Newbie with Microscopic CC

Post by **tex** » Fri Jul 20, 2012 8:20 pm

Camie,

Here's a link to information on the elimination diet:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732

And you can find other information on various food sensitivities and diet here:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=6

You're most welcome, and good luck with developing your treatment program. Anytime you're not sure about something, please don't hesitate to ask -- a few timely questions can help to prevent unnecessary suffering, and none of us needs any unnecessary suffering.

Tex

carol1946 · Post by **carol1946** » Fri Jul 20, 2012 11:51 pm

I feel for you, Camie, I am also new to this site. I've been battling collagenous colitis for 17 years and all that I have learned is that the only constant in this disease is that there is no constant. I was diagnosed in 1997, following 2 years of the big D, when my doc performed a colonoscopy with biopsies. I was put on asacol which was changed to sulfasalazine after 3 weeks of no improvement. I've been hospitalized multiple times for dehydration and falls caused by that.....whatever you do - stay hydrated. A year and a half ago I developed a bowel obstruction due to the scaring from inflamation in my colon which required surgery to remove 7" of my colon and a partial ileumectomy. For me, one of the big constraints is lack of insurance and money. I have faith that this site is going to be a great souce of info for us. How did your return visit go with your gastrointerologist? Carol

Polly · Post by **Polly** » Sat Jul 21, 2012 8:44 am

Hi again, Camie,

I forgot to mention that yes, stress plays a major role. And some seem to be more sensitive to stress than others - I am one of those! I have always said my gut is my target organ. Since childhood, whenever I was stressed I would have to immediately run to the toilet and have diarrhea.

The two very best ways of managing stress without medication, IMHO, are daily vigorous exercise and meditation. Some of us here have had success with these 2 methods. If you are interested in some references for meditation (or mind/body healing in general) there are folks here who would be happy to provide references/advice.

My deepest sympathy on the passing of your mom. Within the past 3 years, both my mother and brother passed, and I did experience flares both times. Such a difficult time for you, I know.

One more thought (to emphasize what was said above).......since most here are dairy-sensitive as well as gluten-sensitive, you might heal faster if you also eliminate full dairy (all butter, milk, ice cream, yogurt, cheeses, etc). I know it's daunting, but I really believe you will see results more quickly.

Hugs,

Polly

Camie · Post by **Camie** » Sat Jul 21, 2012 9:44 pm

Again,thank you for your support and kind words.
Too much is going on right now for me to focus on any one thing at the moment

Just a thought, I remember driving home from a class with the resolve to seek medical advice. Re:not everyone is held hostage by their bowels I figured I would seek treatment. I thought I had Cdiff... from the nursing home.... or maybe guiardia as I raise cockatiels. I was hoping for some quick fix.

I just wanted to get up in the morning and be off into the world. Just like normal people do. I thought I would be fixed by now.
Sigh, not fixed. And I am learning there is no fix.

I am not one to meditate as I can barely sit still for more than a few minutes at a time.

This was a rant/vent. I am tired. I am sad. I am not a newbie to having a plate that is too full.

This is just a new world for me............I did my time in nursing school for patients with long term chronic iillnesses. That patient is me

Lesley · Post by **Lesley** » Sun Jul 22, 2012 12:03 am

Camie,
I so understand!
I am an OT, hurt on the job nearly 10 years ago, and then got sick after that, but only developed D in the past 2 or so, and dx'd last year. I lost my mother and my closes person in the world during this time, and some other very close friends, so these years had their stresses for me.
I also went broke because I got ill and lost my medical insurance, and racked up horrible bills. I had to move from Seattle to LA to live with my son (another long, sad story, although we are super close) so stresses built up.

I started (but never did much with) a website called "The Other Side of the Bed" after I came out of the hospital in 2003 because for me, just like for you, being the patient (although I had my fill of illnesses over my life) rather than the caregiver was not where I wanted to be. I was also sad for a long time, and angry. However, things DO get better. They also get worse again, and you have to climb out of the - dare I say it - s**t once again. Each time it is a little easier because you know what you are dealing with and how to overcome it.

No, there is no fix, but it does get better.

JFR · Post by **JFR** » Sun Jul 22, 2012 8:01 am

Camie wrote:
I am not one to meditate as I can barely sit still for more than a few minutes at a time.

Carnie,

I understand that you are overwhelmed right now and taking on anything new seems impossible, so maybe you can read what I say and store it away for some time later when things begin to calm down for you. You do not have to be able to sit still to be able to meditate. In fact if you cannot sit still for more than a few minutes meditation might be just what you need. Learning to meditate is about learning to sit still and learning to become less reactive. When I first started meditating I could only manage about 5 minutes before it felt like too much and I had to get up and walk around. I tried not to judge my meditation sessions as successes or failures. Slowly but surely I increased the time I could spend meditating and then I began to understand that the non-reactive mindfulness of meditation could be applied to everyday life so that I can be less reactive in my day to day life than I was previously. This has been a very slow learning process for me but one that I have found very helpful. I am still learning. You may never return to "normal" but you can get better. There may not be any quick fix but it is possible to get significantly better and to regain your life. This may sound impossible now but things can change.

Hope today is a better day than yesterday.

Jean

Camie · Post by **Camie** » Sun Jul 22, 2012 9:39 pm

I am reading and rereading every post. And as always I am grateful for the reponses. And again too much all at one time. I step back and tell myself one day at a time. I pray alot so I wonder if that counts as meditation.

GI doc appt in the am. I really hope he prescribes an anti inflammatory med...as my guts are just tired. I know med wise less is better.

Advice on questions to the GI doc and meds?

Thanks for your support.

mzh · Post by **mzh** » Tue Jul 24, 2012 6:48 pm

Polly, that was a great summary. Thanks for making it so simple. And Carnie, welcome to the clan. You'll find a lot of help and info here. Jump in!

Leah · Post by **Leah** » Tue Jul 24, 2012 8:37 pm

Camie, Entocort ( budesonide) seems to be the drug that most of us ( who take a prescription) do best with. The doc usually will start you on 9 mg. a day ( 3 pills). If it is good for you, you should get some relief pretty quickly. As you change your diet and maybe as the stress in your life goes down, so will your dose. After 5 months, I am down to one pill every other day. My GI is very impressed. He had no clue when it came to the food/symptom connection. Still doesn't.

Anyway, good luck and keep us posted

Leah

mzh · Post by **mzh** » Wed Jul 25, 2012 6:48 am

Camie wrote:GI doc appt in the am. I really hope he prescribes an anti inflammatory med...as my guts are just tired. I know med wise less is better.

Advice on questions to the GI doc and meds?

Thanks for your support.

Camie, if you mean an NSAID, don't do it. It can make the MC much worse. Entocort is really the best way to start. If the doc suggests 8 Pepto Bismols a day, I suggest you don't do that either; it's pretty old-fashioned. That was the first thing that was tried on me and it did nothing but give me black stools and tinnitus.

Another choice might be sulfasalizine and a variety of meds in that category; they didn't work for me b/c I'm sensitive to salicylates (aspirin-related stuff) but they might work for you. But again, Entocort is the best to start off with. It's very expensive so I hope you have good insurance!

Camie · Post by **Camie** » Thu Jul 26, 2012 8:23 pm

An update!

I saw the GI doc on Monday. I was given a Rx for Endocort.Hoping for the best!

Leah · Post by **Leah** » Thu Jul 26, 2012 8:26 pm

Let us know how it goes! Hope you have improvement soon :)

Leah

mzh · Post by **mzh** » Thu Jul 26, 2012 8:40 pm

Yay Camie! Entocort works wonders for most people!