Colostomy Reversal (VATER SYNDROME)

Hello everyone,
I had a question about reversal of a colostomy. I have had my colostomy since I was born and had it reversed just a year into life. Then after another year or so things were not working and I was getting enemas and rashes so they gave it to me once again. Now at 24 I want to give it another try and see if it’s possibly. Does anyone have stories of having it their whole life and then getting a reversal and hopefully successfully??
I also have something called VATER syndrome, it is very rare and if I recall I had an imperforated anus and this is one of the main reasons that I had the colostomy. My mom also believes that the docter said that I may have no nerve endings in my colon.

If anyone has a little information good or bad that they could provider for me, I would appreciate it. My whole life has kind of been a struggle with it. I was very athletic but I wasn’t able to do any kind of sports because I would have accidents and I would not be able to keep the patch on. It seems like I still have problems that if I have an accident because it becomes majorly loose.
Thanks!!

0 Replies:
Colostomy Reversal (VATER SYNDROME)

Your Input Or Advice For Reversal

There are so many stories here, I’m well aware that I’m one of the luckier ones. A benin lump turned out to be endometriosis and my colon was disintegrated and couldn’t be connected.

Now I seem to be ready for a reconnection after one colon specialist 6 months ago said I had to loose weight first, a second thinks that not realistic. The tricky part is the blood in the anal mucus that always correlates to my period. The scope indicates Diversion Proctitis (lack of use) but given what started it all- well I’m nervous they’ll go in and can’t reconnect. The plan is a hysterectomy at the same time given my uterus is the size of a grapefruit and clearly misbehaving- but given two c-sections and uterine abladeration that stopped some wild crazy bleeding, it’s not too surprising. I wish I could wait for menopause – but that will not likely happen in the near future as hormone treatments can’t even stop it.

2 QUESTIONS-

  —  What do you suggest or recommend I do to prepare for such a surgery?

  —  After the surgery, what do you suggest or recommend I be prepared for?

Any advice or insight would be greatly appreciated and put to good use.

Thank you,
Rabbit

0 Replies:
Your Input Or Advice For Reversal

Post Ileostomy Loop Reversal Management

I have no one in my circle of friends to go to and my doctors are not invested in my problems, so I would like to ask:  how long does the pain last after loop reversal? Does anyone else have a ‘pointed, hard’ swelling (like the stoma itself) underneath their incision scar? When can I excercise and what restrictions do you suggest after loop reversal?

Also, I was prescribed Tramacet after the original ileostomy and again after the loop reversal. It was very hard to get off with the first surgery and I’m not looking forward to stopping this time, with the pain I still have. Does anyone have suggestions for alternative, Non-addictive but strong pain meds. that won’t give me other problems, like acid reflux or other side effects?

Thank you all out there – I was starting to despair of ever getting support as no one told me about this site.

 

 

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Post Ileostomy Loop Reversal Management

After Reversal Of Ostomy

Hello all,     I had a ruptured intestine and had a colostomy end of December 2010.  I was fortunate to be able to have the reversal done which was end of July 2011.   I am careful with what I eat and up until now I have been feeling good.  I do eat fiber off and on but find that if I have too much my stomach bothers me, feel a little nauseous and I have constipation.  This is my problem now for the past week.   Just don’t seem to be regular.     Anyone else have issues from time to time.    Really nervous about this as I don’t want to go thru any of this again. Thank you all.

1 Replies:
After Reversal Of Ostomy

Ilestomy Reversal

I desperately want to get a reversal and can but not sure until next week when I see my surgeon when I can have it done.  I have an end ilestomy, surgeon did this even though it was going to be temporary because I had had a massive rectocele repair job and he wanted that to heal so didn’t want to do a loop and I still have stool going on the wound.  I am aware that the surgery for an end is bigger than for a loop.  I am terrified of more surgery but want it done ASAP so I can get on with my life.  I want to hear positive stories and how did you cope with pain after op, how long did it last.  I haveno disease so insides will heal.  Is the op a lot worse than having the ilestomy formed.  I suffer terrible anxiety at the moment knowing that I have one more surgery Togo and sorry for that sounding selfish because I know many people would love to e in that boat.  I really need some positive stories please.  Is it really that bad?  Thank you and happy healing to everyone.

1 Replies:
Ilestomy Reversal

Recovery From Ileostomy Reversal

I was worried I would have endless diarrhea after reading some blogs. I am 6 weeks past my reversal surgery and I have never had diarrhea even once. I was very compliant with the food plan my surgeon prescribed. I now have no limitations on food. I’m eating a lot of soluble fiber like beans, salads and cooked vegetables. I have a couple of complete emptying bowel movements a day. 

I wanted to give others support and hope that full recovery is possible and in my case easy. 

1 Replies:
Recovery From Ileostomy Reversal

Colostomy Reversal Guidance Needed

Had a colostomy 5 months ago due to grade 3 sigmoidocele causing complete elimination obstruction. Sigmoid was removed, but the rest of the colon remains. Resection was not done at the time due to severe malnutrition.   I have had ZERO quality of life since then, although it is outputting  fine, this pouch and maintaining it  & the stoma has completely taken over everything I do, along with the near constant discomfort of wearing this pouch. I cannot live like this! Doc seems anxious and enthusiastic (almost too much so)   to do a reversal. Have gotten a 2nd opinion which agrees with that of my surgeon, for the most part.  All I’m hearing is the negative possibilities, neither doc has really given me anything positive to hold on to, but perhaps they are just trying to keep my expectations in check.  I want to get rid of this bag and return to a normal life, but . .  will that happen?  I must have it done IN JUNE to allow recovery time prior to my seasonal business kicking in , so I must make a decision on this quickly in order to schedule the procedure.  

What am I in for? How long in the hospital?  How might my condition be during the transition? Will my life return to ‘normal’ as in when my digestion was working normally?   I have NO HELP at home, I live alone, will I be able to handle the recovery?  I need as much guidance as you all are kind enough to provide. I am terrified of doing this, but more terrified of living another year, or even the rest of my life as I am. 

 

I am meeting with my surgeon again tomorrow (4/19) to hopefully get more details, but I need to be sure I’m getting the right info and asking the right questions.  Thank you !

1 Replies:
Colostomy Reversal Guidance Needed

Reversal

I have had a Colostomy for five years…I have two hernias that have to be taken care of and the surgeon suggested a reversal when they go in to do the hernia repair.  I am very nervous about having a reversal because of the “dumping” stories I have heard about! I have found that my system generally works in the morning, so I plan all my activities for afternoon, which works out well for me.

After over five years will my rectal muscles work correctly or will I be incontenet and always worried and embarrassed to the point I don’t want to leave the house?

Any thoughts from those that have had a reversal?

Thanks,

Becky

 

 

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Reversal

Reversal And Blockages?

I have been home from hospital for 6 days.  In this time I have had two blockages.  This stumps me as I have only abut six inches remaining of colon.    I now have to take stool softener and Miralax daily.    I have never had problem with this prior to my ileostomy.   Now twice in a week is misery.      Is this usual after reversal?     My reversal has 4 anastomotic sites and tons of adhesions removed.    I hope you that have gone thru this can shed light on this.    Thank you

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Reversal And Blockages?