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From: Rufus on 24 Jun 2008 23:34 Went to see my gastro at UCLA yesterday for a three month follow up on my last scope/biopsy procedure. I'm doing well enough that he doesn't want to see me for checkup for another year, unless I have any difficulty - then I'm to call him straight away. In the meantime I'm to continue my nine pill/day Colazal / once per day Protonix regimen. It appears to be working for me. I am doing pretty good, though I do still have some left side discomfort so I'm not in what I'd consider "remission"...but I'm doing very well. Things are under control for now. My biggest complaint is still chronic fatigue, and I have a theory on that that my doc says is plausible - I experienced severe insomnia while on Asacol, and Asacol and Colazal are the same basic drug (mesalamine) but differing in delivery method...so I feel that the Colazal is doing the same thing, just not as severely - i.e.; while I'm sleeping better, the mesalamine is still interfering with my deep sleep pattern, so I'm feeling that - particularly in the mornings. Doc said that that is plausible, and offered some sleep aids, but I still have some from when I was on Asacol and I might try Ambien CR again just to see if it helps any. I figure just occasional use should be ok - maybe once or twice per week. If it makes a difference I'll get my GP to write me for more. Anyway, bottom line is to keep doing what I'm doing because it seems to be working for me. -- - Rufus
From: Vanny on 25 Jun 2008 04:47 Well, good but mixed news. The CF might well be associated with the medication, but as you still have discomfort, this indicates that the Crohn's is still smouldering and active Crohn's is a cause of CF. I was fighting through my days years prior to my diagnosis. While you still have symptoms wouldn't it be worth considering longterm Azathioprine (aka Imuran) or 6-Mercaptopurine - generally 4 years? Smouldering Crohn's can do a lot of damage - I am living proof of that and the 5-ASAs have limited efficacy in Crohn's disease, depending on the patient. They seem to be helping you, but I would argue that you are still not receiving optimal therapy given that you still have moderate symptoms. Severe fatigue counts as moderate Crohn's in my books and blood and pain are not prerequisites in CD. Do you have raised inflammatory parameters - CRP (C-reactive protein), ESR (erythrocyte sedimentation rate), urinary-TNF alpha, etc? Vanny "Rufus" <not(a)home.com> schrieb im Newsbeitrag news:31j8k.170458$TT4.72907(a)attbi_s22... > Went to see my gastro at UCLA yesterday for a three month follow up on my > last scope/biopsy procedure. I'm doing well enough that he doesn't want > to see me for checkup for another year, unless I have any difficulty - > then I'm to call him straight away. In the meantime I'm to continue my > nine pill/day Colazal / once per day Protonix regimen. It appears to be > working for me. I am doing pretty good, though I do still have some left > side discomfort so I'm not in what I'd consider "remission"...but I'm > doing very well. Things are under control for now. > > My biggest complaint is still chronic fatigue, and I have a theory on that > that my doc says is plausible - I experienced severe insomnia while on > Asacol, and Asacol and Colazal are the same basic drug (mesalamine) but > differing in delivery method...so I feel that the Colazal is doing the > same thing, just not as severely - i.e.; while I'm sleeping better, the > mesalamine is still interfering with my deep sleep pattern, so I'm feeling > that - particularly in the mornings. > > Doc said that that is plausible, and offered some sleep aids, but I still > have some from when I was on Asacol and I might try Ambien CR again just > to see if it helps any. I figure just occasional use should be ok - maybe > once or twice per week. If it makes a difference I'll get my GP to write > me for more. > > Anyway, bottom line is to keep doing what I'm doing because it seems to be > working for me. > > -- > - Rufus
From: mgbio on 25 Jun 2008 11:43 That is great to hear that you are doing better! I hope it continues for a very long time. :) mgbio Rufus wrote: > Went to see my gastro at UCLA yesterday for a three month follow up on > my last scope/biopsy procedure. I'm doing well enough that he doesn't > want to see me for checkup for another year, unless I have any > difficulty - then I'm to call him straight away. In the meantime I'm > to continue my nine pill/day Colazal / once per day Protonix regimen. It > appears to be working for me. I am doing pretty good, though I do still > have some left side discomfort so I'm not in what I'd consider > "remission"...but I'm doing very well. Things are under control for now. > > My biggest complaint is still chronic fatigue, and I have a theory on > that that my doc says is plausible - I experienced severe insomnia while > on Asacol, and Asacol and Colazal are the same basic drug (mesalamine) > but differing in delivery method...so I feel that the Colazal is doing > the same thing, just not as severely - i.e.; while I'm sleeping better, > the mesalamine is still interfering with my deep sleep pattern, so I'm > feeling that - particularly in the mornings. > > Doc said that that is plausible, and offered some sleep aids, but I > still have some from when I was on Asacol and I might try Ambien CR > again just to see if it helps any. I figure just occasional use should > be ok - maybe once or twice per week. If it makes a difference I'll get > my GP to write me for more. > > Anyway, bottom line is to keep doing what I'm doing because it seems to > be working for me. >
From: anon on 25 Jun 2008 12:51 I think that it's irresponsible to dole out this kind of diagnostic speculation and drug advice from someone who is (a) not a physician and (b) has therefore never examined you or seen your medical records. A trained gastroenterologist who had never examined you would never do such a thing--still less so should a self-appointed "expert" amateur on a newsgroup. If you have any doubts about your treatment, the best course of action is to seek a second opinion from a specialist at a leading teaching hospital in your area. "Vanny" <Vannyss2003(a)antispam.com> wrote in message news:g3t0o5$3hf$1(a)newsreader2.netcologne.de... > Well, good but mixed news. The CF might well be associated with the > medication, but as you still have discomfort, this indicates that the > Crohn's is still smouldering and active Crohn's is a cause of CF. I was > fighting through my days years prior to my diagnosis. > > While you still have symptoms wouldn't it be worth considering longterm > Azathioprine (aka Imuran) or 6-Mercaptopurine - generally 4 years? > > Smouldering Crohn's can do a lot of damage - I am living proof of that and > the 5-ASAs have limited efficacy in Crohn's disease, depending on the > patient. They seem to be helping you, but I would argue that you are still > not receiving optimal therapy given that you still have moderate symptoms. > Severe fatigue counts as moderate Crohn's in my books and blood and pain > are not prerequisites in CD. > > Do you have raised inflammatory parameters - CRP (C-reactive protein), ESR > (erythrocyte sedimentation rate), urinary-TNF alpha, etc? > > Vanny > > > > "Rufus" <not(a)home.com> schrieb im Newsbeitrag > news:31j8k.170458$TT4.72907(a)attbi_s22... >> Went to see my gastro at UCLA yesterday for a three month follow up on my >> last scope/biopsy procedure. I'm doing well enough that he doesn't want >> to see me for checkup for another year, unless I have any difficulty - >> then I'm to call him straight away. In the meantime I'm to continue my >> nine pill/day Colazal / once per day Protonix regimen. It appears to be >> working for me. I am doing pretty good, though I do still have some left >> side discomfort so I'm not in what I'd consider "remission"...but I'm >> doing very well. Things are under control for now. >> >> My biggest complaint is still chronic fatigue, and I have a theory on >> that that my doc says is plausible - I experienced severe insomnia while >> on Asacol, and Asacol and Colazal are the same basic drug (mesalamine) >> but differing in delivery method...so I feel that the Colazal is doing >> the same thing, just not as severely - i.e.; while I'm sleeping better, >> the mesalamine is still interfering with my deep sleep pattern, so I'm >> feeling that - particularly in the mornings. >> >> Doc said that that is plausible, and offered some sleep aids, but I still >> have some from when I was on Asacol and I might try Ambien CR again just >> to see if it helps any. I figure just occasional use should be ok - >> maybe once or twice per week. If it makes a difference I'll get my GP to >> write me for more. >> >> Anyway, bottom line is to keep doing what I'm doing because it seems to >> be working for me. >> >> -- >> - Rufus > >
From: Rufus on 25 Jun 2008 15:03
Negative to all of the chem marker indications, as of my blood work about a month ago...but yes, I agree that I'm still "smoldering" to some extent. But probably not as bad as it sounds - I'm regular, and I'm not even having diarrhea at present. I get the urge to go, but no more than twice per day, and generally within about a half hour after I eat...particularly if I eat a large meal. The discomfort I feel is very minimal...just enough to remind me I have an issue, which is why I won't call it "remission". I think I did have a brief "remission" last August...lasted about two months, as I'd call it. I also agree that fatigue goes with the disease, but I've also verified my sleep issues by spending a night in the sleep lab...I just plain don't go into deep sleep, and that was worse when I was taking Asacol. My worst time is in the early part of the morning, I do and feel pretty good from about 9 am to midnight. I think my doc's advice to monitor on my present course is prudent - also because of where I live I have to make about a 300 mile round trip to actually obtain quality care...I may end up having to do something about that one day... -- - Rufus Vanny wrote: > Well, good but mixed news. The CF might well be associated with the > medication, but as you still have discomfort, this indicates that the > Crohn's is still smouldering and active Crohn's is a cause of CF. I was > fighting through my days years prior to my diagnosis. > > While you still have symptoms wouldn't it be worth considering longterm > Azathioprine (aka Imuran) or 6-Mercaptopurine - generally 4 years? > > Smouldering Crohn's can do a lot of damage - I am living proof of that and > the 5-ASAs have limited efficacy in Crohn's disease, depending on the > patient. They seem to be helping you, but I would argue that you are still > not receiving optimal therapy given that you still have moderate symptoms. > Severe fatigue counts as moderate Crohn's in my books and blood and pain are > not prerequisites in CD. > > Do you have raised inflammatory parameters - CRP (C-reactive protein), ESR > (erythrocyte sedimentation rate), urinary-TNF alpha, etc? > > Vanny > > > > "Rufus" <not(a)home.com> schrieb im Newsbeitrag > news:31j8k.170458$TT4.72907(a)attbi_s22... >> Went to see my gastro at UCLA yesterday for a three month follow up on my >> last scope/biopsy procedure. I'm doing well enough that he doesn't want >> to see me for checkup for another year, unless I have any difficulty - >> then I'm to call him straight away. In the meantime I'm to continue my >> nine pill/day Colazal / once per day Protonix regimen. It appears to be >> working for me. I am doing pretty good, though I do still have some left >> side discomfort so I'm not in what I'd consider "remission"...but I'm >> doing very well. Things are under control for now. >> >> My biggest complaint is still chronic fatigue, and I have a theory on that >> that my doc says is plausible - I experienced severe insomnia while on >> Asacol, and Asacol and Colazal are the same basic drug (mesalamine) but >> differing in delivery method...so I feel that the Colazal is doing the >> same thing, just not as severely - i.e.; while I'm sleeping better, the >> mesalamine is still interfering with my deep sleep pattern, so I'm feeling >> that - particularly in the mornings. >> >> Doc said that that is plausible, and offered some sleep aids, but I still >> have some from when I was on Asacol and I might try Ambien CR again just >> to see if it helps any. I figure just occasional use should be ok - maybe >> once or twice per week. If it makes a difference I'll get my GP to write >> me for more. >> >> Anyway, bottom line is to keep doing what I'm doing because it seems to be >> working for me. >> >> -- >> - Rufus > > |