I really appreciate being able to read others' stories so I figure I'll put mine down in case it helps someone else. If this would be better in a different section, feel free to move it
so... After ending up in the hospital with at least a partial blockage (they did the first CT wo contrast bc they thought it was kidney stones) my GI suggested 2 options,
1) give a double dose of Remicade and see how I feel after 4 or 5 months and if it doesn't get better, consider surgery
or
2) just consider surgery.
Because I've had blockage pains for years and they're getting worse (not every time is a bad one, but the bad ones are getting worse) and because they more often than not appear when I think I'm feeling fine, I decided to just see where things stand in regards to surgery.
The first step was an MRE - basically an MRI w contrast. I was glad it wasn't another CT, 4 is enough for now... Anyway, I got there an hour before the test and had to drink 3 of those barium sulfate contrast solutions. They gave me a bottle and said to drink it over 20 min. I never think they taste that bad, but I did get really cold and was shivering quite a bit even with my coat - probably bc I was in a basement and they chilled them to make them more palatable.
Anyway, after I got 2.5 of the bottles down, they had me change into the gown and set up an IV. Once the lady before me was done, they took me in, put ear plugs in and had me down the last of the contrast. Then they had me climb on the slat belly down. Yes, I had to lay on my belly. Isn't this a crohn's specific test? My gut isn't that sore right now, but there have certainly been many times where I wouldn't have been able to stand that...
Then she strapped on a black plastic strap that would monitor my breathing and put a plastic flat piece over my back. My arms were over my head "like superman" and she hooked up the IV but didn't start the IV contrast yet.
After I was all setup the tech went to her booth and got started. The test was similar to the CT, only louder. It was lots of holding my breath and then pauses, I guess while she looked at the pictures she'd taken. After a while (I'm going to guess 20 min) she said she was going to start the IV contrast. It was similar to the CT IV contrast (for all I know it could be the same...) and did a few more holding breath pics.
Then she unhooked me and I was able to go back and change while they burned a CD for me of the images. The rest of the day I was dealing with the after affects of the contrast. For anyone who hasn't had the pleasure of taking oral contrast, basically I went from being really constipated (I'll go 10 days if I'm not careful) to needing to go every few hours. The effects lasted a full 24 hrs this time, a bit different from my CT 2 yrs before but I'm not sure if that was bc it was different contrast or if it was just because my body is in different shape now.
now I wait. I *HATE* waiting, I hate the unknown. From what I understand, the next step will depend on what he sees on the images. If it looks pretty certain that it is strictured I think I go talk to the surgeon again, if its unclear, then a pill cam and possibly another colonoscopy.
that's where I am now, I'm trying to prepare myself to expect to not hear till next Friday. I have no idea when I'll hear but I'm hoping to set it out of my mind
so, that's it for now, I'll try to update when I know more
so... After ending up in the hospital with at least a partial blockage (they did the first CT wo contrast bc they thought it was kidney stones) my GI suggested 2 options,
1) give a double dose of Remicade and see how I feel after 4 or 5 months and if it doesn't get better, consider surgery
or
2) just consider surgery.
Because I've had blockage pains for years and they're getting worse (not every time is a bad one, but the bad ones are getting worse) and because they more often than not appear when I think I'm feeling fine, I decided to just see where things stand in regards to surgery.
The first step was an MRE - basically an MRI w contrast. I was glad it wasn't another CT, 4 is enough for now... Anyway, I got there an hour before the test and had to drink 3 of those barium sulfate contrast solutions. They gave me a bottle and said to drink it over 20 min. I never think they taste that bad, but I did get really cold and was shivering quite a bit even with my coat - probably bc I was in a basement and they chilled them to make them more palatable.
Anyway, after I got 2.5 of the bottles down, they had me change into the gown and set up an IV. Once the lady before me was done, they took me in, put ear plugs in and had me down the last of the contrast. Then they had me climb on the slat belly down. Yes, I had to lay on my belly. Isn't this a crohn's specific test? My gut isn't that sore right now, but there have certainly been many times where I wouldn't have been able to stand that...
Then she strapped on a black plastic strap that would monitor my breathing and put a plastic flat piece over my back. My arms were over my head "like superman" and she hooked up the IV but didn't start the IV contrast yet.
After I was all setup the tech went to her booth and got started. The test was similar to the CT, only louder. It was lots of holding my breath and then pauses, I guess while she looked at the pictures she'd taken. After a while (I'm going to guess 20 min) she said she was going to start the IV contrast. It was similar to the CT IV contrast (for all I know it could be the same...) and did a few more holding breath pics.
Then she unhooked me and I was able to go back and change while they burned a CD for me of the images. The rest of the day I was dealing with the after affects of the contrast. For anyone who hasn't had the pleasure of taking oral contrast, basically I went from being really constipated (I'll go 10 days if I'm not careful) to needing to go every few hours. The effects lasted a full 24 hrs this time, a bit different from my CT 2 yrs before but I'm not sure if that was bc it was different contrast or if it was just because my body is in different shape now.
now I wait. I *HATE* waiting, I hate the unknown. From what I understand, the next step will depend on what he sees on the images. If it looks pretty certain that it is strictured I think I go talk to the surgeon again, if its unclear, then a pill cam and possibly another colonoscopy.
that's where I am now, I'm trying to prepare myself to expect to not hear till next Friday. I have no idea when I'll hear but I'm hoping to set it out of my mind
so, that's it for now, I'll try to update when I know more