- Joined
- Feb 12, 2009
- Messages
- 5
Hi again everyone,
Just thought I'd post an update to my latest bout of Crohn's.
In Jan., I went into the hospital and was treated with a lot of antibiotics. When I was released, I was on Entocort and Pentasa. Went back after several weeks and had a follow up CT scan. When I went to my GI Dr., the news was absolutely no improvement in the blocked area at all. That was depressing. His suggestion was to try a pill cam test to see if it might be old scar tissue or active infection. Here the fun begins. Went in a 7 AM and swallowed the camera and got hooked up to the receiver. Started getting some pains about noon, but they said it was "normal". The test finished up about 4PM, and we went back home. The pains continued and I called the Dr who called back and said again really nothing to worry about, but if I wanted to go get an x-ray, I could. The pains sort of subsided, so I was able to sleep that night.
Early the next morning, my Dr's nurse called to say I should go get an x-ray since it hadn't passed yet. We're staying in Benson, AZ and the hospital thee had no one who could read the x-ray, so it was back to TMC in Tucson, AZ.
Checked into the ER and finally got an picture. Sure enough, there it was, stuck. My GI Dr tried in the afternoon to get by doing a colonoscopy. But lo and behold, I was blocked down to the size of a ball point pen opening. The camera was about 12" from where he was able to get to, so surgery was called for.
Went in the next morning running a fever of 102, chills, etc. The surgeon thought the camera might have torn through the intestine. The procedure lasted for three and a half hours. She removed my blockage, another 18" gone, and got the intestine off of my bladder. Here's the kicker. When she ran the bowel to go after the camera, she discovered a 4cm GIST. Said it was a blessing in disguise that the camera stuck were it was, because nothing had shown up on any of the CT scans or x-rays. She successfully removed it and didn't see any evidence that it had spread. The pathology report came back that it was malignant, but a very slow growing type, with little chance of returning. Finally some good news. The oncologist also said that even though I could go on Gleevic for a year, the benefit I would get just didn't justify taking it.
Now the GI has me going on Humira when the insurance approves it. That might take a few weeks. Sounds like it's not the most pleasant thing to take either, but I'm keeping my fingers crossed.
Thanks to all for this forum just to be able to vent. I am so ready to get back on the road, we're full-time RVers, that I want it to be yesterday. Plus, it's getting a tad warm here, too.
Rick
Just thought I'd post an update to my latest bout of Crohn's.
In Jan., I went into the hospital and was treated with a lot of antibiotics. When I was released, I was on Entocort and Pentasa. Went back after several weeks and had a follow up CT scan. When I went to my GI Dr., the news was absolutely no improvement in the blocked area at all. That was depressing. His suggestion was to try a pill cam test to see if it might be old scar tissue or active infection. Here the fun begins. Went in a 7 AM and swallowed the camera and got hooked up to the receiver. Started getting some pains about noon, but they said it was "normal". The test finished up about 4PM, and we went back home. The pains continued and I called the Dr who called back and said again really nothing to worry about, but if I wanted to go get an x-ray, I could. The pains sort of subsided, so I was able to sleep that night.
Early the next morning, my Dr's nurse called to say I should go get an x-ray since it hadn't passed yet. We're staying in Benson, AZ and the hospital thee had no one who could read the x-ray, so it was back to TMC in Tucson, AZ.
Checked into the ER and finally got an picture. Sure enough, there it was, stuck. My GI Dr tried in the afternoon to get by doing a colonoscopy. But lo and behold, I was blocked down to the size of a ball point pen opening. The camera was about 12" from where he was able to get to, so surgery was called for.
Went in the next morning running a fever of 102, chills, etc. The surgeon thought the camera might have torn through the intestine. The procedure lasted for three and a half hours. She removed my blockage, another 18" gone, and got the intestine off of my bladder. Here's the kicker. When she ran the bowel to go after the camera, she discovered a 4cm GIST. Said it was a blessing in disguise that the camera stuck were it was, because nothing had shown up on any of the CT scans or x-rays. She successfully removed it and didn't see any evidence that it had spread. The pathology report came back that it was malignant, but a very slow growing type, with little chance of returning. Finally some good news. The oncologist also said that even though I could go on Gleevic for a year, the benefit I would get just didn't justify taking it.
Now the GI has me going on Humira when the insurance approves it. That might take a few weeks. Sounds like it's not the most pleasant thing to take either, but I'm keeping my fingers crossed.
Thanks to all for this forum just to be able to vent. I am so ready to get back on the road, we're full-time RVers, that I want it to be yesterday. Plus, it's getting a tad warm here, too.
Rick
