My story...any insight ??

[Memory]

Hello all

Ok, I will try not to ramble while describing my situation ... will try to keep a long story short.

I woke one day about 7 yrs ago with diarrhea, I had always had a stomach made of cast iron, never even caught a stomach virus, BUT that day a stomach virus is what I thought I had ... I thought it was some sort of 24 hr bug or something, BUT that 24 hrs turned into days and weeks with increasing watery BM's each day. I went to my family Dr and was given Levison ... no help ... went back to the DR and was told I had IBS and needed more fiber and was told to drink metamucil, which only made me bloated and in pain ... off the fiber drink for me !!

SO, I have just lived with it for about 5 yrs, some days worse than others ( in this 5 yr time frame I was also diagnosed with RLS and chronic fatigue syndrome ) needless to say I wasnt feeling very well !! Two yrs ago after constant complaining to my DR at my 6 mo ck up's and routine blood tests ( I am on a statin ) she finally sent me to a GI DR ... in Oct of '08 the specialist did a endoscopy ( found erosion on my esophagus due to acid reflux ) took Prevacid for several weeks and did fine ... 2 weeks after the endoscopy he did a colonoscopy and took 7 biopsies, and found I have collagenous colitis ( all 7 showed collagen ) ... he prescribed entocort for 8 weeks, then another round of an 8 week treatment followed ( total of 16 weeks on entocort ) ... worked for me until i stopped taking it ... then the diarrhea returned
I also had blood tests, and the results showed no food allergies ( it really doesnt matter if I eat tacos and pizza or drink a glass of water, I still have the same issues )
I also had a gastic emptying study done in '08 ... results were normal.

Once again I just lived with it until a visit to my family Dr about 6 weeks ago, I had only had about 3 mos reprieve in all this time ( I was taking 2 pepto bismol 3 times a day and 1 probiotic capsule ). I suppose it had calmed down and went into 'remission' ??
I had returned to having not only the horrid BM's but was starting to feel very bloated, had a full feeling all the time, constant 'stomach noises' ( growling, rumbling and the sound of gurgling water in my stomach ) ... I was having very severe pain and a feeling of intense pressure on my insides, with the exception of that pain free, symptom free 3 mos. She had me return to the Gi Dr ... this time he gave me Asacol ( which almost put me in the hospital with horrible abdominal pain after taking it for 2 weeks ) ... I stopped taking it after spending an entire night with such awful pain and cramping that I felt as if I had given birth to 5 babies...lol...( when I called him to tell him I wasnt taking the Asacol anymore, I was informed that it can exacerbate the very symptoms it is supposed to help ) ... I told him I was back on the pepto and was drinking a probiotic milk daily and was feeling some better since stopping the Asacol, but was by no means "normal"...he suggested the entocort again.

He ordered a pelvic/abdominal CT Scan with IV contrast...showed I have a 5 mil cyst on my pancreas ( the GI Dr assured me he wasnt worried about this but would re-test and ck it in 6 mos )...I AM WORRIED !!

Anyway, I hated being on the entocort the first time ( due to some of the side effects ) BUT the thought of being symptom/pain free was indeed appealing because I am sick and tired of being sick and tired ... so I told him I would think about it ... WELL, I did have some entocort in my cabinet, so started taking 2 a day ... been taking them for just 3 days, the diarrhea subsided after just 2 days ... today I have been much better as far as pain, BUT still have somewhat of a bloated feeling, some stomach noises and almost feel constipated ... I am just a mess ... lol

Does anyone know if entocort can be taken as a "Maintenance" drug ( maybe 1 a day or 1 every other day ) ?? I am not sure if it can be used this way indefinately, I was under the impression it was used ONLY for short periods of time.

Any suggestions for relief of a bloated/full feeling ?

Anyone here very been diagnosed with a pancreatic cyst ?

Any ideas, info, advice, thoughts and insight about any of this would be appreciated.

Thanks so much for reading,
Memory

[Joefnh]

Hi Memory I believe there are several members here who do take it as a maintenance medication, usually at a lower dosage than 9mg a day. Even as a maintenance medication we need to be careful that this is still a steroid and can have side effects. This medication is designed so that about 80 - 90 % stays in the gut and does not get into your blood steam. I am in a similar position as you in that I have been on Entocort since April and did try to stop taking it in July, like you this did not work well

Are you following any diets at this point? Most people here with CC need to be free of Gluten and some fee of soy and possibly dairy. Myself included I cannot tolerate and raw veggies or fruit. One of the ways I started noticing the CC starting was after eating a nice salad. Cooked veggies tend to be fine. To help with this process, certainly I would recommend eliminating gluten and soy and start keeping a food diary to help determine which foods that you may be reacting to. Everyone is different but there are a few similarities.

While the medications like Entocort certainly help, diet also plays a very big part in your recovery and healing.

Thanks for posting here Memory, you have certainly found the best place and some great people in dealing with CC

--Joe

[tex]

You seem to respond to Entocort very quickly. That's a good sign.

Does anyone know if entocort can be taken as a "Maintenance" drug ( maybe 1 a day or 1 every other day ) ?? I am not sure if it can be used this way indefinately, I was under the impression it was used ONLY for short periods of time.

Yes, many members here take one a day, or one every other day. Test trials show that it can be safely used at such low dosage rates for an indefinite period of time. Most GI docs are overly-cautious about Entocort, because they don't realize the difference, (which Joe pointed out), between it and the other corticosteroids.

Any suggestions for relief of a bloated/full feeling ?

Yes, remove all gluten and dairy products from your diet.

Anyone here very been diagnosed with a pancreatic cyst ?

Not a cyst, but quite a few members have been diagnosed with and/or suspected to have pancreatitis or pancreatic insufficiency.

In virtually every case, pancreas issues usually disappear, once the MC symptoms are brought under control. MC can affect virtually every organ in the body.

Tex

[harma]

I am taking entocort for almost a year now (11 months), from day 1 I am on pill a day. I don't know what you see as long term treatment, but up to a year is quite a while I guess. Sometimes I try to lower the dose to one every other day, but it is still to early. Also I have tried a lower dose every day (you can open the capsules and take some of the stuff out), but that also that didn't work very well. So I am back one a day.

There are quite a few long term users on this board, also some quit and start again later.

What you maybe already have figured out, besides the medication (mostly entocort) a lot use another method to control their MC: diet. As Joe already mentioned, gluten, dairy, soy and sometimes also egg and yeast free. Most of us here are gluten and diary free and about half is also soy free. And a few others do also have other intolerances like egg, yeast.

To find out what your intolerances are you could do the food intolerances testes of Enterolab (www.enterolab.com). I did the testing because I wanted to know first what I should avoid before going on a diet. Others choose to go on a diet without the testing, it's a personal choice.

The diet is not a quick fix as entocort, the time the gut needs to heal can vary from 6 months to 2 years. I am on diet now for 9 months, I still need my medication, but I am feeling much better than last year this time. The brain fog is gone, that disappeared quite quick in a couple of months. The uncomfortable feeling in the gut took about the same time. The bloating took a lot longer, 7 to 8 months.

But unfortunately especially in the beginning (until the gut is healed) a diet is not that simple as just going gluten, soy and milk free (and maybe also yeast and egg). Because the gut is still inflamed, the puzzle starts, what food can I stand and digest without any problem and which one I can not. Normally this takes a couple of weeks to figure out and is just a game of simple trail and error. First of all cook your veggies to mush. Also a lot of us can't stand all the vegetables, so try to find out which are okay for you and which one not. Be careful with fruit, peel it!! Most of us can tolerate banana's. I also can tolerate apples and pears. All the other fruit is still a very big no. Cooked fruit is almost for no one a problem here. Also in most cases rice (not brown rice) is good option. Also in most cases meat and fish are okay (although there are some exceptions here). When it comes to fruit and vegetables be careful with portions. In the beginning of the diet a started with 100 grams a day (I am European, I only can think in grams/kilo grams etc), than twice a portion of 100 gram and slightly add more to menu. I can now eat 400 grams a day, without any problem. Same with fruit, don't eat to much of it.

Be careful with stuff from the gluten free shell in the supermarket. After a started the diet, I've tried it out. Nothing gave my some much pain as gluten free cereals, bread, crackers etc. In my case I think it was the corn. In some cases it also can be the fiber in it. Also these product contain a lot of different ingredients , so if it cause a problem it can be quite difficult to figure out what is the culprit

Cooking from scratch is the best (and cheapest) way of doing this diet.

The diet is not easy, it takes a lot of discipline and organizing (especially when you away from home), but it is doable and most important works for a lot of people here.


harma

[mbeezie]

Hi Memory,

Welcome. I can't really add much to what others have said except to say that many of us have had stool testing done to help identify some problematic foods. You might want to check out www.enterolab.com. You don't need to wait to start a gluten free/dairy free/soy free diet - you can do the test even on a restricted diet. Diet really is one of the keys to helping get symptom relief.

Mary Beth

[JoAnn]

Hi Memory, welcome aboard. You have found the right place to get help and healing. The main thing to work out is your diet, gluten free for sure. You probably have other intolerances as well. Mary Beth is right to recommend Enterolab for testing. It will tell you if you are gluten, dairy, soy, egg, or yeast intolerant. I was shocked to find out that I was reacting to all of them. I have taken entocort with wonderful results and have been off almost 2 months now. I am seeing my dr next Tuesday for a routine visit and will post how I'm doing then and will give more details. You will find all the help you need to heal on this board. It's the only reason along with a wonderful pcp that I have the health I have today. JoAnn

[Gabes-Apg]

Memory

during my research as i read through the previous posts on this site,i learnt that it can take time to figure out what works best for you, and with patience and diligence with things like diet management , as time goes on you will feel better and notice that the niggling type symptoms of bloating, discomfort, aches etc will abate.

one thing to remember - there is no right way or wrong way, there is your way.
what works for one person may not work for another, and there are some that are still doing alot of trial and error to figure out what works for them.
I wish there were shortcuts quick cures that we could pass on.
good luck making your way through the maze - and remember you are not alone.

[Zizzle]

Memory,
Don't be discouraged by the time it takes some people to get relief on the diet. I got profound improvement after just 10 days on my gluten-free/dairy-free/yeast-free diet. Bloating and indigestion were gone, I lost water weight, and urgent trips to the bathroom were vastly minimized (from 4-6 per day to 1-3). I still have loose and/or watery stools, but the urgent need to totally empty with no notice is gone, so it's totally manageable and I can leave the house and have a life again!! In time I hope the stools will firm up, but I'm not as strict with the diet - I still eat salads, fruit, nuts, fatty foods, soy additives, etc. But I am very strict about the gluten. I did Enterolab testing which can also tell you if you have a gene that predisposes you to celiac disease/gluten intolerance.

I tried Pepto Bismol for a few weeks and got no relief. Many people here have tried without improvement too.

Welcome!

[Memory]

OMGosh... TY you all so much for the interest and replies ( I have to admit most of my family and friends dont seem to understand my situation, and I think I may be wearing them out with it all ) so it is very encouraging and means so much to me to know I now have ppl on this forum that can relate to my symptoms !!

I have carefully read each reply ( many times ) and have decided I am making an appt to return to my GI Dr and request a in depth testing to food intolerance or possible food allergies ( even tho he previously did blood tests for these and assured me I have no worries concerning food ) ... he seems to believe my issue is strictly due to CC, the only thing he said that might effect the severity of the CC is stress )...

I did ck out the link to the enterolab, very informative ... ( I will discuss the option for testing by enterolab with my Dr, but I am not sure my insurance will cover the testing cost, and right now I dont have the money to pay out of pocket )

Today I took 2 entocort this morning, diarrhea still under control...just a bit of feeling bloated and kinda uncomfortable this evening ( at least NO pain ) !!

To everyone that read my extremly long post and took time to offer ideas and help I appreciate you more than you know !!
Thanks again, Memory

[mbeezie]

Memory,

For the most part, we have found that doctors are not up to speed on diet and how it impacts symptoms, so don't be surprised if your GI doesn't embrace the idea. You don't need a doctor's order for Enterolab. You can try eliminating foods on your own if testing is not an option right now. The most common intolerance is gluten, followed by dairy and soy. You most likely do not need allergy testing since these are not IgE mediated allergies.

Mary Beth