My Interesting Condition: An Update

[maggiesara]

I finally had my appointment with Dr. Herron at Sinai. He's ordered an abdominal CT scan, as I have so much scar tissue that he can't get a sense of how large the hernia is. He's reluctant to make any statements about when/how to fix it until he's seen the scan. Which sounds reasonable.

I didn't love the nutritionist (though I am aware that I am predisposed not to love any nutritionist). Among other things, she has some confusion with reference to number of grams vs. percentage of intake (she initially suggested that I try cutting fat to 30 grams a day, and when I said I thought that would be very difficult to do without massively increasing my carbs, we agreed that in fact she probably meant 30% of calories). And she wants me to be eating about 1700 calories a day. And finished up by saying that in fact fat should be about 55% of total calories. Basically, I didn't find her very helpful.

(FWIW, the 30 grams of fat she initially suggested? Based on her belief that I should be eating 1700 calories a day -- and I don't know where she got that number from, either -- that would put me at about 16% fat. Which is roughly half of the American Heart Association recommendation, and very close to Dean Ornish territory. It would also mean that -- if I didn't want to increase my carbs over 100 grams a day -- I would need to be eating more than 250 grams of pure protein a day. That's about nine chicken breasts. And you wonder why I didn't find her helpful.)

[newyorkbitch]

So glad you saw him finally ! When's the scan?

[maggiesara]

Gotta call tomorrow to make an appointment. Realistically, probably sometime after the 18th.

[ttfulmer]

Hang in! I am glad you are going to get it fixed. It is important and You are important. Keep us posted.

[Girlrocker]

I'm so glad you finally saw Herron and you're on your way. Nutritionist, what can I say, you know we know more than they do generally speaking. I've been lucky to have two good ones but I still learn more from people living this life on support boards, always have. That said...what is the goal of the diet they are suggesting for you, what is that they want you to do. and maybe we can help with suggestions in real terms Definitely keep us posted once you schedule and have the scan.

[maggiesara]

After a long chat with a friend in the UK, I've decided to do the following: Do a rigorous no-grain diet for a week, and track the results, and then, when I'm back in late June, do a rigorous lower-fat diet for a couple of weeks, and track the results. Andrea's point was that if I try to do both at once, I will not be able to tell which (no-grain or lower fat) is responsible for a given change. If neither option entirely does the trick, I'll talk to the nutritionist about a FODMAP plan -- this is a really complicated, really PITA diet that was developed in Australia for people with IBD and related problems. It is just a huge, huge nuisance -- basically, you can't eat anywhere except your own kitchen, and you can't use any packaged products of any kind. AND you're supposed to follow it rigorously for a minimum of eight weeks. I really hope it doesn't come to that. And I'm going to do some research on fecal transplant for IBD and similar issues. Soooooo.....that's my new plan.

[newyorkbitch]

Eliminating FODMAPs is an interesting idea.

But why not just try an elimination diet...eliminate carbs, do low fat, eliminate dairy for a week. Then add in only one of those and see what happens.

[goodkel]

I agree with NYB. Why not just try a basic elimination diet first?

[bboop]

Have you had a colonoscopy? That finally diagnosed my collagenous colitis and I'm so glad to have finally found out what was going on.

Try the elimination diet...do that before going whole hog on the other two. It's easier and it will help you to determine what's causing the problem. If it doesn't detect anything, then try the other diets.

I actually don't remember what your problem is, so if you can tell us again, it would be helpful. I think I kinda remember - it's diarrhea, right? If so make sure they check you for something physical and then you can do the diets.

You may have already done all of this so ignore my suggestions. I just know that for me sometimes I would wake up in the middle of the night covered in poo...it was awful. I had to walk out of the grocery store more than once, because I was shitting myself before I could get to a bathroom. It was a nightmare. If you are dealing with all of this, my heart goes out to you.

[mistercy]

Hi Maggie! So glad you had your appointment with Herron at Mt. Sinai, I was just there with him yesterday, getting my staples removed after my hernia/ plastics surgery. I think he is the bomb! Thank you NYB for recommending him! I haven't found a nutritionist yet who seems to have a good understanding of the DS. I've been getting most of my nutrition advice from the people here on the forums who have had the DS, and have been finding tips and tricks that work for me as time goes on. I also concur with everyone's advice here - try elimination diets before going whole hog. BBoop's suggestion of a colonoscopy also seems to make sense considering the issues you have been dealing with. Shaking critters hoping everything works out for you, Maggie!

[michellemj]

Glad you found Herron helpful. and yes, the office nutritionist is less than helpful.

I'm familiar with FODMAP elimination. It is indeed a PITA, but may be helpful. Lots of recipes do exist tho as it is popular (?) for those who have lots of belly issues.

Primal Palate is an amazing web site that has TONS of recipes (both their own and user-submitted) and can be sorted by grain-, nut-, dairy-, FODMAP-, etc free.

Hang in there.