what about the operation?

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Hopeso
Regular Member


Date Joined Jun 2004
Total Posts : 231
   Posted 12/3/2004 3:26 AM (GMT -6)   
I think I could get used to the bag and I am not thinking about the jpouch, but at 53 yrs old and being anemic from all this UC, I am wondering about living trhough the operation.  I won't be able to have the laporoscopy surgery, as I have to have a hernia repair just a couple inches above where they usually start the incision, and so I will be cut from sternum to as far down as they need to go.  This will be a big incision, and then I guess I will have another one to remove the anus.  I have a history of extensive endometriosis so they may have to do some cleaning up in there too.  Anyone think I can make it?  Have most of you had the laporoscopy surgery?  Thanks, Hopeso ( from the UC forum) 
 


Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 12/9/2004 9:01 AM (GMT -6)   
Hi Hopeso.

I Think I had about 22 stapels made of Titanium(sp) to put my wound back together after they removed my colon. I didn't have any problems what so ever during or after surgery. Are you having rectum removal at the same time or at a later date? I am on the list now for mine to be removed. It's 2 years since my Colon was removed but I have still got UC in the rectum so it has to go. Like you,I have decided not to go for the J-pouch for lots of reasons although I am told it is an option for me.

I know you have a couple more things for the surgeon to sort out than I did,but I don't see why you shouldn't come through with flying colours. Are they giving you iron etc to build up your blood before surgery?

I wish you all the best.

Sue



red
Regular Member


Date Joined Oct 2003
Total Posts : 25
   Posted 12/9/2004 12:05 PM (GMT -6)   

Sue,

I was just wondering why you chose not to do the j-pouch.  I am scheduled for part one on Monday the 13th and sre still having second thoughts about the pouch.  My surgeon says I amd a great candidate since I am so thin and the outcomes are great.  My GI says I have a 50/50 chance of doing well and tolerating.  What are your thoughts. I know that I can reverse later if I can't handle but that brings with it a whole nother group of problems.  Please let me know.                                                   Thanks

                                                                  Sharon

                                                                    (Red)


Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 12/9/2004 12:50 PM (GMT -6)   

Hi Sharon.

Well it has been a very tough decision and I have thought about it lots,but here are my main reasons for deciding against the J-pouch.

1, Although I know everyone is different,I don't want the first year after my op running to the bathroom up to 12 times aday.(worst case) That would be too much like having UC back again.

2, Even if the J- pouch worked well for me I would still have a good chance of developing Pouchitis from time to time which would mean having to take Antibiotics. I know that might seem like a small price to pay for some,but again I have had enough of Medications and the side affects that come along with them,so If I can avoid them then all the better for me.

3, My main reason is that at the moment I have what I would say is as perfect a stoma as you can get. I have only ever had one leak from the bag, In nearly 2 years I have eaten pretty much anything I have wanted (although I am especialy careful with nuts)and so far I have never had a blockage. If I opted for the J-pouch and then it had to be removed,then Obviously I would have to lose a certain amount of small bowel. not only could this mean that I might not beable to absorb B-vitamins properly any more because absorbsion of these is mainly in the Ileum.,but there is no guarentee that I will get a stoma as good as the one that I have now.

We all have to decide what is best for each of us.(unfortunatly no one else can do it for us lol) But for me my motto in this instance is "If it aint broke don't fix it"

All the best for Monday.

Sue 



Hopeso
Regular Member


Date Joined Jun 2004
Total Posts : 231
   Posted 12/9/2004 5:01 PM (GMT -6)   
Sue do you still have your rectum? I guess they do it at the same time as the ileostomy. Hopeso
 


red
Regular Member


Date Joined Oct 2003
Total Posts : 25
   Posted 12/9/2004 11:16 PM (GMT -6)   

Sue,

Thanks for the response.  I have to laugh because all the reasons you gave for not choosing the j-pouch are all the exact reasons I am contemplating not doing it also.  I have learned not to eat but two times a day so that I don't go to the bathroom 6-8 times per day.  Why would I want to go back to that with a j-pouch and then have problems with constant butt burn from the acids.  My GI is afraid that I want eat at all if I have the pouch and loose too much wieght.  I and a whopping 98 pounds now.  I am slo worrried about pouchitis.  I have been on steroids for seven years straight now with breaks of up to three weeks max every 4 months.  The side effects from long term steroids are horrible.  Why would I want that and more meds.  I doing this to get away from the meds.  I also understand the long term effects if I reverse the pouch from intolerance.  My GI is also concerned about that.  These are all the concerns that I have also.  Some people say they have no problems with the pouch and love it.  I  just don't know which way to gamble.  I don't want my family to think I'm a failure if I don't try eveything.  I am just so stressed out about the best way to go.  I see the surgeon in the morning and go for my pre-op.  I guess I will have to talk to him again in the am.   Thanks for your feedback

 

                                                                 Sharon


Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 12/10/2004 3:48 AM (GMT -6)   
Hi again.

Hopeso- I do still have my rectum at the moment but I am on the list for it to be removed. One reason they didnt take it when they formed the Ileo was because I was so ill at the time and they decided that I would cope better with surgery done in 2 stages. And also No one had ever discussed with me the option of a J-pouch so I think they wanted to give me time to decide what to do about that. If they had taken the rectum at the same time and sewn up the back passage,that would have been it and I wouldn't have had the J-pouch option. Mind you,now I have decided I don't want the J-pouch anyway,I wish it could have been done all at once. Oh well we can't have everything can we lol.

You know looking back, I feel that someone was amiss in not explaining to me what would happen if I came to the stage where sugrgery was needed. I had UC for 25 years,so why no one explained all these things to me before I don't know. At least then I would have at least known what was on offer to me. Thank goodness for boards like this one thats what I say.


Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 12/10/2004 3:54 AM (GMT -6)   
Sharon-

It is a tough decision to make isn't it. The trouble is that once the Rectum has gone and you are all sewn up,well thats it,no choice for a J-pouch anymore. I think thats why it is such a difficult decision to make,because that choice will no longer be there, and I don't want to be thinking "what if the J-pouch could have worked for me" But even though I know that might be my thoughts after it's all over,well I still don't want to take the risk of losing my perfect little stoma for a rubbish one lol.

Sharon, I know that you want to also do right by your family,but at the end of the day,this is your body and your decision. Your family aren't the ones that have to live with the decision for the rest of their lives you are.  I know that the thoughts and feeling of family are important, but like I said it's how you feel that is most important.

Sue


Post Edited (bag lady) : 12/10/2004 3:07:50 AM (GMT-7)

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