I want my life back...............

[Karen1129]

After losing my job of 30 years in 2009, then having to sell my home in Central Texas and moving to East Texas to help take care of my elderly parents, in 2010, I devloped severe
diarrheah. At that time, it was only in the mornings. it would wake me up around 6:00 AM,
and kept me in the bathroom for at least 3 hours. Planning anything for mornings became impossible. I started losing weight, which i don't need to, and after losing 25 lbs. I went to the
doctor. Unable to work , I had to take early SS, so no health insurance because it was not affordable.

The doctor thought, it could be stress because she knew my situation, being primary caregiver of elderly parents. She did a blood work up, fecal samples, etc. checking for Celiac and anything else. Nothing. She said you need a colonoscophy. Well, with no insurance, that wasn't an option financially right then. No anit-diarrheal medication worked. Then, the episodes increased from just mornings to afternoon and late into the nights. I finally saved up enough money to get the colonoscopy, and was diagnosed with Collagenous Colitis. I was like, Huh? what the hell is that and how did I get it? Seems like there isn't that much known about this condition,, or whatever you want to call it. I call it hell.

The doctor gave me 2 months samples of Asacol, put me on prednisone, Imodium 4 times a day, and....... nothing. I went back, and he increased my prednisone to 40 mg a day for 3 weeks, and told me to reduce it to 20 mg afterwards for 2 weeks, then down to 10 mg.
I got a little better on the 40 mg, but as soon as I dropped down to 20, it all came back.
I've been given prescription anti-diarrhea meds, and they don't work.
I don't eat that much anymore, because well, you just don't feel like it. doesn't seem to matter if you eat or not, you have explosive diarrhea anyway. forget about a good nights sleep because I have sleep incontinence.

I go for another follow-up Monday but I don't feel hopeful in learning anything new. On the last visit, he said, CC is very resistant to treatment, and it's like my colon is wrapped in Saran wrap and anything that goes in, just goes right through, like you don't even have a colon. Your colon does not absorb anything.

I can't travel anymore. Go out to eat. Go to the movies. Work. And, from what I've read about CC, I might be looking at dealing with this the rest of my life. Not how i had hoped to
live my golden years. LOL

I'm trying real hard to keep my chin up, but this week has been mostly big , all day long
flare-ups. My doctor told me diet has nothing to do with this disorder.

So, I don't know what to do at this point. I'm not a person that gets depressed. Always look for what's good in my life. At least I don't have cancer. But, I miss my old life. I miss travel. I miss work. Mostly, I'm just tired.

K

[Deb]

Karen, I am sorry about what you have been going through. Many (most?) of us have experienced a lot of the same struggles. I'm sure you will hear from many others here. You've found a great resource here of people who can help.

My doctor told me diet has nothing to do with this disorder.

Your doctor is wrong!

[tex]

So, I don't know what to do at this point. I'm not a person that gets depressed. Always look for what's good in my life. At least I don't have cancer. But, I miss my old life. I miss travel. I miss work. Mostly, I'm just tired.

Hi Karen,

Welcome to the board. I'm sorry to hear of your problems. As Deb pointed out, most of us have had to deal with the same or similar issues. I'm a little short on time this morning, so I'll cut to the chase -- if you want to get your life back you'll have to stop listening to your current GI doc and either find one who actually knows a little about treating this disease, or do like most of us here and take charge of your own treatment, and your own health. Life is too valuable to throw away because of an incompetent specialist.

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

Tex

P. S. Since this is obviously not a success story, I'm moving it to the Main Message Board.

[marihabs]

Karen...Welcome!!

You have come to the right place... there is so much knowledge, sharing, compassion, and understanding here. I'm pretty new to all this myself, and everyone reacts differently, but for WIW asacol made my symptoms worse.
I've spent a lot of time just reading, trying to absorb all the information available. Dietary changes DO make a difference! My GI (ex) said the same thing about diet not having anything to do with it all. Just eating a simple menu of chicken, beef, rice, potatoes, bananas, eggs, cooked veggies and applesauce helped things settle down immensely for me.
I'm sorry for all you are going through...but glad you found us.

Mary

[Karen1129]

Sorry for posting that in the wrong place. I'm kind of sleep deprived here. lol

I have decided to , and made an appointment with another Gastro for a different opinion.

Hoping I will get better advice.

[kitty16]

Hi Karen,


I have often said those exact words I want my life back. This is a strange disease and yes stress can effect it. I also had been caring for my elderly mom, so I understand just what you are going through in that respect.


I also got worse on asacol. As all on this board will tell you eating will make a difference. It's just a matter of figuring out what is a trigger food. For me anything that has the word "diet" in it means some form of a sugar substitute which immediately gives me D. I'm now in the process of seeing if I'm lactose intolerant.

Hang in there, there is no fast fix but read what others have written on this board. They are well informed and compensate group.

Hugs,

K

[Karen1129]

I'm curious as to how many of you folks have taken prednisone and if it helped. I don't like
taking steroids in any form, as I have had some side effects from it that just adds to my discomfort.
Headaches, mood swings, horrible night sweats, etc. I just can't believe prednisone is good for you long
term. Plus, it doesn't seem to be helping THAT much anyway !

I mostly eat just soup and a potato for meals. I did get some whey power to make protein shakes as
i thought I needed some protein. I wonder if the whey is causing my condition to worsen.

I'm willing to try anything because at this point, 20 trips to the toilet, and I'm sure most of you know
you don't get much warning and soil yourself before you get there, is wearing me down.

I still can't understand why i didn't gain weight on the prednisone. everyone said I would.
I'm going to wean myself off it anyway.

I know with this disease, you are just flat afraid to eat anything, especially if you have to leave the house.

At this point, i have maybe 4 hours a day without D.

[patc73]

Karen, we all feel your pain, because we've been through the same thing. Diet will definitely help your symptoms, although we're all a bit different in our intolerances. Generally, with CC you have to avoid all gluten and dairy, except maybe butter. The whey is probably making you worse. Stick to non-processed meats, rice, well-cooked veggies and fruits, and maybe potatoes for a bit and see if you improve. Then add one food at a time to see if you react to it. A good probiotic might help restore the good bacteria in your intestines, and could help. I had to quit my job, too, and now am trying to convince the social security administration that CC is a disability (I'm 56)...how depressing. (Especially when doctors don't know how to treat us!)

[Deanna in CO]

Karen,

I'm so sorry you're having such a rough time. Most of us on this forum have been where you are - some worse, some not quite as bad, but most very similar. And our tagline, "You CAN get your life back," is true, though you'll find most of the active participants right now are still working through the process.

That said, getting your life back may not be easy. You are living proof of the truth about microscopic colitis - that while drugs can sometimes help a bit, temporarily, the results are not permanent and the disease tends to continue to progress. I've done quite a hit of research on the Internet and in the library, and this is the only place I've seen evidence that people with MC can get into remission and stay there (with or without drugs). It's a chronic disease, so there's no cure; many of us on this board believe that something (antibiotics, NSAIDS, PPI's, severe stress, etc.) triggers the gene that causes it, and once it's triggered, it's there to stay.

So what does it take to get into remission? Most of us have found a strict dietary approach is the only real answer. Almost all of us are sensitive to gluten and dairy, and we don't really get better until we remove every trace of both from our diet. Gluten is particularly bad, because the damage it causes lasts a long time - which means it takes a long time (6-12 months or even longer) to even know for sure if eliminating it has helped. About half of us are also very sensitive to soy, some are to eggs, and others to various other foods. Start where others above have mentioned, and slowly add one food at a time so you can tell what's going on. And read here - a lot.

You WILL get your life back!

Deanna

[MBombardier]

Hi Karen!

I have CC too, and I was like you--blindsided by the diagnosis when I expected a clean bill of health. I had no idea the GI doc took biopsies, or what they were for.

I suspect mine started from stress as well. My husband, who has mental issues, took a serious nose dive in 2007 and we were separated for nine months. I had to deal with his being gone halfway across the country and not knowing if he'd ever come back along with four children at home, serious financial issues, etc., etc. I had post-traumatic stress disorder.

I was dx in Sept. 2010, and went on the internet to see what I could find out about this mysterious disease. I ran across Dr. Kenneth Fine's site, and based on what he said I went gluten-free in late September. Then I found this board, and the last 20 months have been a journey to renewed health.

It doesn't really matter what caused the disease--what will start healing the damage is going gluten-free because the stress, medication, whatever started the disease process is not what is important. What is important is that it triggered the gut to start reacting to gluten and to accrue damage. That's a very simplistic explanation.

Everyone's journey is different. I have been one who has been able to control my symptoms without using medicine, although I did take two weeks of Asacol in the beginning.

My suggestion is something that helps most of us, whether we are on medication or not, to get some relief. That is a very bland diet--broth, chicken or turkey, with very well-cooked carrots and maybe some rice or potato. Some can handle some applesauce. If you eat this every time you are hungry, your gut should settle down in two or three weeks, maybe sooner. With this disease you get over thinking about different foods for different meals, fiber, etc.

I would also suggest that you eliminate the whey for now. Most of us who are intolerant of gluten are intolerant of dairy, too.

As an older woman (as I am), things will take a little longer to heal. There are lots of women in their 50's, 60's, and 70's on here, so you aren't alone, that's for sure.

I hope your new GI knows his stuff, but frankly, the experience of almost all of us on the board is that the knowledge of GI's lags way behind and is crippled by their God complex and distrust of patients who say, "I was reading on the internet..."

Welcome again to our little internet family, Karen! Look around the board, and especially read the stuff for newbies. Feel free to ask anything, and to vent, rant, cry, whatever. We've all been there, and we have big shoulders.

[Karen1129]

Thanks for all the responses !

I think my first step is to remove gluten from my diet.
Thinking about it, I'm not even sure I have that much gluten in my diet now,
but like many have said here, it's a long process getting the stuff out of your system
I guess.

i will miss my diary products though. ;0

I will try anything to get this disease under control.

And, CC should definitely qualify you for SS disability. I am now working with an attorney, that
specializes in that to see if we can make it happen. At this point, I don't see how i could possibly
work... yet I want to soooo bad. I miss working and the interaction. And, who knows, if I can get
this under control, I can always go back to work and get off disability (if I get it).

You don't socialize, or invite folks over when you are going through this.
I've found if I tried to just explain it in the least possible icky way I can, they don't get it.
Or, are uncomfortable with the whole subject.
:) So.... I tend to stay in .

To add a little humor, I sure go through a lot of candles. :) Keep them puppies burning in case someone
drops by. ;0

[maestraz]

Karen,
I got sick the very first winter after my retirement from teaching. If I had gotten sick before that, I would have been out of work for months, as there's no free time for the bathroom when you teach.

I remember how hopeless I felt, thinking, (literally, haha), oh S---, is this what my retirement is going to be? I was frantic. But, luckily, I found this group, and the advice here has helped me immensely.

I have been more fortunate than others, in that my GI doc is on board with the diet connection.

I will be following the SS/disability issue with interest. I will not be able to collect SS because teachers in my state do not pay into SS, due to having a state pension plan, and federal laws severely penalize us with SS survivor benefits. But, my husband will get SS. I'm wondering, as his spouse/ beneficiary, whether I would qualify to claim LC as a disability? I will get Medicare at age 65 because of a (too long to explain) technicality in state statute that had me paying into it for the last 10 years of my career due to a teacing district change.

Karen, I seriously miss cheese, I won't lie, and the Daiya/vegan cheeses are IMO totally disgusting and not worth eating. But I have come to accept and like almond and rice milks. I was a bit excited to find almond-based yogurt at Whole Foods recently.

I LOL'd at your comment about the candles.

All I can say is, where I am today is light years better than where I was a year ago, since being GF/ DF/mostly SF.

[Karen1129]

Karen,
I got sick the very first winter after my retirement from teaching. If I had gotten sick before that, I would have been out of work for months, as there's no free time for the bathroom when you teach.

I remember how hopeless I felt, thinking, (literally, haha), oh S---, is this what my retirement is going to be? I was frantic. But, luckily, I found this group, and the advice here has helped me immensely.

I have been more fortunate than others, in that my GI doc is on board with the diet connection.

I will be following the SS/disability issue with interest. I will not be able to collect SS because teachers in my state do not pay into SS, due to having a state pension plan, and federal laws severely penalize us with SS survivor benefits. But, my husband will get SS. I'm wondering, as his spouse/ beneficiary, whether I would qualify to claim LC as a disability? I will get Medicare at age 65 because of a (too long to explain) technicality in state statute that had me paying into it for the last 10 years of my career due to a teacing district change.

Karen, I seriously miss cheese, I won't lie, and the Daiya/vegan cheeses are IMO totally disgusting and not worth eating. But I have come to accept and like almond and rice milks. I was a bit excited to find almond-based yogurt at Whole Foods recently.

I LOL'd at your comment about the candles.

All I can say is, where I am today is light years better than where I was a year ago, since being GF/ DF/mostly SF.

I did some substitute teaching after I lost my job, and yeah, I had to stop doing that. You just don't up and run out on a room full of kids. Oy !

Cheese will be the hardest for me. I'm a cheese gal, but, I'll get use to it.... I hope. lol

Good to know you are doing so much better in a year. Seems like a long wait for me, but heck,
I've been dealing with this since 2010 .... so..... from what I've read here, I do see a light at
end of the tunnel.

Oh, to be able to travel again !
That will be my reason and encouragement to stick to a diet.

[tnelson]

Welcome to the board! There are a lot of people here who are so supportive and willing to help. I'm one of the ones still working through the process, like Marliss said. There is a lot to process and a lot to learn. My GI doctor just admitted right off after the diagnosis that he didn't know anything about lymphocytic colitis, so he saved me the trouble of finding out he had nothing to offer. This is the place to go for help.

--T

[carolm]

HI Karen, Welcome.
I have LC rather than CC but as you can see others are very knowledgeable. I couldn't have said it better than Marliss did. I started on Prednisone from my GP but as soon as I saw the GI doc they said they wanted me off of that and prescribed Entocort (budesonide). This is a delayed release steroid that opens up in your intestinal tract and applies the med right where it's needed. The side effects are much less than Prednisone, really minimal and it can be used for several months. It is pricey but others here have been able to order it from Canada and India at a fraction of the US prices.
In a flare go to very easy to digest foods-- gluten free chicken soup, rice or potato, low fat meats, everything well cooked, etc. Very little fiber, no dairy, no caffeine-- stay with things that will allow your gut to rest more than usual.

I'm sorry you are dealing with this but glad you found us.

take care,
Carol