GI doc says no to entocort
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GI doc says no to entocort
I am completely bewildered....her nurse called and said she doesn't want me to start the entocort and to just take immodium and the colestid, she will call in a Rx for Lomotil...I told her i had tons of lomotil on hand. they have no record of my monday apt....maybe they can squeeze me in on Wed. So I said, she wants me to endure the diarrhea for another week and not treat it? She'll get back to me. It feels like payback for requesting another opinion with ID doc. My DH thinks I am being paranoid.....that she just doesn't remember with so many patients.....just one more patient....etc. But she has my record in front of her, I would assume. Feel like a victim and I hate it....afraid to take a shower in case she calls.....don't want to risk not being able to take the call myself.....sihg....i know you all can't do anything, i just had to tell somebody what's happening.....
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
new info....just talked with the doc....she misunderstood my original message...that "i was concerned with entocort's impact on immune system and what could i do to enhance my immune system "....she heard: "i don't want c-diff and afraid entocort will bring it back." she said nothing will boost my immune system....probiotics don't help prevent c-diff.....(even tho i just saw a research article about florastor that refutes that)...and suggested asacol, but then told me side effects: bone marrow problems, anemia....already am borderline anemic....we agreed to try it anywy...i knowmany on theboard take it....but when i read up on it there is a caution for people with heart failure and diabetes....just don't know what to do now.....if i go back on the entocort she says i will probably get c-diff again....
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Sunny,
Hmmmmmmm. I think perhaps your doc is on unfamiliar turf, and feeling a bit confused. Certainly there is a risk of the reoccurrence of C. diff from the use of an immune system suppressant, but there is also a heightened risk of developing a C. diff infection from the presence of chronic enteritis and diarrhea, and she obviously is ignorant of the benefits of a good probiotic. In her chosen profession, that ignorance is a serious liability, and does a grave disservice to her patients, (who are paying her big bucks for "expert" advice, not "obsolete" advice. She is a perfect example of a GI doc who would benefit greatly from having MC herself.
That said, she may indeed have your best interest in mind, and this is a tough call. Unfortunately, there are few easy choices with this disease. I hope you had better luck with the ID doctor.
Tex
Hmmmmmmm. I think perhaps your doc is on unfamiliar turf, and feeling a bit confused. Certainly there is a risk of the reoccurrence of C. diff from the use of an immune system suppressant, but there is also a heightened risk of developing a C. diff infection from the presence of chronic enteritis and diarrhea, and she obviously is ignorant of the benefits of a good probiotic. In her chosen profession, that ignorance is a serious liability, and does a grave disservice to her patients, (who are paying her big bucks for "expert" advice, not "obsolete" advice. She is a perfect example of a GI doc who would benefit greatly from having MC herself.
That said, she may indeed have your best interest in mind, and this is a tough call. Unfortunately, there are few easy choices with this disease. I hope you had better luck with the ID doctor.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Sunny
Oh sweetie I am so sorry to read the problems you are now facing! It is so hard at times to get the medical profession to listen or learn about the various newly identified IBD's. I hope things get resloved soon for you I know from experience how you must be feeling right now. Also I have enclosed a link for you regarding Probiotics and C Diff and this is from research and entered in the British Medical Journal! Just shows that doctors need to talk with each other and keep up to date with research.
http://www.dailymail.co.uk/pages/live/a ... ge_id=1770
Oh sweetie I am so sorry to read the problems you are now facing! It is so hard at times to get the medical profession to listen or learn about the various newly identified IBD's. I hope things get resloved soon for you I know from experience how you must be feeling right now. Also I have enclosed a link for you regarding Probiotics and C Diff and this is from research and entered in the British Medical Journal! Just shows that doctors need to talk with each other and keep up to date with research.
http://www.dailymail.co.uk/pages/live/a ... ge_id=1770
Hi Sunny,
I am sorry to hear about your doctor throwing you in all different directions with info and drugs
I was on Asacol when first diagnosed with MC and it did help a little bit. I found i was a bit nauseous on it at first but that did go away after a week or two. Lomotil worked but i didn't like how it made me feel so i took it sparingly.
I really hope you can get some relief soon!
I am sorry to hear about your doctor throwing you in all different directions with info and drugs
I was on Asacol when first diagnosed with MC and it did help a little bit. I found i was a bit nauseous on it at first but that did go away after a week or two. Lomotil worked but i didn't like how it made me feel so i took it sparingly.
I really hope you can get some relief soon!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Mini,
Thanks for that link. That's very compelling evidence that probiotics are indeed very effective in preventing C. diff, following the use of antibiotics.
Tex
Thanks for that link. That's very compelling evidence that probiotics are indeed very effective in preventing C. diff, following the use of antibiotics.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
The Infectious disease Doc called and said this was out of his territory but that it would seem that it would be best to use the first line of defense (entocort) and not the second (asaco)l which for my conditions might be even more problematic. He asked if my doc knew I had heart failure and i siad it is in my records from initial visit. He was quiet a while and then said again that he thought entocort was the best route and if I did develop c-diff we knew what to do about it. Then very quietly...goodluck with this. sigh..... 
I am so weary of struggling with this and do not want to be in an adversarial position with the very one i am depending on to help me. I am wondering if I am the first c-diff patient she has had. I won't do anything (as far as picking up the ascol) until I can see her on Wed. My Dh is going to go with me.
I am so weary of struggling with this and do not want to be in an adversarial position with the very one i am depending on to help me. I am wondering if I am the first c-diff patient she has had. I won't do anything (as far as picking up the ascol) until I can see her on Wed. My Dh is going to go with me."It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Hi Sunny,
I agree with the ID doc, for what it's worth. When you go to the GI doc on Wed., be assertive and very clear about what YOU want.
The Entocort is the first line of defense, as you noted. Asacol may or may not work. I am one who had no respose at all to it.
I also question your doc's plan to stay on immodium/Lomotil. Some (like Dr. Fine) believe that it is not a good idea to keep taking antidiarrheals. They feel it is best to "let the BM out", not let it sit for long periods in the colon. (I guess because of the bile salts, food antibodies, etc. that may be toxic if they stay in one place too long).
Of course, antiDs are OK when used occasionally.
I'll be thinking about you.
Love,
Polly
I agree with the ID doc, for what it's worth. When you go to the GI doc on Wed., be assertive and very clear about what YOU want.
The Entocort is the first line of defense, as you noted. Asacol may or may not work. I am one who had no respose at all to it.
I also question your doc's plan to stay on immodium/Lomotil. Some (like Dr. Fine) believe that it is not a good idea to keep taking antidiarrheals. They feel it is best to "let the BM out", not let it sit for long periods in the colon. (I guess because of the bile salts, food antibodies, etc. that may be toxic if they stay in one place too long).
Of course, antiDs are OK when used occasionally.
I'll be thinking about you.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Ah, Sunny. So sorry about these additional distresses. I don't blame you for not taking the Asacol and I hope the Dr. will be more pliable about the Entocort. I'm so sorry you have to wait so long to see her.
Love, Shirley
So sorry about these additional distresses. I don't blame you for not taking the Asacol and I hope the Dr. will be more pliable about the Entocort. I'm so sorry you have to wait so long to see her. Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi Sunny,
We certainly can sympathize with you about dealing with your doctor. None of us go to our doctor with a desire to argue over our treatment, and while it shouldn't be necessary, it seems to be a somewhat frequent problem with our GI docs.
FWIW, I agree with Polly, (and the ID doc). In case you're interested, and unaware of this, here is why regular, long-term use of Imodium and/or Lomotil is not a good idea:
The active ingreditent in Imodium is loperamide hydrochloride, and the active ingredient in Lomotil, is diphenoxylate hydrochloride - both are weak, long-acting opioids, and both are anti-motility medications, which means that they interfere with both normal and abnormal peristaltic contractions of the colon.
Loperamide, though related to opiates, does not cause addiction. Diphenoxylate, on the other hand, is a man-made medication that at high doses can be addictive because of its opiate-like, mood-elevating effects. That's why atropine is added to Lomotil. IOW, if too much Lomotil is ingested, unpleasant side effects will occur, from ingesting too much atropine.
As Polly mentioned, while these meds are quite safe for occasional use, taking anti-motility medications on a long-term, regular schedule, can lead to problems, and using them to treat diarrhea caused by ulcerative colitis, C. diff and other intestinal infections caused by bacteria, can lead to more serious inflammation and prolong the infections.
Since the anti-motility meds work by reducing peristalsis, the result is constipation, and along with it, a long-term risk of impaction, which can be a life-threatening condition, if not addressed in time. One of our members experienced that problem, but fortunately, it was discovered in time, and corrected.
Immodium, for example, while not psychoactive, is a well known, (among addicts), "cure" for heroin/opiate withdrawal symptoms.
Tex
We certainly can sympathize with you about dealing with your doctor. None of us go to our doctor with a desire to argue over our treatment, and while it shouldn't be necessary, it seems to be a somewhat frequent problem with our GI docs.
FWIW, I agree with Polly, (and the ID doc). In case you're interested, and unaware of this, here is why regular, long-term use of Imodium and/or Lomotil is not a good idea:
The active ingreditent in Imodium is loperamide hydrochloride, and the active ingredient in Lomotil, is diphenoxylate hydrochloride - both are weak, long-acting opioids, and both are anti-motility medications, which means that they interfere with both normal and abnormal peristaltic contractions of the colon.
Loperamide, though related to opiates, does not cause addiction. Diphenoxylate, on the other hand, is a man-made medication that at high doses can be addictive because of its opiate-like, mood-elevating effects. That's why atropine is added to Lomotil. IOW, if too much Lomotil is ingested, unpleasant side effects will occur, from ingesting too much atropine.
As Polly mentioned, while these meds are quite safe for occasional use, taking anti-motility medications on a long-term, regular schedule, can lead to problems, and using them to treat diarrhea caused by ulcerative colitis, C. diff and other intestinal infections caused by bacteria, can lead to more serious inflammation and prolong the infections.
Since the anti-motility meds work by reducing peristalsis, the result is constipation, and along with it, a long-term risk of impaction, which can be a life-threatening condition, if not addressed in time. One of our members experienced that problem, but fortunately, it was discovered in time, and corrected.
Immodium, for example, while not psychoactive, is a well known, (among addicts), "cure" for heroin/opiate withdrawal symptoms.
Tex
Hi Sunny,
I'm sorry your journey is such a rollercoaster. I like to think that we're paving the way for MC patients down the road. Maybe our struggles and findings will be to their benefit. Maybe we're training our doctors and they'll be able to help other's better. I have to look for the good things and hope or it gets too discouraging.
I'll be calling my doc in the morning too.....
I'm sorry your journey is such a rollercoaster. I like to think that we're paving the way for MC patients down the road. Maybe our struggles and findings will be to their benefit. Maybe we're training our doctors and they'll be able to help other's better. I have to look for the good things and hope or it gets too discouraging.
I'll be calling my doc in the morning too.....
Becky
Just a thought.. could the cost of the Entocort be a reason the doctor doesn't want to prescribe it? At $400 a month for 3 pills a day the HMO docs don't seem any too willing to prescribe it.
Most doctors also know nothing about it and are unwilling to prescribe it. After seeing what it has done for me ..my family doctor is now willing to prescribe it so I don't have to make the long trek to Houston to see the GI doctor.
grannyh
Most doctors also know nothing about it and are unwilling to prescribe it. After seeing what it has done for me ..my family doctor is now willing to prescribe it so I don't have to make the long trek to Houston to see the GI doctor.
grannyh