Hi Everyone,
I've had Crohns for over 20 years now. It started for me when I was 20 years old. Back then it started as a blockage in the duodenum. My mother has Crohns so we were not strangers to it and my journey started! After a couple years, I got burned out by the inability of docs to really help my symptoms. I can also remember an upper GI endoscopy without sedation! (don't let that happen to you!) My main problem became diarrhea, gas, and urgency. I usually never had any pain. Looking back now, that was probably a bit of a curse. Not having pain let me ignore my condition and just "do the best I could". For about 15 years I stopped seeing a GI doc and just dealt with my symptoms.
About 4 years ago, I had a yearly checkup with a family doc, and he read me the riot act. Said I was "in denial" and that I should be under a GI's care. After my initial anger, I realized he was right, so I reentered the world of GI docs.
During a colonoscopy 3 years ago, the doc found a mass in my transverse colon. He seemed a bit freaked out by it. I was too! The biopsies came back negative, but he said it really had to go. I used a top surgeon at Mt Sinai and left myself in his hands. In Oct of 08, I had an extended right hemicolectomy. They removed about 1/2 my colon and ileocolic valve. Looking back now, I wish I had pressed the surgeon on exactly what he was going to remove. Since that surgery, my diarrhea has gotten much worse. I had never been woken up by diarrhea, but now it was common to awake 3 to 5 times a night. What a nightmare. I know the hemicolectomy was the proper protocol for my case with suspected malignant tumor. Since my tumor and colon came back completely benign, I just wished they had just done a simple resection.
I recovered from that surgery but was never really the same. The lack of sleep and constant diarrhea were really wearing me down. My local doc would do all he could, but nothing worked to stop the diarrhea. I did my own research and would even recommend things to him, like Questran. Nothing worked. I even tried LDN and the Specific carb diet. I was also on Humira before my surgery and stopped it for the surgery. (I'm back on it now).
About a year after my first surgery, one day I just was not hungry. This was unusual for me. Pain developed and later that night I went to the Emergency room. They admitted me and started the torture. Drink the CAT scan solution when I told them I could not eat anything. One mean nurse just could not understand that! She might as well asked me to run a mile. Anyway they admitted me, and the next day while walking around the floor, I had the worst pain I have felt in my life! Yes, it even beat an old dislocated knee which was the former #1. I barely made it back to my room - probably screaming all the way. That is all I remember until after emergency surgery and I woke up the next day. It turned out to be a perforated and gangrenous small bowel. Go figure, this was completely out of the blue.
They removed about 1 foot of small bowel and sent me home after about 5 days. Once home I did not do well and ended up back in the hospital. My guess is that I was having withdrawal from Dilaudid. That is one powerful pain drug - and I was really enjoying it in the hospital. I read online that one nickname for Dilaudid is "hospital heroin". At home, I was not able to eat much, and was having extreme chemical smell sensitivity, and recurring disturbing nightmares. Not typical for me. Anyway, time and getting some IV fluids in the hospital did the trick and I was released after 2 nights.
About a week before this emergency surgery, a colonoscopy had found some low grade displasia in my colon, with "foci" of high grade. So I was thinking of that during my hospital stay and getting pretty depressed. It was one area of dysplasia out of about 12 biopsies.
A coworker of mine recommended Dr Present in NYC for a consultation. I think my case was getting complicated for my local GI doc. And that is what Dr Present said as he read my sad file. "Complicated". I had read that he does not rush to remove the colon when low grade dysplsia is detected. He recommended a chromoendoscopy with his partner, Dr Marion. Chromoendoscopy is a colonoscopy where they use blue dye to help better detect dysplasia.
I had that done one week ago and I'm waiting for the results.
He also recommended low dose codeine for my constant diarrhea. My local doc received his letter and started me on 15mg. Finally something that worked for me. It gave me control of urgency and I would only wake up at night once or twice instead of 4 or 5 times. But during the day (at work), it really made a difference. No more accidents and close calls.
Ah, I'll also mention I had a seton procedure about 4 weeks ago. I had been living with a fistula and "on and off" abscesses for a very long time. Like my other symptoms, just dealing with it as best I could over the years. I had learned to sit on one cheek for so long it is now a habit! So finally I mentioned this to the colorectal surgeon who had just performed my 2nd surgery. He recommended a seton, which I never heard of. It turned out to be a drainage seton (as opposed to cutting) and I have two of them. I read all I could before my procedure so I knew what to expect. I read that some folks were surprised and horrified to have an open wound after the procedure. The surgeon did not mention that, but I did have one - it was about the size of a quarter, with the seton string coming out. The surgeon also reported that I have proctitis.
Now, 4 weeks later, I'm glad I did this. But the 1st two weeks were so challenging and painful. The slightest tug on the seton string would bring extreme pain. So you can imagine sitting and shifting, and bathroom functions were difficult. I also did not take any time off work, and I sit all day, so that was hard.
So now I wait for the biopsy results - more dysplasia and/or definite high grade dysplasia probably means a total colectomy and Ileostomy. Maybe if the results are similar to before, with just low grade, I'll just play the waiting game with another chromoendoscopy in 6 months.
Anyway, that's my story. I'll follow up in the next few days on what the biopsy results are. Thanks for reading! I'm happy to hear any advice or your thoughts.
-Joe (43)
Prednisone - 7.5 mg (weaning - trying to get off this finally)
Humira - 1 shot every two weeks
Asacol - 12 a day
Protonix - once a day
Codeine - 15mg - 5 times a day
Cortifoam - twice a day - (Dr Present just prescribed this - instead of Rowasa enema)
I've had Crohns for over 20 years now. It started for me when I was 20 years old. Back then it started as a blockage in the duodenum. My mother has Crohns so we were not strangers to it and my journey started! After a couple years, I got burned out by the inability of docs to really help my symptoms. I can also remember an upper GI endoscopy without sedation! (don't let that happen to you!) My main problem became diarrhea, gas, and urgency. I usually never had any pain. Looking back now, that was probably a bit of a curse. Not having pain let me ignore my condition and just "do the best I could". For about 15 years I stopped seeing a GI doc and just dealt with my symptoms.
About 4 years ago, I had a yearly checkup with a family doc, and he read me the riot act. Said I was "in denial" and that I should be under a GI's care. After my initial anger, I realized he was right, so I reentered the world of GI docs.
During a colonoscopy 3 years ago, the doc found a mass in my transverse colon. He seemed a bit freaked out by it. I was too! The biopsies came back negative, but he said it really had to go. I used a top surgeon at Mt Sinai and left myself in his hands. In Oct of 08, I had an extended right hemicolectomy. They removed about 1/2 my colon and ileocolic valve. Looking back now, I wish I had pressed the surgeon on exactly what he was going to remove. Since that surgery, my diarrhea has gotten much worse. I had never been woken up by diarrhea, but now it was common to awake 3 to 5 times a night. What a nightmare. I know the hemicolectomy was the proper protocol for my case with suspected malignant tumor. Since my tumor and colon came back completely benign, I just wished they had just done a simple resection.
I recovered from that surgery but was never really the same. The lack of sleep and constant diarrhea were really wearing me down. My local doc would do all he could, but nothing worked to stop the diarrhea. I did my own research and would even recommend things to him, like Questran. Nothing worked. I even tried LDN and the Specific carb diet. I was also on Humira before my surgery and stopped it for the surgery. (I'm back on it now).
About a year after my first surgery, one day I just was not hungry. This was unusual for me. Pain developed and later that night I went to the Emergency room. They admitted me and started the torture. Drink the CAT scan solution when I told them I could not eat anything. One mean nurse just could not understand that! She might as well asked me to run a mile. Anyway they admitted me, and the next day while walking around the floor, I had the worst pain I have felt in my life! Yes, it even beat an old dislocated knee which was the former #1. I barely made it back to my room - probably screaming all the way. That is all I remember until after emergency surgery and I woke up the next day. It turned out to be a perforated and gangrenous small bowel. Go figure, this was completely out of the blue.
They removed about 1 foot of small bowel and sent me home after about 5 days. Once home I did not do well and ended up back in the hospital. My guess is that I was having withdrawal from Dilaudid. That is one powerful pain drug - and I was really enjoying it in the hospital. I read online that one nickname for Dilaudid is "hospital heroin". At home, I was not able to eat much, and was having extreme chemical smell sensitivity, and recurring disturbing nightmares. Not typical for me. Anyway, time and getting some IV fluids in the hospital did the trick and I was released after 2 nights.
About a week before this emergency surgery, a colonoscopy had found some low grade displasia in my colon, with "foci" of high grade. So I was thinking of that during my hospital stay and getting pretty depressed. It was one area of dysplasia out of about 12 biopsies.
A coworker of mine recommended Dr Present in NYC for a consultation. I think my case was getting complicated for my local GI doc. And that is what Dr Present said as he read my sad file. "Complicated". I had read that he does not rush to remove the colon when low grade dysplsia is detected. He recommended a chromoendoscopy with his partner, Dr Marion. Chromoendoscopy is a colonoscopy where they use blue dye to help better detect dysplasia.
I had that done one week ago and I'm waiting for the results.
He also recommended low dose codeine for my constant diarrhea. My local doc received his letter and started me on 15mg. Finally something that worked for me. It gave me control of urgency and I would only wake up at night once or twice instead of 4 or 5 times. But during the day (at work), it really made a difference. No more accidents and close calls.
Ah, I'll also mention I had a seton procedure about 4 weeks ago. I had been living with a fistula and "on and off" abscesses for a very long time. Like my other symptoms, just dealing with it as best I could over the years. I had learned to sit on one cheek for so long it is now a habit! So finally I mentioned this to the colorectal surgeon who had just performed my 2nd surgery. He recommended a seton, which I never heard of. It turned out to be a drainage seton (as opposed to cutting) and I have two of them. I read all I could before my procedure so I knew what to expect. I read that some folks were surprised and horrified to have an open wound after the procedure. The surgeon did not mention that, but I did have one - it was about the size of a quarter, with the seton string coming out. The surgeon also reported that I have proctitis.
Now, 4 weeks later, I'm glad I did this. But the 1st two weeks were so challenging and painful. The slightest tug on the seton string would bring extreme pain. So you can imagine sitting and shifting, and bathroom functions were difficult. I also did not take any time off work, and I sit all day, so that was hard.
So now I wait for the biopsy results - more dysplasia and/or definite high grade dysplasia probably means a total colectomy and Ileostomy. Maybe if the results are similar to before, with just low grade, I'll just play the waiting game with another chromoendoscopy in 6 months.
Anyway, that's my story. I'll follow up in the next few days on what the biopsy results are. Thanks for reading! I'm happy to hear any advice or your thoughts.
-Joe (43)
Prednisone - 7.5 mg (weaning - trying to get off this finally)
Humira - 1 shot every two weeks
Asacol - 12 a day
Protonix - once a day
Codeine - 15mg - 5 times a day
Cortifoam - twice a day - (Dr Present just prescribed this - instead of Rowasa enema)
It's been pretty good that way.