went on full time disability. She never gave up.

We have to be as strong as our sisters were.

Take care!
Mary

Bloodhound
New Member


Date Joined Jul 2008
Total Posts : 4
   Posted 7/9/2008 8:59 PM (GMT -6)   
Thanks Mary,
It is so good to hear these stories from other people.
I have been at a Boston hospital for my procedures. My doctor put a collagen plug in the fistula to, hopefully, promote the healing....I'm sure it will be healed at some point. My problem is that I am a teacher, so it is hard to take time except in the summer for the surgery especially knowing how long it is until you feel normal again with frequency, etc. ...not the kind of things I want to say to my kids in my class: "Sorry - I have to go again!"
But I'm sure I'll get through it. Anticipation is the worst of anything. I think I can deal with anything while it is happening.

I am so sorry about your sister. What a fighter.
Take care,
Bloodhound

TJCCRN
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 7/11/2008 5:05 AM (GMT -6)   
Mary and fellow ostomy survivors..... Hello, my name is Theresa and had my ileostomy reversed 1 month ago after having emergency surgery for a ruptured diverticulum in March of '07. I am a nurse educator and am just now getting back to work. Having a problem with diarrhea and rectal discomfort. Just curious if this will improve with time as the doctor assures me it will. I still have "control" but it is quite an issue right now. Any suggestions as to what I should eat? Thanks for "listening" and hope to "talk" to this group again soon. Theresa

sweet cheeks
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 7/11/2008 1:57 PM (GMT -6)   
I am considering a ileostomy reversal but worried of the length of time needed to spend in hospital i suffered with pancretitus which caused an absess puncturing my bowel that is why they said it will be needed for me to have it for at least six months to a year spent several months in hospital so im scarred. jacksonator

sweet cheeks
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 7/11/2008 2:25 PM (GMT -6)   
can anyone help me i had an ileostomy done about nine months ago after getting acute pancretitus which punctured my bowel was told i would have to wait six to twelve months for a reversal could you tell me how long the stay would be in hospital pleases could you also tell what is a j pouch i have never heard of this. PLEASE NEED ADVICE.

TJCCRN
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 7/11/2008 5:38 PM (GMT -6)   
Sweet Cheeks, an ileostomy reversal is not USUALLY as traumatic as the surgery necessitating the ileostomy in the first place. You were quite ill if you had an acute episode of pancreatitis. I had my reversal done on Wednesday and was discharged in a week. Really did quite well except for this very annoying problem with diarrhea. A good site for information concerning j pouch's can be found @ http://www.j-pouch.org/Whatis.html
Hope that is helpful. Theresa

sweet cheeks
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 7/12/2008 6:30 AM (GMT -6)   
thanks TJCCR for the reply were there any complications i here so much going wrong it just worrys me glad to hear that yours was a complete success the diareha will probely get once your digestigtion starts working properly. :-)

TJCCRN
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 7/12/2008 1:11 PM (GMT -6)   
The only complication so far is the diarrhea. I had my staples in for a full month because I had a wound vac on for three months last year and my stomach just needed more time to heal properly. Looks awful but.... who cares? I am just thankful to still be around. My ileostomy stoma site is still sore, with a small opening I'm having to have packed every three days but that is really getting better too. We always here about the horror stories and not much about the enormous success in these surgeries. Hang in there :)

sweet cheeks
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 7/13/2008 5:10 AM (GMT -6)   
thanks TJCCRN for the advice it was very helpful hope you have every success in your health. sweetcheeks.

39FOREVER
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Date Joined Jul 2008
Total Posts : 2
   Posted 7/14/2008 2:18 PM (GMT -6)   
Hi i had my illeostomy surgery in June 07 after a month in hospital but was ill again a week later and had a second operation for acute peritonitis making me really ill and on life support.  Two months later got home after scaring my family half to death and having to learn to walk talk and eat again.  Decided after all this trauma that I would not have the reversal but as time is a great healer may now have changed my mind but you keep hearing stories about the length of time it takes to recover from this operation and I just wondered if it was dependant on how healthy you are or is it different for everyone?  I just feel it a really hard decision to make as somedays I think Ill just keep the bag, somedays I hate and would have it reversed in a minute and other times I wish there was no decision to make.  Do other people think like this,  what made your mind up?  I am still quite young and think I need to decide while I am now well but it terrifies me

sweet cheeks
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 7/15/2008 6:43 AM (GMT -6)   
To 39forever i know how you feel i felt just the same i spent 28 weeks in hospital due to acute pancreatitus on life support machine myself the reason im seriously considering a reversal is because im also 39 and want a normal life with the bag your always very consicious on whether people can smell you and makes you feel uncomfortable when you cant wear nice clothes without it showing to a certain ecstent.

Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 7/15/2008 9:41 AM (GMT -6)   
Dear Sweet Cheeks, 39Forever & TJCCRN:

Wow. I can't believe how our stories are so similar! I had necrotising pancreatitis which resulted in surgery that removed 2/3 of my pancreas, gallbladder & parts of my large & small intestine. I was touch and go for months (I was in the ICU for 6 months plus!). I was so physically debilhatated that I could barely sit in a wheelchair. I was down to 115lbs. and I'm 6'3"! But over time I healed.

I had the ileostomy for almost 3 years. I was feeling good, I returned to work and started to resume my nnormal life (except for the bag). However, I did have persistent hydration problems and I had a PICC line and was taking an IV of H20 daily. I decided to go ahead with the reversal.

The transition has not been without complications. First I was in the hospital for 18 days instead of the 7 I originally planned. I lost about 20 lbs. and I still have persistent diaharhea (but it's getting better). Now that I am starting to feel better I'm beginning to feel good about my choice. There were times, however, when I had my doubts. I'm still a work in progress.

As was stated before, I think preparation is the key to the reversal. Build yourself up as best as you can beforehand and do lots of investigating & research. Prepare yourself mentally. It's really tough to take on the surgery and recovery when you have already gone through the "ringer". But, try to concentrate on the long-term benefits and realize that things will get better. My hydration problem seems to have been solved and I feel stronger each day.

Thank you all for sharing your experiences. I'm sorry we all have to go through this but it is good to be able to speak to others who know what we are going through.

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 


39FOREVER
New Member


Date Joined Jul 2008
Total Posts : 2
   Posted 7/15/2008 9:44 AM (GMT -6)   
i dont have a problem about smell or anything like that. Its just that now I feel so much better I feel I need to think this through properly. I am a size 8/10 uk size and wear what i want and nobody has ever noticed my bag. I dont see it as a problem to hide it would probably be them that would have a problem We live in a world were bowels are like top secret and i am not embarassed about it. but on saying that today at work it has really annoyed me and i feel today i could throw it and just get back to being me again but i am absolutely terrifed of going back under the knife

sweet cheeks
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 7/15/2008 11:45 AM (GMT -6)   
Dear indabag, thank you for your advise and support on this subject it was very helpful sometimes my husband finds it hard to understand how i'm feeling as he went through everything with me so find it hard i only stumbled upon this website by accident while looking up ileostomy reversal and found it facinating that there were people i could talk to. sweet cheeks

sweet cheeks
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 7/17/2008 7:04 AM (GMT -6)   
can anyone tell me if it is normal to start passing solid motion while still having an ileostomy or does that my bowel is ready to be reversed thank you. confused
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