CD Strikes again…
Question:
- Hide quoted text — Show quoted text – > Hi all, > I have been doing pretty crappy for the last week or so. I had a resection > of the terminal ileum on May 28/04 and I thought that I was starting to heal > up although I was still having about 15 bowel movements with major > urgency/day despite the 4 grams of Pentasa/day. > I had some severe abdominal pains on August 12/04 after work, so I had my > husband drop me off at the Emergency department to get them checked out. > Well, they did a CT scan and they saw that there was air in the wall of my > bowel, which they explained to me that it usually means that that area of > the bowel is dead or dying. Has anyone ever heard of that before? > They said that I was probably going to have to have emergency surgery and > they kept me in. They said that I was having a major flare near my > re-section site. Fortunately, they have some really great Doctors at that > hospital and they were able to get the bowel to perk up again and come back > to life with major antibiotic therapy. Once it started to improve and they > verified that the air had gone away on the CT scan they decided that I > probably wouldn’t have to have another resection. THANK GOD!! I was just > terrified….I mean, I am barely recovered from the last one. While I was > in the hospital they blew up 16 of my veins and they said that the next step > was a PIC line as my veins are just too fragile. If I end up in the > hospital again for anything major I am going to request a PIC line right > away as I am literally black and blue from blown and interstitial veins. > As it is, I have to really be careful. I am on antibiotics (Cipro 500 mg > twice daily and Flagyll 500 mg twice daily) and steroids (prednisone 40 mg) > now to totally reduce the inflammation and I am okay with that as long as I > am able to function. I actually had some vegetables (very well cooked) > today and I didn’t have an attack, so that is really cool. Of course I > didn’t get to eat or drink anything for over a week and now that I am on > steroids I am ravenous, but I am making sure that I graze and don’t eat too > much at one sitting as I have found that aggravates my bowel. I have to > keep watch to make sure that I don’t get a fever, or have any severe pains. > If either of those things happen, I have to go right back into the hospital. > But right now, my temperature is fine, and the pain is manageable and I am > hyper as heck from the steroids. They want me to see my GI Doc within the > next couple of weeks to explore other options. The hospital GI suggested > Immuran. I have been on 6MP and Methotrexate and didn’t get any relief from > them and they both gave me migraines. Is Immuran any different than those? > I have had good luck with Remicade in calming my flares into submission, but > my Doc is hesitating in using it. > Any suggestions? I just want to do ANYTHING that will keep me from having > another surgery. I just don’t know if I could handle it. > Thanks in advance for your advice. > Ann
hi ann sorry i dont have any suggestions..i have been fortunate to never have surgery(i guess crohns colitis is more like uc than crohns in some ways)..but wanted to wish u lots of luck..i am on 6mp, asacol and cipro..the cipro has been the final thing that is keeping me doing fairly well..have had some small flares but they clear up relatively quickly…u might want to see if u can try it.. take care…am thinking of u annie
Response:
You are welcome Ann. I understand how you feel. I am quite excited myself. In May my GI scoped me and, for the first time since my resection just over 5 years ago he could get into my small intestine and 1 ft past my surgical site. He saw no active sign of CD and no scaring by the surgical site, all thanks to the 6MP. There were microscopic signs of active CD from the pathology report but my GI considers me in remission, finally. It’s been a long haul, but I feel like a hard fought battle has been won and now we are holding off the small attacks. I wish the same for you! 
mgbio – Hide quoted text — Show quoted text – > HI Mgbio, > Thanks so much for the info, that was really helpful! I am willing to go > with whatever course of treatment will work for me in order to save more of > my intestines. I am terrified at the thought of having another surgery. I > hope that my Doc will have a good strategy for me, because, obviously > Pentasa does nothing for me and I can’t be on Prednisone forever. > Thanks again! > Ann >Hi Ann, >The best way to avoid surgery or put it off as long as possible is to use > immunomodulators such as 6MP, Immuran or Methotrexate. Your GI is probably > hesitant to use Remicade because you are not taking one of the 3 mentioned > above. Today, doctors know what the use of one of the 3 immunomodulators > will significantly decrease the likelihood of you developing antibodies to > Remicade and having a reaction to the medication when given multiple times, > which is needed to maintain remission. >Steroids are generally not recommended to maintain remission due to the > long term damages they cause. I went to hear my own GI speak at a CCFA > function in which he stated that more and more researchers felt that the > immunomodulators should be used as front line drugs and not the drugs of > last resort. >Immuran and 6MP are very similar drugs. Immuran breaks down to 6MP and > both break down to 6TG, the active ingredient. When this pathway is > followed, 6MP is an effective drug for patients. In some people, a > different chemical pathway is followed and 6TG is not created and then > 6MP/Immuran is ineffective in those patients. For those patients, > Methotrexate would be a better choice of an immunomodulators. >You might want to discuss trying one of the drugs again but this time > building up the dosage very slowly, giving your body time to adjust and > thus, hopefully, avoiding the side effects. >Good luck Ann! >:) mgbio >>Hi all, >>I have been doing pretty crappy for the last week or so. I had a > resection >>of the terminal ileum on May 28/04 and I thought that I was starting to > heal >>up although I was still having about 15 bowel movements with major >>urgency/day despite the 4 grams of Pentasa/day. >>I had some severe abdominal pains on August 12/04 after work, so I had > my >>husband drop me off at the Emergency department to get them checked out. >>Well, they did a CT scan and they saw that there was air in the wall of > my >>bowel, which they explained to me that it usually means that that area > of >>the bowel is dead or dying. Has anyone ever heard of that before? >>They said that I was probably going to have to have emergency surgery > and >>they kept me in. They said that I was having a major flare near my >>re-section site. Fortunately, they have some really great Doctors at > that >>hospital and they were able to get the bowel to perk up again and come > back >>to life with major antibiotic therapy. Once it started to improve and > they >>verified that the air had gone away on the CT scan they decided that I >>probably wouldn’t have to have another resection. THANK GOD!! I was > just >>terrified….I mean, I am barely recovered from the last one. While I > was >>in the hospital they blew up 16 of my veins and they said that the next > step >>was a PIC line as my veins are just too fragile. If I end up in the >>hospital again for anything major I am going to request a PIC line right >>away as I am literally black and blue from blown and interstitial veins. >>As it is, I have to really be careful. I am on antibiotics (Cipro 500 > mg >>twice daily and Flagyll 500 mg twice daily) and steroids (prednisone 40 > mg) >>now to totally reduce the inflammation and I am okay with that as long > as I >>am able to function. I actually had some vegetables (very well cooked) >>today and I didn’t have an attack, so that is really cool. Of course I >>didn’t get to eat or drink anything for over a week and now that I am on >>steroids I am ravenous, but I am making sure that I graze and don’t eat > too >>much at one sitting as I have found that aggravates my bowel. I have to >>keep watch to make sure that I don’t get a fever, or have any severe > pains. >>If either of those things happen, I have to go right back into the > hospital. >>But right now, my temperature is fine, and the pain is manageable and I > am >>hyper as heck from the steroids. They want me to see my GI Doc within > the >>next couple of weeks to explore other options. The hospital GI > suggested >>Immuran. I have been on 6MP and Methotrexate and didn’t get any relief > from >>them and they both gave me migraines. Is Immuran any different than > those? >>I have had good luck with Remicade in calming my flares into submission, > but >>my Doc is hesitating in using it. >>Any suggestions? I just want to do ANYTHING that will keep me from > having >>another surgery. I just don’t know if I could handle it. >>Thanks in advance for your advice. >>Ann
Response:
HI Mgbio, Thanks so much for the info, that was really helpful! I am willing to go with whatever course of treatment will work for me in order to save more of my intestines. I am terrified at the thought of having another surgery. I hope that my Doc will have a good strategy for me, because, obviously Pentasa does nothing for me and I can’t be on Prednisone forever. Thanks again! Ann
> Hi Ann, > The best way to avoid surgery or put it off as long as possible is to use
immunomodulators such as 6MP, Immuran or Methotrexate. Your GI is probably hesitant to use Remicade because you are not taking one of the 3 mentioned above. Today, doctors know what the use of one of the 3 immunomodulators will significantly decrease the likelihood of you developing antibodies to Remicade and having a reaction to the medication when given multiple times, which is needed to maintain remission. > Steroids are generally not recommended to maintain remission due to the
long term damages they cause. I went to hear my own GI speak at a CCFA function in which he stated that more and more researchers felt that the immunomodulators should be used as front line drugs and not the drugs of last resort. > Immuran and 6MP are very similar drugs. Immuran breaks down to 6MP and
both break down to 6TG, the active ingredient. When this pathway is followed, 6MP is an effective drug for patients. In some people, a different chemical pathway is followed and 6TG is not created and then 6MP/Immuran is ineffective in those patients. For those patients, Methotrexate would be a better choice of an immunomodulators. > You might want to discuss trying one of the drugs again but this time
building up the dosage very slowly, giving your body time to adjust and thus, hopefully, avoiding the side effects. – Hide quoted text — Show quoted text -> Good luck Ann! > mgbio > Hi all, > I have been doing pretty crappy for the last week or so. I had a resection > of the terminal ileum on May 28/04 and I thought that I was starting to heal > up although I was still having about 15 bowel movements with major > urgency/day despite the 4 grams of Pentasa/day. > I had some severe abdominal pains on August 12/04 after work, so I had my > husband drop me off at the Emergency department to get them checked out. > Well, they did a CT scan and they saw that there was air in the wall of my > bowel, which they explained to me that it usually means that that area of > the bowel is dead or dying. Has anyone ever heard of that before? > They said that I was probably going to have to have emergency surgery and > they kept me in. They said that I was having a major flare near my > re-section site. Fortunately, they have some really great Doctors at that > hospital and they were able to get the bowel to perk up again and come back > to life with major antibiotic therapy. Once it started to improve and they > verified that the air had gone away on the CT scan they decided that I > probably wouldn’t have to have another resection. THANK GOD!! I was just > terrified….I mean, I am barely recovered from the last one. While I was > in the hospital they blew up 16 of my veins and they said that the next step > was a PIC line as my veins are just too fragile. If I end up in the > hospital again for anything major I am going to request a PIC line right > away as I am literally black and blue from blown and interstitial veins. > As it is, I have to really be careful. I am on antibiotics (Cipro 500 mg > twice daily and Flagyll 500 mg twice daily) and steroids (prednisone 40 mg) > now to totally reduce the inflammation and I am okay with that as long as I > am able to function. I actually had some vegetables (very well cooked) > today and I didn’t have an attack, so that is really cool. Of course I > didn’t get to eat or drink anything for over a week and now that I am on > steroids I am ravenous, but I am making sure that I graze and don’t eat too > much at one sitting as I have found that aggravates my bowel. I have to > keep watch to make sure that I don’t get a fever, or have any severe pains. > If either of those things happen, I have to go right back into the hospital. > But right now, my temperature is fine, and the pain is manageable and I am > hyper as heck from the steroids. They want me to see my GI Doc within the > next couple of weeks to explore other options. The hospital GI suggested > Immuran. I have been on 6MP and Methotrexate and didn’t get any relief from > them and they both gave me migraines. Is Immuran any different than those? > I have had good luck with Remicade in calming my flares into submission, but > my Doc is hesitating in using it. > Any suggestions? I just want to do ANYTHING that will keep me from having > another surgery. I just don’t know if I could handle it. > Thanks in advance for your advice. > Ann
Response:
Hi Ann, The best way to avoid surgery or put it off as long as possible is to use immunomodulators such as 6MP, Immuran or Methotrexate. Your GI is probably hesitant to use Remicade because you are not taking one of the 3 mentioned above. Today, doctors know what the use of one of the 3 immunomodulators will significantly decrease the likelihood of you developing antibodies to Remicade and having a reaction to the medication when given multiple times, which is needed to maintain remission. Steroids are generally not recommended to maintain remission due to the long term damages they cause. I went to hear my own GI speak at a CCFA function in which he stated that more and more researchers felt that the immunomodulators should be used as front line drugs and not the drugs of last resort. Immuran and 6MP are very similar drugs. Immuran breaks down to 6MP and both break down to 6TG, the active ingredient. When this pathway is followed, 6MP is an effective drug for patients. In some people, a different chemical pathway is followed and 6TG is not created and then 6MP/Immuran is ineffective in those patients. For those patients, Methotrexate would be a better choice of an immunomodulators. You might want to discuss trying one of the drugs again but this time building up the dosage very slowly, giving your body time to adjust and thus, hopefully, avoiding the side effects. Good luck Ann! mgbio – Hide quoted text — Show quoted text – > Hi all, > I have been doing pretty crappy for the last week or so. I had a resection > of the terminal ileum on May 28/04 and I thought that I was starting to heal > up although I was still having about 15 bowel movements with major > urgency/day despite the 4 grams of Pentasa/day. > I had some severe abdominal pains on August 12/04 after work, so I had my > husband drop me off at the Emergency department to get them checked out. > Well, they did a CT scan and they saw that there was air in the wall of my > bowel, which they explained to me that it usually means that that area of > the bowel is dead or dying. Has anyone ever heard of that before? > They said that I was probably going to have to have emergency surgery and > they kept me in. They said that I was having a major flare near my > re-section site. Fortunately, they have some really great Doctors at that > hospital and they were able to get the bowel to perk up again and come back > to life with major antibiotic therapy. Once it started to improve and they > verified that the air had gone away on the CT scan they decided that I > probably wouldn’t have to have another resection. THANK GOD!! I was just > terrified….I mean, I am barely recovered from the last one. While I was > in the hospital they blew up 16 of my veins and they said that the next step > was a PIC line as my veins are just too fragile. If I end up in the > hospital again for anything major I am going to request a PIC line right > away as I am literally black and blue from blown and interstitial veins. > As it is, I have to really be careful. I am on antibiotics (Cipro 500 mg > twice daily and Flagyll 500 mg twice daily) and steroids (prednisone 40 mg) > now to totally reduce the inflammation and I am okay with that as long as I > am able to function. I actually had some vegetables (very well cooked) > today and I didn’t have an attack, so that is really cool. Of course I > didn’t get to eat or drink anything for over a week and now that I am on > steroids I am ravenous, but I am making sure that I graze and don’t eat too > much at one sitting as I have found that aggravates my bowel. I have to > keep watch to make sure that I don’t get a fever, or have any severe pains. > If either of those things happen, I have to go right back into the hospital. > But right now, my temperature is fine, and the pain is manageable and I am > hyper as heck from the steroids. They want me to see my GI Doc within the > next couple of weeks to explore other options. The hospital GI suggested > Immuran. I have been on 6MP and Methotrexate and didn’t get any relief from > them and they both gave me migraines. Is Immuran any different than those? > I have had good luck with Remicade in calming my flares into submission, but > my Doc is hesitating in using it. > Any suggestions? I just want to do ANYTHING that will keep me from having > another surgery. I just don’t know if I could handle it. > Thanks in advance for your advice. > Ann
Response:
Hi all, I have been doing pretty crappy for the last week or so. I had a resection of the terminal ileum on May 28/04 and I thought that I was starting to heal up although I was still having about 15 bowel movements with major urgency/day despite the 4 grams of Pentasa/day. I had some severe abdominal pains on August 12/04 after work, so I had my husband drop me off at the Emergency department to get them checked out. Well, they did a CT scan and they saw that there was air in the wall of my bowel, which they explained to me that it usually means that that area of the bowel is dead or dying. Has anyone ever heard of that before? They said that I was probably going to have to have emergency surgery and they kept me in. They said that I was having a major flare near my re-section site. Fortunately, they have some really great Doctors at that hospital and they were able to get the bowel to perk up again and come back to life with major antibiotic therapy. Once it started to improve and they verified that the air had gone away on the CT scan they decided that I probably wouldn’t have to have another resection. THANK GOD!! I was just terrified….I mean, I am barely recovered from the last one. While I was in the hospital they blew up 16 of my veins and they said that the next step was a PIC line as my veins are just too fragile. If I end up in the hospital again for anything major I am going to request a PIC line right away as I am literally black and blue from blown and interstitial veins. As it is, I have to really be careful. I am on antibiotics (Cipro 500 mg twice daily and Flagyll 500 mg twice daily) and steroids (prednisone 40 mg) now to totally reduce the inflammation and I am okay with that as long as I am able to function. I actually had some vegetables (very well cooked) today and I didn’t have an attack, so that is really cool. Of course I didn’t get to eat or drink anything for over a week and now that I am on steroids I am ravenous, but I am making sure that I graze and don’t eat too much at one sitting as I have found that aggravates my bowel. I have to keep watch to make sure that I don’t get a fever, or have any severe pains. If either of those things happen, I have to go right back into the hospital. But right now, my temperature is fine, and the pain is manageable and I am hyper as heck from the steroids. They want me to see my GI Doc within the next couple of weeks to explore other options. The hospital GI suggested Immuran. I have been on 6MP and Methotrexate and didn’t get any relief from them and they both gave me migraines. Is Immuran any different than those? I have had good luck with Remicade in calming my flares into submission, but my Doc is hesitating in using it. Any suggestions? I just want to do ANYTHING that will keep me from having another surgery. I just don’t know if I could handle it. Thanks in advance for your advice. Ann
Response:
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