Starting Endocort tomorrow

[LindaB]

I just received my Endocort medication from India. I'm going to start taking it tomorrow morning. The capsules are 3mg each. I was going to start with 3 capsules for 9mg total. I will continue to do so every morning. I wonder if I should discontinue taking my other supplements for the time being which include fish oil, VitD, Calcium, Magnesium, Zinc combo, Betaine/pepsin/pancreatin combo, fish oil and VitB-12. I noticed Tex takes his lisinopril in the evening. I take mine in the morning. Is there a reason for taking it in the evening? I also have a glutamine powder that contains deglycy(?) licorice root and aloe leaf extract 10:1 extract.

I'm going on a 2 week cruise the day after tomorrow so I'll only be on Endocort several days before I leave. I'm going to stay gf, df, sf, and ef but oh how I'll miss the chocolate on the ship.

Any suggestions about cruising and diet would be so helpful. I've already requested a gf diet. Also, can anyone recommend something I can put in my water that has a little flavor that would be safe? I'm trying to stay away from lemon, tea and sodas but I would love to have a little flavor in my water.

LindaB

[brandy]

Hi Linda,

Bon Voyage! I think the cruise will really help you with healing! I was an entocort user and you probably won't have internet access so let me prep you on what it felt like the first several weeks. It doesn't work like immodium...i.e. in four hours. I found it took about three days to kick in. By the end of three weeks I had constipation. I think for some users it takes longer to get to constipation....like 6 or eight weeks. Most users on this forum seem to have no side effects and I believe the AstraZeneca studies show only 10% of users reported side effects. Common side effects are the following: you might have some spasming of the guts-- several people recently have reported that and I had that. Dizziness is another frequent side effect and I had that. The third one that comes up here is the hair loss thing. The first two weeks of use I had that but now my hair is better than b/f CC. I hesitated to bring this stuff up and didn't want you to be alarmed prior to your vacation but wanted to give you heads up on the common stuff so you don't freak out on the ship and again you very well may be a 90 percenter and have zero side effects.

I think I'll defer to some of the other "experts" on the supplements. I was taking zero supplements prior to being on Ento and then as I got solid stool slowly folded back my routine supplements one at a time.

Suggest try to get 20 minutes of sun a day. Vitamin D is good for our healing.

I've only been on one cruise and that was only a 4 day cruise out of Tampa so I'm by no means an expert but if I was going I would bring: a lot of immodium and a lot of pepto. You won't need these once you are on the Entocort, i.e. don't take them at the same time but worst case it would be nice to have them along in case you have to get off of the Entocort.
I would also bring along a tube of the hydrocotisone anti itch cream. It seems to come up frequently in posts and I've had that stuff come and go. I'm kind of a snack person so I'd probably bring a box of the GF crackers and some of the little nut butter packets from health food store as well as some single serve packets of tuna and/or salmon.

Suggestions on diet....I like my girlfriend's favorite....DON'T MISS DINNER ON THE CRUISE SHIP! It is too good to miss. My guess is you will probably have better food options at the sitdown breakfast and sitdown (i.e. table service) lunch options rather than the buffet breakfast and buffet lunch. I seem to recall the buffet offerings to being kind of junky.

The cruise ships are really good with GF offerings. For where you are at in healing suggest a lot of protein, cooked veggies, ask for olive oil to drizzle on your veggies, fish and chicken so you get some fats, potatoes, rice our usual stuff. Fruit seems kind of individualistic to the person so you will have to listen to your body. On Entocort you will have no problems eating a variety of proteins and a variety of cooked veggies.

Have a great, great time! De-stress, enjoy the cooking break! Give us a report when you come back. I'm off of Ento for about 12 weeks now and GF, DF and SF and I'm doing really well and I believe the cruise will be great for healing! Brandy

[tex]

I noticed Tex takes his lisinopril in the evening. I take mine in the morning. Is there a reason for taking it in the evening?

There is, in my case. I'm taking it for stroke prevention, and more strokes/heart attacks occur first thing in the morning, than at any other time of the day, according to statistics.

My opinion on the supplements are that it's usually best to cut them out until remission is reached, but most of those supplements seem to be reasonable. The first one I would question would be the betaine/pepsin/pancreatin combination. I think I would cut that one out for sure. In the other direction, the most valuable one is the vitamin D, so that's the last one that I would be likely to cut out.

I hope your cruise goes smoothly.

Tex

[brandy]

Also Linda re: some flavor for your water. I've never tried this so don't know how it would work. Perhaps bring one of those packs of mint leaves from the produce section of your grocery store with you. When you get to your cabin have steward put on ice although as I recall the rooms are pretty chilly. Stick some mint leaves in ziplock in your purse b/f every meal and put squished/crumbled mint leaves in your water for flavoring. Don't drink leaf just use for flavoring. Works for iced tea so perhaps for water? brandy

[LindaB]

Brandy,

Thanks so much for your helpful suggestions. I'm excited to get healed. I will definetly prepare for the worst but will hope for the best. I'll take along some of the snacks you suggested for the plane and pre-cruise overnight. I'll even try the mint leaf idea. I love the taste of mint. I really appreciate your giving me a "heads up" about some of the side effects. Because I'll be crossing the Atlantic, there will be many sea days and I'm planning to stay away from the computer while I'm away. I've been on cruises before and I was with someone who had gf pancakes. I'm thinking I'll need to stay away from that while I'm healing.

Tex, Taking lisinopril at night makes perfect sense. I'll bring my VitD and leave the rest at home.

Would I be able to take imodium or pepto (which I've never tried) if I run into problems even while on the Ento?

Thanks again!!!

LindaB

[tex]

Would I be able to take imodium or pepto (which I've never tried) if I run into problems even while on the Ento?

Yes, either one should be safe, (the Imodium is the safest), and they should provide good insurance, just in case. Neither one of those is known to have any adverse reactions with Entocort.

Tex

[LindaB]

Good to know. Thank you for responding Tex.

LindaB

[Leah]

Hi Linda. The mint is a great idea from Brandy! Let's think positive. Entocort works wonders. I noticed a difference in two days and was "normal" in a week. No side effects! I never got to C, but it may be because i decided to start to step down the dose gradually after a month. I now take two pills. By the way, I took one with each meal to start. Now - breakfast and lunch. I hope it all goes well for you. Relaxation is great medicine. I have been on many cruises and I see that many people make food the central part of it. Try to think of food as fuel. Definitely bring some snacks (KIND makes a great coconut/almond bar that is very portable) for the plane and ship. I know for me that eating small portions throughout the day is much easier on my system than large meals.

Have a fantastic time!
Leah

[LindaB]

Leah, Thanks for the ideas. I was unsure when to take the Endocort. We have a string of sea days before an all day tour happens in Portugal. If I can just get up in the morning, do what I need to do in the bathroom, then get on the bus, I'll be set. I know there will be many foods I cannot have on the ship but I'm committed to getting better no matter how long it takes. If I am having problems, I will have my bag of tricks with me just in case.

I'm planning on doing my squats in the ship's gym not in the bathroom.

LindaB

[Leah]

......Oh, I also was thinking ( I use to be a pastry chef) that if traveling with mint is too difficult, you can just buy a small bottle of pure mint extract ( either mixed mint or peppermint) and use that.

PS you're pretty funny :) Happy squatting !

[Lesley]

If you put stalks of mint in water it will keep very well, and might even put out roots and shoots. It's hard to kill off mint.

The cruise I went on - we didn't like dinner in the DR, so we ate in the buffet. Of course I could eat anything then.

[LindaB]

Leah,

Yeah, I can be pretty funny at times. I'm not much for exercise machines so I'll have to be creative with whatever equipment they have in the ship's gym. I have some mint extract I can pack in case the ship doesn't have any. I'll need to plant mint this year.

I think I better stay away from the buffet. Too dangerous. Several years ago when we were on a cruise, I remember there was a pretty nice selection of gf desserts there when going through the buffet. Better than in the dining room. I'm pretty sure they were not df though. I guess no desserts for me.

LindaB

[brandy]

Hi Linda,

My Mom also packs a loaf of GF bread on cruises. In a pinch you can make a nut butter sandwich and take it with you on day excursions. You should start feeling a lot better very soon! Brandy

[CathyMaine]

Have fun on your cruise LindaB!!! Enjoy the sunshine and relaxation!

[Leah]

Oh, I just realized that since you bought your entocort on line, there are no instructions. You need to take each pill with a full glass of water.

Yes, stay away from desserts. They will inevitably have dairy and/or eggs in them... and lots of sugar ( which gives some of us trouble)

Have a great time!
Leah