Hi, I wanted to give an update as to where I am at and see if anyone has any advice. I have col. colitis (diagnosed end of July). I take 8 pepto pills a day. the pepto seems to be a bandaid, working enough to prevent diarreah but still have bloating, some pain, frequent bm's. Since first of July I have lost 19 lbs, and my hair is getting thin.
About 10 days ago I started gluten free, and then about 7 days ago went gf, sf and df. Over the last 7-10 days since I have changed my diet I have had good days and bad days. I have been resisting the lure of medication because I really want to give the diet a chance. I have been doing the elimination diet along with 1 egg and about 1/2 cup a coconut milk a day.
On my bad days it just drives me nuts trying to figure out what/if caused the bad day. How could I feel pretty good one day and so bad the next? Is it something I ate? Is it the pepto bismal making me sick because I have been on it for too long (8 weeks)?
I had two appointments with my GI docs (after my first GI doc I got one for a second opinion and am going to both of them). I got two completely different recommendations.
Doc 1 (very young and fairly inexperienced) told me that it was definitely time to go on endocort. She told me that I am not gluten intolerant, I can eat whatever I want, I am losing weight and hair because of malabsorption and the endocort will help. She said I could do whatever I want in regards to the pepto. If I wanted to try it longer I could, "it is your body and you can do whatever you want". She never brought up asacol as an option.
Doc #2 said it was time for asacol. She didn't' mention that the drug had lactose, but she did mention that some of the people with cc find relief with df. She also said that gf was not correct because I didn't test positive for celiacs. However, she did say that she has had a few patients who went gluten free who have had very positive results.
She also told me that she felt like my cc was gone and I now have IBS. She said that maybe I had them both together. She is going to do a sigmoidoscopy to see if I still have it. She said that endocort was way too strong a drug to try now, and the asacol should come first if I want to take medication. I hate the thought of this because it causes hair loss.
I told her I was really tired and having a hard time eating, and she thought that maybe I was depressed. I told her if I am depressed it is because every time I eat I feel sick and I have a hard time sleeping because my stomach hurts at night.
The good news is that she is looking at the whole picture and trying to rule out every little thing that could be possibly be causing my symptoms. The bad news is that I feel like she feels the cc is something that will go away (if it hasn't already) and I am stressing myself out and have IBS.
I have another appointment for a third opinion in October. It is really hard to get into a good GI. In the meantime, I was looking for advice on diet. Some days I feel like the gf, sf, df diet is really working, but then I have a really bad day. Is this common? My husband says I just need to hang in there and keep the diet going until I get the results back from the sigmoidoscopy and enterolab (I sent in my enterolab specimen yesterday).
Should I keep trying the gf, sf , df diet? Is it just going to take a while and bad days are common alongside good days? Any support on that would be great.
Thanks, Peggy
10 days in, 2 totally different dr. recommendations
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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blackcatjordie
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karenswans
- Adélie Penguin
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Peggy, I'm sorry you're having a hard time and that you're getting inconsistent messages from your doctor. I'm new at this too so I'm afraid I can't be of much help, but I wanted to let you know I understand.
I sent my Enterolab speciman on Monday. We should be getting our results around the same time.
I sent my Enterolab speciman on Monday. We should be getting our results around the same time.
Hi Peggy,
Your husband's advice is much better than the advice of both your doctors. It takes time for the diet to work, because it takes a long time for the damage to the gut that was caused by gluten, to heal. Having good days and bad days at that stage is typical, and that will continue for a while. Eventually, you will begin to notice that you are having more and more good days, and fewer and fewer bad days, as the healing progresses. It took a long time for the damage to your gut to accumulate, so recovery will almost surely take a significant period of time, as well.
Doctor #1 appears to be more up to date on the use of Entocort, but totally lacking in knowledge about the dietary aspect of treating MC.
Regarding doctor #2:
Apparently she doesn't understand Entocort, either. It appears that all she understands is that it's a corticosteroid, so she equates it with the other corticosteroids, which is not a valid approach. Entocort does have a somewhat higher risk of side effects, when compared with Asacol, but the risk is relatively slight, and Entocort is much more effective at controlling this disease, than Asacol. Many members here found that Asacol made their symptoms worse, not better.
If you are seeing some improvement in such a short time, obviously the diet is already helping. Why do you want to see another doctor, (who will probably tell you basically the same thing as the others - that diet has nothing to do with MC?
There are three basic treatment options for MC:
1. Drugs
2. Diet
3. A combination of drugs and diet.
You are already utilizing the diet, (apparently with good results), and you've already been offered the two "best" drug options for treating MC - namely Entocort and one of the mesalamine-based drugs, Asacol. There are no better options available, (except that there are better brands of mesalamine than Asacol). Why seek another doctor's opinion - there's nothing more that they can tell you. You simply need to decide which treatment program you prefer to use, and then stick with it until you get the results you want, or until you prove that it's now working. The diet alone will control your symptoms, if you give it the time your body needs to allow your gut to heal. If you want to suppress the symptoms sooner, one of the meds suggested by your doctors might help, but there are no other magic bullets out there, so I doubt that you will accomplish anything by seeking another opinion.
At least that's how I see it.
IMO, you're doing quite well, if you're already having good days, after only a week or so on the diet.
Tex
Your husband's advice is much better than the advice of both your doctors. It takes time for the diet to work, because it takes a long time for the damage to the gut that was caused by gluten, to heal. Having good days and bad days at that stage is typical, and that will continue for a while. Eventually, you will begin to notice that you are having more and more good days, and fewer and fewer bad days, as the healing progresses. It took a long time for the damage to your gut to accumulate, so recovery will almost surely take a significant period of time, as well.
Doctor #1 appears to be more up to date on the use of Entocort, but totally lacking in knowledge about the dietary aspect of treating MC.
Regarding doctor #2:
That doctor is apparently very inexperienced with treating MC, and she's trying to use you as a "guinea pig", to learn on. If you were diagnosed only 2 months ago, it would be absolutely asinine to even suggest that your mucosal histology might already be resolved. Histological restoration can occur in 5 to 10 years, but it is most definitely not going to happen in 2 or 3 months. She is totally lost.She also told me that she felt like my cc was gone and I now have IBS. She said that maybe I had them both together. She is going to do a sigmoidoscopy to see if I still have it. She said that endocort was way too strong a drug to try now, and the asacol should come first if I want to take medication.
Apparently she doesn't understand Entocort, either. It appears that all she understands is that it's a corticosteroid, so she equates it with the other corticosteroids, which is not a valid approach. Entocort does have a somewhat higher risk of side effects, when compared with Asacol, but the risk is relatively slight, and Entocort is much more effective at controlling this disease, than Asacol. Many members here found that Asacol made their symptoms worse, not better.
If you are seeing some improvement in such a short time, obviously the diet is already helping. Why do you want to see another doctor, (who will probably tell you basically the same thing as the others - that diet has nothing to do with MC?
There are three basic treatment options for MC:
1. Drugs
2. Diet
3. A combination of drugs and diet.
You are already utilizing the diet, (apparently with good results), and you've already been offered the two "best" drug options for treating MC - namely Entocort and one of the mesalamine-based drugs, Asacol. There are no better options available, (except that there are better brands of mesalamine than Asacol). Why seek another doctor's opinion - there's nothing more that they can tell you. You simply need to decide which treatment program you prefer to use, and then stick with it until you get the results you want, or until you prove that it's now working. The diet alone will control your symptoms, if you give it the time your body needs to allow your gut to heal. If you want to suppress the symptoms sooner, one of the meds suggested by your doctors might help, but there are no other magic bullets out there, so I doubt that you will accomplish anything by seeking another opinion.
At least that's how I see it.
IMO, you're doing quite well, if you're already having good days, after only a week or so on the diet.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.
O...M...G. Those two dimwitted responses by your doctors are exactly the reason why I haven't found a new GI doctor yet. Your second one took all the bad, outdated advice everyone has heard here and piled it all on you!! Depressed?? I would be too after medical encounters like that! Did she offer an anti-depressant too?!? She thinks the CC is gone?? It rarely goes away, and definitely not when you are still having symptoms!! 
IBS? That's a catch-all, "I don't know what's going on with you" diagnosis. But you already know what's going on--CC!! And a sigmoidoscopy is just another way to line her pockets!! 
Honestly, how is it possible that a medical specialty dedicated to the care of people's digestive tracts insists that what you eat has nothing to do with your digestive troubles!?!?!????
Sorry about the rant. Here's what I'd like to say to your GI docs:
You are doing the right thing by cutting out the top suspect foods. Enterolab results will be enlightening. I'm not sure how strict your elimination diet is, but your bad days may be the result of cross-contamination. I am nearly in remission, but can easily fall back into the old horrible symptoms after a careless restaurant meal.
Please stand up to your docs and make them aware that diet is helping. This is the only way we have right now to help others with MC - educating one doctor at a time.
IBS? That's a catch-all, "I don't know what's going on with you" diagnosis. But you already know what's going on--CC!! And a sigmoidoscopy is just another way to line her pockets!! Honestly, how is it possible that a medical specialty dedicated to the care of people's digestive tracts insists that what you eat has nothing to do with your digestive troubles!?!?!????
Sorry about the rant. Here's what I'd like to say to your GI docs:
You are doing the right thing by cutting out the top suspect foods. Enterolab results will be enlightening. I'm not sure how strict your elimination diet is, but your bad days may be the result of cross-contamination. I am nearly in remission, but can easily fall back into the old horrible symptoms after a careless restaurant meal.
Please stand up to your docs and make them aware that diet is helping. This is the only way we have right now to help others with MC - educating one doctor at a time.
For your docs
Please listen and believe Tex and the PP. I am so happy I did.
Glad you are doing Enterolab. It should help a lot.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
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blackcatjordie
- Posts: 12
- Joined: Sat Sep 03, 2011 9:56 am
thanks
thanks everyone for the good advice. After I posted this message I had called doc #3 in to see if I could get my appointment moved up. The office manager found out that I was getting a second (actually 3rd, but I didn't tell her that) opinion and told me that doctor didn't do second opinions as a courtesy to other docs. She said she had one doctor that did, but he was 65, and I couldn't get into him until end of November.
I was sitting here trying to figure out what to do when I got your message, Tex. I think you are right about getting another doctor. The reason I was worried is that I felt like I would be playing two different doctors and they both would find out and cancel me as a patient. I think the endocort would be the best option for me if I decided to take meds, but the other doc seemed more thorough and was going to run additional tests. I have never really been in that situation and do not know how it works. I think I am just going to go ahead and do the tests "for fun", but go to the endocort doctor if I need to go back.
Regardless I feel more encouraged about the progress of my diet changes. I guess I expected better results. I am going to stop beating myself up trying to figure out what I did different every time I have a bad day.
I also think I am going to go to an integrated health doctor (also called functional health). They have a program at a very respected hospital here in kC, KU Medical Center. I had a girlfriend go through their program for various reasons, and she is doing a lot better. I knew she has been doing a lot of labwork. I just called and asked her if she knew the company that is doing the labwork - guess what, it is enterolab. Hey, a doctor that believes in their work!
Thanks again.
I was sitting here trying to figure out what to do when I got your message, Tex. I think you are right about getting another doctor. The reason I was worried is that I felt like I would be playing two different doctors and they both would find out and cancel me as a patient. I think the endocort would be the best option for me if I decided to take meds, but the other doc seemed more thorough and was going to run additional tests. I have never really been in that situation and do not know how it works. I think I am just going to go ahead and do the tests "for fun", but go to the endocort doctor if I need to go back.
Regardless I feel more encouraged about the progress of my diet changes. I guess I expected better results. I am going to stop beating myself up trying to figure out what I did different every time I have a bad day.
I also think I am going to go to an integrated health doctor (also called functional health). They have a program at a very respected hospital here in kC, KU Medical Center. I had a girlfriend go through their program for various reasons, and she is doing a lot better. I knew she has been doing a lot of labwork. I just called and asked her if she knew the company that is doing the labwork - guess what, it is enterolab. Hey, a doctor that believes in their work!
Thanks again.
Two unbelievable GI visits. No - let me take that back. Two unfortunately believable GI visits.
Follow Tex's and your husband's advice and the rest of us here. Continue to follow your GF, SF, DF diet because it is working. You won't get any useful advice from a 3rd doctor; it will be similar to the first two.
Hang in there; it will get better.
Gloria
This is probably the most ignorant statement of all. IBS is simply a CC diagnosis without a biopsy. You don't need another sigmoidoscopy; you already have a diagnosis of CC.She also told me that she felt like my cc was gone and I now have IBS. She said that maybe I had them both together. She is going to do a sigmoidoscopy to see if I still have it.
Follow Tex's and your husband's advice and the rest of us here. Continue to follow your GF, SF, DF diet because it is working. You won't get any useful advice from a 3rd doctor; it will be similar to the first two.
Hang in there; it will get better.
Gloria
You never know what you can do until you have to do it.
Peggy,
As we say here (thanks to Tex) - "IBS" is doctor-speak for "I Be Stumped." It's just a catch phrase for cluelessness, truly. Both your docs are classic examples of the sort of frustration many of us have encountered.
There is no need to put yourself through a sigmoidoscopy - how will that make you feel better? The idea that you're depressed because of a 'syndrome' is just infuriating. I wonder how these docs would feel if they went through the symptoms you've been having for even ONE week??
Hang in there. It is both the curse and the blessing of this disease that specialists are often unhelpful (if not outright heading in the wrong direction). The upside of that is that *you* can seize the reins of this thing, starting with your Enterolab results, and get it turned around. It does take longer than we'd like - if you really are frustrated, you could try a very hard-core few days of homemade chicken broth, boiled potatoes and... not much else. I realize that's not a magic bullet, but it felt like one for me.
Please keep us posted, and let us know how we can help. We've been there, and we know what it's like.
Ooh - just before posting I saw your update - great news that you might be able to work with someone who understands and values Enterolab testing. The idea that you should feel intimidated about going to a doctor for a second opinion, in case the other doctor finds out, just shows you that they really don't have much to offer, and value their "club" and its exclusive membership more than they value helping you.
Hope the diet kicks in soon,
Sara
As we say here (thanks to Tex) - "IBS" is doctor-speak for "I Be Stumped." It's just a catch phrase for cluelessness, truly. Both your docs are classic examples of the sort of frustration many of us have encountered.
There is no need to put yourself through a sigmoidoscopy - how will that make you feel better? The idea that you're depressed because of a 'syndrome' is just infuriating. I wonder how these docs would feel if they went through the symptoms you've been having for even ONE week??
Hang in there. It is both the curse and the blessing of this disease that specialists are often unhelpful (if not outright heading in the wrong direction). The upside of that is that *you* can seize the reins of this thing, starting with your Enterolab results, and get it turned around. It does take longer than we'd like - if you really are frustrated, you could try a very hard-core few days of homemade chicken broth, boiled potatoes and... not much else. I realize that's not a magic bullet, but it felt like one for me.
Please keep us posted, and let us know how we can help. We've been there, and we know what it's like.
Ooh - just before posting I saw your update - great news that you might be able to work with someone who understands and values Enterolab testing. The idea that you should feel intimidated about going to a doctor for a second opinion, in case the other doctor finds out, just shows you that they really don't have much to offer, and value their "club" and its exclusive membership more than they value helping you.
Hope the diet kicks in soon,
Sara
Peggy,
That doctor who refuses to offer a second opinion is clearly a member if the "Good Old Boys Club", an informal, "undeclared", and loosely-knit collection of GI specialists, dedicated to preventing misdiagnosed, and otherwise dissatisfied patients from learning the truth about their digestive system problems. Doctors who feel that way probably have a reason - it could be insecurity, lack of knowledge, an inappropriate agenda, conceit, or whatever, but that attitude is definitely not in the patients' best interest.
I agree that you would be much better off, (if you wish to seek treatment from a doctor), seeing a doctor who recognizes the value of the Enterolab tests, and who believes in integrated health techniques.
Besides the pointlessness of it, the problem with agreeing to a sigmoidoscopy at this point, is that most of the markers for CC and LC are in the terminal ileum, the right-side colon, and the transverse colon. The left-side, (sigmoid), colon, and the rectum, virtually always have less involvement, and sometimes have almost no involvement at all, even though the right-side colon may be highly inflamed. According to research, approximately 10% of CC and LC cases are completely missed, because a sigmoidscope was used, instead of a cololoscope. When that happens, the doctor is virtually always successful in convincing the patient, (incorrectly, of course), that they do not have the disease, so the patient goes untreated, or incorrectly treated, (usually for IBS - which as has been pointed out, does not even exist).
So, if you submit to a sigmoidoscopy exam, the best that can happen is that the doctor will reconfirm that you have CC, (which you already know, so why bother), or the doctor will fail to find any MC markers, and she will incorrectly convince you that you are magically "cured". You can't win, with that plan. All it would do is to help educate a doctor who must have been sleeping through lectures, instead of learning about the disease. It's not your job to try to make up for her lack of training - she can do that on her own time, instead of charging you for it.
MC is forever - once you have a valid diagnosis, it will never change. After a few years on the diet, your histilogical markers will return to normal, (IOW, biopsies will show negative results), but that doesn't mean that you are cured. It only means that you are in remission. MC can be controlled, but it cannot be cured. At any point in the future, all you have to do is to return to your previous diet, (full of gluten, casein, etc.), and it won't take long for your symptoms to return, and your biopsies will once again show a positive result.
At least that's how I see it.
Tex
That doctor who refuses to offer a second opinion is clearly a member if the "Good Old Boys Club", an informal, "undeclared", and loosely-knit collection of GI specialists, dedicated to preventing misdiagnosed, and otherwise dissatisfied patients from learning the truth about their digestive system problems. Doctors who feel that way probably have a reason - it could be insecurity, lack of knowledge, an inappropriate agenda, conceit, or whatever, but that attitude is definitely not in the patients' best interest.
I agree that you would be much better off, (if you wish to seek treatment from a doctor), seeing a doctor who recognizes the value of the Enterolab tests, and who believes in integrated health techniques.
Besides the pointlessness of it, the problem with agreeing to a sigmoidoscopy at this point, is that most of the markers for CC and LC are in the terminal ileum, the right-side colon, and the transverse colon. The left-side, (sigmoid), colon, and the rectum, virtually always have less involvement, and sometimes have almost no involvement at all, even though the right-side colon may be highly inflamed. According to research, approximately 10% of CC and LC cases are completely missed, because a sigmoidscope was used, instead of a cololoscope. When that happens, the doctor is virtually always successful in convincing the patient, (incorrectly, of course), that they do not have the disease, so the patient goes untreated, or incorrectly treated, (usually for IBS - which as has been pointed out, does not even exist).
So, if you submit to a sigmoidoscopy exam, the best that can happen is that the doctor will reconfirm that you have CC, (which you already know, so why bother), or the doctor will fail to find any MC markers, and she will incorrectly convince you that you are magically "cured". You can't win, with that plan. All it would do is to help educate a doctor who must have been sleeping through lectures, instead of learning about the disease. It's not your job to try to make up for her lack of training - she can do that on her own time, instead of charging you for it.
MC is forever - once you have a valid diagnosis, it will never change. After a few years on the diet, your histilogical markers will return to normal, (IOW, biopsies will show negative results), but that doesn't mean that you are cured. It only means that you are in remission. MC can be controlled, but it cannot be cured. At any point in the future, all you have to do is to return to your previous diet, (full of gluten, casein, etc.), and it won't take long for your symptoms to return, and your biopsies will once again show a positive result.
At least that's how I see it.
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.