Adam is tolerating the Flagyl well, and it seems to actually be helping his symptoms. 1 bowl movement during the night opposed to 5 or 6, and not nearly as many during the day. In fact, we went out to lunch yesterday for his 30th birthday, and he didn't even have to take a bathroom break during the meal. He thinks food is possible staying in him longer as well. That is good. He isn't having any pain before a BM either. We're not sure what to think at this point. Right now we are cautiously optimistic. K does not believe this is what caused his colitis. She tested him for it two years ago and he didn't have the C.diff. Most people don't tolerate the Falgyl, so we are lucky Adam seems to handle it well. If we can get things under control we might be able to control the Colitis with meds.
Also...the biopsy came back and there is no sign of displasia! Yay!!
There is still the unresolved issue with the pituitary gland. We will be in contact with K on Monday with more follow-up.
Adam has been a real trooper through all of this. It is so refreshing to see a glimmer of hope in him again and see him feeling better.
More updates to come!
Friday, April 24, 2009
Monday, April 20, 2009
Health History
Tomorrow I am going to start making phone calls to collect all of Adam's prior medical records. We are going to make a time-line/history of the past 8 years. Once completed I will post it.
Sunday, April 19, 2009
518-2
It has been an eventful and overwelming week for us. The MRI didn't take as long as we thought it would. We also learned that the machine itself cost $6,000,000. That's right....6 million! No wonder it costs us $2200!
Friday was Adam's scope. K was able to get up into his small intestine and see that there was inflammation. She also was able to get 5 biopsies, inluding a polip. While taking the 5th biopsy she said the tissue just flaked right off. She was afraid she perforrated the colon wall, so she immediately clamped it and pulled out. She said his colon was in bad shape, one of the worst she's ever seen. She admitted him into the hospital so she could run more tests, and monitor him in case it was perforrated. He had to remain on an all liquid diet for the next 48 hours. He had a lot of pain from the biopsys and a lot of gas discomfort. He also complained of a bad headache. He vomited when they gave him some morphine, and also when he tried to swallow a potassium pill. She also put him on Flagyl and Cypro...two antibiotics. Adam was in room 518-2...2 meaning bed #2. He had a roommate. Not the ideal situation, but it wasn't so bad. All-in-all we had a good experience with the Dr.'s and nurses.
It was kind of a whirlwind for me, arranging babysitting for the boys, and wanting to be with Adam at the hospital(UofU). Luckily we had family that was able to help!
We also got to meet with a few members of the colo-rectal surgical team. They were great and answered many of our question.
So here is where we stand today:
Several labs were taken to figure out if it is for sure UC or possibly Chrones Disease.
We are waiting for biopsy results to make sure there's no displasia or cancer cells
If there is any displasia the colon comes out!
There is also the issue from the MRI..Adam's pituitary glands are small, which is why he is not producing prolactic or testosterone. This could be a by-product of the inflammation in his colon.
K called today and said one of the stool samples she ran was positive for C.diff...a kind of bacteria bug. She put him on a strong regimen of Flagyl for 30 days. We are still researching C.diff, but apparantly it can cause mild diaharrea and lead to UC. If not treated early on it can become almost uncurable.
Could it be that Adam has had C.diff all along? We're not sure. Adam has been tested for C.diff before, but K said she's not sure she's ever done this specific ultra-sensitive test...it's new.
Friday was Adam's scope. K was able to get up into his small intestine and see that there was inflammation. She also was able to get 5 biopsies, inluding a polip. While taking the 5th biopsy she said the tissue just flaked right off. She was afraid she perforrated the colon wall, so she immediately clamped it and pulled out. She said his colon was in bad shape, one of the worst she's ever seen. She admitted him into the hospital so she could run more tests, and monitor him in case it was perforrated. He had to remain on an all liquid diet for the next 48 hours. He had a lot of pain from the biopsys and a lot of gas discomfort. He also complained of a bad headache. He vomited when they gave him some morphine, and also when he tried to swallow a potassium pill. She also put him on Flagyl and Cypro...two antibiotics. Adam was in room 518-2...2 meaning bed #2. He had a roommate. Not the ideal situation, but it wasn't so bad. All-in-all we had a good experience with the Dr.'s and nurses.
It was kind of a whirlwind for me, arranging babysitting for the boys, and wanting to be with Adam at the hospital(UofU). Luckily we had family that was able to help!
We also got to meet with a few members of the colo-rectal surgical team. They were great and answered many of our question.
So here is where we stand today:
Several labs were taken to figure out if it is for sure UC or possibly Chrones Disease.
We are waiting for biopsy results to make sure there's no displasia or cancer cells
If there is any displasia the colon comes out!
There is also the issue from the MRI..Adam's pituitary glands are small, which is why he is not producing prolactic or testosterone. This could be a by-product of the inflammation in his colon.
K called today and said one of the stool samples she ran was positive for C.diff...a kind of bacteria bug. She put him on a strong regimen of Flagyl for 30 days. We are still researching C.diff, but apparantly it can cause mild diaharrea and lead to UC. If not treated early on it can become almost uncurable.
Could it be that Adam has had C.diff all along? We're not sure. Adam has been tested for C.diff before, but K said she's not sure she's ever done this specific ultra-sensitive test...it's new.
Wednesday, April 15, 2009
MRI
Today we are going in for Adam's MRI. Just getting the Pituitary Gland checked. His scope is scheduled for Friday.
Thursday, April 9, 2009
Scared
Adam is at stake meetings tonight. I have the boys to bed early, so this gives me some free time to myself. I thought I'd try to back-track a little and explain how we got to where we are today...with Adam's health that is.
He has been suffering with UC (Ulcerative Colitis) now since May 2001...that's 8 years. And I do mean suffering. Constant diarhea. He has to go to the bathroom several times during the day, and usually up 4-5 times at night. He has tried so many meds we can't even remember them all. He has had remicade infusions, and tried a few diets. He's even gone so far as to give himself enemas.
It has been 2 years since his last scope, and I think almost as long since we've seen K (his gastrointerologist).
Last fall he contracted a virus that nearly killed him. He lost about 25 lbs., and has not gotten his strength back since.
A few weeks ago we had our Stake Conference with a visiting General Authority. Long story short - the General Authority told Adam he needed to call a Dr. Doty at the missionary department. He said there were some meds that they give missionaries who come home from foreign countries to kill all sorts of bacteria, bugs, parasites, ameobas, etc. Dr. Doty referred us to Dr. Hale at the UofU, whom we had seen back in '06. We spent about an hour giving him Adam's history, and he ran a bunch of tests. Now here's the kicker. He told us that since Adam had been suffering so long without relief, he would recommend getting his colon removed.
We had told ourselves we would only consider this option as a last resort, and hadn't thought of it since our first visit with K...where she did suggest it. Suddently it all seemed clear. We believe that General Authority was ispired to send us that route so that we would once again consider removing his colon as a viable option. It also sent us to see K again.
Our visit with K was informative and eye-opening. When she walked into the room she couldn't believe how sick Adam looked. She actually used the "c" word, and said that it is a high possibility the longer he suffers from the disease without responding to treatment. She was actually glad we had decided to look into removing the colon. She requested a bunch of labs.
....turns out Adam is not producing enough Prolactin, which is related to having low testosterone levels.....this indicated that the pituitary gland is not functioning properly. So..naturally that means MRI. She also ordered a Chest X-ray. We are scheduled for the MRI and a scope on April 17.
Since Adam's Kidney stone last summer he has been seeing the Urologist...he's the one who had ordered the testosterone test and discovered it was low.
So, we wait until the 17th. Hopefully there will be no tumors or cancer, and we can just proceed with meeting with the surgeon.
As I look back on the excruciatingly painful events that have taken place in Adam's life over the past year, I can't help but think it has all been to lead us to this catalistic decision. Without the kidney stone he would have not had his testosterone level checked, therefore leading us to the problem with the pituitary glad. Without that awful virus we probably would not have gone to see K or even think about colon removal as an option.
Or perhaps his body is telling us it just can't take any more!
Now...we are just scared. The not knowing is the hardest part.
Adam..you are the strongest person I know...I love you!
He has been suffering with UC (Ulcerative Colitis) now since May 2001...that's 8 years. And I do mean suffering. Constant diarhea. He has to go to the bathroom several times during the day, and usually up 4-5 times at night. He has tried so many meds we can't even remember them all. He has had remicade infusions, and tried a few diets. He's even gone so far as to give himself enemas.
It has been 2 years since his last scope, and I think almost as long since we've seen K (his gastrointerologist).
Last fall he contracted a virus that nearly killed him. He lost about 25 lbs., and has not gotten his strength back since.
A few weeks ago we had our Stake Conference with a visiting General Authority. Long story short - the General Authority told Adam he needed to call a Dr. Doty at the missionary department. He said there were some meds that they give missionaries who come home from foreign countries to kill all sorts of bacteria, bugs, parasites, ameobas, etc. Dr. Doty referred us to Dr. Hale at the UofU, whom we had seen back in '06. We spent about an hour giving him Adam's history, and he ran a bunch of tests. Now here's the kicker. He told us that since Adam had been suffering so long without relief, he would recommend getting his colon removed.
We had told ourselves we would only consider this option as a last resort, and hadn't thought of it since our first visit with K...where she did suggest it. Suddently it all seemed clear. We believe that General Authority was ispired to send us that route so that we would once again consider removing his colon as a viable option. It also sent us to see K again.
Our visit with K was informative and eye-opening. When she walked into the room she couldn't believe how sick Adam looked. She actually used the "c" word, and said that it is a high possibility the longer he suffers from the disease without responding to treatment. She was actually glad we had decided to look into removing the colon. She requested a bunch of labs.
....turns out Adam is not producing enough Prolactin, which is related to having low testosterone levels.....this indicated that the pituitary gland is not functioning properly. So..naturally that means MRI. She also ordered a Chest X-ray. We are scheduled for the MRI and a scope on April 17.
Since Adam's Kidney stone last summer he has been seeing the Urologist...he's the one who had ordered the testosterone test and discovered it was low.
So, we wait until the 17th. Hopefully there will be no tumors or cancer, and we can just proceed with meeting with the surgeon.
As I look back on the excruciatingly painful events that have taken place in Adam's life over the past year, I can't help but think it has all been to lead us to this catalistic decision. Without the kidney stone he would have not had his testosterone level checked, therefore leading us to the problem with the pituitary glad. Without that awful virus we probably would not have gone to see K or even think about colon removal as an option.
Or perhaps his body is telling us it just can't take any more!
Now...we are just scared. The not knowing is the hardest part.
Adam..you are the strongest person I know...I love you!
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