When I was 16, after every meal I had to loosen the belt, never knew what it was, just discomfort. Then i would go out and play all the sports all the time. Then just before starting college, appendicitis that was diagnosed as regional enteritis by the dr who delivered me. 7" resection. He had read about it only. 6 hour surgery, I went squirrel hunting with my dad 7 days later. I was sore for a long time after that, but at the time hunting was fun. (I don't anymore)
Dr. Snow, centralia, il was my dr then.
I never recovered well from that surgery. I stepped in a hole a fell on my side, dr meadows was a gastro guy at the iu med center that looked for internal bleeding after about 15 prostate exams by students. I got my first prednisone therapy that same year, I walked the halls of iupui many times blind with pain.
In 1974 I had surgery for adhesions at iu med ctr. Went through many therapies until 1984. Best therapy was getting married in 1977, although we
are now both thinking she might have been better off with a nursing degree.
The bad one, fistula they finally determined, fecal material all through the abdominal cavity. 5 weeks in the hospital, 2 surgeries and three weeks of no food. Another 9" of bowel resected and gone. My young kids came in to see me weighing under 100 pounds. They had Micky d burgers, I had ice chips. I
learned to enjoy Brian Eno's "ambient music for airports" because everything
else drove me crazy. Dr. Bash, started treating me and I stayed with him for
over 25 years until he retired. A great doctor.
I recovered ok, started playing league softball and basketball and finally got
my degree in 1990. Many more prednisone therapies (I learned to never want
steroids.) in the 1990s. Another 8" resected in 1994. One end still showed
crohns. After a month out of the hospital and off prednisone I had another flare up and learned the joys of pentase and imuran. Finally got off imuran as
they learned what long term effects it has.
An odd abscess appeared by the large/small intestine junction where all the
surgeries had occurred. They tried needle draining three times over the years
and always failed. They removed it in 2007 day glow green and the size of a
softball. I received a nice surgical hernia and a 50# carry limit from that
surgery. They do not want to do anything because there is just nothing but a
lot of mesh they can do to fix.
Fingers and toes are losing all sensation last 5 years due to crohns or imuran
or prednisone. Toes are on fire now, I take lyric, it helps but not all the time.
My veins are gone, mostly they take 2-3 tries in the hands. I take allopurinal for gout.
Can you say kidney stones? I am up to 9 since 1996. In august this year I
played my last competitive game of rough 3 on three basketball. Then the
4mm kidney stone came in sept after a week of trying to pass. The ER couldn't
find a vein and gave me shots in the legs - 4 tries. I visited my new gastro around this time, he wanted me to have a hose job, i said wait until the stones are done. The November stone was 6mm and required surgery and a stint. I
was miserable thinking why did I have so much "D" along with the stone
misery. The stones are potentially caused by my inability to absorb calcium
oxalate or so the kidney dr thinks.
So I had the colonoscopy last weds, I have been varying between 7-10 painful
movements per day for the last two months. I sort of saw lots of nasty spots on the photos but i was plently groggy. My dr is pretty sure I should go with
remicade but until the biopsies are back.....might be even worse. I'm supposed
to know tomorrow.
So those of you who think this sounds grim, yeah, all this stuff hurts,
sometimes the wife shoves the monthly b12 inj too hard too, but I will play
basketball again, I will dive for a volleyball again, I will ride cross country on
the bike again and fish for hours again.
Thanks for listening, after over 40 years with the side effects, the insurance hassles, and the ancillary issues even if they find a cure, crohns is always right next to me.
Dr. Snow, centralia, il was my dr then.
I never recovered well from that surgery. I stepped in a hole a fell on my side, dr meadows was a gastro guy at the iu med center that looked for internal bleeding after about 15 prostate exams by students. I got my first prednisone therapy that same year, I walked the halls of iupui many times blind with pain.
In 1974 I had surgery for adhesions at iu med ctr. Went through many therapies until 1984. Best therapy was getting married in 1977, although we
are now both thinking she might have been better off with a nursing degree.
The bad one, fistula they finally determined, fecal material all through the abdominal cavity. 5 weeks in the hospital, 2 surgeries and three weeks of no food. Another 9" of bowel resected and gone. My young kids came in to see me weighing under 100 pounds. They had Micky d burgers, I had ice chips. I
learned to enjoy Brian Eno's "ambient music for airports" because everything
else drove me crazy. Dr. Bash, started treating me and I stayed with him for
over 25 years until he retired. A great doctor.
I recovered ok, started playing league softball and basketball and finally got
my degree in 1990. Many more prednisone therapies (I learned to never want
steroids.) in the 1990s. Another 8" resected in 1994. One end still showed
crohns. After a month out of the hospital and off prednisone I had another flare up and learned the joys of pentase and imuran. Finally got off imuran as
they learned what long term effects it has.
An odd abscess appeared by the large/small intestine junction where all the
surgeries had occurred. They tried needle draining three times over the years
and always failed. They removed it in 2007 day glow green and the size of a
softball. I received a nice surgical hernia and a 50# carry limit from that
surgery. They do not want to do anything because there is just nothing but a
lot of mesh they can do to fix.
Fingers and toes are losing all sensation last 5 years due to crohns or imuran
or prednisone. Toes are on fire now, I take lyric, it helps but not all the time.
My veins are gone, mostly they take 2-3 tries in the hands. I take allopurinal for gout.
Can you say kidney stones? I am up to 9 since 1996. In august this year I
played my last competitive game of rough 3 on three basketball. Then the
4mm kidney stone came in sept after a week of trying to pass. The ER couldn't
find a vein and gave me shots in the legs - 4 tries. I visited my new gastro around this time, he wanted me to have a hose job, i said wait until the stones are done. The November stone was 6mm and required surgery and a stint. I
was miserable thinking why did I have so much "D" along with the stone
misery. The stones are potentially caused by my inability to absorb calcium
oxalate or so the kidney dr thinks.
So I had the colonoscopy last weds, I have been varying between 7-10 painful
movements per day for the last two months. I sort of saw lots of nasty spots on the photos but i was plently groggy. My dr is pretty sure I should go with
remicade but until the biopsies are back.....might be even worse. I'm supposed
to know tomorrow.
So those of you who think this sounds grim, yeah, all this stuff hurts,
sometimes the wife shoves the monthly b12 inj too hard too, but I will play
basketball again, I will dive for a volleyball again, I will ride cross country on
the bike again and fish for hours again.
Thanks for listening, after over 40 years with the side effects, the insurance hassles, and the ancillary issues even if they find a cure, crohns is always right next to me.