Yes, with an ileo you have to wear a bag 24h/day. But I cannot see the problem accepting this when you do have an improvement of your pain etc. I think it is a matter of choice of priority.
Sorry, I might be quite strict in this regard but I am 24 years old, and so far, I have been unable to live a normal life for most of my living time; in the recent years I have been unable to do anything regarding education etc and I got to the point when suffering was so bad that I wished to be released by it in any way - even if this would mean dying, and of course, wearing a bag is a much better option. I had to fight for getting a bag since my docs did not want to do it - partially because there were many misdiagnoses in the past which still acted like a stigmata , partially because they considered a bag as not "suitable" for a young woman. If I had had cancer they would not have talked like that.
I also have to wear a permanent bladder catheter, since I cannot empty my bladder by my own (bladder is affected as well). I should have surgery since a permanent bladder catheter, even through the abdominal wall, is not a long-term solution but nobody wants to do it or cannot do it.
I am in pain from recurrent infections and spasms.
I also have a hickman catheter for intravenous feeding I do not use any more. By means of iv-feeding I was able to improve my severe underweight.
I have had three bowel surgeries and numerous little procedures so far, and I think more surgeries will come in the future.
Biggest problem is still dealing with the ignorance of docs here.
Your transit from the small bowel studies could be prolonged by the backed up colon and the small bowel hernia..such things can have a huge impact on motility, too. I was told that tranist times from the small bowel studies are extremely variable even in healthy subjects and that this test is inaccurate for determining transit. You would need a scinitgraphy of the tract to determine the transit time. Anyway, regarding the small bowel transit in the follow-through up to six hours is sometimes considered as normal. So 4 hours can be completely normal or it may be slightly prolonged but you can't say this from this study. Moreover, if you drink the contrast dye one must consider the gastric emptying time. If this is slowed down, then your small bowel transit time seems to be longer than it actually is. With my ileo I already had transit times from oral intake to output up to 18hours and more when most people with ileos have a transit time of less than 2 hours.
As far as eating is concerned I am able to eat by mouth again but I am extremely limited in variety and amount, and eating is often still associated with an increase in symptoms, but compared with my preoperative condition that's really ok. You can't compare this, actually.
A bag is not a disgusting thing for me, especially an ileo, since the small bowel does not produce actual stool. In contrary being 8 hours plus occupied with getting my bowels "moved" -many times invain- that was disgusting and extreme painful.
Again, I think it is a matter of choice, one must know what is most important in life.
Post Edited (pelztier86) : 12/4/2010 7:50:24 PM (GMT-7)