HELP PLEASE

[nikanjoe]

Hoping to get some insight and suggestions from everyone. My mom is 61 years old and about twelve years ago she went to miami to visit my aunt who was sick with cancer and came back and began to have horrible diarrhea, cramping and gas. Literally, one day she was fine and the next day she had the big D. She basically self treated for the first five or six years with no real success.
Eventually, she saw a doctor for it. They did all the test for parasites, infections, diseases, etc. nothing came up positive. They did a colonoscopy that came up negative for everything. They have put her on Limotil which only cuts the frequency of the diarrhea down from like 15 a day to five to 10, but it doesn't work consistently. They have put her on Pepto Bismol, which basically had no effect. They put her on Zantac even though she didn't have heartburn and all it did was make the diarrhea ten times worse and actually gave her heartburn. She has tried eating only meats and fruits and salads. She recently began having bouts of bowel incontinence and they did another colonoscopy which came back as either collagenous colitis or the other lympho whatever colitis. As of today, the nurse practitioner at her GI doc's office has given her two weeks worth of mesalamine to try.
I am just so frustrated. It is sickening to me that my mother has suffered with this horrible diarrhea and pain for more than a decade and for at least the last six years has been under the care of primary and GI doctors trying to get help for this problem and they all blow it off like it's no big deal or they don't know what to do. Why is it taking this long to get this diagnosed and work through the treatment options until a solution is found?
My mom says she has another appointment with the GI doc in three months. But if this mesalamine doesn't start working in two weeks, I think I've got her convinced to go to the Mayo Clinic in Florida. I told her if she agrees to go, I will beg borrow and steal to get the $3000 she'll need to pay for a hotel room while she is examined and treatments are determined and begun. I don't know what else to do but go to Mayo - they at least won't blow her off and will start doing something. I don't care if I have to drop out of college and get a job to earn the money.
I just can't take it anymore. My poor mom can't do all the things she would love to like go to the grandkids' soccer games, take road trips, go to England and see Liverpool beat Arsenal at soccer in person. She's chained to a freaking toilet. What kind of life is that?

Can somebody please just tell me there is a magic pill out there?

[JLH]

Nikanjoe: I am very glad you found us and your Mom will be, too. Until Tex comes along to answer your questions, please read as much as you can here starting with the part for newbies. Also, read at www.enterolab.com

I don't think your Mom will need a trip to Mayo Clinic. There is more info and support here than you can get anywhere in the world.

By the way, the magic pill is Entocort for many. However, most of us have to give up gluten. Some need to give up dairy and about half of us can't tolerate soy.

[wonderwoman]

Welcome. This is the best site for help with her problems. The secret for success is she must eliminate all gluten from her diet. There is a lot of information here that will help her. Does she have access to a computer. If she does, it would be best if she did the reading and asked the questions. In the meantime, you can certainly help her with the info here. Mayo Clinic may be no better at helping her than what she can find here. Good luck.

[natythingycolbery]

As of today, the nurse practitioner at her GI doc's office has given her two weeks worth of mesalamine to try.

Firstly, welcome to the group.

Compared to some people on here, and compared to your mum I only had mild D when I was diagnosed with MC, I was put on mesalamine (4g a day) for at least a month when i was first diagnosed and it only really started having an effect at the start of the third week, how much have they put your mother on? it doesn't sound like that is long enough for something to actually happen, except maybe reduce the amount of times she is going. (Although I am not a medical expert, i just find that strange, unless they are planning to carry on this treatment after the trail period is over? yet two weeks as a trial doesn't seem long enough to see if it does work either)

I hope you find all the help you need here.

[starfire]

Just my opinion, but 2 weeks of mesalamine probably won't do anything for her at all.

Shirley

[natythingycolbery]

Just my opinion, but 2 weeks of mesalamine probably won't do anything for her at all.

Shirley

I meant to say exactly that but my mind has gone awol thanks Shirley! (I should go to bed its 2am here)

[nikanjoe]

Thanks for your comments so far. I've been doing research on this site for a few hours now and called my mom. She's in tears. Just the little bit of information I've been able to glean and pass on has kind of pushed her over the edge, so I think I'll give it a rest and let her kind of digest everything that's happened today.

I do have some questions though that all of you may be able to help me with in the mean time.

I see that many, many of you are on a GF diet, despite not having celiac disease.

1. Is the GF diet pretty much a standard first step in tackling MC? (This is a tough one for my mom to swallow - literally - we are from southern louisiana so everything is fried, we love our pastas and French bread and you can't make a roux, which is the base of a gumbo, without flour, so we are talking some major losses to our way of life if she can't have gluten)

2. My mom has this big aversion to taking steroids for some reason, but I see many of you have had good results from taking Entocort for at least a while to get things stabilized. Are there any major concerns with taking it in t he relatively short term?

3. Does anyone know a good GI doc in the lafayette, baton rouge or new orleans areas who can really say they know what they are talking about when it comes to MC?

I think I'll be a regular on here for the forseeable future, so thanks for welcoming me into your little "family". My mom is antitechnology so she doesn't have a computer so I'm kind of doing this all for her, but I know it means a lot to her to finally feel like she's not crazy and alone in this world because of this darn disease. looking forward to getting to know everyone and god bless!

[JLH]

I personally think there is better information here than at Mayo Clinic.

I would have your Mom test with EnteroLab to see if she has intolerances to gluten, casein (the protein in dairy) or soy.

Tex, Dr. Polly (pediatrician), Stanz, I and others have used diet to stop our D and other symptoms. Your Mom doesn't have to take Entocort.

[JLH]

There are other flours besides wheat flour. I just Googled and there are recipes for GF roux and gumbo.........

[Tanya Lynn]

Hello from a former Louisianian, although I grew up in the northern part
of LA, I love Cajun food. Fried shrimp Po'Boys with French bread, seafood gumbo,
shrimp etouffee', bread pudding (I miss it so), seafood lasagna, the list goes
on and on forever....

I was Dx with LC back in Dec. 09 and really didn't know much about the
disease until my second flareup two months ago. All my GI said was,
"You aren't going to die from it!!!" I wanted to slap him and say "You
sometimes feel like you want to die!" I bet he would have a different opinion
if he had this terrible disease...

I am so very grateful to everyone here, it has saved my life. I did the
Enterolab tests and found out that I'm highly sensitive to gluten, dairy, and
soy. I also discovered that I have double DQ1 combination,
usually connected with increased sensitivity, and more food intolerances.
So, I've been GF, DF, and SF for about 9 weeks and also taking Endocort.
I've only had a slight improvement but as I keep reading this is a long
process as it takes a long time for your gut to heal.

Would she be willing to learn how to use a computer so she could navigate through
this forum? First of all, I would suggest moving from Lafayette!!! HAHA

Funny, I am moving my Dad (he's 80)down to south Texas this weekend and they
have to go out of their way to stop off and eat at Prejuean's (I know that I didn't
spell that right) He will just rub it in when he gets here, "How incredible the gumbo is!!"

I have tried several attempts to making a GF roux and haven't found one yet.
I'm not going to give up though, I will keep trying..

I hope your Mom finds a way to get to this site.

Tanya

[Gloria]

Welcome Nickanjoe!!

Most of us who have taken Entocort (the steroid) have only resorted to taking it after removing gluten, casein(dairy) and soy from our diets first. We've taken it after we've seen no improvement in our symptoms in spite of the dietary changes. There are a few of us who have more food intolerances than most and need the extra support that the steroid gives while our gut is healing.

Those who have been able to achieve remission without it usually see great improvement in their symptoms after removing all gluten from their diet. Occasionally they also need to remove casein and/or soy, but they will see an improvement afterward. Using a steroid isn't necessary in these simpler cases, though most continue to use some type of medication such as Imodium, Pentasa, or Asacol when they have "flares."

It's possible that your mother will find relief by giving up gluten. If so, then she won't need Entocort. If giving up gluten doesn't make any difference, then she can try giving up casein (dairy) and lastly, soy. Enterolab tests for all three intolerances, making it easier to determine which foods are problematic.

I gave up all five of the foods for which Enterolabs showed a positive reaction, but I still didn't see any improvement in my symptoms, so I reluctantly went on Entocort. About four weeks after I began taking it, my diarrhea stopped and I was able to resume a normal life.

There are many, many websites which give alternative gluten-free recipes. We have quite a collection of them here, created by a professional chef who has MC. You can see them here: http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

Going gluten-free is an adjustment, but it's become much easier because so many food manufacturers are catering to those with celiac disease. Did you know, for example, that you can purchase gluten-free Betty Crocker cake mixes and brownie mixes? Also, Rice Chex and Corn Chex cereals are now gluten-free. Most food stores in my area have an area dedicated to gluten-free items.

Good luck with helping your mom. It would be great if she could get a computer and be shown how to access this website. If my husband can learn how to use a computer, I'm sure your mom can.

Gloria

[tex]

1. Is the GF diet pretty much a standard first step in tackling MC?

We have found that there are basically 3 ways to control this disease, (and get our lives back).

1. Medications, (the most effective one seems to be Entocort EC)

2. Diet, (most of us are sensitive to gluten and casein, (the primary protein in all dairy products), and about half of us are sensitive to soy. Some here are sensitive to other proteins, such as eggs, yeast, carrageenan, corn, etc. It may not be simple to figure out a recipe for a good gluten-free Roux, that will suit her, but I'll bet that she, (or someone on this board), will figure it out, with a bit of experimentation.

3. A combination of medications and diet. Some members seem to be unable to achieve remission without using both meds and diet, and this is the fastest way to control the symptoms. Some members use both for about a year, and they are then able to wean off the medication, and control their symptoms by diet alone.

Everyone is different in their response to medications and to diet, so everyone needs to fine tune their treatment program, so that it fits their situation and their lifestyle, and gives the results they want.

Here is some information on gluten-sensitivity that I copied from a post I wrote a while back:

According to Dr. Fine's research, (Dr. Fine is an MC researcher, and the founder of Enterolab - he has MC, himself):

From the online lecture:

http://www.enterolab.com/Lecture/Lecturenew/frame.htm

On slide number 29, with the heading:

Prevalence of Gluten Sensitivity in Various Groups

69% of people with MC are sensitive to gluten.

You will find that the percentage of people on this discussion board, who are gluten-sensitive, is much, much higher than that, presumably because many individuals who have drug-induced MC, are not gluten-sensitive, and therefore, all they have to do to resolve their symptoms, is to stop using the drug, and allow their gut to heal, and they are home free. In many cases, their symptoms will resolve immediately, upon discontinuing the use of the drug. IOW, they do not need a support board, because their symptoms are easy to resolve, and any GI doc in the world should be able to resolve their symptoms, (provided the GI doc knows anything at all about MC). Based on cumulative test results from Enterolab, and opinions based on personal trial and error determinations, I would guess that approximately 95 to 98% of the people who are members of this board, are sensitive to gluten.

Almost everyone who is sensitive to gluten, is also sensitive to dairy products, (but there are a few exceptions, maybe 5 to 10%). About half of us are sensitive to soy, and fewer still, are sensitive to eggs, yeast, corn, carragennan, tapioca, etc. Your genetic makeup determines your tendency to have more or fewer sensitivities. As Tanya Lynn mentioned, those with double DQ genes, virtually always have multiple sensitivities, and more difficulty in achieving remission, because they also tend to have a heightened degree of sensitivity.

2. My mom has this big aversion to taking steroids for some reason, but I see many of you have had good results from taking Entocort for at least a while to get things stabilized. Are there any major concerns with taking it in t he relatively short term?

As corticosteroids go, Entocort EC is relatively much safer. Due to encapsulation, the active ingredient, (budesonide), does not become available until the capsule reaches the lower third of the small intestine and the colon. Therefore, only about 10 to 15% of it is absorbed into the bloodstream, which makes it much less likely to cause the side effects that most corticosteroids are notorious for. Using it for a year or two seems to be relatively safe, and it can be used at reduced dosage rates, (as a maintenance treatment), indefinitely, with generally minimal risk of adverse consequences.

3. Does anyone know a good GI doc in the lafayette, baton rouge or new orleans areas who can really say they know what they are talking about when it comes to MC?

Unfortunately, GI docs who truly understand this disease, (and most importantly, who truly understand how to treat it), are scarce as hen's teeth in most parts of the world, including this country. The best that most of us can generally hope for, is to find a doctor who is willing to at least listen to us, and work with us, (and hopefully, to learn with us).

Please make sure that your mother understands this: The GI docs claim that MC is just a "nuisance disease, with a benign course". They are wrong, and most of them don't understand the disease well enough that they can even talk intelligently about it for more than a few minutes. Contrary to what the GI docs claim, MC is a very debilitating, and life-altering disease. There is no known cure, but the symptoms can certainly be controlled. It takes dedication, and perseverence, but if she is willing to take responsibility for her own health, she can get her life back. The diet is not easy, but after we follow it for a few weeks, it becomes easier and easier, and eventually, it becomes second nature. Gloria has already mentioned where you/she can find hundreds of recipes on this board, that are free of gluten, casein, and soy.

Welcome aboard, and please feel free to ask anything.

Tex (Wayne)

[Gabes-Apg]

a big aussie welcome to you and your mum

i wont lie and say that making the lifestyle changes for med free treatment is easy, it is hard work, mentally, emotionally, and physically.

as there is no magic pill that makes MC disapear, the hard work of making the diet changes is worth it, to get some level of normality in your life and not be a prisioner in your bathroom.

I was diagnosed Dec 09, used small amount of questran and loperamide to get control until the diet benefits kicked in (approx 1 month for the loperamide and approx 4 months for the questran)
Here i am 9 months later, pretty well using diet only with only minimal symptoms here and there. (most of which are either due to work stress or when my immunity is working over time)

I work full time, and even braved a trip to france for 3 weeks for work reasons (over 30 hour transit each way)
I live alone and dont have any family living nearby. The wonderful people on this website were amazing and gave me the support and guidence to tame the MC monkey.

you and your mum take your time with the info - after months of D and feeling poorly, all the info on this site can be a bit overwhelming

hope this helps

take care

[ant]

Dear Nickanjoe

Welcome to you and your mum. First, you are a saint to look after and care so much for her in this situation.

I can imagine it will be difficult for you to take in the information here and even more difficult to pass it on in digestible pieces to your mum - especially as most of the medical establishment has it so wrong and likely will not support you.

We are with you, ask the questions and I am sure your mum will, over time, get her life back, best ant

[starfire]

I meant to say exactly that but my mind has gone awol thanks Shirley! (I should go to bed its 2am here)

You said it just fine. I was just "reinforcing" what you said.

Love, Shirley