Why GI docs know so little about MC

[grannyh]

I separated my posts because even if they are related.. they cover different subjects.

I love my GI doc and tell him every time I see him how lucky I am to have him!

He admits little is known about MC and the cause.. my first post.. they ARE beginning to wonder if the colonoscopy preps are triggering underlying conditions that may never have surfaced if the preps had not been used. Anyone my age remembers when you were admitted to the hospital for a colonoscopy and were given enemas the night before. Now insurance companies don't want over night expenses and the drug companies have come up with "gut draino" that lets the patient suffer at home and fill their drawer all the way to the hospital the next day for the procedure:)

My doctor is associated with the Medical Center in Houston and there are lots of researches who collaborate. Their main problem is... no one is tracking the patients on a consistent basis. He puts MC patients on entocort.. and if it works they don't come back.. or just get refills each year. He told me I never had to come back to get refills but since my husband goes in every year or so for another condition.. I keep in touch with him.

He said patients move, change doctors, any number of reasons for not keeping in touch and letting the doctor know how they are doing. Then there is the cost of entocort.. a biggie if you don't have insurance.

He said it used to be that MC was an illness of "old white women" (I helped him out with the phrasing here). Now it is showing up in all age groups in almost alarming numbers.. which is one reason they are beginning to think the colonoscopy preps may play some role in so many new cases now.

I have told him about this site in the past and don't know if he has bothered to check it out or has passed it on. I told him there are probably more people in one place on this site with the same illness than anywhere else in the world!

I told him that many people have been able to control MC with diet alone but I didn't want to do that:) I hate to cook and what I was able to eat was quite limited.. I wanted my life back and to eat "normal food".

He said that other than the entocort route there has been nothing else with low risk that he was fairly certain that would work for most people.

As we know here... when you go the diet route..it can be tedious to find what you can and cannot eat.. but if you are persistant ..you can get MC under control without medication.

For me, the great thing about this site is that you can go either route (medication or diet) and still be accepted here.
grannyh

[klhale]

Thanks Granny,

I can tell you that the preps did not cause my MC. I never had a colonoscopy until a year or so after I got MC. I was simply too sick for the colonoscopy. The Docs tried to give me one when I was very ill, and the prep did make me more deathly ill. I was bleeding from the prep and thought I was going to die. Needless to say, when they tried to go in my colon, it was so swollen and oozing pus and blood that they had to stop the procedure and put me on antibiotics.

I did finally have a colonoscopy a year later after taking prednisone and the MC was diagnosed.

Needless to say, I am very afraid of Colonscopies.

I am one of the people that got a script for Entocort recently and did not go back for the procedure. I am afraid the procedure itself will make my MC worse.

Karen

[grannyh]

I told my GI I never wanted another colonoscopy unless I was on death's door and already in the hospital and cleaned out already from my CC. He laughed and said he didn't blame me. This was when I first met him over 5 years ago. He said that once I had the diagnosis he saw no need to do another scope (unless I had some other problem).

I do see that you were worse after the prep.. that might say something about the preps as well. My doctor isn't saying all MC cases are caused by the preps.. it is just that they may irritate the colon in many people and trigger it in people who may have never suffered from it (roused it from being a dormant illness).
grannyh

[tex]

He said that once I had the diagnosis he saw no need to do another scope (unless I had some other problem).

It's easy to see the difference between a GI doc who knows what he's doing, (such as yours), and one who is still practicing on a "learner's permit". Quite a few members have had problems with GI docs wanting to do a colonoscopy, when they had just had one within the past year, or even within the past month or so. Obviously, docs like that don't know much about the disease, and they're trying to use their patients as "guinea pigs", to learn on.

Thanks for the additional information.

Tex

[grannyh]

The only reason he is doing scopes on the new referred patients with massive D is that they come to him with no diagnosis.. and he ALWAYS does biopsies now in these new cases.. and those that are coming to him who have recently had the scope done turns out they all have some form of microscopic colitis. He is a researcher at heart I think.

We asked him about a procedure for acid reflux for hubby. He said that so far almost every patient who has had the procedure is back on their meds (like prevacid) within 5 years. Thus he does not recommend the non surgical procedure being touted by the hospital magazines we get every month. Hubby had been concerned about being on acid reflux meds for 25 years.. so that is why he asked about the procedure...

This doc seems to have common sense which is so lacking in most doctors.. (that's my opinion):)
grannyh

[MBombardier]

I just remembered that I am supposed to see my GI on Jan. 11th. He used to be in the research field but went back to seeing patients some years ago because he missed them. He apparently misses the research part, too, because he told me that my MC earned me a colonoscopy every three years. I don't think so. Anyway, he seems to be open to learning about MC. I am taking him some information I have accumulated in the last three months from being part of this board, but I am dreading seeing him because he already told me that he thought that I should take his advice as the professional treating my illness. Although that broke the ice and allowed some real communication...

That's interesting about the GERD, too, Granny. I struggle with heartburn, and though my D seems pretty much under control with diet and I have been experimenting with things like squash, I think I may go back to the plain chicken, sticky rice, etc., because of the heartburn. I just can't stomach (pardon the pun) the taste of ACV, and I hesitate to use Tums or other OTC remedies too often. I am staying away from the PPIs.

Probably what would be most helpful would be losing weight, and I am going to talk to my GP about my thyroid next week as he just cut the dose after my last test results. It just seems like a see-saw, one thing and then another.

In the meantime, I am reading Relaxation Revolution that Polly recommended, and doing what I am learning in there, and working on living in the moment but with a view to tomorrow. And I know that this, too, shall pass...

Sort of stream of consciousness there, as I am reading this over...

[wonderwoman]

For me, the great thing about this site is that you can go either route (medication or diet) and still be accepted here.
grannyh

I agree. Everyone is different.

[Gabes-Apg]

the day my GI doctor gave me the diganosis and the scripts for the questran, dipentum (anti inflammatory that gave me headaches and the leading side effect is diarrhea) and the gastro stop (that had lactose)

he said that i wouldnt need to come back unless i had chronic symptoms again. He said it was up to my GP to sort out the meds etc for any other health conditions that may be impacting on the MC
thank goodness i found this group of people, i am skeptical i would have attained reasonabole control on the symptoms otherwise.

The GI specialist also said that majority of MC suffers were over the age of 50, this site soon proved that theory wrong!

[harma]

Well I am sure the colonoscopy didn't cause my MC. I had one, because I have MC and I could get a diagnose. Also I do get follow up app. with my GI and he doesn't do colonoscopy's for fun. He told me, with MC you only need one, once, to get diagnosed and after that never again (unless of course other bowel problems turns up).

I do agree on the knowledge part of GI and MC's. That is, I think, because it always was a rare disease (my GI only sees 3 of 4 a year in his practice) and they don't consider it as a real serious disease, like Crohn or UC. But thanks god nowadays for knowledge on our disease we don't depend on our doctors anymore, because of internet.

[natythingycolbery]

I am taking him some information I have accumulated in the last three months from being part of this board,

I don't know if you have seen the thread that I posted yesterday about the discovery of a link between food intolerance and IBD. It might be of some help to you

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12907

[MBombardier]

Yes, thank you, Naty!! That's one of the things I am taking in!

[MaggieRedwings]

Well I can sure say that the colonoscopy did not cause my CC. It was rageing prior to it and also after it. I also told my GI no more scopes and adieu to him. Diet alone is working for me.

Maggie

[grannyh]

You are proof that diet alone can work for some folks. This is great inspiration for all. One thing you might do, though, is to let the GI doc know how you achieved remission so he MIGHT pass it on to other patients:)
grannyh

[TooManyHats]

If I haven't already said so, please let me now express how grateful I am to have found this site.

So far, diet alone is working. I'd like to look into cholestid for times when the disease might flare. From what I've read, it seems like a drug I would consider taking, but only for times when I've slipped up and need to get things back in order.

I plan to go "armed" with studies when I see my GI next month. I'll also be telling her what I HAVE been eating so she doesn't think I'm sitting around eating bowls of white rice at every meal. Education, one doctor at a time.

[tex]

Education, one doctor at a time.

That's a great thought, and it fits right in with the way that we often have to handle our recover with this disease - one day at a time.

Tex