Question for follow up visit

HockeyMom · Post by **HockeyMom** » Fri Nov 25, 2011 7:07 pm

Happy Thanksgiving everyone!!

I worked all day yesterday, but my boys helped out and we had a great GF/DF/SF dinner when I got home. My husband has been gluten free for years so that's not real hard for me to deal with but the DF part of it is sort of interesting to deal with!!

I want to know what y'all think about my follow up visit with the GI doc 12/16. I did pepto for 5 weeks then was switched over to entocort as she didn't think the pepto was doing enough for me. Prior to starting the pepto I got on this site and basically went GF/DF. Enterolab testing put me positive for soy also..so that is gone (not like I was doing much of that anyway) too. I was on 8 weeks of 3 entocorts, just started to taper to 2/day this week (for 2 weeks), then will do 1/day for 2 weeks. I know this isn't very long from reading this site, right??

I don't think entocort is a miracle drug for me at all. I'm basically the same as I was on the pepto and have had to continue taking immodium (granted, not much..but what I was taking as a "maintenance" dose for years before I was diagnosed) daily. Don't get me wrong...life is much better, I'm back at work, I don't have to run to empty rooms emergently in my hospital to use the toilet anymore!! That's progress people!! BUT, I continue to need to emergently stop 1-2x/week on the way to work in the morning..even that is better than it was but is still very frustrating.

So, I really think that the diet is what has changed my life. What do I say to the doctor?? I really don't want her to think that all this got better with just the meds!! (Remember I told her I went gluten free before she prescribed the entocort...she said, "why?"). How do I handle this people? If we don't let them know what is helping..they will think it's just the meds, right??

Hockey Mom

draperygoddess · Post by **draperygoddess** » Fri Nov 25, 2011 7:40 pm

Can you take your Enterolab results with you?

Post by **tex** » Fri Nov 25, 2011 8:32 pm

Hi H.M.,

That's a tough question to answer, because the answer really depends on whether or not she is open-minded at all. Many GI docs are not. We've had more than a few members achieve remission by diet changes, and when they excitedly told their GI specialist the good news, he or she cruelly laughed at them, and told them they were wasting their time with diet changes, and they should go back to eating a "normal" diet. Some GI docs can be unbelievably dense.

It seems to come with the turf.

Recently, though, more and more members are finding that when they tell their doctors how diet changes allowed them to get their life back, they seem interested, rather than pejorative, so maybe the word is slowly getting around. It's difficult to predict how any particular doctor will react, though.

It seems so ridiculous that the doctors put so much faith in those meds, because with MC, a few days after the meds are discontinued, the symptoms come right back, (unless the patient has been on an effective diet long enough for a significant amount of healing to take place). In your case, though, it sounds as though the Entocort is not providing much benefit, anyway, if you're still having symptoms after 8 weeks of Entocort treatment. It appears that your symptoms have improved in spite of the Entocort, not because of it. As you say, though, that's not the way your doctor will see it.

I don't know where you're located in Colorado, but Dr. Scot Lewey, (located in Colorado Springs), is arguably the premier celiac and MC gastroenterologist in this country, and since he is known on the internet as "The Food Doc", he understands how to properly treat MC. Unfortunately, he only accepts patients who are residents of the state of Colorado, but he has treated at least a couple of our members, and they were very happy campers.

Tex

Gloria · Post by **Gloria** » Fri Nov 25, 2011 9:58 pm

FWIW, I think that Entocort is helping you more than you think. It doesn't sound like it's doing the entire job, but it doesn't sound like being GF, DF, and SF are, either. IOW, I think you have more food intolerances.

Entocort usually brings complete (but temporary) remission from symptoms, at least the first few regimens of taking it. I would take more time getting off of it, focusing on what other foods might be causing problems.

I hope I'm wrong and you'll be fine once you're off Entocort. Stopping 1-2 times a week to go to the bathroom is still quite a way from being ready to stop one of your treatments, IMO.

Good luck!
Gloria

HockeyMom · Post by **HockeyMom** » Sat Nov 26, 2011 3:34 pm

Thanks for the replies people. Well, I live closer to Colorado Springs than Denver so getting to Dr Lewey isn't too far at all. I'll have to research him a little more.

I only did the gluten/dairy/egg/soy Enterolab test thinking I'd start with that. I've been dealing with this since February of 2008 so I know I'm digging myself out of a big hole and from all the reading here it sounds like it takes time for healing to occur.

Tex, I will mention the dietary changes I've made to the doc and WHY I MADE them..she can take it any way she wants huh?

So..should I push for taking the entocort longer then??? By my visit I will have tapered down (or off..) it so I guess I'll know if it really was helping or not right?

Last question...where do you start with trying to eliminate other foods when you aren't in remission yet?? More testing??? I think I may need to start saving up for that!! Frustrating..

I'm better, really I am!!! I guess I just want to have better control of this at this point!! I can stop eating anything if I just know what it is!!

As the old Bartyles and James commercial said.."Thank you for your support!"

HockeyMom :cool:

Joefnh · Post by **Joefnh** » Sat Nov 26, 2011 3:46 pm

H.M. One thing to keep in mind is that entocort works mainly in the large intestine, in your case it may be that the affected areas are in the small intestine. I would talk about blood tests to look for other IBDs like crohns that present in areas not well controlled by the entocort. You may want to ask for the pill camera to look at the small intestine if that's not already been done.

If you can make it to Dr Lewey that would be phenomenal. I used to live in Colorado Springs and Woodland Park for about 10 years....I miss the area, it was wonderful.

Joe

Post by **tex** » Sat Nov 26, 2011 3:57 pm

HockeyMom wrote:So..should I push for taking the entocort longer then??? By my visit I will have tapered down (or off..) it so I guess I'll know if it really was helping or not right?

That sounds like a plan. If it appears to be helping, and you're not having any major side effects from it, yes, it can certainly make life easier, while the diet is allowing the gut to heal.

If you want to do additional testing, the "C" panel at Enterolab, for 11 other antigenic foods might be helpful, but many members choose to do mediator release testing, (MRT), in combination with the LEAP program, to track down additional food sensitivities. The MRT is a blood test, and it's not a definitive test, like the IgA antibody tests at Enterolab, but it tests for hundreds of foods and chemicals, and your results can then be verified by trial and error dietary testing, with the help of a dietitian trained and certified to work with the program. It costs roughly twice as much as the Enterolab panel, but it's a much more extensive test, of course.

Here are some discussions on MRT:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=66

If you decide that you want to try the MRT, you will need to work with a local dietitian. One of our members, Mary Beth, is certified for that program, so she can help you find a qualified dietitian in your state, hopefully in your local area.

Tex

HockeyMom · Post by **HockeyMom** » Sat Nov 26, 2011 8:44 pm

Wow, so much info to muck thru!!! Why would I think this whole thing would be easy anyway?? I'm a physical therapist..I should know better...nothing with the human body is black and white!! My patients want it to be black and white, want a time table on things...and I just tell them everyone is different

I'm just a bad patient

I'm not too far north of Colorado Springs in Larkspur..home of the Colorado Renaissance Festival (and that's it..just an intersection with a bar and post office..). Real pretty at 7,000 feet, pine trees/deer/elk. We had to put our last elderly dog down in September and since then the deer are just taking over the property and eating anything they can!!!

They told me with my initial colonoscopy in 2008 that I didn't have Crohn's..could that have changed?? I've had patients in the hospital do the pill camera thing..but I think with those folks they were looking for gi bleeding..not the healthiest folks..

I'll look into the MRT thing and see what that's about and look again at further Enterolab testing.. I wonder if any of the dieticians at the hospital specialize in that sort of thing?? Info overload people!!!

HockeyMom

Joefnh · Post by **Joefnh** » Sat Nov 26, 2011 9:10 pm

H.M. The pill camera is used often to just have a better look at the small intestine as the colonoscopy can really only access the large intestine and a small part of the end of the small intestine near the cecum. In cases where there is a suspicion of IBD activity in the small intestine the pill camera is often used.

I do miss Colorado, i enjoyed my time there, Woodland Park was great, also a very small town (at the time) of only about 3000. Everyone knew everyone else. The summers were warm and dry....the winters although cold were not as cold as we get here in New Hampshire.

I'm sorry to hear about you having to put your dog down. I have a golden retriever that is just a ball of love, and I can't imagine what it will be like when that day comes.

Take care H.M.

Joe

Post by **tex** » Sat Nov 26, 2011 9:18 pm

Things can change, of course, but unless you're passing blood, there's really no reason to suspect Crohn's. If I recall correctly, I believe I read about a new blood test for Crohn's that should be available by now.

I don't know about hospital dietitians, but most doctors harbor an intense dislike of internet labs that work outside the conventional medical community.

Tex