Rough day.....

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iceburg
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Rough day.....

Post by iceburg »

I have a thousand things to do and my gut completely hates me! I found that while I am at work I can drink "naked", my favorite, strawberry banana, I cant find, and the other flavors...ugh, anyhow it was enough to fill me up and give me a few vitamins to get thru the day, without making me sick. I cant find gingerale in half the stores, I believe gingerale is a staple and should never be depleted! It seems to help my gas, and therefore some bloating.
My worse time seems to be in the mornings, when my body is trying to evacuate any foreign substance that was consumed the day before and will not stop, until every last bit has been eliminated. Makes it really hard to get to work in the mornings, and when I go in late, it means I get home late, and I have fallen soo far behind in paperwork and housework and I kinda wish I could just throw everything into some kinda box and hide it until I can take a few days off, but I know my day off I will be exhausted from over doing it on my "good" days, and I am afraid to throw it all out, just incase there is something important, I am overlooking, just because of all the brain fog, and frustration.
My friends are having a cook-out at the park and I have to go make up for the days I missed at work, but they took my youngest to have some fun, "God bless them" and I still cant quite leave the house, so I pray this passes quickly so I can get to what needs to be done. I need lots of humor!
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tex
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Post by tex »

Hi Carol,

I hear you. I usually got up early, and I still often got to work late, when I was reacting, because of all the "pit stops" that I had to make, before I was able to safely leave the house. But, we have to do what we have to do. :sigh:

I agree with you that gingerale can be helpful for getting rid of gas. I found that Sprite or 7-Up would often help, also.

It's a shame that there's no one to help you with your work, because there are limits to what we can do, when we're so sick. When I was reacting, I was working for myself, but I found it necessary to downsize my business, eventually, because I just couldn't keep up with everything - it was too physically demanding.

I hope you're feeling better by now.

:grouphug:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
iceburg
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con't

Post by iceburg »

I really dont think feeling sorry for myself is going to help a thing, and I know soo many people are going thru so much worse, than I and I do count my blessings. I also know trying to contain my frustrations has brought me to an 'anxiety' ridden state,
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sarkin
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Post by sarkin »

Iceburg,

When my symptoms are activated, my worst time is in the mornings, too. There's nothing worse than feeling the pressure of being late to work, but not being able to leave - talk about stress on top of stress.

Those morning symptoms come, as you suspect, from something you ate the day/night before that causes your body to react. It's tough to figure out - of course you would stop eating something that made you feel awful the second you put it in your mouth... but it is the nature of these intolerances that the body reacts to the food only when it has made its way farther through the system.

Even though you don't know what your specific food intolerances are, you can give your poor system a break by taking a few days of a super-simple diet. Since bananas agree with you, I would stock up, and also make some simple homemade chicken broth. Plain applesauce is also good for me on the bad days, too. And small amounts of white rice, if it sits well with you.

The most likely culprits are dairy - all dairy, even yogurt, and gluten in any form. Rice is the grain that is most likely to be tolerated, but when I was first sick I could not eat large amounts of it without bloating.

Don't worry about getting enough vitamins right now - your body can only absorb those vitamins when you get it calmed down. If you're taking supplements, take some days off. Of course don't stop your medications, if any - but some of those can also exacerbate symptoms, so a little research in that area is a good idea. Some people had their MC triggered by a medication (prescription or not).

I think when we're reacting day after day, sometimes the body just keeps reacting because it's already reacting. Kind of like a 2-year-old who's having a tantrum... but has forgotten why. So now they're screeching because they're screeching. Once you get your body to settle down and take a nap, it will be easier to tell for sure which foods are your friends, and which you need to break up with for good. (Sorry, I'm mixing my metaphors here!)

The brain fog is definitely a symptom I know well. It does get better!

Take care, and keep us posted,

Sara
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tex
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Post by tex »

Carol,

Sometimes it helps to vent our frustrations. That's one of the purposes of this board, to provide a place for us to "get everything off our chest", to help clear our thinking. We all understand, since we've been there, too.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
iceburg
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Sara,

Post by iceburg »

Thanks for the advice, I am willing to try anything, The dr is of sooo little help and the nurse seems to be worse. and I have checked with the resources thru my job and well, not much assistance. So everything I am learning here is of great benefit.
A funny thing when you mentioned the two year old, My daughter, she is now 17 and wow, how time flies, but you reminded me of her at 2. She did one of those kicking, screaming, foot stomping kinda dances, and she wasnt listening and out of pure desperation I, just about in tears, looked at her and comepletely mimmicked the behavior, within seconds she stopped, and looked at me like I was crazy, told me I looked funny, and just burst into laughter. She never did one of those dances again....I must have scared her into thinking she looked awful, during her tantrum, but hey, whatever works, right?
Thanks for being helpful.
Carol
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dgshelton
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Post by dgshelton »

Carol - I hope you are feeling better! The mornings were also the worst times for me. If it is possible for ylou to get on Entocort, I would definitely do it. It stopped the D within 2 days. I had trouble taking it the first time (it made me have tremors), so I stopped taking it. The D came back with a vengeance. I am now taking it again at a lower dose and I'm not having any side effects. It took about 4 days this time for the D to stop, but now, the Entocort and the change in my diet have finally got my gut settled down.

Stress causes me to flare, so I know how you feel. It's like a vicious circle...your stressed, so you get D, which makes you stressed....I hope that you are ablemto stop the cycle and feel better soon!

My daughter had tantrums like yours. I never thought of mocking her. I bet it would have worked great! I left her in the middle of an aisle in a store throwing a tantrum (I only went a little around the corner so that I could see her but she couldn't see me). When she realized she didn't have an audience, she immediately stopped and ran to find me. It only took a couple of times of doing that to make her stop.

:bigbighug:
Denise

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Post by Gabes-Apg »

Carol
vent away, we have all been there.

there were days I had minor 'poop accidents' on the way to work, thank goodness i had spare clothes in the car, and emergency rations of underwear etc in a locker at work. it wasnt easy to forget about it and be positive through the day.

regarding having your staples whilst at work, i used to work in a remote industrial area and there were no outlets or stores nearby that had 'MC safe' type items, on the weekends i buy and prepare my staples for the week so no matter what happens through the day i have my meals with me.

as i live alone with no family nearby, at all times i always make sure that the pantry and fridge is stocked with two weeks of staples, and that in the freezer i have two weeks worth of pre-prepared meals, that way if i am unwell i have enough supplies.

I agree with Sara, dont worry about the vitamins etc as if your gut is inflammed and motility is short then you wont be absorbing nutrients properly. Focus on finding the foods that are your freinds that dont cause issues and getting through the day without D.

once you get the right foods into your meal plans, the brain fog will lift, and you will have more energy...

take care
Gabes Ryan

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MBombardier
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Post by MBombardier »

:iagree: :bigbighug: I am so sorry you are having a tough time. Feel free to vent--we all have, and who could understand better that we can?
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iceburg
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Thanks for the Hugs and support..

Post by iceburg »

Denise,
I just started my second round of entocort, day 5, they had tried to wean me off it, and my symptoms seemed 10 times worse than before. They probably werent, but going two months without it well, it was quite an adjustment. Problem is I had the symptoms soo bad for soo long before I got diagnosed that I was trying to maintain at home, cause all bloodwork and samples always came back negative and they wouldnt give me anything at all, my body pretty much gave up and I was inches away from a week long hospital stay,( I thought I was going to die, literally, I was scared) Just in time I was able thru a little bit of a fit to get into a gi dr and he started me on xifaxan while he ran the test. the xifaxan reduced the imflamation and I had pretty quick relief. but when my scope was done and everything looked perfect, he said, I am not sure why that med worked, but I took biopsies, thank God he did. The entocort helps but I have some side effects I am not happy with, and the cost have been draining, but I cant seem to be off it at all, so we are at 3 pills a day and hope I can get it back down to 2 at least and maybe with the diet changes it will be much more effective when I try to get to one, but I guess thats a couple weeks away. I go back to dr in july.

Gabes,
One day I completely soiled my pants, got stuck in traffic, it was horrible, I was soo totally embarassed and try to find a way to get into my house without anybody noticing, I was supposed to be at work, and when I called to tell them I had an "accident" and would be in as soon as possible, I wasnt thinking cause I just wanted to be clean, but they actually thought I had had an accident driving, lol, what a mess, and I couldnt tell them what really happened...thank Goodness I have seats that easily wipe off!!

Denise,
Thanks for the hugs...much needed today!
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Post by JoAnn »

Hi Carol, sorry you're having such a rough time. We've all been there and know what it's like. The only thing that I might add is that you can order the generic entocort (technically it's not the generic but it is budesonide)Budez CR from any Canadian pharmacy online or from Alldaychemist.com at a huge savings. If you order from Alldaychemist, you don't need a prescription. When I was on entocort I ordered from both of these places and they were the same product. I had just as good results with the generic as with the name brand entocort. I know many others here have had the same experience. Good luck, JoAnn
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iceburg
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JoAnn

Post by iceburg »

Thanks, I was curious if I needed a new script, glad to know. I know I will get thru this, one moment at a time. I am taking tomorrow off and put in for a reduced schedule next week, I definately think a few days rest and time to figure out the 'diet', will be a great benefit.
Thanks for all the kindness,
Carol
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dgshelton
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Post by dgshelton »

Carol- You can't see the inflammation we have with MC. It is microscopic, hence the name microscopic colitis, so even without the medication, I don't think your GI would have seen anything. It has to be diagnosed with a biopsy. My colonoscopy looked normal. My GI said he didn't see any inflammation, even though I was having D 10-15 times a day, but the biopsy showed CC.

I forgot that you said you were on Entocort. I think if you can figure out what foods you are sensitive to, you might be able to get off the Entocort, but until you do that, every time you try to get off of it the D will come back. I have had a couple of bouts with D since going gluten, soy, egg and dairy free, but I think every time it can be traced back to me ingesting some gluten without knowing it.

I am a stay at home mom, so I haven't had the dreaded accidents. I hardly go anywhere anymore , but hopefully that will change soon! I am going to try to go to church tomorrow. I haven't been in three months because the D has been so bad in the mornings. Keeping my fingers crossed that I'll be okay in the morning.

I'm glad the hug helped. The cyber hugs we get from our family here always seem to help! I hope your evening has been better than your morning!

Hugs,
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Post by Gloria »

Carol,

:hug: :hug:

I'm so sorry that you've had a bad day. It's especially disheartening to go back to having D once you go off Entocort. As you wrote, we get used to living a "normal" life, and then bam! it's back to the dreaded D. I hope that you can find a dosage of Entocort which will stabilize you and allow you to figure out your intolerances. It can be done - we are here to help you through the process.

Gloria
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Post by sarkin »

Carol,

Glad you're getting a day off, and I know you will turn the corner as you start to get some stress relief and work on figuring out the diet... I really think Tex is right, that we are the only people who understand what it's like to go through this. We are truly here for you. As people said to me when I first got here - you *will* get your life back.

Denise, I hope going to church is extra-meaningful for you tomorrow. I really got into a habit of not scheduling anything in the mornings. I'm only now realizing how much I've organized my life around this... (a client asked if I could come earlier... and my husband tells me everyone in our morning dog-park crowd is kind of noticing my loooong absence).

I'm hoping to go to the dog park tomorrow myself ;) I'm guessing you'll be better dressed and organized at church ;) I'll raise my cup of coffee in honor of both of us having a different and better kind of morning.

Love,
Sara
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