Hi Judi,

Although I too am new to the illeostomy board, I am not new to living with
Chrons. For 33 years now I have lived with chrons and over the years, and
several gastro specialist changes, I have learned more as research has improved.

I too as you, was under the belief that once sections affected by this
disease were removed, that all else should, or would improve. However I learned
this is not so in all cases, since Chrons can and does enter into many internal
organs of one's body. For example, I was not aware that one could have chrons
of the throat area, until a scoping by mouth was scheudled for me, and I asked
why. I also did not know one had constipation with chrons, given I had only
had diahera bouts.

When I had thought my chrons to have been in remission, it was internally
and even silently deceiving me. I was scheduled for my yearly scoping, thinking
all would come out clear, but my husband and I got the shock of my life. Seems
from my last scoping to this present one, a large mass had been growing in my
large intestine, unknown to me. Surgery was scheduled to remove the mass,
biopsy it, and esquip me with a illeostomy. The suregry need to be done
quicklym due to the rapid growth of the mass, so I didn't really have much time
to think over my illeostomy, which was good for me. The mass had consumed 85%
of my large intestine, which had to be removed, and turned out to be cancerous.
Again, I wasn't given much re-coup time after my illeo to begin my chemo now
needed.
I am very blessed to have a suport spouse who makes sure I have this
essential yearly scoping done. I am also blessed to have a gastro who believes
in moving quickly to take care of what needs to be done. My gastro-surgeon,
also explained to me that by his removing this mass, did not remove the chrons,
because chrons is a disease. The way he explained to me was, he removed this
section which was currently being damaged by the chrons, but this does not mean
that flaare-up won't happen in other areas at any given time. Could be next
week or next year that active chrons could affect another area of our internal
organs. This is why it is extremely important to have a scoping done yearly.
As you now see, in my case it can move rapidly at times, and it can deceive us
by seeming quiet, as mine did.

I have been in remission now for the past 4 years and it appears as though
my heaven sent surgeon got all of the cancer during my surgery. This years
scoping will mark my 5yr cancer free mile mark!! Last scoping showed no signs
of active chrons anywhere. I have chrons patients ask me how I maintain this
remission level, and I first tell them, by the Grace of God. I also live with a
wonderful husband who's great sense of humor has shown me how to rid the
excessive stress once in my life. We all know eating the right foods also helps
to keeps our chrons under control.

Two years ago I had plans for a reversal, but once on the operating table, a
fistual was found and had to be repaired first. This surgery was actually more
painful to recover of than the illeo was. LOL I did appreciate the doughnut
cushion! My husband asked me if I was considering trying for the reversal again
this year, and I told him I now have mixed emotions about it. It doesn't matter
to him if I never have it reversed. I have grown to like not having to wait in
line at a restroom or encounter a dirty restroom or worry about hemmeroids.
LOL(laugh out loud) The only reason I am considering having this reversed is
due to my husband's desire to travel more on his vacations. I still feel
uncomfortable about making bag changes in strange places such as hotels or
freinds whom ask us to stay with them. I have the 2 piece unit and use the
non-disposable bags when at home, but when traveling use the disposable bags.
Can't use disposables to often as insurance only pay for 20
bags per month and they are expensive.

I hope I didn't depress you or worry you about the information shared,
because this was not my intension. I mainly wished to make you aware and answer
your concerns, plus stress the importance of a yearly scoping.

May God Bless,
Your Illeo, friend, Diana

jarm1948 <armbruster@...> wrote:


Hello I have had many surgeries and no pathology to point to
Crohn's. Yet my bowel keeps going bad and I have had 4 more
surgeries since the j pouch was removed. Each time losing more small
bowel. Each time having to get all the scar tissue scraped off my
bladder and everywhere else. The last two times I was in hospital
for a month because the gut didn't want to go back to work! Now I am
having the same kind of bloating and pain as when I had a section of
bowel go bad. It hurts so much especially if I sleep on my back,
that I need medication for pain. It hurts into my sacrum and right
hip. The last time this happened I had every test in the world to
see what was going on but they found nothing until they opened me
up, and there was about 10 inches of bowel that was "bad".
Apparently I have ongoing IBD that just keeps eating away my gut. Is
there anyone else out there that has similar problems? I was under
the impression that after the colon was removed I would be ok. That
hasn't been true.
They put net in the last time to keep bowel from scarring to my
bladder, it also didn't want to work very well after this last time
of scraping bowel off it. I am tired of all the pain. Now I am out
of insurance too.
Any feed back out there?
Judi








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