surgery question

[marie900]

Does anyone have FAP syndrom and also because of this they are removing my large intestine and rectum but I will not ent up with a bag. It's called IPPA surgery I think. What can I expect and will I loose wieght and have a hard time keeping a good wieght?

[Morecambe]

Hi - although I was examined and "measured up" by a "stoma nurse" for a colostomy bag prior to the operation, my surgeon said that there was only a 2% chance that I would require a bag.  I was lucky and did not need one at all.

It may be worth asking your surgeon what are the reasons for having to affix a colostomy bag.  My understanding is that it may be necessary if the "geometry" of the two exposed ends of your intestines are not properly "lined up".  However, I have also heard that some surgeons are hesitant to "close you up" after the operation in case a slight leak develops due to incomplete suturing of the two open ends of your intestines.

Do ask your surgeon about this.  In my opinion it should be possible to close the two exposed ends of your intestines so that they are 100% "leak proof"

In case you do have to receive a colostomy bag, do ask the surgeon to guarantee that it will only be for a short time and that it can be removed.

Good luck - keep in touch

Morecambe

[marie900]

Did you have a temporary colostomy bag if so can you give me some insight on that. Thankss

[Morecambe]

Hi - I ate pretty much what I wanted after returning home.  However, you will find that your stools will become much more liquid and you may need to modify your eating pattern to reflect not only what you enjoy eating - but also possibly, with a view to modifying the consistency of your motions.

In the initial stages I found that I needed to go to the toliet to do a #2 6-8 times per day and 2-4 times in the night.  This decreases over time to the present level of ~4 times per day and 0-1 times per night.  Although this may seem excessive - especially in the weeks after the operation - I always say (especially to women) "look you probably to to the toilet ~8 times per day to do a #1 so all that you will now be doing is a #1 and a #2 at the same time".  Also I do some of my best thinking on the loo......!!

Back to diet - in my experience the liquidity of your motions can be modified to a "muddy/sludgy" consistency by eating plenty of fibre.

For example a home made muesli (soak oats, plenty of added bran, grated apple, lemon juice, nuts etc in milk until it looks like "wet cement") for breakfast.  Also wholemeal organic brown bread/toast.

For lunch perhaps pulverised vegetables and/or fruit as well as a brown/organic bread sandwich.

Also you can try yoghurt to which bran is added.

Normal evening meal - but with fruit and vegetables.

You must drink ~2 litres of water per day.

It is a bit like throwing sawdust onto a liquid spillage on the kitchen floor to absorb excessive liquid.  Hopefully this will change the consistency of your motions

Also do take care to cope with anal soreness by making the last toliet paper wipe with toliet paper dampened with soapy water.  When you are away from home have a packet of very mild baby wipes to make that "last wipe".

Regarding the number of days in hospital, my recollections were that the surgeon was happy to let me go home:-

- when the wound looked "normal"
- when I felt stronger
- when I was able to eat and stools were being passed normally through the modified intestines
- when there were no signs of any leakage which could have eventually caused peritonitis
- probably other aspects about which I was not aware

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Hope this helps a bit - do come back if there is anything else of course

Good luck
Morecambe

[marie900]

Where you on a stricked diett after and for how long. If they can avoid a temorary  bag I would think they would want more than three days in the hospital but mabe not what are your thoughts.

[Morecambe]

If the operation can be performed laparoscopically then there is much less trauma to the body and perhaps the chances of going home after 3 days are better.  If the full "cut me open" surgery is performed then I think you will require ~7 days - more of you are unfortunate to develop an ileus.

This is a big operation - obviously to a greater degree if the surgeon makes the large incision and if the period under anaesthetic is ~4 hours.

Don't rush your recovery.  If you are travelling 5 hours home then you need to take it easy.  They will (should??) tell you not to drive for several weeks.  Remember that when travelling home you will need plenty of opportunities to go to the toilet.

Good luck and I hope it all goes well.  Do revert with any further questions

Morecambe

[marie900]

Thank you so much for the information it was very helpfull. I was told that because I am young and healthy  that there was a good chance I could only have to have one surgery insted of having a temporary bag for 6 weeks, and a good chance they can do it laperscopic, but I won't know for sure on either one till after the surgery. They also gave me a time or 3 to 7 days in the hospital, witch everyone I have talked to thinks that to short (I might add I am traveling 5 hours to have surgery and don't wan't to go home to soon being there isn't anywhere to go if I have any emergency) If you have any more info that would be great.

[Morecambe]

Hi - I underwent a total colectomy four years ago.  Although I retained my rectum, I guess your operation will have similarities to my own.

May I invite you, as a first stage, to search out a posting by Renae 241 on 20 May to which I responded.

Hopefully this will assist you.  There is no reason to lose weight in the long term.  Probably you will lose weight immediately after the operation because you will be fed via I.V. but with the return of a normal appetite your weight should be stable.

Actually I put on some weight because my operation coincided with my retirement from work and I guess that I have become a bit lazy/relaxed - and my wife feeds me much better than the sandwich shop at work!!

Please revert of I can help further.

Good luck
Morecambe