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Hey everyone! Well my name is Kelly and I'm 23, I recently got diagnosed with mc and I can stay away from the potty. I have been on different diets and none of them seem to do the trick. My GI Dr. Put me on cholestyramine, but it is horrible tasting and it doesn't seem to
work. I have no family for support and I'm currently working but it is so hard, because I run to the potty every 30 mins or so. I have no insurance, because I have been on medical leave. My boss and coworks don't think there is anything wrong with me. I'm so lost and very confused!!! Someone please help! I need some advice!!!!!
Kelly welcome!
You have come to the right place to get advice and support. Everyone is scared after months and maybe years of constant potty visiting, feeling exhausted, in pain, unable to concentrate. Finally you get a diagnosis and the doctor can't help you.
Beyond the diagnosis there is very little a doctor does for you, except if you need a prescription. If you read on this forum (which I suggest you do) you will see that no one has much time for doctors.
Kelly, you need to read posts on this forum and you will get a wealth of information. People will probably jump in and explain to you the connection between diet and this disease, and what you can do to get your life under control.
Now you have a diagnosis you can tell your boss and coworkers that "even" your doctor knows there is something wrong, although he doesn't know what to do about it. But the people here do know, and whether you are one of the lucky ones who does not need to do very much to control this disease, or one of the ones who has to cut out a bunch of different foods you WILL get there.
So relax because stress makes this worse. Just read!
Welcome to Potty People. I can understand completely that you are scared. I was very scared until I started to find out how to deal with MC from all the kind and knowledgeable people here. I did not know what was happening to me and the doctors did not really tell me.
I wonder which diets you have been on? Most of use have to stay 100% off all gluten and dairy, and for at least half soy is also off limits (some of us, including me, have to stay off other foods such as eggs and tomato). It takes a long time for diet to work and you will have to figure out all the foods you are intolerant to. Because results are not instant many doctors say the diet is not a treatment for MC. But, that is flat wrong and mounting scientific evidence proves diet is a key treatment over the long term.
I do not know what cholestyramine is (I am sure others will comment on it). But the best medicines for MC if you can tolerate them are Pepto Bismol (for a few weeks - but it will usually not cure MC) or Entocort.
This is a place were you will find friends and understanding, as well as very useful information on treatment and tests. Keep reading and ask ANY questions you want.
Again welcome you have found the best place to support you.
Thank you so much! I have found out ALOT just by reading so far. I have now found out why my joints hurt. I have ask my drs for years and they just blew me off! It's hard, I ask my dr questions and he had told me he didn't know much about it. So hopefully I can find out here.. Again thank you!!!
Welcome to our internet family. As Ant suggested, Entocort is probably the most effective drug for treating MC, but without insurance, it will probably be out of reach, because it's a ridiculously overpriced drug, in this country, (unless you order a generic form of it from India. If you want to try that, it costs, (if I recall correctly), $121.50 plus shipping), for a 3 month supply. In this country, that amount of Entocort would cost thousands of dollars. If you want to try that drug, just ask, and we can give you a link to an internet pharmacy where you can order it for that price, without a prescription.
Otherwise, as Lesley and Ant suggested, diet changes are the only way that we have found to stop the inflammation that causes the disease. Many of us here, have been in remission for years, by diet changes alone, but most GI docs are totally lost, and will argue that diet has nothing to do with MC. That's like arguing that breathing polluted air has nothing to do with asthma, hay fever, black lung disease, chronic obstructive pulmonary disease, or any other lung or breathing problems. Many other members use a combination of a medication and diet changes to control their symptoms, because by using a medication, the symptoms can be controlled sooner, to give the diet time to work.
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.
Hi Kelly and welcome to the group. As mentioned the treatments include diet and medications. Early on this can seem scary, but is manageable with a few dietary changes. To gain the quickest relief I would eliminate gluten, soy and dairy for a few weeks at least to let things settle down. Later you can test these ingredients to see which ones are bothering you. The goal right now should be to gain relief as soon as you can and diet with the cholestyramine will be the quickest path with the options you have available at the moment.
Addtioanlly avoid citrus juices and any raw fruits or vegetables as right now those will be too harsh to your GI system and aggravate the D.
A far as the cholestyramine, mix it in a juice that you like. I found that well chilled apple juice mixes quite well with the cholestyramine and actually does not taste too bad at all. I did try it with water initially and your right, that does not taste good.
I agree- the cholestyramine is like drinking sand. The only way my 16 year old can drink it is with Sunny D. Although Joe is right, you may want to try apple juice and avoid the citrus even though Sunny D has very little juice (wouldn't be my first option, but my son actually gags on and has thrown up, so Sunny D is it). I didn't find it particularly helpful with my D either. I'd try the entocort, when you are able, along with diet. Remember to be patient. I've been limiting my diet for about 4 months now and it's a slow process of trial and error. The information you'll find here is invaluable! I cringe to think of where I'd be right now without the many helpful and understanding people on this forum. Best wishes for your improved health.
I am so glad you found this site, Kelly. Just want to welcome you and please don't be afraid to ask questions about ANYTHING. Chances are we've heard it before whatever it is. HaHa
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
I, like everyone else here, do understand how scary it can be to be diagnosed with MC but at the same time not be given the right direction with diet changes.
The 100% gluten-free diet, along with dairy free and soy free are steps you can take to start healing naturally. I have stayed on the diet for several months now, and am improving a lot. I also was in the bathroom about every 30 minutes! Now I go about 4 to 5 times a day. I believe in time that will also improve. I stay with foods in their natural state (unprocessed).
I have been learning a lot from reading and asking questions here.
It was such a relief when I found this forum.
Again - WELCOME.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
We can all understand your problems and frustration. The medical community just wants to give us a script and hope we don't come back. At least it seems that way to me. I highly suggest diet - GF and DF - to start and then work from there. We are definitely here to support you.
Maggie - a long time resident.
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
Hi Kelly.
We all know how you feel and it seems a bit overwhelming at first, but as you take one step at a time, you will see that you can get a grip on this thing. I was only diagnosed in February ( symptoms started in Dec), and already am so much better. I have to say though that if you can afford it, Entocort (generic- budesonide) can be a miracle. After I started 9mg. a day, my symptoms started getting better within a couple of days! I got rid of Dairy right away and that helped more. Then I omitted Gluten. Now, I feel almost normal and am SLOWLY trying to step down the Entocort. It's a challenge, but once you get a good idea of the things you CAN eat, you learn to work it out.
If you have the means, it's a good idea to get tested for food intolerances at Enterolab. Look them up on line when you get the chance. I am waiting for my results. I am a little scared that there will be more that I can't eat, but it will be good to know for sure. The one thing about the drug, is that it works so well that you can't tell what foods are bad for you. I figure that the drugs are calming everything down to give me time to heal. Then if I omit what I am intolerant to, I take away the "inflammation" creators. Once that is all done, I'm hoping to slowly get off of Entocort and maybe down the road, be able to add some "irritants" back in ( like salad, beans, fruit...etc.).
This is a great forum and I've learned so much here. I spent hours and hours reading everything and everyone's comments. Everyone is different, but we are all in the same boat and nobody understands what you are going through better. Good luck and please let us know of your progress,
Leah
Welcome to the site Kelly, you are half way there - you have found us. It took me a couple years to get my final diagnosis and i have been two years fine tuning my diet. I'm by no means a poster child for this disease. Like an alcoholic I often indulge in foods I shouldn't & pay for it later. Yet, my life has become 70% better and that is great progress. You will progress too. Chase away your fears because life is about to get better for you.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
