Newbie yet feeling a little less lost due to this site.

[mcardle3]

Hello everyone,

Some history first...and my apologies for the novella it became!

I'm Karen. I'm 56 years old and newly diagnosed with LC (If I read the abbreviation page correct )

I had been diagnosed since age 25 with IBS - D predominant. I've dealt with that for years. Symptoms would wax and wane.

10 years ago I got my first anal fistula, and my colo-rectal surgeon said at that time, you are dealing with some form of IBD, not IBS, but my gut doc at the time did not agree, so my diagnosis stayed at IBS, and I dutifully went every 2 years for colonoscopy.

I moved to a new state after an ugly divorce and got a new doc, who did my colonoscopy and told me the same thing. Lining looks fine, don't know why you have D so much, take this and see you in two years.

Last year I moved back home and ended up in the hospital so severely dehydrated that they kept me a week and went through 15 bags of fluid (my head felt like I had the headache from hell, my limbs hurt so bad, my palms burned, and holy heck, they couldn't even draw blood I was so dehydrated). A sigmoid and EGD showed what they called gastritis, so off they sent me again.

A month ago, the D and abdominal burning that had me so sick last year started again. I began slamming the Smart water, as I don't want to ever be that dehydrated again and decided to try the University of Michigan Gastro clinic as it would be closely related to my docs there at the Scleroderma Clinic.

You see, for years I've had a very high 1:2650 ANA with Anti-centromere pattern, but since it isn't manifesting into skin thickening or telangiectasia, etc, they will not give me the full blown SCLERODERMA title, I have been tossed in the Undifferentiated Connective Tissue Disease bin.

My thought was that my two docs (gut and sclero) could work together better if I were seen at clinics at the U of Michigan...which turned out to be correct, and a wise move on my part.

This new gut doc listened not just with her ears but with her mind and heard what I was telling her and finally someone did an EGD and Colonoscopy with biopsies. My colonoscopy showed LC with slight erosion in the area where the ileum leaves the stomach.

Health issues I deal with:
UCTD
Raynauds
Anal and Vulvar Lichen Sclerosis
Hyperparathyroid (corrected through surgery)
Morphea
LC

Drugs used for treatment of the above:
Plaquenil (UCTD)
Eladil, triamcinalone, estrace (Lichen Sclerosis)
Entocort (?) has been prescribed for the LC, and we are fighting with my crappy insurance to get it covered.

My sister, mother and one nephew are celiacs, and the gut doc did test for celiac. My blood test shows normal, so do I or don't I?

I now believe LC has been going on all these years and untreated...which irks the fire water out of me, and we all know I'm losing more water than I should anyway!

I've read a lot here and while it has helped me a good deal, I've got so many questions.

1. My gut doc does think my LC goes along with my UCTD, what do you think?

2. Does Celiac disease always go hand in hand with LC?

3. What are the main offenders food-wise (for me, BEANS is a huge one, I made a chili the other day and bloated so big I thought I'd explode.)

4. I notice meat is listed as something many people here eat a lot of, what about cholesterol, is there higher incidence of high cholesterol with MC folks?

5. What was the ONE thing you did when you were first diagnosed that helped the most?

6. You can imagine with anal lichen sclerosis (my body hates itself) and D 10+ times a day, my behind is RAW. What barrier creams/prepartations worked the best?

7. How long, once starting entocort did you begin feeling relief?

8. Do you think my daily plaquenil is making this worse?

9. If you were me, would you go gluten free, just to see if it made a difference, or is that a waste of time when one gets a negative celiac blood test?

10. Lomotil helps me a bit, is it ok to take, my doc wants me on half a imodium 3 x a day but then I get this poo plug with such a force of diarrhea behind it that I swear I could achieve liftoff when it breaks loose (tmi alert a little late).

I cried a good bit about this last night. I work full time as an exec assistant to a president of a university, and am ever thankful he is thoughtful, understanding and kind...and that I have a bathroom outside my office door...but there are times that I bloat so badly it is all I can think about and endure.

I'm done crying about this, I'm ready to do something about it and get on (as I do with all the above listed issues) as best I can.

I thank you all for all your help...your insights...your patience...and your big hearts!

Karen

[brandy]

Hi Karen,

Welcome!

There are drugs which make MC worse so maybe Tex will chime in on what you are taking. I'll respond to what I know.

2. Does Celiac disease always go hand in hand with LC?

No, but gluten sensitivity does.

3. What are the main offenders food-wise

gluten, dairy, soy and egg in order of worst offenders, gluten being worst, egg being least bad. Raw foods are bad early on and raw nuts until you heal.

5. What was the ONE thing you did when you were first diagnosed that helped the most?

Eating a "few foods regimen" early on for like 6-8 weeks. For me it looked like chicken, rice, minimal overcooked veggie for breakfast, lunch, dinner snacks for awhile until I healed some. Then I added in more foods. Some folks use mashed potatoes sweet potatoes, pork etc. Eliminating all OTC supplements for awhile. They are too much for the gut.

7. How long, once starting entocort did you begin feeling relief?

It took effect in 3 days. By the end of three weeks I was constipated and had to step down my dose. Please note that I was on no other prescription drugs at this time and had no other health conditions.

9. If you were me, would you go gluten free, just to see if it made a difference, or is that a waste of time when one gets a negative celiac blood test?

Yes, go gluten free. For us it is critical to get into remission. Entocort without gluten free will generally equal relapse when you get off of Entocort. Entocort will not heal you, it helps with the symptoms while you get the diet under control. Go GF for 2-3 months and you should feel significantly better. A one or two week trial is not long enough.

Consider picking up Tex's book. Link is in upper right hand corner.

I live in a University town. Hopefully the work parking spaces for university employees are more available then what they are in my town!

[brandy]

Hi Karen,

Entocort (?) has been prescribed for the LC, and we are fighting with my crappy insurance to get it covered.

I forgot to mention some of the Americans end up buying Entocort from Canada and/or India due to insurance/non insurance issues. Depending on the outcome of your fight re post if you want companies that forum members have dealt with in Canada and India to get Entocort.

[Erica P-G]

Hi Karen,

So sorry you have been so miserable.

5. What was the ONE thing you did when you were first diagnosed that helped the most?

I'd have to say finding this site and reading and asking as many questions as I possibly could. Then acting on a lot of it until the right things clicked.

My journey took on a life of its own and there is a great post on it under "Stickys" at the top of the Main Message board called "Need input I'm not going to get from Dr", it is packed with valuable information from many contributing members. When you have time to browse it I highly suggest it.

I'm 48 had D symptoms starting in 2007 was Dx with LC in 2012, but too clueless to know I could be doing something about it until I started searching for anyone like me out in Web land. So thankful for this site and all the beautiful people here since March 2015.

First of all the test that helped me and quite a few on this site is the Enterolab Stool Test kit from Dallas TX, that you do not need a Dr. to order for you, you can request one and it is about $539 for the most comprehensive one called A1 C1 and that was the clincher for me as to what foods were my most irritant for me and will most likely never eat again especially Gluten and Soy....I may be able to allow small hints of dairy and egg but that is wayyy down the road in my healing regimen, like another year or two.

The healing will take time, it sounds like you are proactive and are ready to make some serious headway in the MC healing process.

Cheers
Erica

[Gabes-Apg]

Welcome Karen!

also sympathies that you had to find us....

Another one here that had digestion issues my whole life, and also have lichen sclerosis.
(and have moved alot, had messy divorce etc etc... )

The list of health issues you provided can all be improved via fixing nutrient deficiencies, such as Vit D3, Magnesium.

we have another new member in the past couple of weeks who also has Lichen, here is a link to that post and discussion
http://www.perskyfarms.com/phpBB2/viewt ... sc&start=0

to answer some of your questions.....

5. What was the ONE thing you did when you were first diagnosed that helped the most?

getting onto the right eating plan - Gluten free, Dairy Free, Soy Free, low inflammation/low histamine, low fibre, bland gut healing eating plan
Lots of home made bone broth, lots of soups and stews where the meat and my safe veges are all well cooked and easy to digest

6. You can imagine with anal lichen sclerosis (my body hates itself) and D 10+ times a day, my behind is RAW. What barrier creams/prepartations worked the best?

I have had anal fissures with my lichen sclerosis. I found Coconut Oil the best natural barrier/helping the skin to heal

9. If you were me, would you go gluten free, just to see if it made a difference, or is that a waste of time when one gets a negative celiac blood test?

most definitely - gluten is a high inflammation food to digest, regardless of if you are celiac or not. with the health issue you have, your body is in inflammation overload! avoiding high inflammation foods is your best bet to stopping these issues being chronic.
Gluten is high inflammation, as is dairy.
other ingredients that would not be helping at the moment are; Sugar, Alcohol, processed foods, things with more than 6 ingredients.

10. Lomotil helps me a bit, is it ok to take, my doc wants me on half a imodium 3 x a day but then I get this poo plug with such a force of diarrhea behind it that I swear I could achieve liftoff when it breaks loose (tmi alert a little late).

with this type of reaction, i would be cautious about taking high doses of entocort. Making the diet changes as suggested and starting Vit D3 and magnesium will help things


how long does any of this take -
is the million dollar question! everyone is different.
keep in mind that for a healthy person to heal a broken bone can take 8-12 weeks. to correct nutrient deficiencies like the Vit D3 and Magnesium can take 8-16 weeks....

for some, making the diet changes brings gradual improvement over a couple of months.
For others with chronic inflammation and deficiencies it can take 4-6 months to have good improvement.
to get to a stage of no longer having chronic flares, in your case i would estimate this would take up to 12 months
good gut healing and next to no symptoms takes most people 2 years.

this may sound overwhelming at first, but if you spend some time reading the success stories area, you will see that all the changes suggested are worth it! sadly there is no quick fix or magic potion, time, the right nutrients, optimised healing environment is the best long term option...

hope this helps...

[tex]

Hi Karen,

Welcome to our Internet family. Wow! It only took your doctors 31 years to diagnose your LC. That may be a new record.

You've already received some great responses, so I'll just hit a few high spots here and there. The important things first — sore behinds are so common with this disease that they are almost a badge of honor. (OK, maybe that's a slight exaggeration, but they are indeed a very common problem). Here is a link to a thread that includes some medication suggestions for dealing with a sore behind that has become about 50 times worse because of all the watery D associated with MC:

sore rear end!

2. Does Celiac disease always go hand in hand with LC?

As Brandy so eloquently pointed out — no. But virtually all of us have a form of non-celiac gluten sensitivity that cannot be detected by the obsolete blood tests most doctors use, so they have no official way to diagnose it. On the average, we are at least as sensitive to gluten as the average celiac, and if we continue to eat gluten, we will continue to generate new inflammation in our intestines, and this will perpetuate the disease, effectively preventing remission.

4. I notice meat is listed as something many people here eat a lot of, what about cholesterol, is there higher incidence of high cholesterol with MC folks?

To the contrary, most of us find that our PCP is impressed when she or he sees that our test numbers typically look much better after a year or 2 on the GF diet.

5. What was the ONE thing you did when you were first diagnosed that helped the most?

Figure out how to treat the disease myself, because my GI specialist failed to take biopsy samples and told me that there was nothing wrong with me.

Again, welcome to the board, and please feel free to ask anything.

Tex

[jlbattin]

5. What was the ONE thing you did when you were first diagnosed that helped the most?

Welcome, Karen. You are in the right place. I know it all seems very overwhelming right now, but quite honestly, the first thing I did after my diagnosis (which was 5 weeks to the day my D started this summer), was find this website, settled down in my comfy recliner with a big glass of iced water, and read almost everything on this website. I went back and read lots of archives. It is filled with valuable information. When I found something I wanted to remember, I would cut and paste it into a word document. I also bought Tex's book right away and read it from cover to cover. I highly recommend it.

At around the same time, I cut gluten, dairy, soy, and egg out of my diet. A little over 2 months later now, and I am still on a very restricted diet, but my D is under control, and I honestly feel better than I have in a really long time. There is light at the end of the tunnel. I'm a perfect example. I honestly thought this summer that as sick as I was that my life was over (and quite honestly, I felt so bad that I wanted it to be), and I didn't think I'd be able to go back to work. There were days that it was all I could do to even get out of bed. I have more energy and am feeling better now than in such a long time, it's unbelievable. I know that's due to the diet changes.

Stress is never our friend. Try not to stress. That can send me into a quick flare. I know easier said than done, but I'm working on ways to deal with stress.

There is an awful lot of information out there. I have found the information on this board to be more valuable than anything else out there as all of these folks have lived it. It feels like family, and sometimes I think everyone here understands me better than my own family.

Don't be afraid to ask questions. Hang in there. It does get better!

[ponywoman]

Karen, I had a script for plaquenil from my RA doctor but never took. Got it last month but, beside the eye caution with this drug, I had just got a muscle disease & as I was reading the plaquenil site it said not to use if any muscle problems. But I also recall reading a caution not to take plaquenil if have any bowel diseases like IBD so I assume Colitis would be a no-no for plaquenil use also. But you might want to investigate the plaquenil sites that give the drug side effects, cautions, etc. to check this adviso out further. Ponywoman

[mcardle3]

Karen, I had a script for plaquenil from my RA doctor but never took. Got it last month but, beside the eye caution with this drug, I had just got a muscle disease & as I was reading the plaquenil site it said not to use if any muscle problems. But I also recall reading a caution not to take plaquenil if have any bowel diseases like IBD so I assume Colitis would be a no-no for plaquenil use also. But you might want to investigate the plaquenil sites that give the drug side effects, cautions, etc. to check this adviso out further. Ponywoman

Ponywoman,

I'll have to talk to the gastro and scleroderma doc about this. My tendon rub was so bad that I had begun having trouble walking. When I say trouble walking, I mean...even getting dressed was so bad my darling had to help me dress. Since the plaquenil no more tendon rub and more strength and mobility. To be honest, I don't mind giving up the foods (gluten/soy/dairy/eggs) but going back to the time when I had to stumble from piece of furniture to piece of furniture is going to be difficult for me to contemplate.

I'll look at the Plaquenil site, but if that has to go, I mean to tell you, that will be a hard physical and emotional thing to deal with.

Thank you for your thoughts, I appreciate and covet them.

[mcardle3]

5. What was the ONE thing you did when you were first diagnosed that helped the most?

Welcome, Karen. You are in the right place. I know it all seems very overwhelming right now, but quite honestly, the first thing I did after my diagnosis (which was 5 weeks to the day my D started this summer), was find this website, settled down in my comfy recliner with a big glass of iced water, and read almost everything on this website. I went back and read lots of archives. It is filled with valuable information. When I found something I wanted to remember, I would cut and paste it into a word document. I also bought Tex's book right away and read it from cover to cover. I highly recommend it.

At around the same time, I cut gluten, dairy, soy, and egg out of my diet. A little over 2 months later now, and I am still on a very restricted diet, but my D is under control, and I honestly feel better than I have in a really long time. There is light at the end of the tunnel. I'm a perfect example. I honestly thought this summer that as sick as I was that my life was over (and quite honestly, I felt so bad that I wanted it to be), and I didn't think I'd be able to go back to work. There were days that it was all I could do to even get out of bed. I have more energy and am feeling better now than in such a long time, it's unbelievable. I know that's due to the diet changes.

Stress is never our friend. Try not to stress. That can send me into a quick flare. I know easier said than done, but I'm working on ways to deal with stress.

There is an awful lot of information out there. I have found the information on this board to be more valuable than anything else out there as all of these folks have lived it. It feels like family, and sometimes I think everyone here understands me better than my own family.

Don't be afraid to ask questions. Hang in there. It does get better!

When my gut doctor called with the biopsy results, I asked her should I use a restricted diet, and she said no, eat what I wanted...so this concerns me ABOUT HER. I immediately went gluten free and have been gluten free for only 5 days and already can feel the difference. Yesterday, however, I craved a Pepsi. I hadn't had one in some time and the bloat that ensued tells me that won't be happening again soon.

One question I have...do you bloat? If you do, when you bloat do you feel like you can't breathe correctly?

It is very good advice on the cut and paste into a word document and I'm going to steal that idea. Thank you.


Karen

[mcardle3]

Hi Karen,

Welcome to our Internet family. Wow! It only took your doctors 31 years to diagnose your LC. That may be a new record.

You've already received some great responses, so I'll just hit a few high spots here and there. The important things first — sore behinds are so common with this disease that they are almost a badge of honor. (OK, maybe that's a slight exaggeration, but they are indeed a very common problem). Here is a link to a thread that includes some medication suggestions for dealing with a sore behind that has become about 50 times worse because of all the watery D associated with MC:

sore rear end!

2. Does Celiac disease always go hand in hand with LC?

As Brandy so eloquently pointed out — no. But virtually all of us have a form of non-celiac gluten sensitivity that cannot be detected by the obsolete blood tests most doctors use, so they have no official way to diagnose it. On the average, we are at least as sensitive to gluten as the average celiac, and if we continue to eat gluten, we will continue to generate new inflammation in our intestines, and this will perpetuate the disease, effectively preventing remission.

4. I notice meat is listed as something many people here eat a lot of, what about cholesterol, is there higher incidence of high cholesterol with MC folks?

To the contrary, most of us find that our PCP is impressed when she or he sees that our test numbers typically look much better after a year or 2 on the GF diet.

5. What was the ONE thing you did when you were first diagnosed that helped the most?

Figure out how to treat the disease myself, because my GI specialist failed to take biopsy samples and told me that there was nothing wrong with me.

Again, welcome to the board, and please feel free to ask anything.

Tex

I've spent two days reading so many of your posts. I'd like to personally thank you for putting so much effort into helping people, like myself, who come here feeling defeated and sad.

It is a breath of fresh air to read success stories, whether those stories are minimally successful, or majorly! Success is success, and I hope to be one of those people, if not in short order...soonish :)

I feel like I just keep getting hit with more and more "stuff" to deal with and at times I feel overwhelmed. As my sclero doc told me...it doesn't look like it will kill you, but it will make you miserable.

Tex, I am miserable. My abdomen burns. It burns continually. I can deal with the food stuff, I can deal with the diarrhea, shoot, I should be crowned Queen of the Bathroom, but that burning does (and this is hard for me to admit to my family and friends) get me down. Lying on my left side and slightly elevated head seems to help so I spend some time each evening after work relaxing that way.

I hope to spend my breaks at work today finding your book, looking at the links the sweet folks here have shared with me, and realizing that it is not so good now, but there is hope that it can be.

Karen

[mcardle3]

Welcome Karen!

also sympathies that you had to find us....

Another one here that had digestion issues my whole life, and also have lichen sclerosis.
(and have moved alot, had messy divorce etc etc... )

The list of health issues you provided can all be improved via fixing nutrient deficiencies, such as Vit D3, Magnesium.

we have another new member in the past couple of weeks who also has Lichen, here is a link to that post and discussion
http://www.perskyfarms.com/phpBB2/viewt ... sc&start=0

to answer some of your questions.....

5. What was the ONE thing you did when you were first diagnosed that helped the most?

getting onto the right eating plan - Gluten free, Dairy Free, Soy Free, low inflammation/low histamine, low fibre, bland gut healing eating plan
Lots of home made bone broth, lots of soups and stews where the meat and my safe veges are all well cooked and easy to digest

6. You can imagine with anal lichen sclerosis (my body hates itself) and D 10+ times a day, my behind is RAW. What barrier creams/prepartations worked the best?

I have had anal fissures with my lichen sclerosis. I found Coconut Oil the best natural barrier/helping the skin to heal

9. If you were me, would you go gluten free, just to see if it made a difference, or is that a waste of time when one gets a negative celiac blood test?

most definitely - gluten is a high inflammation food to digest, regardless of if you are celiac or not. with the health issue you have, your body is in inflammation overload! avoiding high inflammation foods is your best bet to stopping these issues being chronic.
Gluten is high inflammation, as is dairy.
other ingredients that would not be helping at the moment are; Sugar, Alcohol, processed foods, things with more than 6 ingredients.

10. Lomotil helps me a bit, is it ok to take, my doc wants me on half a imodium 3 x a day but then I get this poo plug with such a force of diarrhea behind it that I swear I could achieve liftoff when it breaks loose (tmi alert a little late).

with this type of reaction, i would be cautious about taking high doses of entocort. Making the diet changes as suggested and starting Vit D3 and magnesium will help things


how long does any of this take -
is the million dollar question! everyone is different.
keep in mind that for a healthy person to heal a broken bone can take 8-12 weeks. to correct nutrient deficiencies like the Vit D3 and Magnesium can take 8-16 weeks....

for some, making the diet changes brings gradual improvement over a couple of months.
For others with chronic inflammation and deficiencies it can take 4-6 months to have good improvement.
to get to a stage of no longer having chronic flares, in your case i would estimate this would take up to 12 months
good gut healing and next to no symptoms takes most people 2 years.

this may sound overwhelming at first, but if you spend some time reading the success stories area, you will see that all the changes suggested are worth it! sadly there is no quick fix or magic potion, time, the right nutrients, optimised healing environment is the best long term option...

hope this helps...

Gabes,

I'm such a zealot on my lichen that I've actually had reversal of scarring in some places AND stay on a maintenance regimen that is actually working. I'm hoping to apply the same "zealotry" in getting my belly better. I'm sorry for your lichen and this gut mess we deal with. My grandfather used to say, "enough is enough and too much is nasty"...I feel as if I've crossed from enough into "too much"

I am very Vit D deficient. The gut doc has me on 50,000 (I think, it is early here I will go look later to determine if that is correct or not) mg once a week. I am wondering if that is hurting my gut too. What is the best way to get that Vit D? My Vit B is low too. What are your thoughts on vitamin supplements and when/how is the best time to use them?

I'll have to look into low histamine/low inflammatory foods and what they are, I actually have no idea on that one!

The doc has prescribed 3 mg of entocort 3 times a day, or three pills at a time, so 9mg a day, is that a high dose? I am now taking one lomotil a day and experiencing ribbon stools, which is all I can do, with the scarring and lichen so I'm feeling good about that. I've yet to get the entocort as my doc is fighting my insurance for it. Probably Friday.

I must get ready for work, but want to reply to each of you who have taken time out of your days to get encouragement and help to me. I know my process. It is to freak out for two days (and I allow myself that as I know that is how I work), then get determined...once determined, I then go forward absorbing all the information I can possibly get to work through some of this stuff.

The thing worrying me most is giving up that Plaquenil...I hope I won't have to, it has meant being mobile again to me. Sigh, what a freaking mess I am!

[mcardle3]

Hi Karen,

Welcome!

There are drugs which make MC worse so maybe Tex will chime in on what you are taking. I'll respond to what I know.

2. Does Celiac disease always go hand in hand with LC?

No, but gluten sensitivity does.

3. What are the main offenders food-wise

gluten, dairy, soy and egg in order of worst offenders, gluten being worst, egg being least bad. Raw foods are bad early on and raw nuts until you heal.

5. What was the ONE thing you did when you were first diagnosed that helped the most?

Eating a "few foods regimen" early on for like 6-8 weeks. For me it looked like chicken, rice, minimal overcooked veggie for breakfast, lunch, dinner snacks for awhile until I healed some. Then I added in more foods. Some folks use mashed potatoes sweet potatoes, pork etc. Eliminating all OTC supplements for awhile. They are too much for the gut.

7. How long, once starting entocort did you begin feeling relief?

It took effect in 3 days. By the end of three weeks I was constipated and had to step down my dose. Please note that I was on no other prescription drugs at this time and had no other health conditions.

9. If you were me, would you go gluten free, just to see if it made a difference, or is that a waste of time when one gets a negative celiac blood test?

Yes, go gluten free. For us it is critical to get into remission. Entocort without gluten free will generally equal relapse when you get off of Entocort. Entocort will not heal you, it helps with the symptoms while you get the diet under control. Go GF for 2-3 months and you should feel significantly better. A one or two week trial is not long enough.

Consider picking up Tex's book. Link is in upper right hand corner.

I live in a University town. Hopefully the work parking spaces for university employees are more available then what they are in my town!

Thank you, Brandy.

I have just ordered Tex's book and am ready to sit down for a good read on my porch as soon as it arrives.

I began the Gluten Free thing on Saturday and already do feel it is doing some good. Less abdominal pain, although the pain persists, it isn't nearly what it was. I guess I had a little bit of a head start on the thing as so many of my family are Celiacs. My mother called last night telling me what was good to get and what was not, and through it all I'm thinking..."but I still can't have that...YET!"

I have a big weekend away from home, so I'm going to start my elimination diet on Monday, there is no sense in setting myself up for failure, but I will follow gluten free, and low fiber while out and about.

I actually live out in the woods on a private road with a whopping 12 houses on it, I drive to the University town. As my boss says...you have to love where you live and hate the commute, or you have to love the commute and hate where you live. I chose the love where you live option :D

I know I keep saying it, but I felt a little disappointed that this took so long to discover (all those years sick...seriously!) I was a little lost in what to do about it. I was a little anxious and scared, but finding you all has been a boon for me emotionally and physically, thank you.

[mcardle3]

Hi Karen,

Entocort (?) has been prescribed for the LC, and we are fighting with my crappy insurance to get it covered.

I forgot to mention some of the Americans end up buying Entocort from Canada and/or India due to insurance/non insurance issues. Depending on the outcome of your fight re post if you want companies that forum members have dealt with in Canada and India to get Entocort.

I spoke with the gut doc yesterday as well as my insurance and they said I could get three months worth for $100 if my doctor jumped through hoops for them and did some odd sort of dog and pony trick.

I called the doc's office, they said they would address it...I'll call after lunch today to make sure they did. Finger's crossed.

Does the generic of entocort work just as well?

EDITED TO ADD: I just heard from my gut doc's office (her nurses are phenomenal) and they said that my insurance not only turned down the entocort but the generic as well as another option! They are going to do a peer to peer review as they feel strongly that this needs to be covered. I'll keep my political views to myself, but this sucks.

[mcardle3]

Hi Karen,

So sorry you have been so miserable.

5. What was the ONE thing you did when you were first diagnosed that helped the most?

I'd have to say finding this site and reading and asking as many questions as I possibly could. Then acting on a lot of it until the right things clicked.

My journey took on a life of its own and there is a great post on it under "Stickys" at the top of the Main Message board called "Need input I'm not going to get from Dr", it is packed with valuable information from many contributing members. When you have time to browse it I highly suggest it.

I'm 48 had D symptoms starting in 2007 was Dx with LC in 2012, but too clueless to know I could be doing something about it until I started searching for anyone like me out in Web land. So thankful for this site and all the beautiful people here since March 2015.

First of all the test that helped me and quite a few on this site is the Enterolab Stool Test kit from Dallas TX, that you do not need a Dr. to order for you, you can request one and it is about $539 for the most comprehensive one called A1 C1 and that was the clincher for me as to what foods were my most irritant for me and will most likely never eat again especially Gluten and Soy....I may be able to allow small hints of dairy and egg but that is wayyy down the road in my healing regimen, like another year or two.

The healing will take time, it sounds like you are proactive and are ready to make some serious headway in the MC healing process.

Cheers
Erica

So you are a relative newbie too to this site. Since you began looking at this in earnest in March, how do you feel now, and what changes health-wise are you noting?

I'll consider doing the enterolab stool test. Can your doctor order it or is it something you just do on your own? I doubt my insurance would pay for it anyway, if they won't even consider the entocort prescription.