Crohns never sleeps -just like rust

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.

:welcome: to the forum! Wow, you have had more than most have had here. You must be so tired of it all. I too have Kidney stones and have had 4. They are caused more often from resections. I too have the calcium oxalate stones. Lithotripsy was murder. I avoid greasy foods and high fats, because I dont want stones. I also never drink tap water, I have a reverse osmosis and UV running through my water. I have had 2 resections and been on every med available. Still waiting for my gp and gi to make up their minds which Gi they are sending me to, my current gi is retiring and the new on isnt experienced enough for me, ya , hard case I am. YOu too sound the same. I hope they find a cure too, I do volunteer and donate. Awareness is needed for this disease.

Glad you found us, we are a motley crew, join in!

Hi Roxymusic and welcome! Oh boy, you have had a tough go of it, but you still have a great attitude.

I certainly hope Remicade or whatever new treatment plan you try will get you back to doing the things you love. You are obviously an active guy, and I hope you can enjoy living life to the fullest again very soon. Hang in there!

Greetings and welcome!

WOW! You've got quite a story, thank you so much for sharing it.

You mention the issues with your fingers and toes and also the monthly B12 injections. What was your B12 serum level the last time you had it tested and when was that test?

I hope you stick around and become a regular part of the community, I am sure you have much wisdom to share

All my best to you!

B12 level

I don't think I have ever really known myself. I went from every
Three months since the 80s to once a month in august this year. I did have bloodwork around then, I'll try to find out.

That your fingers and toes are losing sensation screams peripheral neuropathy due to B12 deficiency to me. Your levels may be way too low despite supplementation so yes, please try and find out.

Lyrica and neuropathy

I was generally low to normal on b12 counts. I had frequent bloodwork while on imuran in the mid to late 90s. But the doctors didn't start more frequent injections until this august. I had what is known fondly as the frog leg jumping needle nerve test around 2004 or so and was told it wouldnt get any better.

I can always tell now when level is low, toes mostly burn at night. I'll try to find the actual numbers from the dr office.

Lyrica

2004 or so, maybe a bit later was when I was started on lyrica which does do some good. I can tell when I forget or delay a single dose.

An EMG? If so, good times. And by good times, I mean PTSD inducing torture chamber.