Disgusted with my GI, results of Jan 9 visit

[wonderwoman]

I called to make an appointment with my GI last November and couldn’t get in until Jan 9th. At the time I made the appointment I was having normal BM’s and was weaning myself off of Entocort again. (1 every third day) However, whenever I am “normal” I have a terrible pressure like feeling in my rectum that does not go away after a BM. When I am standing I don’t have it but just as soon as I sit it returns. Sometimes I have it when I go to bed and it keeps me from getting to sleep. It was for this reason that I made the appointment with the GI. My daughter was visiting and she insisted I make an appointment just to rule out disease because every time I sat down I would jokingly say, “I have a pain in my ass again.”

Then the end of November the D returned and I increased the Entocort. In the past two years there were two times when I was in remission and when I had a flair I took 3 Entocort for only three days and then dropped down to two and eventually one and then began skipping days. This time I had to go to 3 Entocort and continued with 3 for almost a month before having a normal BM. I was using the 6 months supply I had ordered from Canada over a year ago when I had met my Medicare donut hole. I was beginning to run low on them so I needed to see the GI to get a refill.


It was during the time I was taking three a day that I saw the GI. He wants me off of Entocort in four months because of the side effects it can cause when taken long term. I wish I would have asked him what side effects he was referring to. He may have been pissed too because I had this RX from Canada. This is his treatment plan

3 Entocort for 2 months
2 Entocort for 1 month
1 Entocort for 1 month and then off, no more Entocort. See him again at that time.

He insists I need to be on 3 a day for two months to get my gut to heal.

Despite his orders, I dropped down to two a day right after seeing him because my BM’s were becoming too firm. I had been on 3 a day for 3 weeks. Should I have followed his orders and continued to take 3 a day?

I said we are finding here that if you are off of Entocort and then have to go back on it is not as effective the second and third time. Myself included. NOT TRUE! NOT TRUE! He said.

He disagreed with everything I said about CC that I learned here.

I said I was GF since March 2010 and have tried eliminating other foods to see if they are causing the flairs. He insists there is no correlation between food, gluten and MC.

I asked if they were finding what does cause MC and he said they haven’t come up with any causes for it. I mentioned NSAI’s and he said NO, NOT TRUE! I took NSAID’s and I also quit smoking, and had a colonoscopy just prior to my problems starting but I did not mention that.

He said he had no idea what would cause my rectal discomfort or pressure. None of his other patients have this. He sees on the average, 3 patients a day with MC. I told him I did not want to have a colonoscopy or sigmoid to check this out because I found on this forum that many of us experience a relapse after receiving one, myself included. NOT TRUE! NOT TRUE!

He told me again that he wants me to increase my fiber by taking 1 Tbs of Citrucel a day in a full glass of water. I said that was for constipation. He said it would increase the bulk. He gave me two Metamucil samples because he didn’t have any Citrucel samples. I tried them and had no ill effects so I did get some Citrucel. I know that fiber supplements are not suggested here but I thought I would give it a try. Have been on it for a week and find I am having larger BM’s. Don’t think it changed the firmness though. Still having Normans.

He told me I was to stay off the internet “chat rooms”. There is much incorrect information there. If I wanted to do research on the internet I was supposed to go to Mayo Clinic, Cleveland Clinic or to CDC.gov or NIH.gov I haven’t tried any of these. I prefer to get my answers here.

I was so upset when I left there. I came home and said to my husband, “My ass hole doctor is an ass hole.”

Because I was so upset with my GI, the next day I met with a Registered Dietician I had spoken to earlier. She gave me a very good price. Her husband is a nurse and he drew my blood and sent it to the lab for MRT testing for the LEAP program. I am curious to find out what other foods I may be sensitive to.

In September I was at Costco and saw a probiotic they were promoting with a $5. discount. It cost me $15. for 100 individually wrapped capsules. It is dairy, soy & gluten free. The brand name is Trunature Digestive Probiotic. Lactobacillus acidophilus and Bifidobacterium lactis 10 billion CFU’s. I was having a flair at the time and it helped immediately. I now take one every other day.

I also am taking l-glutamine simply because I have it here. A naturopath had suggested it a long time ago. My container ran out and my daughter gave me a large container when they moved that her husband was no longer taking. I try to take a teaspoon of it every day. Can’t say if it helps or doesn’t help.

I added the last two paragraphs on probiotics and l-glutamine only because I read a recent post regarding them.

[Brenda]

Charlotte,

Your doctor and my doctor must read from the same script. Some days I laugh to keep from crying. Whether intended or not, your description of the conversation cracked me up!

Just call it like it is!

Brenda

[MaggieRedwings]

Hi Charlotte,

When will the doctors stop drinking the Kool-Aid and start thinking and researching for themselves. He is an A/H. Maybe he should take a bit of time to research our site and he wouldn't be so quick to dismiss it.

Love, Maggie

[MBombardier]

Wow, what a jerk. I'm so sorry you had that experience!!

Mayo Clinic has out-of-date information about MC, or it did the last time I looked at it. Anything else that is of value is going to be here. It's like we have our own 1000-strong research group. Many forums do have bad information, but you can't discount them all because of that. In my opinion, most doctors are uncomfortable because their patients go on the internet and bring them things they learned there and either that information is wrong or the patient knows more than the doctor about the issue. Either way, it moves the doctor out of his comfort zone. Tex posted a good article about creative thinking that speaks to that.

FWIW, my GI believes that NSAIDs can be a cause of MC, and I think you can find research on the internet that backs this up as well. My GI also has had success treating his patients with the Adkins diet, and is totally on board with me on the gluten issue. There are good GIs out there, and hopefully in Phoenix you can find one who knows what he is talking about and who doesn't talk down to older people and dismiss their concerns by just telling them they need to eat more fiber. I suspect this played into his attitude, too.

I have a suggestion about the rectal pressure. It could be hemorrhoids. I cannot do "crunches" any more because of the pressure when I sit up. To tone my stomach muscles I have to do leg lifts. I don't have them very badly, but my GI said that everyone has hemorrhoids after a certain age.

[wonderwoman]

Marliss, I know Mayo Clinic is out of date because I have been to their site before. Therefore I didn't go there again.

It's like we have our own 1000-strong research group.

I was often wondering how many people are here on a regular basis that have been helped with this information. And then there are those who have been helped but no longer post, a lot like me. I only post when I'm having a problem and want advice. I would like to see some numbers to keep in my head so when I see him again I can give him this number and say they can't all be wrong.

Another thing is I can't find the post that Polly wrote a year ago or so that summarized MC . There were about 12 or 15 points. Many here were copying this and taking it to their GI's.

I have Cigna Health Care for Seniors and have to see their doctors. I could get a referral to see another GI at another one of their branches but what guarantee do I have that he would be any better. Maybe I need to check into it.

Another thing is he must be hard of hearing as he kept leaning closer to me to hear me and kept asking me to repeat myself. What does that tell you? Not a good listener.

[brandy]

Hi Charlotte,

Sorry for what you are dealing with. In answer to your question about how long to stay on 3 entocourt I would disagree w/ you doc and say you did the right thing. I just finished my round of Ento and basically listened to my body to tell me when to "step down." If I had constipation, i.e. "little rocks" for 3 days in a row then I would step down to the next level. I've only been off of ento for about 9 days so maybe not the best one for feedback. I also called the GI office during the regimen and the nurse said if I got constipation to step down to next level. My run on ento was approx the following and came about just by listening to my body: 3 pills 3 weeks, 2 pills 2 weeks, 1 pill about 10 days, 1 pill every other day about a month, 1 pill every 3rd day about a month, 1 pill every 4 days about a month, 1 pill every 5 days about two weeks then off.
The doc had given me the 3 month plan but I did a long taper off plan basically due to this forum. I had dizziness at all levels even at 1 pill or I would have probably tried for 1 pill every 7 days for four consecutive weeks then off but I could no longer stand the dizziness. Perhaps consider an extemely long taper off at the back end. I believe some users even pull the pill apart, pour out some, put capsule togther so you have say a 1/2 dose at the low end.

I'm getting a new GI next time. After mine told me "joint pain" does not exist for MC-----duh-----I'm only 50 and could not walk around the grocery store due to joint pain whereas 4 mths prior I was walking 7-10 miles per week I decided then and there I'm getting another GI doc.

Thanks for posting as your info is probably helpful to newbies. I think that Entocourt is kind of presented as a magic bullet by the GI doc and for me I found it to be a mixed bag due to side effects. Brandy

[Ginny]

Charlotte, I have been to 3 GI's so far and each has their good and bad points. I take away only the good. We are all so different and I think you know your body the best as to when to "up or lower" the meds. Now as far as the side affects, as my GI at Baylor College of Medicine said to me the other day when I said I can't be on 9 mg of Entocort forever, "they don't take away insulin from a diabetic". IMO, we so desperately wanting to handle this by diet and not meds that we can rush into reducing the mg. I have found this to be very true for myself. Since I am a "hard core" suffer I have finally made the mental jump to relax and take the meds. I am beginning to see some improvement.

Since you have had success, go with your gut (no pun intended) feeling, and listen to your body!

Keep us posted.

I will be facing the same situation next year and will only be able to see certain docs, so I do understand.

Love, G

[tex]

Should I have followed his orders and continued to take 3 a day?

Not in my opinion, because corticosteroids suppress inflammation, but they do not promote healing - they actually retard healing. There is no logical reason for taking more than the minimum amount that will allow you to maintain remission. Obviously, the believes that "one-size-fits-all", which is not only wishful thinking, it's overly-simplistic thinking.

NOT TRUE! NOT TRUE! He said.

To make a statement such as that, he appears to be not only ignorant, but rather stupid, since it clearly broadcasts his ignorance.

He disagreed with everything I said about CC that I learned here.

Why am I not surprised?

He said he had no idea what would cause my rectal discomfort or pressure.

I can certainly believe that, since he appears to know very little about digestive system problems, and their treatment, in general.

He told me I was to stay off the internet “chat rooms”. There is much incorrect information there. If I wanted to do research on the internet I was supposed to go to Mayo Clinic, Cleveland Clinic or to CDC.gov or NIH.gov I haven’t tried any of these. I prefer to get my answers here.

If your dumb GI doc was articulate enough to use the internet himself, he would find that the Mayo Clinic clearly states that NSAIDs should be avoided by anyone with MC. The kicker, though, is that the Mayo Clinic now recommends diet changes as the first line of treatment for MC, on their website. That should knock your doctor's hat in the creek.

Treatment for collagenous colitis and lymphocytic colitis often begins with lifestyle changes. In many cases, adjusting your diet will be enough to resolve your symptoms. If not, your doctor can suggest a number of effective medications for collagenous colitis and lymphocytic colitis. In rare cases, surgery is necessary.

http://www.mayoclinic.com/health/collag ... is/DS00824

I was so upset when I left there. I came home and said to my husband, “My ass hole doctor is an ass hole.”

Your description is perfect. The only adjective I would add, is the word "ignorant", because he clearly is an ignorant ass hole.

Clearly, his usefulness for treating MC is non-existent. If he actually treats 3 MC patients a day, that amounts to many hundreds, altogether - I feel truly sorry for them, to say the least.

Tex

[mzh]

RE: the rectal discomfort. I'm with Marliss. I have one internal and one external hemorrhoid. They are both fairly large and they irritate me at times. Sometimes when I have to urinate, the pressure from the full bladder on the internal one makes me want to have a BM. Once the bladder is empty, the intense urge to poo is gone. If I wait too long I get diarrhea or very soft ones because the irritation makes it move out of the colon too quickly. No doctor told me this but it happens the same way every time. The docs haven't experienced what we have so how can they say NOT TRUE about everything with such certainly? No, they shouldn't. Yep, take the good with bad - until you come across a better doc - and get the scrip from the bad one.

PS Some cooperative GPs, PAs,and nurse practitioners will also prescribe the Entocort; no need to rely on an inept GI doc. They always want to get us off it and Lord knows we've tried. Until they figure out a better way I'm staying on it as long as I have problems and until the source of the D has revealed itself.

PPS I went the fiber route (different kinds) and they all only made matters worse. Getting off coffee seems to have been the biggest help to me.

[wonderwoman]

Tex, you made me laugh. I will go to the Mayo clinic website and see what they say. Will check out the other sites he mentioned also.

Where can I find the article Polly wrote a year ago with about 12 facts about MC?

I was told I don't have hemorrhoids. I have really reduced the amount of decaf coffee I drink. Don't think my bladder is full when this happens, but this is interesting.

[tex]

I'm guessing that this is the post that you're referring to:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11951

In this thread, she adds an 11th rule:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=13769

Tex

[Lesley]

He told me I was to stay off the internet “chat rooms”. There is much incorrect information there

Are you sure you didn't go to my former doc?

I HATE the docs. They are mostly assholes. I haven't met a really good one yet.

[Martha]

Charlotte, I'm sorry your doctor was/is so unhelpful. And we have to pay on them on top of it all!!

[Gloria]

This is his treatment plan

3 Entocort for 2 months
2 Entocort for 1 month
1 Entocort for 1 month and then off, no more Entocort. See him again at that time.

He insists I need to be on 3 a day for two months to get my gut to heal.

Despite his orders, I dropped down to two a day right after seeing him because my BM’s were becoming too firm. I had been on 3 a day for 3 weeks. Should I have followed his orders and continued to take 3 a day?

Only follow his orders if your body agrees to them. Your body should be the determining factor in how you taper Entocort. If you decide that you can reduce, then reduce. I figured out a long time ago that GIs don't know much about treating MC on a long-term basis. I don't listen to their advice unless I agree with it.

I said we are finding here that if you are off of Entocort and then have to go back on it is not as effective the second and third time. Myself included. NOT TRUE! NOT TRUE! He said.

He ought to talk to me, though if he didn't believe you and your experience, he wouldn't believe me, either. He obviously doesn't listen to his patients and doesn't learn anything if it's not in a book.

we so desperately wanting to handle this by diet and not meds that we can rush into reducing the mg.

How true, Ginny. Why didn't I take Benadryl a couple of years ago? Because I thought diet should be fixing it. Now I realize that for some of us, diet can't do it alone. Most here can achieve remission through diet, but a few of us fall outside of the norm. When that happens, meds may be necessary.

Gloria

[harma]

from which century is your doctor Ginny with his attitude "you do as I tell you" and "only my information is right". Must be very frustrating. The impression what I get from my GI when it comes to entocort is "use it the way you like it". Well not exactly like that, but if things goes worse he will say "try to enhance the dosage" and if things go very well, try to reduce it or stop it and if it comes back, start again.

Now I realize that for some of us, diet can't do it alone. Most here can achieve remission through diet, but a few of us fall outside of the norm.

after over two years of diet and medication, getting the idea I am one of those "out of the norm" too. My last attempt to quit the medication, resulted in a return of the D on day 3.