Weaning Off Entocort

[Pat]

Gloria,

This is great news! Are you eating corn? What about potatoes?

Hope you had a nice holiday season. Merry Christmas and Happy New Year!

Pat

P.S. I am not having very good results from Entocort. I have eaten out so much over the holidays that I have resorted to adding immodium. But I never had very good results even when I was not eating out. Hopefully 2009 will be better!! I'm planning on it!

[Gloria]

Hi Pat,
I'm not going to celebrate quite so quickly this time around. I'm taking it much more cautiously.

I'm avoiding corn as much as possible, but you know how tricky that is. I probably consume it as citric acid more than I realize.

I do eat potatoes all the time. I mentioned the sweet potatoes because I know you've been eating them. I thought I'd let you know they're on my suspicious list. I hope things get better for you soon.

I hear you about the eating out. I have one more family get-together on Sunday. I'm that it will be OK. I probably will bring my own food just in case, but it feels like I'm insulting the hostess if I do. I ate at an Italian restaurant with a GF menu last night. I've put my own ghee and mayonnaise in small containers and bring them when I eat out. I also bring my own bread. So far today, things are OK.

Gloria

[Jan]

Gloria,

I had sweet potatoes last night and have been suffering today. Part of my relapse may be from all the candy and other goodies New Year's Eve. I do remember that sweet potatoes also have a lot of fiber in them. I know I don't tolerate fiber very well. My GI keeps trying to get me to take a fiber supplement. Everytime I do I am in trouble. Just a thought.

Jan

[Pat]

I think Jan may be on to something. I went to www.nutritiondata.com and compared sweet potatoes to regular white potatoes and there is a huge difference between the two in the fiber category. That is a really good website to look up all kinds of things about food in case you didn't know about it.

Pat

[Gloria]

Jan,
I never considered that the fiber could be the problem. That's great insight! Thank you for alerting me.

Pat,
That's a terrific website. I like that it also lists items from fast food restaurants.

Gloria

[JLH]

Thanks for the link, Pat.

[Gloria]

I've been taking Entocort every other day for about a week and I'm starting to see some deterioration in my BMs. Not D, but not perfect Normans either. Plus I've been getting some mouth sores. I haven't eaten any oranges or orange juice, green peppers, or sweet potatoes and I've eliminated corn as best I can. For the newbies reading this - don't be discouraged. I'm a Double DQ1, meaning that I have genes which predispose me to having multiple intolerances. There are only a few of us on the board with these genes.

I've decided to go back to taking 3 mg Entocort every day as a maintenance dosage. I'm hoping I can maintain on that. I really had been hoping that I would be healed enough by summer so that I could resume eating salads and fresh fruits. Can anyone on a maintenance dosage of Entocort tell me if their gut still heals enough to allow them to eat salads and fresh fruits?

My other concern is that once my GI finds out that I haven't achieved remission through diet, he will insist on another colonoscopy. I doubt he'll prescribe any more Entocort without one, even though we all know that he won't find anything enlightening. He's already done two colonoscopies and a sigmoidoscopy in the past 14 months. I might have to find another GI or a PCP who will prescribe the Entocort.

Gloria

[tex]

Gloria,

Wow! It sounds as though he either considers a colonoscopy to be some sort of treatment for MC, or he continues to question the results of the exams. So what good is another colonoscopy, if he doesn't trust the results of the previous ones?

Have you already asked your PCP about a prescription? Your GI doc seems to be obsessed with colonoscopy exams, for some reason or other. That guy makes me nervous. Maybe he's writing a book.

Tex

[Gloria]

I don't know why he's obsessed with colonoscopies. I think he's curious and wants to see if I still have the lymphocytes. I don't want to be his guinea pig.

My PCP no longer accepts our insurance plan, so I'm looking for a new one. The old one had never heard of MC, so I suppose it's just as well that I find another one.

Gloria

[tex]

Ah yes, now I remember you mentioning the insurance issue with your doctor, in another thread.

Tex

[Gloria]

Another update...

I've eliminated a few more foods from my diet. I no longer eat carrots, red or green peppers, fresh or cooked onions (but seem to tolerate onion powder and dried onions), and my favorite chicken and beef soup bases. I have 10 jars of the soup base in my pantry. I ate some sweet potatoes this week and had a minor change the next day, so I didn't eat them again.

One or all of these, along with 1 pill of Entocort, seems to have done the trick. I'm having Normans mostly once a day, occasionally two per day. I continue to have mouth sores and am changing my toothpaste to see if it helps. I've noticed a few sores on my hands that I can't explain. I hope it's not another autoimmune reaction.

I made some soup using Imagine broth the other day and didn't have any problems. There's not many vegetables left that I can put in soup. I've eliminated carrots, peas, green beans and all other legumes. I've been adding broccoli, cauliflower, asparagus and of course, potatoes. I'm leery of trying anything new right now. I'm going to try the carrots with the Imagine broth - it's quite possible the soup base was the problem. I ate it 2-3 days a week.

I'm still taking 1 Entocort pill per day. I have an appointment with a new internist on Wednesday. We'll see how much he knows about MC. IT IS THE LITMUS TEST FOR DOCTORS! I may try reducing the Entocort after my visit.

Gloria

[tex]

IT IS THE LITMUS TEST FOR DOCTORS!

It certainly seems to be for us, anyway.

If fresh or cooked onions bothered me, I believe I would be reeeeeeeaaaaaaal cautious with onion powder and/or dried onions. I always thought that carrots are generally pretty safe, but I suppose anything is possible. You should be able to safely use squash, I would think.

Did the soup base give you a reason to suspect it, or did it just sort of happen to be in the wrong place at the wrong time?

Good luck with the new internist. I hope he surprises us all.

Tex.

[Gloria]

Tex,
I've noticed a problem with my soup/crackers lunch for some time now. First I thought it was the hummus or the capers in the olive spread. I tried a different broth last summer and that's when I realized it wasn't the broth, but the green beans. I stopped putting carrots in the soup a couple of weeks ago and it didn't seem to make a difference. I love this soup base and have been very reluctant to give it up, but I may have to accept that it is the problem.

I'm making beef stew today using both carrots and dried minced onions. That muddies the issue, of course, but I can't imagine stew without onions or carrots. I'm hoping that if the carrots are very soft, they'll be OK. The problems I've had with onions is cramps and bloating, but no D. That's after eating something that had a lot of sliced onions.

BTW, I used a different toothpaste last night and so far I don't have any mouth sores. It would be amazing if that was the problem all along.

Gloria

[tex]

That's very interesting about the toothpaste. We may have to start paying more attention to toothpaste and related items. Maybe that was also having some effect on your issues with the soup base.

Tex

[Gloria]

I reduced my Entocort dosage to one pill every other day 19 days ago. I was doing great for about 10 days, but began having less stellar BMs every other day. I haven't seen Norman the last several days. I think that the amount of Entocort in my body takes a while to drop after I reduce it. Once it does, I start having problems again.

I have few foods left to eliminate. Since the problems are occuring every day now, I'm looking at what I consume each day, which would be Rice Dream milk and chocolate. I'm eliminating the Rice Dream milk for a few days, though I hate to do it because of my osteoporosis. I'm taking additional calcium supplements in its place. I'm also going to eliminate chocolate. I eliminated both before and didn't notice a difference, but I was on higher doses of Entocort.

It's been hard to eliminate all onions because all soup bases include them as an ingredient and I eat soup several times each week. I made tomato soup without any trace of onions, but still had a problem the following days. Also, my homemade mayonaisse has onion salt in it; catsup does, etc. I don't eat any of these on a daily basis, however, so I don't believe that onions are causing my relapse. I'm very careful to rotate my lunch menu items.

If eliminating the Rice Dream and chocolate don't provide relief from my symptoms, I'm pretty much out of ideas and will probably be resigned to being on a maintenance dose of Entocort. I'm grateful that Entocort works for me - at least I always have it as my backup plan.

Gloria