Remission ......has anyone seen "Norman"

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Bama12
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Remission ......has anyone seen "Norman"

Post by Bama12 »

What do you all consider remission?

No D and not taking prescription drugs?

Can remission be reached with diet alone and Not taking Asacol or Entocort ?

I started symptoms June '12

So it's been almost a year, so will it take a year befor I see Norman?

I've been on Asacol for 3 months and have yet to see him.
I've been GF for 5 weeks.

I assume next step is soy and dairy.

Do I continue taking Asacol and entocort while eliminating gluten/soy/dairy.

I have to ask, went to my GI yesterday and he said he does not understand why I
Am not significantly better because of Asacol.
I had to ask him for Entocort!!

And he said if I'm not getting better without gluten to add it back and eat normal.
Including dairy and soy !!!

So frustrating, any good GI's in central Florida ?
Saw one on Tex's list but was in Juniper (over 3 hours away)

Please respond, I'm desperate
My STD was denied and I have to be back to work on the 15th
My job is very stressful, and so super busy that I do not get breaks.
Concerned that I will spiral and the flood gates will open again.


:cry: :cry:
-Lynn
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Gabes-Apg
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Post by Gabes-Apg »

Lynn

quite a few of your questions are answered in the posts in the 'Success Stories' area of the forum.

you will see how many attained remission/wellness and how it is defined for that individual based on their individual circumstances...
Gabes Ryan

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Bama12
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Post by Bama12 »

Where do I find success stories ?
Am I just totally missing it ?
-Lynn
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Joefnh
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Post by Joefnh »

Lynn its a section of this board you can find at:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=71

BTW welcome to the group...
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Post by lando »

Dr. Moore in Orlando fl. He isn't perfect but he is pretty good. He is the one I go to now.


http://www.orlandogastrodoctors.com/index.php
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Post by Leah »

HI Lynn.
Lots of questions! Did your doctor give you the Entocort? If the Asacol isn't helping you, perhaps you should stop taking it and only take the Entocort. i was on it for 6 months, slowly weaning down as i felt better. it worked wonders along with diet. Diet alone can work, but it takes a lot longer and you must eliminate many things at first.

Remission is hard to define. I'm not sure whether i am in it or not, but i am definitely in a place that is very livable. Some of my BMs are soft, but i only go once a day in the morning, so who cares what comes out of me? Everyone is different. Some people are not happy until they are having normans all the time. Recently, I had to back off of some of the things i was allowing myself because i was slowly getting bloating and pain again. Once i cleaned up my diet, within a few days, i was feeling better again.

You might want to remove both dairy and soy while you are on Entocort. When you are on a very low dose, you can try to test one at a time and see what happens. it's best to take out as many aggravators as you can while trying to heal. That includes RAW fruis and veggies ,beans and legumes, spicy, acid foods.....

It takes a long time for the effects of gluten to be out of your body ( months)

Good luck and keep us posted
leah
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tex
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Post by tex »

Hi Lynn,

Remission is possible with or without medications, but of course in the long run, it's better if we can do it without medications (eventually).

I'm not a doctor so I'm not advising you to do this, but if I were in your situation, personally I would ignore your doctor's advice and not even consider going back to eating gluten, because I can absolutely guarantee you that not eating gluten is not the cause of your MC symptoms. Therefore, eating gluten is not a solution, so eating it would be counterproductive.

For most of us, 5 weeks would not be long enough for the diet to work, so you probably just need more healing time. If the Asacol is not helping after 3 months, it is probably never going to help.

If you can get a prescription for Entocort, and it works for you, then you should begin seeing improvement within a couple of weeks or so, hopefully before it's time for you to return to work. And when I started taking Entocort I would stop using the Asacol, and I would continue to avoid dairy and soy (in addition to avoiding gluten).

As Leah said, please keep us posted on your progress.

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.
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Post by TXBrenda »

I am one that controls my symptoms by diet alone, but my only intolerance is gluten. I tried taking asacol but it didn't help. Good look in your journey and please keep us posted.
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Post by maestraz »

Hi Lynn,
I was DX 3/11, took Entocort till late 2011, weaned off. I am now on a maintenance dose of balsalazide, and I feel okay with it. I've been GF/DF/mostly SF since spring 2011. It is only in the last few months that I have had more consistently solid BMs. For me, I have chosen not to get hung up on what I see in the bowl, as long as I know I can make a few morning modifications and then get on with my day. I do consider myself in remission, because I don't feel achy and exhausted, and my dietary changes have clearly helped,
Suze
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Post by JoAnn »

Hi Lynn, I remember being in a very similar situation as you are. I had taken medical leave, but had not figured everything out and was terrified of returning to work. Thank goodness I found this board about a month before I went back. I was on Asacol first, and kept getting sicker and sicker on it. My doctor kept saying I should be getting better. It was because of the advice here that I went off from it and asked for entocort. I elminated gluten and then sent off for the Enterolab tests and was shocked to find I also needed to eliminate dairy, soy, and eggs. It was a bit rough at first, but by being strict with my diet and using entocort, I began to feel some control over my life and wasn't as fearful at work. It took a year to feel like I was really getting somewhere, and then I had a big flare over the holidays. I took a week's worth of low dose prednisone and then back on entocort. It was about 4 months later that I really started to feel like things were stabilizing and I was living my new "normal". I went off the entocort that summer and have managed with diet ever since-about 3 years ago. This is a short summary of a very difficult time for me. Lots of ups and downs, forwards and backwards, and trying to figure out what in the world I could eat and not eat. I guess what I'm trying to say is that you really do have to take the long view and yet try to figure out how to make it through the day. You have to develop incredible patience and realize for most of us things gradually improve over time-it's a process and not an event. If I were you, I would eliminate the big 4-gluten, dairy, soy, and eggs and see what the entocort does for you. There were times I had to supplement with Immodium to get through the day. I sympathize with the stress you are feeling and hope you can find a plan that will help you feel better and be able to work. I have said this many times before, but if I had not found and followed the advice on this board, I'm sure I would have ended up on disability. I feel fortunate and blessed that I have been able to heal, find remission, and live my life the way I want to inspite of having MC. I hope this helps you in some way and hope you feel supported as you try to figure this all out. JoAnn
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Post by tlras »

Hi Lynn,

I've wondered about remission as well. I'd like to think I am but I do have one occasional symptom and that is minor bloating. My D and pain went away when I started the Pepto protocol back in September....all Norms since then and only one a day and sometimes I skip a day. I do sometimes get sluggish but just up the fiber a little and that helps. I had the D beginning in April....went gluten free July 1 and September still had D. Had gone dairy free a month earlier but still had D but it had gotten somewhat better. Lost too much weight so got on Pepto....my miracle drug. It apparently takes a while for gluten to get out of your system so hang in there. I can't believe your doctor told you to add it back in.....that would be a big mistake. I eliminated most soy but do okay with a little. My bloating has gotten better since I quit binging on carbs. Been med free since late December.

I was on Asacol as well but it made me worse....doctor then quickly switched me to Pepto. Make sure all your meds/vitamins have no gluten or lactose. Asacol has lactose in it.

I've been healing since July so it takes a while. I'm adding more foods in and doing so much better....you will too.

@Leah...what foods did you give up recently that contributed to your bloating/pain? Have to tell you I ate a small salad twice this week and no issues!! Thought about you.

Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Bama12
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Post by Bama12 »

Thanks to all who responded.

TeX......I have been following your advice since day one.
Should I try the pep to protocol? Or begin the Entocort?
I guess I'm reluctant to take yet again another prescription.

I have to go back to work.....so if Entocort will help me heal?
Or just control my D?

I know I need TIME to heal.. but I'm worried returning
To work will set me back :(
-Lynn
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Post by mzh »

I have Norman if I don't eat salads and drink only one cup of coffee a day. And I did terrible on Asacol and the like. Had to stop them. Then they gave me Entocort and it was a Godsend to me. I'm not on it now. If I had to take it again, I would without hesitation.
Also have sleep apnea
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tex
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Post by tex »

Lynn wrote:Should I try the pep to protocol? Or begin the Entocort?
I guess I'm reluctant to take yet again another prescription.
That's a tough question, because based on efficacy trials, they are about equally effective for controlling the symptoms of MC. The problem is that some of us cannot tolerate Pepto-Bismol (bismuth subsalicylate), and some of us cannot tolerate budesonide (Entocort EC), and there is really no way to predict ahead of time how we might respond.

One possible clue is salicylates. Someone who is sensitive to NSAIDs, will probably react adversely to any mesalamine-based drug (such as Asacol), because of the fact that they are all derived from salicylic acid. That implies that there may also be an increased probability that they will react adversely to bismuth subsalicylate, as well. There isn't necessarily a 100% correlation, but clearly there is an associated increased risk of an adverse reaction and/or efficacy failure.

Entocort EC will not assist healing, per se (because corticosteroids actually retard healing), but if it is effective for you, then it will help to control your symptoms by reducing the inflammation level, so that you don't have to deal with all those symptoms while you are waiting for the diet to changes to take over to prevent future inflammation from developing.

So in reality, the Entocort will just control the D (and other symptoms), by temporarily masking your symptoms. The actual healing will be done by the diet changes, because they will prevent the inflammation from developing in the first place. IOW, the diet changes will address the cause of the problem, while the Entocort will treat the symptoms.

That said, if Entocort works for you, it can make life much easier for you during the early months before the diet changes have had time to bring substantial improvement. It can mean the difference between being able to get out and go to work without extreme fatigue and without fear of having an embarrassing accident, or being a virtual prisoner in your own home.

Of course, if the Pepto treatment works for you, then it can do the same thing, so the choice really boils down to personal preferences (and whether or not either treatment is personally effective). Both treatments have about the same average time to begin showing substantial benefits — roughly 2 weeks, but some people see improvement in a few days, while others take longer (for either treatment).

If I were in your shoes, I would take my choice and begin trying it, and if it doesn't seem to be helping after a couple of weeks, I would consider trying the other treatment. There is no obvious medical reason why both treatments cannot be used concurrently, but the problem with that approach is that if you happen to have a reaction against one, the other will not be able to control your symptoms, and you probably won't be able to figure out which one is causing the problem.

Good luck with this, whichever treatment you choose to try, and please keep us posted.

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.
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Post by Leah »

@terri
You made me smile when you said you thought of me while having your salad. I was eating in restaurants and ordering the best i could, but you know how that is. Then i think I was eating too much sugar and fat. the combination is lethal for me. I am already feeling better, but i think I need to not eat the skin on the chicken any more ( it's so good though when it gets all crispy).

Gotta go, I'm actually expecting Kari here in a few minutes!
it's a beautiful day on the coast today. She should enjoy it :)

leah
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