Day 6-Entocort-Discouraged

[lisa15601]

Woke up at about 6:30 am had and four somewhat Normand BM. Usually take the Entocort at 7:00am and i fell back asleep for another hour and then took it. Took the 9mg with a whole bottle of water, that I think I drank way to fast. About 10-15 minutes later I ran to the bathroom and had D. I haven't had D since I've been on the Entocort. I also expecting a girls best friend between today and tomorrow so I dont know if that has anything to do with it. I also bought some GF/SF soup Kettle Kitchen or something like that, Chicken Noodle, and it has carrots and celery. All I see today is carrots. I thought everyone said carrots were ok. I don't think I digest them well. It's thanksgiving and I was feeling good when I got up, now I'm discouraged. Dinner last night was a grilled pork chop and rice.

UPDATE ON COLD:
Took Tylenol Cold last nite and woke up alot better, could the meds have done this too.

[Joefnh]

Hang in there Lisa, it's still early in the process. If the carrots were not well cooked they may have been hard to digest. As the diet and meds have had a chance to allow for some more healing, you will find things like carrots are easier to digest. This process does take time so hang in there, it will get better.

I am not aware of any issues with the cold meds. I'm sure others will weigh in on that one.

--Joe

[lisa15601]

The carrots I thought were too well cooked...lol

[lisa15601]

since my last post a few hours ago I've prob had D another 4 or 5 times. The last time it wasn't a lot but had long runny mucus in it, I wonder if it was from the cold medicine. Let's just say I am so discouraged right now. Its thanksgiving and I want to enjoy it. I know I've been on the entocort for only 6 days, but today was worse than all the other days and I know its too early for results. Does anyone have any input on their first weeks, please

[Joefnh]

Hi Lisa, I'm sure others will chime in soon. My experience was that the first roughly 3 weeks was a bit of a bumpy ride as it were. Your system is still flaring and the meds have not had a chance to come up to strength. Over the past 6 months in listening to others who are at the same stage as you are, this seems to be the normal course of things. Some do seem to respond more quickly, but I think that is the exception.

There is a good starter die called BRAT. Bananas, Rice (white) applesauce, dry toast (GF) & tea. This is a tried and true diet to help bring things under control for a wide range of gastrointestinal ills.

http://en.wikipedia.org/wiki/BRAT_diet

This is the tough part of of this disease. You are taking the meds for a week and really need to feel better. Of course it being thanksgiving does not help. My only advice is stick to something like brat today. Eat small portions and try to relax. Stress really makes MC worse. At this stage it is harder to determine what exactly you are reacting to because your system is so aggravated it is reacting to almost everything. From the sounds of it you are eating the right foods, this is just going to take time. I know this can be frustrating, especially today, hang in there.

I forget to ask have you tried Imodium AD?

--Joe

[tex]

Hi Lisa,

If your period usually includes D, then that will probably continue to be the case. The Tylenol Cold might or might not have influenced your situation. Here are the ingredients:

Day

Anhydrous citric acid, carnauba wax, corn starch, flavors, hypromellose, iron oxide, magnesium stearate, microcrystalline cellulose, potassium sorbate, powdered cellulose, pregelatinized starch, propylene glycol, shellac, sodium benzoate, sodium citrate, sodium starch glycolate, sucralose

Night

Anhydrous citric acid, carnauba wax, corn starch, FD&C blue #1 aluminum lake, flavors, hypromellose, iron oxide, magnesium stearate, microcrystalline cellulose, polyethylene glycol, polysorbate 80, potassium sorbate, powdered cellulose, pregelatinized starch, propylene glycol, shellac, sodium benzoate, sodium citrate, sodium starch glycolate, sucralose, titanium dioxide

Some of us react to citric acid, (which is usually made from corn), and corn of course, but if you have been eating corn without problems, then corn is probably not an issue. Most of us have problems with artificial sweeteners, but sucralose is one of the safer ones. Even if we don't specifically react to citric acid, though, there's a slim chance that a decent dose of it can be enough to upset the digestive system, sometimes. I could never tolerate it, while I was recovering, but that doesn't mean that it is a problem for you.

There is nothing wrong with eating carrots. They were undigested because you are having a flare, not because you reacted to the carrots. The mucus indicates a lot of inflammation. My guess is that it's just too soon for you to expect stable remission. Unfortunately, it takes time. We usually recover in stages, rather than in one fell swoop. It teaches us patience.

I have no idea what the ingredients might be in that soup, but there are only a few commercially-prepared soups that are entirely safe. It is almost always best to make your own soup, because anytime a commercially-processed product contains more than about 5 ingredients, the odds go up dramatically, that we will react to something in it. Avoid bouillon cubes, also, as most of them contain gluten. From your post, it appears that you didn't eat any of the soup, so if that's the case, than none of this paragraph in my response is currently relevant, anyway.

It's even possible that drinking too much water, or drinking it too fast, could upset the digestive system, when it is so sensitive.

Hopefully, things will settle down soon, and tomorrow will be much better. The Imodium that Joe suggested, (be sure to get the original version - some of the others contain undesirable ingredients), might be worth a try, and might allow you to enjoy the rest of the day.

Tex

[JoAnn]

Hi Lisa, sorry you're having such a struggle today. Also, welcome. I haven't been able to post much and just want to let you know this board saved me and has helped me find my way. I don't know if you have figured out all your intolerances-it takes a lot of time and when you're flaring, it's almost impossible. I'm wondering about soy. Soy is as lethal to me as gluten is, even small amounts. Sometimes I think soy is even harder on me. Soy seems to be in every product I pick up. I tried to find cough drops without it and it's nearly impossible. I would check your soup and see if it has soy in it and possibly your cold medicine. Polly pointed out to me that sometimes in medicine the word "starch" means a hidden gluten source. There have been times I never figure out what's in it, I just know something in the product is affecting me. I was treated with entocort and it does take a lot of time and there are a lot of ups and downs. I've been off since last June, but have to be very careful about my diet. I did two different rounds of entocort, 8 months the first time, had a relapse, and then 5 months the next time. For most of us, our gut needs a tremendous amount of time to heal. It sounds like you ingested something yesterday that you are very sensitive to or maybe it's the stress of Thanksgiving. Stress seems to get us all with mc. It could also be affected by "your best friend". Before menopause and mc, I know I would experience D the day before. Are you able to take Pepto? If you can, that might help your symptoms and the Immodium as Joe mentioned. Don't give up on the entocort. If it's right for you, it will help you get your life back, it just takes time. I hope you can relax today and remember this is a journey and not an event. Find the things you can be thankful for and look forward to future Thanksgivings when you will be in remission and I know you will if you follow the wisdom on this board. Just know you are not alone and many of us have had to endure the holidays with the problems you are experiencing. If you can take your focus off the food (easier said than done) and focus on how well you are going to be by following the diet, using the medications you need, and making the sacrifices you need to now you will be successful and healthy. I'll be thinking of you and including you in my prayers, JoAnn

[lisa15601]

I did eat the soup. Your posts are very helpful. I just get scared.

[lisa15601]

Thank you so much everyone. Joanne when did u get diagnosed and how long were u in pain for.

[JLH]

Ah, rice noodles........

[lisa15601]

What about rice noodles

[lisa15601]

What about rice noodles

[Gloria]

Lisa,

I haven't had D since I've been on the Entocort.

That's terrific progress. It means that you can begin to determine which foods are causing you problems. I hope you are keeping a food diary and writing down everything you are eating and what type of bowel movements you have, including a record of the time. It will help you begin to see a pattern.

The first time I went on Entocort, I didn't see any improvement until 3-4 weeks after I began taking it, and I was GF, SF, EF, YF, and CF at the time. It takes time and lots of patience. As JoAnn said, remission isn't an event, it's a journey, and you will have setbacks. The setbacks are what help you determine the problematic foods. Learn to see them as helpful feedback and change your diet accordingly.

I hope tomorrow will be better for you.

Gloria

[lisa15601]

Gloria,
I did have 4 or 5 D episodes this morning

[Gloria]

Yes, I read that. That would be the feedback I was referring to. It usually means that you ate something that disagreed with you yesterday, likely the chicken soup.

The fact that you've already had the D stop after 6 days on Entocort is a pretty good sign and is a good improvement. Things will get better, but it usually is a slow process with many ups and downs.

Gloria