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Hello,
I'm so glad to find this forum. I have been reading on it a couple of days and have learned so much. Thank you for that.
I was diagnosed with LC this week. I have had IBS for 10-15 years but it was nothing to compare with these episodes. I went the whole month of Jan. with D, went to my GI and he got me straightened up but said If I had another we would do a colonoscopy and he'd take biopsies. I did the same thing a couple of wks ago and now here I am with my diagnosis.
He prescribed Entocort and wants me to follow the Fodmap Diet. I don't have a copay with my ins. so I was shocked at the $ for the meds. I called his office back and they prescribed prednisone. I hate this med, it makes me crazy... I thought about calling the Canadian pharmacy I read about on this forum, is it safe to do this? If so, I'm going to do that and then start with my elimination. I also had nausea with my episodes and did throw up so I have started on Benadryl. I also have had some discoloration on my tongue in the mornings which I'm sure is connected to my gut issue. I have been gargling with Listerine for that and using a tongue scrapper.
I do work fulltime and thankfully we have a really nice office with a private restroom. If it weren't for that I couldn't work. I think the urgency issue is the worst and sometimes I don't make it in time. I do have hope especially after finding you all. I would appreciate any suggestions that you have. Connie
I'm a newbie.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome Connie!
I certainly recommend Tex's book. See upper right hand corner of this page.
What color is the discoloration on your tongue?
Side effects from Prednisone are horrible. I think Canadian Pharmacy is ok. Probably others too. Someone will chime in here that has had experience. Smart doctor to have you follow FODMAP, it eliminates wheat among many other things! I have to follow it too. Benadryl will make you sleepy so may want Allegra for daytime. Try Imodium, as many as it takes, for the urgency for now. Enterolab testing is extremely valuable. As Gabes would say, Breathe! You've come to the right place.
Pat
I certainly recommend Tex's book. See upper right hand corner of this page.
What color is the discoloration on your tongue?
Side effects from Prednisone are horrible. I think Canadian Pharmacy is ok. Probably others too. Someone will chime in here that has had experience. Smart doctor to have you follow FODMAP, it eliminates wheat among many other things! I have to follow it too. Benadryl will make you sleepy so may want Allegra for daytime. Try Imodium, as many as it takes, for the urgency for now. Enterolab testing is extremely valuable. As Gabes would say, Breathe! You've come to the right place.
Pat
Connie,
Welcome. I know your feeling overwhelmed with the fresh diagnosis. You probably had lc in the first place, they like to lump everything into IBS. Just read the information for newbies and ask any question you like. We are the potty people and have exchanged some pretty disgusting stories, so don't worry about that offending anyone.
You have come to the right place for answers, this group has been a lifesaver for me. I am relatively new too, but I am sure others will chime in soon.
There are patient assistance programs that may help with the cost of prescriptions. There also is a generic, budesonide, that is much cheaper.
I have done well on Uceris, but that is about $1500 a month if your insurance won't cover it.
Diet changes will be the most help of all. Even though most GIs don't think so. When you figure out what foods trigger the D you will be much better.
Welcome. I know your feeling overwhelmed with the fresh diagnosis. You probably had lc in the first place, they like to lump everything into IBS. Just read the information for newbies and ask any question you like. We are the potty people and have exchanged some pretty disgusting stories, so don't worry about that offending anyone.
You have come to the right place for answers, this group has been a lifesaver for me. I am relatively new too, but I am sure others will chime in soon.
There are patient assistance programs that may help with the cost of prescriptions. There also is a generic, budesonide, that is much cheaper.
I have done well on Uceris, but that is about $1500 a month if your insurance won't cover it.
Diet changes will be the most help of all. Even though most GIs don't think so. When you figure out what foods trigger the D you will be much better.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Thanks Pat, I ordered Tex's book yesterday. My tongue had been yellow but I took the pepto tablets before going to bed last nt. This morning my tongue was black, which after going on line to check it out, that is normal.
I want to see if you all think I should take the budesonide instead of the prednisone. I'm thinking that would be the best....
I want to see if you all think I should take the budesonide instead of the prednisone. I'm thinking that would be the best....
Ok, I have ordered and it will be here in 10-15 days, coming from India. Unbelievable that they can sell it for so much less. My GI dr. has had a nutritionalist call me for an appt. to go over the Fodmap diet. It is not until the 20th. I'll read my book as soon as it gets here and i'll be ready to go. 
Hi Connie,
Welcome to our internet family. We consider ourselves a family because no one truly understands this disease unless they have it.
Trust me, the Indian pharmacy is making a normal retail profit. The difference between them and Big Pharma in this country, is that they are not trying to become independently wealthy on each and every single sale.
Most of the generic drugs sold in this country by Big Pharma are made for them in India, and other locations in that part of the world, so you can easily see what an incredibly outrageous markup Big Pharma applies to the price. Also, if you buy Budesonide from the Canadian pharmacies you will find that the pills themselves are made in India, and they will be the exact same product that you have ordered. The price will include approximately a 40 % markup. Still, the Canadian price is tolerable. Compared with that, clearly the U. S. pharmacy companies mark up the drug (and virtually all other prescription drugs) by percentages that range well up in the thousands, an unacceptable practice, IMO.
It sounds as though you're off to a good start with your treatment. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. We consider ourselves a family because no one truly understands this disease unless they have it.
Trust me, the Indian pharmacy is making a normal retail profit. The difference between them and Big Pharma in this country, is that they are not trying to become independently wealthy on each and every single sale.
Most of the generic drugs sold in this country by Big Pharma are made for them in India, and other locations in that part of the world, so you can easily see what an incredibly outrageous markup Big Pharma applies to the price. Also, if you buy Budesonide from the Canadian pharmacies you will find that the pills themselves are made in India, and they will be the exact same product that you have ordered. The price will include approximately a 40 % markup. Still, the Canadian price is tolerable. Compared with that, clearly the U. S. pharmacy companies mark up the drug (and virtually all other prescription drugs) by percentages that range well up in the thousands, an unacceptable practice, IMO.It sounds as though you're off to a good start with your treatment. Again, welcome aboard, and please feel free to ask anything.
Tex
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.
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Hi Connie, and welcome.
I'm impressed that your doc recommended fodmaps. Frighteningly, most GIs have nothing to say regarding diet.
Most of us have found there is a gluten connection here. In my opinion it's the most important thing to remove from your diet. Second is dairy as we cannot digest casein when out GI tract is inflamed. You might remove these items and see if you have any improvement while the entocort kicks in. It seems hard but results are worth it.
Best wishes,
Nancy
I'm impressed that your doc recommended fodmaps. Frighteningly, most GIs have nothing to say regarding diet.
Most of us have found there is a gluten connection here. In my opinion it's the most important thing to remove from your diet. Second is dairy as we cannot digest casein when out GI tract is inflamed. You might remove these items and see if you have any improvement while the entocort kicks in. It seems hard but results are worth it.
Best wishes,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Welcome! Mixed emotions... Happy that you found this site, and sorry that you had to.
Listerine is not necessary and can be an irritant as it has artificial flavors,colors, sweeteners,alcohols,etc. if you wish to use a mouth rinse use salt water. You are on the right path. Try and keep your food choices to one ingredient, low fiber,no spice. Back to the nutritional basics. When I started out I was only eating meats,fish,carrot,squash,green beans,rice, potato(skinless),water. I tried pepto bismol occasionally when needed but it made my tinnitus worse. I take no meds and have had normal BM now for 2mths. Exactly what are you eating and drinking as some of the items in a FODMAP diet are tough for our inflamed gut to handle. If you can give us an idea of what you are eating the many experienced minds here will help you fine tune your diet to help you progress. You have definitely come to the right place for help. I have learned so much from the great folks here. I couldn't have progressed so fast without their guidance. My heartfelt wish for future health. Hugs
Listerine is not necessary and can be an irritant as it has artificial flavors,colors, sweeteners,alcohols,etc. if you wish to use a mouth rinse use salt water. You are on the right path. Try and keep your food choices to one ingredient, low fiber,no spice. Back to the nutritional basics. When I started out I was only eating meats,fish,carrot,squash,green beans,rice, potato(skinless),water. I tried pepto bismol occasionally when needed but it made my tinnitus worse. I take no meds and have had normal BM now for 2mths. Exactly what are you eating and drinking as some of the items in a FODMAP diet are tough for our inflamed gut to handle. If you can give us an idea of what you are eating the many experienced minds here will help you fine tune your diet to help you progress. You have definitely come to the right place for help. I have learned so much from the great folks here. I couldn't have progressed so fast without their guidance. My heartfelt wish for future health. Hugs
Diabetic DX June 2012
Diverticulosis/ MC DX Feb.2014
I am thankful for my struggle because without it I wouldn't have stumbled across my strength.
What are you willing to let go of so you can live the life you know you deserve?
Diverticulosis/ MC DX Feb.2014
I am thankful for my struggle because without it I wouldn't have stumbled across my strength.
What are you willing to let go of so you can live the life you know you deserve?
I have been eating chicken, toast, soft boiled eggs, potatoes, rice and tea. I need to take the plunge and have the test done that most of you have had. I'm going to call my ins co. and see if I can use my Humana visa card for it. Will post when I decide. Thanks.
It would be pretty bad if I can't eat eggs. My DH just built a beautiful chicken coop and we have 10 hens, so much fun..
It would be pretty bad if I can't eat eggs. My DH just built a beautiful chicken coop and we have 10 hens, so much fun..
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
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Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
welcome....
not much to add other than, be patient, take your time to read things especially the topics, sections for newbies. ask questions.
re the chickens, not all react to chicken eggs. try to feed them with vege scraps and grass. a lot of the poultry feed mixes are full of gluten and soy.
as Heady mentions, some of the items in the FODMAP can cause some issues for MC'ers. mc is not like other IBD's, it is its own planet!! things in mc world will be foreign, contradictory, off the field, to everything you have known thus far. dont be scared, there are lots of wonderful, caring people to help you with your MC journey.
not much to add other than, be patient, take your time to read things especially the topics, sections for newbies. ask questions.
re the chickens, not all react to chicken eggs. try to feed them with vege scraps and grass. a lot of the poultry feed mixes are full of gluten and soy.
as Heady mentions, some of the items in the FODMAP can cause some issues for MC'ers. mc is not like other IBD's, it is its own planet!! things in mc world will be foreign, contradictory, off the field, to everything you have known thus far. dont be scared, there are lots of wonderful, caring people to help you with your MC journey.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Welcome Connie. You are doing all the right things and I have to say that Budesonide is the way to go. I was on it for 6 months. It worked right away for me. What's important to know is that if and when you start getting constipated, lower your dose. it's very important with this drug to taper down very slowly. I hope it works for you.
As for your diet, everyone is correct. FODMAPS is a good place to start, but it's not the whole picture. For now, stay away from fiber, most fruits, acid foods like tomato products, spicy foods, precessed foods…etc. Some of us can eat nuts, some not. Some can eat corn and rice products, others can't. Read all labels and definitely steer 100% clear of gluten ( NO TOAST). Dairy is a no no also when our guts are inflamed. When I was first DX ( over two years ago), I basically ate all meats ( nitrite free), cooked green beans, carrots, and squash. Sweet potatoes, white rice, corn tortillas ( careful with this one), homemade chicken and beef soups, eggs, Chex cereal with almond milk, a little apple sauce, avocados, olives and only used coconut oil and olive oil.
Remember that this process takes time and if your gut has been inflamed a long time, it could be a while. Be patient and remember that the Budesonide can mask food intolerances. Stick with the simple diet. When your dose is very low, you might notice some reactions that you didn't have before. That is when you "fine tune" the diet. That was when I realized that soy was bothering me ( along with it's cousins like peanuts, split peas and lentils).
The Enterolab test will be a big help. The diet is key to getting your life back. Good luck and keep us posted
leah
As for your diet, everyone is correct. FODMAPS is a good place to start, but it's not the whole picture. For now, stay away from fiber, most fruits, acid foods like tomato products, spicy foods, precessed foods…etc. Some of us can eat nuts, some not. Some can eat corn and rice products, others can't. Read all labels and definitely steer 100% clear of gluten ( NO TOAST). Dairy is a no no also when our guts are inflamed. When I was first DX ( over two years ago), I basically ate all meats ( nitrite free), cooked green beans, carrots, and squash. Sweet potatoes, white rice, corn tortillas ( careful with this one), homemade chicken and beef soups, eggs, Chex cereal with almond milk, a little apple sauce, avocados, olives and only used coconut oil and olive oil.
Remember that this process takes time and if your gut has been inflamed a long time, it could be a while. Be patient and remember that the Budesonide can mask food intolerances. Stick with the simple diet. When your dose is very low, you might notice some reactions that you didn't have before. That is when you "fine tune" the diet. That was when I realized that soy was bothering me ( along with it's cousins like peanuts, split peas and lentils).
The Enterolab test will be a big help. The diet is key to getting your life back. Good luck and keep us posted
leah
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
Welcome to the Board, Connie. I think you've gotten great advice and have taken the necessary first steps. Enterolab is a must as is stopping all gluten, no cheating.
My only addition, you can ask your doctor to write a prescription for budesinide from a compounding pharmacy. It is not expensive and is convenient. I was on budesinide for 2 years, ordered from a Canadian pharmacy. I never had a problem regardless of where the drug originated.
Welcome to the Board and good luck.
Sheila W
My only addition, you can ask your doctor to write a prescription for budesinide from a compounding pharmacy. It is not expensive and is convenient. I was on budesinide for 2 years, ordered from a Canadian pharmacy. I never had a problem regardless of where the drug originated.
Welcome to the Board and good luck.
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