Hello,
My name is Lori. I have been struggling since February (although digestive ups and downs for many years..). Pain and D became a daily battle. At first the docs thought it was IBS, and I tried the FODMAPS diet with little success and resorted to immodium, and RX Bentl. In May the pain was so bad, my GI did an upper endoscopy and a colonoscopy with biopsies. I have LC, which was a shock, but at least I know what I am dealing with. I have been on Lialda for 2 and 1/2 months with varying success, but in the last few weeks things have gotten worse...and then I found this board!!!
My diet has been "cautious", but not ideal from all I have been reading. Very little fruit, cooked veggies, no beans, no tomato sauce, no dairy, limited gluten~ which I thought would be OK since I had been tested for Celiac Spru. I avoided what I thought I had reacted to, but I see I may have missed the boat.
Today I started entocort, (and stopped the Lialda) because it is just so bad, and I have a trip planned in 2 weeks that I can't imagine going on with relief... but I hope to get my diet in order and get off when the time is right. I see there is so much to learn, and I appreciate finding this board and reading all your stories and successes. The failure stories are comforting as well, because it keeps us human, and encourages me to pick myself up and try again.
I hope the entocort works for now, and I will keep reading!!
Warmly,
Lori
Nice to meet you
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Lori. Wine shouldn't be a problem if your system isn't too riled up. At the beginning, I couldn't drink wine at all. Then I began to do okay with white wine, then after a while, red. But red wine can still upset my stomach sometimes.
Don't know if you also like beer, but there are gluten-free beers. And distiller liquor should also be okay.
We've got to be able to enjoy something, right?
Don't know if you also like beer, but there are gluten-free beers. And distiller liquor should also be okay.
We've got to be able to enjoy something, right?
Suze
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
That's how I feel... I've been making these very watery tequila spritzers with seltzer just to have a little treat on a hot day. Before MC I was a real beer girl.maestraz wrote:And distiller liquor should also be okay. We've got to be able to enjoy something, right?
Welcome Lori, and I hope with the information you find here, and with the entocort, you will find some relief and then a plan of action.
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Welcome Lori!
Entocort helped me aVERY quickly, so I hope it does the same for you. But keep in mind that the drug only helps us to continue living our lives while we take care of our diet. It will mask a lot of the reactions you would normally have without it. The more you read here, the better, but you might want to buy Tex's book. it's in the upper right hand corner of this page. Just click on it to take you to Amazon. It's full of so much helpful information.
Yes, one diet does not fit all, but gluten and dairy seem to be the two most common inflammation producers. Soy follows after that, and then eggs. Some of us are sensitive to rice, but most of us can eat it. I can. All of the animal proteins ( meats) are usually ok, but many of us have tested positive for some of them also. If you can afford it, Enterolab is the lab that many of us have sent a stool sample to to get tested for producing too many antibodies to certain foods. If you want to know for sure what main things you shouldn't eat, that is the fastest route. Google them and check it out. If not, an elimination diet is in order.
There is no such thing as going "mostly" gluten free. it must be 100%. So reading labels is a must. It's hidden in many foods. You are right in not eating raw fruits right now, but once you heal, you may be able to add some back in. Same goes for raw veggies, salad, caffeine, too much sugar, and night shades. I can eat eggs, but some can't.
When it comes to Entocort, lower your dose once you start to feel a bit constipated. Listen to your body. it will guide you. I was on it for a total of 6 months, but I was only on 9 mg. a day for the first month. 6 mg. for the second, 3 for the next two and a slow taper after that. That was with a very limited diet.
Hope you are able to enjoy your vacation.
Keep us posted
Leah
PS Alcohol is not a good idea when you are first trying to heal, but vodka and tequilla are the "cleanest" as long as you are not mixing it with fruit juice or acid. White wine is less abrasive then red because of the histamines.
Entocort helped me aVERY quickly, so I hope it does the same for you. But keep in mind that the drug only helps us to continue living our lives while we take care of our diet. It will mask a lot of the reactions you would normally have without it. The more you read here, the better, but you might want to buy Tex's book. it's in the upper right hand corner of this page. Just click on it to take you to Amazon. It's full of so much helpful information.
Yes, one diet does not fit all, but gluten and dairy seem to be the two most common inflammation producers. Soy follows after that, and then eggs. Some of us are sensitive to rice, but most of us can eat it. I can. All of the animal proteins ( meats) are usually ok, but many of us have tested positive for some of them also. If you can afford it, Enterolab is the lab that many of us have sent a stool sample to to get tested for producing too many antibodies to certain foods. If you want to know for sure what main things you shouldn't eat, that is the fastest route. Google them and check it out. If not, an elimination diet is in order.
There is no such thing as going "mostly" gluten free. it must be 100%. So reading labels is a must. It's hidden in many foods. You are right in not eating raw fruits right now, but once you heal, you may be able to add some back in. Same goes for raw veggies, salad, caffeine, too much sugar, and night shades. I can eat eggs, but some can't.
When it comes to Entocort, lower your dose once you start to feel a bit constipated. Listen to your body. it will guide you. I was on it for a total of 6 months, but I was only on 9 mg. a day for the first month. 6 mg. for the second, 3 for the next two and a slow taper after that. That was with a very limited diet.
Hope you are able to enjoy your vacation.
Keep us posted
Leah
PS Alcohol is not a good idea when you are first trying to heal, but vodka and tequilla are the "cleanest" as long as you are not mixing it with fruit juice or acid. White wine is less abrasive then red because of the histamines.
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
Welcome, Lori. Leah gave you a great overview of MC and what to expect. We are all different, have different food intolerances, medication issues, etc. This is a journey and, unless you are very lucky, a long journey.
I took 9 mg of Entocort for 2 days and immediately cut back to 1 a day. The D stopped the first day I took it and I didn't go again for about 3 days. The stuff works!! I've been on generic entocort for a very long time, now reduced to 1 every other day. Some of us can get off the drug quickly and others take a lot longer. Be patient and understand the disease. Tex's book explains everything and is a wonderful resource.
There is always someone here to listen and try to help. We have all been there through all of the grossness of this crappy disease. We all understand.
Sheila W
I took 9 mg of Entocort for 2 days and immediately cut back to 1 a day. The D stopped the first day I took it and I didn't go again for about 3 days. The stuff works!! I've been on generic entocort for a very long time, now reduced to 1 every other day. Some of us can get off the drug quickly and others take a lot longer. Be patient and understand the disease. Tex's book explains everything and is a wonderful resource.
There is always someone here to listen and try to help. We have all been there through all of the grossness of this crappy disease. We all understand.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
Lori, I was able to drink wine once I started feeling a bit better. Not a silly question at all!! I had to give up gluten, dairy, eggs and soy completely before I started feeling okay. Cutting back didn't help, and so many of these things are incorporated in foods, it takes a great deal of diligence to make sure we are not ingesting any by accident. It sounds daunting at first, but gets easier as the weeks go by. I really don't miss much, save for one of my favorite thin crust pizzas. It helped me to keep a food diary with notes on how I felt each day, along with BM's. I decided to try without Entocort, and did okay, although others say it really helped them.
I'm happy you found this site. It has helped me immeasurably.
Jean
I'm happy you found this site. It has helped me immeasurably.
Jean
"The only way to keep your health is to eat what you don't want, drink what you don't like, and do what you'd rather not." Mark Twain
Lori,
Welcome! You have found an informative and supportive group. It takes patience to figure out what will work for you, I found reading and keeping a notebook on the information from this website was helpful in sorting things out.
Medication did help stabilize my mc symptoms, but a careful diet is the key to long term management.
Also, I found eating out, in the early stages of healing, to be risky because of gluten cross contamination. It has set me back a few times. I agree with Jean about keeping a journal, as it can help you identify foods that are safe for you to eat and what to avoid.
Welcome! You have found an informative and supportive group. It takes patience to figure out what will work for you, I found reading and keeping a notebook on the information from this website was helpful in sorting things out.
Medication did help stabilize my mc symptoms, but a careful diet is the key to long term management.
Also, I found eating out, in the early stages of healing, to be risky because of gluten cross contamination. It has set me back a few times. I agree with Jean about keeping a journal, as it can help you identify foods that are safe for you to eat and what to avoid.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011