Newbie Alert!

[kimtg68]

Newbie alert! Yes I'm new to this forum and new to the world of MC. Not that I just 'got it'. I've probably had it for years and reasoned my symptoms towards other things. Nearly ten years ago I thought I had become lactose intollerant. So I cut/limited dairy and it helped. Two years ago started having upper right back pain. Long story short...they removed my gallbladder. Pain didn't go away but I was told I would have to live with it and that it was probably scar tissue from the gallbladder surgery. But it seemed I could eat dairy again. WOOHOO! Then 9 months ago the dam broke. Everything went crazy. Couldn't stop running (I mean RUNNING) to the bathroom. Consistancy of my D was all over the place too. Sandy, floating mucus, pencil and occassionally C. Appetite GONE (and I'm a woman that LOVES her food). I lost 20 lbs. in a month. Felt full only after a few bites and my tummy would swell like I was pregnant. Hickups frequently. I even started getting kidney infections that just wouldn't go away more than a couple months at a time. I went to six different docs, 3 of those Gastroenterologists. How discouraging to basically be brushed off or told "Nothing explains all THOSE symptoms". The pain was never in just one spot. It was all over the abdominal area and even in my back. My joints have made a new appearance as well but I chaulked that up to aging. I've had two colonoscopy's. But the last one brought results of Helicobacter Pylori and Microscopic Colitis. The doc only told me about the H. Pylori and put me on the mega dose pack. 2000 mg antibiotics daily and previcid. Took two weeks of that before my D calmed down. Two weeks after completing those meds (total of 1 month on meds) my pain came back two-fold. I went back to doc and he decided to share with me that I also had MC but he didn't feel the need to treat that without symptoms present......HUH? Was he kidding? I don't think doctors listen very well!!! I'd had screaming symptoms that started me on this tour of docs to find an answer. So he put me on Doxicycline for 2 weeks. That really seemed to work for the D. I've been off that for 2 weeks now. Only had about 2 days of D after finishing the meds (still mucusy). I cut greasy and fatty foods from my diet, limit my dairy and watch to figure out what else affects me. Boxed Chicken Fried Rice was my newest discovery. Red meats are usually pretty tough also. I stopped my intake of alcohol completely. That's a blessing in itself. With a very stressful and demanding job and 4 teenage boys I was relying a bit much on the alcohol as a stress reliever anyway. So this is where I am now; I'm going in today for blood test to see if the H. Pylori is gone. I still have bloating and cramping and bizzare joint and muscle pains along with abdominal and back pain on and off. The rosasia rash on my face is not gone but much lighter than it was. The rashing on my arms is almost gone completely but my skin overall is still prone to red blotches often. I'm reading and following this forum and sharing, smiling and nodding frequently to other posts you all have shared but most of all learning and I thank all of you for having the courage to share such an intimate and delicate subject openly on this forum. It's very useful and appreciated.

[grannyh]

Welcome!

Had all but forgotten I was tested for h pylori way back when... was positive and was treated for it too.

There is lots of help here and if you have been reading.. you know that there are about as many ways back to life without diapers as there are people.. that is what makes colitis so hard to deal with.

Load up on patience.. you have a journey ahead of you.. but there is lots of hope and experience here.
grannyh

[JLH]

Kim, I'm so glad you found us. Read as much as you can here. I know it is overwhelming but, as Tex says, you can get your life back.

Sorry you had such bad experiences with your doctors, but don't feel alone on that.

[tex]

Hi Kim,

Welcome to our internet family. We have a number of members whose GI docs kind of "forgot" to mention to them that they had MC. That's always a sign that they know virtually nothing about the disease. Even so, I can't help but wonder why they don't feel obligated to reveal to the patient that they have this disease. Why do they think that their patients pay them to run those expensive and invasive tests - just for the fun of it?

Again, welcome aboard, and please feel free to ask any questions that come to mind,

Tex (Wayne)

[Delta]

Hi Kim,
Fortunate for you that you found this site, myself along with countless others have learned to manage this disease through what we've found here, diet, medications, support and lots of friendly people. I shared many of your symptoms, I had the back pain just below the right shoulder blade, sometimes it was in front below the ribs. More than one doctor suggested to have my gb removed as well. I wish you well and I'm sure you'll find your way back to good health and learn alot along the way.

[Gabes-Apg]

g'day Kim



greetings from Australia


I am giggling at the use of doxycicline - i used to take this as a malaria protector when i was travelling to papua New guinea for work. it is a killer on your liver. a couple of years ago when i had mystery issues with my adrenals this is what the immunulogist prescribed for me. it is the drug they give you when there is not infection but they dont know what it is! when it didnt work they just shrugged their shoulders and said come back in 3 months.

having the diagnosis is half the battle, finding out what works best for you is the remainder. There is no instant quick fix (damn it!)
but with patience good health and living life again is attainable

there are lots of amazing wonderful people in this family.



as you will see by some of the posts we share our good days and our bad days, you can ask anything! sure enough at least one other person has experienced the same at some stage. And we have great nick names for symptoms.

and I thank all of you for having the courage to share such an intimate and delicate subject openly on this forum

Having MC, and coping with the demon takes the courage..... sharing the info is our sanity!

take care

[Joefnh]

Welcome to the group Kim. I can certainly appreciate the long time to diagnosis that you experienced but am glad that you are getting some treatment now. Wow - 4 teenage boys is a full time job and a half, I can imagine that certainly being more than a bit stressful.

The folks on this site have been great and are willing to share their experiences to help each other.

I am still fairly new to the group but in the 2 months of coming to this site I have had the privilege of meeting some of the finest people that I have ever met. We are certainly fortunate to those who sponsor this site. Please keep us up to date on your progress


Welcome to the group

--Joe

[ant]

Welcome from Hong Kong.

So sorry you have had such a difficult time getting to diagnosis. I take my hat off to you dealing with teenagers, a job and all the issues around MC. Your reading has probably already led you to the key points about MC, especially diet, medicine, enterolabs checking of food intolerances, genes etc. If not already done so, have your vitamin and mineral levels checked because you may be low, especially on vits D and B.

Getting back to remission is usually a long road and there will be setbacks, but, as has been said, you can get your life back.

All the best, Ant

[kimtg68]

Thank you everyone for your welcomes and support. I'm SO happy to have found this forum. Until I found this place I was starting to think there was something wrong in my head. The internet just doesn't mention some of the bizarre symptoms and surely it's not linked to MC according to the internet. Perhaps I've just looked in the wrong places. At any rate, I'm thrilled to have found this place and I'm putting on my "I Will Do This" hat and getting ready for this journey.

Kim

[jcfiset]

This morning while doing a Search for information on Asacol I discovered this web site
and am grateful to know there are others who understand the reality of living with
micro colitis. Also, this appears to be a comprehensive source of information.

I was diagnosed over a decade ago and have never found a way to a semblance of
normalcy even though for the most part I've eliminated the foods that exacerbate
this condition. Recently I've begun to dread eating knowing the price that will have
to be paid, and that I have to be close to a bathroom.

I'm hopeful I can learn more and as someone said on a related post, "get my life
back."

Best,

Joan

[grannyh]

Some people got relief with Asacol.. made me sick as a dog. Glad the doctor gave me samples.. :) As I said earlier..there are almost as many methods of getting your life back as there are people here..
grannyh

[JLH]

Joan, we're glad you found us. Tex is the one who says you can get your life back. For the most part, I have, and without drugs other than Welchol at first.

[jcfiset]

Thanks for your responses. I appreciate the affirming spirit of this group
as well as the sense of humor which can be hard to come by with this
affliction.

I tried Asacol, and it helped. Am sorry I stopped as someone said that can
make it impossible to get the same results. But I'm going to try.

Also, is caffeine in moderation problematic for micro colitis?

Joan

[Stanz]

Hi Joan,

Welcome to the family, completely understand your dread/fear of eating, there is much to learn here, you CAN kick this, I did w/o drugs.

Connie

[tex]

Hi Joan,

Welcome to our internet family. To answer your question about caffeine, contrary to the position held by the major medical institution sites, most of us have found that caffeine is not a problem for us. IOW, if it bothered us before we developed MC, then it still affects us the same way, but if it didn't cause any problems before we had this disease, then it doesn't seem to cause any additional issues now.

Since you're already aware that diet can be very important with MC, (again, contrary to the opinions of most GI departments at the major medical institutions), are you aware that most of us are sensitive to casein, (the primary protein in all dairy products), and roughly half of us are sensitive to soy, and all it's derivatives, and related legumes, (such as beans, peas, etc.)?

Again, welcome aboard, and please feel free to ask anything that comes to mind.

Tex (Wayne)