Been away for awhile

Pat · Post by **Pat** » Wed Aug 19, 2009 6:38 pm

I think the last update I was taking Singulair in addition to Entocort. I thought Singulair was helping but I think I was just sticking to my diet better, especially the fructose. I really didn't falter with gluten or dairy. I have been on Entocort for over 4 months and it helps but not normal. I have a much harder time with fructose than most on this board. Just yesterday I started Gastrocrom by my allergist. He said it was worth a try since I've tried just about everything else. I am also on allergy shots for trees, grasses, and weeds. I am very impatient with just diet and I really want to get off the Entocort.

Welcome to all the Newbies! This is a great place for help and just venting!

Pat

Hopeliveshere · Post by **Hopeliveshere** » Wed Aug 19, 2009 7:24 pm

What are your bowel movements like at present? How many and what are they like?

Post by **tex** » Wed Aug 19, 2009 7:28 pm

Pat,

I agree, the Gastrocrom is worth a try.

Good luck with it,
Tex

Pat · Post by **Pat** » Wed Aug 19, 2009 7:56 pm

Hopeliveshere,

Welcome to the board. Sorry we have to meet this way, but to answer your question:

I am having about 3 maybe 4 very soft mushpiles, and still a little urgent. Sorry for the graphic description, but you asked! LOL! I used to have up to 20 water episodes at my worst so I feel I am doing good. I just wish for Norman to visit! And to do this without steroids! or even any meds for that matter! Oh, heck while I am wishing I wish I could do this without a special diet but I doubt that wish will come true. But the others might! should.

I have to be very careful what I eat. Diet is critical. I am just trying to speed up the process since Entocort doesn't do the whole trick! And I had interruptions like a Dr. that decided I needed antibiotics and that made me worse. Can't seem to get over that even with lots of probiotics and antifungal drugs. Ok, I've told you a lot more than you asked. I'll sign off for now.

Pat

P.S. Tex, sorry about your episode with the doctors. Hope you're feeling better, been thinking about you.

Hopeliveshere · Post by **Hopeliveshere** » Wed Aug 19, 2009 8:32 pm

Thanks much! How long have you been on the Entocort and how many milligrams are you taking? Not to graphic for me ...been there done that!!

Also I look forward to hearing about how the gastcrom works out for you!

Thanks again for sharing!

Post by **tex** » Wed Aug 19, 2009 8:57 pm

Pat,

Thanks. I'm feeling pretty much OK. My last test is Friday morning. I'll be glad to get that done, and get the neuro's opinion, next week, so I can get all that behind me.

Tex

Pat · Post by **Pat** » Thu Aug 20, 2009 12:10 pm

Hope (can I call you Hope?)

I am taking 1 Entocort per day and have been on it for 4 months at the full 3 pills per day (9mg). I just recently started to wean. I probably shouldn't because it seems to be the only thing that helps me, but my hair is falling out and I just don't like the idea of steroids. I am being so much more careful with my diet and I am hoping I can control it with diet and hoping the Gastrocrom will help. It is making me nauseated so I don't know how long I will be able to continue it.

What about you?

Pat

JLH · Post by **JLH** » Thu Aug 20, 2009 12:52 pm

Oh, Pat, you said the magic words. I will NOT go on Entocort. I don't have much hair left to loose.

Thanks so much for the warning.

Pat · Post by **Pat** » Thu Aug 20, 2009 4:21 pm

Joan,

I am just assuming that it is the Entocort. Wonder if anyone has had this experience?

Pat

Post by **tex** » Thu Aug 20, 2009 5:45 pm

Pat and Joan,

I did a quick search, and I couldn't find any posts complaining about hair loss from Entocort, (though there are quite a few such complaints about Asacol). I believe that it is listed as a possible side effect, though.

There are one or two posts complaining about unwanted hair growth with Entocort, though, (facial hair, mostly).

Tex

JLH · Post by **JLH** » Thu Aug 20, 2009 5:58 pm

Much obliged, Tex.

I have an appointment to see one of the doctors in my area that does the SpectraCell testing. Maybe getting the right vitamins and minerals in me will help. I've had poor nutrition ever since this whole LC thing started.

I found out online that she owns a fabulous horse farm that we pass by on the way to the lake. We had heard that Patrick Swayze had been interested in it at one time.

A nice little 70 acre place with indoor arena.

http://www.haciendanirvana.com/

Lucy · Post by **Lucy** » Fri Aug 21, 2009 12:57 am

Neat site, Joan!

Just thought I'd mention that when I went to Mobile Bay on a birding trip for my respite a few years ago, we ate in the only seafood restaurant over the water, down on the bay, that hadn't been destoyed by Katrina. Can't think of the name of it, but I didn't have a reaction to anything. Think they just baked me some fish in a clean frying pan or something. Probably had a baked potato with olive oil or something and a small dinner salad. -- easy to get right. Anyway, it was fun to look out over the water as it got dark. They kept running back to the kitchen to check with the chef or someone, and eventually, he just came out and talked to me himself. We eventually got it right, and they were nice. The place can sure be busy, however.

Do you live in the north part of the state? I remember your saying that you drove down to the coast on another post.

That was the first time I'd ever been to FairHope, I believe it's called (there's another town in that state that I get mixed up with FairHope -- Something Else Hope??

Anyway, they were having some sort of festival near a big nice peer down there when we were there. I wondered if perhaps the peer hadn't been rebuilt after Katrina, particularly since it was so handicap friendly. I wish we had something like that down in Galveston as my mother is wheelchair dependent, but she used to love going out on the peers. Incidentally, the peers we had got wiped out, and the hotel that's on peers over the water lost it's drive way during Ike. The hotel peer has a T-head after you drive behind the hotel, so people used to fish out there. Mother loved to go out there. Everything else for tourists is pretty much back up and running, from what I can tell.

Anyway, we enjoyed our visit that time. On another respite a friend in Georgia planned for me, we went up into the north Georgia mountains and could see all the pretty mountain ranges in Alabama as well as other surrounding states -- that's a neat place to look out, and our cabin in the mountains as well. I have a relatively new friend I chat with on line who went to high school with one of my second cousins. She live in Birmingham, I believe it is, and she has some place she likes to go for a little vacation in the mountains of Alabama. Maybe one day I'll get to visit her and that place as well. It's certainly a hidden treasure your state has. Do you ever go to the mountains around there or just the coast?

Yours, Luce

Pat · Post by **Pat** » Sun Sep 06, 2009 3:07 pm

I stopped the Gastrocrom last week. Even using the pediatric dose it made me nauseated and I really couldn't tell that it was helping. I also have weaned from the Entocort so I am just controlling with diet. I know, I know I haven't been off the Entocort long enough to be completely rid of it but I have found that if I follow the FODMAP diet to the T (which includes wheat & dairy) and eliminate soy. I do pretty good. Not normal but I could live this way. I hate the limited diet but I could live with it. I have added a 1/2 of a 500 mg Vit C. I am afraid of too much causing gas. I guess I am also afraid that not eating any fruit and limited vegetables I will get malnourished eventually. I am avoiding potatoes too. It seems that every time I eat them that the next day I am much looser. I haven't completely given up on them though. I also take a multi/min 2 X day and Citracal + D 2 twice a day and 2 fish oil caps. What else should I be taking?

Pat

Post by **tex** » Sun Sep 06, 2009 9:02 pm

Hi Pat,

You may not need more, but it never hurts to take B-12, since it's common for anyone with digestive issues to be low on it. Extra D3 might help, also.

Maybe with some more healing time on the diet, things will improve some more.

Tex

Post by **Rosie** » Mon Sep 07, 2009 12:58 pm

Hi Pat,

I just noticed that in your first post you mentioned taking Singulair, but it wasn't clear if you were still taking it or not. I've got asthma and in my research had noticed that the inactive ingredients for Singulair could cause some problems. Depending on the dose, it contains mannitol or lactose. The mannitol really gives me gas and diarrhea, not to mention the lactose as I'm sensitive to dairy.

Inactive ingredients:
•4-mg oral granules: mannitol, hydroxypropyl cellulose, and magnesium stearate.
•4-mg and 5-mg chewable tablets: mannitol, microcrystalline cellulose, hydroxypropyl cellulose, red ferric oxide, croscarmellose sodium, cherry flavor, aspartame, and magnesium stearate.
•10-mg tablet: microcrystalline cellulose, lactose monohydrate, croscarmellose sodium,hydroxypropyl cellulose, magnesium stearate, hydroxypropyl methylcellulose, titanium dioxide, red ferric oxide, yellow ferric oxide, and carnauba wax.

If you are still taking Singulair and having digestive problems, you might want to consider it as a possible source.

Rosie