The concerns and trials of one girl with microscopic colitis

[hollyweb]

Just found this too ... PRICELESS!!!! Thanks so very much for that laughter!! GAC, I'm right there with you!! Thank you everyone for sharing and caring and I wish EVERYONE much more laughter, healing and sharing!!

~ Holly

[gac]

Holly, I swear if we didn't laugh at ourselves and with each other, what a mess we would be.

[Crazypolkadots08]

So I'm 26 years old and I was just told yesterday I have lymphocytic colitis, a gluten allergy and low IgA. I normally don't cook due to my schedule and honestly I just hate cooking. I normally eat frozen food at work and make snacks at home (mostly bread related). I'm getting a lot of crap from everyone saying it's not a big deal, and oh you can cheat once in a while but I find myself really upset. I used to eat out at restaurants and now I feel like I have no options. I have a family dinner in a restaurant in a couple of days so I called them to see if they have gluten free options and their like "yeah a couple " so now I'm embarrassed when I eat out. I just feel like this is the start of a horrible way of living. Please help.

[Gabes-Apg]

Linda
welcome to our group (and sympathies that you had to find us)

not sure how much reading you have done of posts /discussions, but for most here, in the early days of healing (minimising symptoms) cheating on the bland diet will generally have consequences.

are you taking any medication to help reduce the MC symptoms?

in my time here (over 6 years) and all the contributions from over 2000 people I dont recall anyone who could minimise symptoms and Not cook their own meals. This might not be what you want to hear today as you process the diagnosis and what it means,

read the posts aimed at new people, and the subsequent discussions, this may help you process what life with MC will mean.
we also have some guidelines for recovery that includes an eating plan that optimises healing
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79

hope this helps

[Crazypolkadots08]

Thanks, they prescribed Lialda for 3 months and the doc will go from there.

[jessica329]

Hi Linda,
I was 31 when I was first diagnosed (married with no kids, great job, grad school and living up life). I definitely went through similar feelings. Now...I own it! I'm not afraid to call a restaurant ahead of time on off hours and discuss my needs. I have yet to encounter any jerks in the restaurant industry. I also inform others of my Microscopic Colitis when it's appropriate so they understand my "invisible" illness as well as the seriousness of autoimmune/IBD diseases. Unfortunately, microscopic colitis demands a diet and lifestyle overhaul. But, it's also a generally healthier way of eating. Think simple meals.

[Gabes-Apg]

Linda,
i was just listening to a podcast and they said something along the lines of

"people with health issues, something, or various things of your current lifestyle have contributed to you getting that medical condition. to get well, some things have to change.... the famous einstein quote, doing the same thing over and over again and expecting different results applies"

i know it is tough to get a diagnosis, being having symptoms that impact life, come to a forum like this and realise that life is going to be different, it is alot to process and embrace, along with the reality that there is no 'cure' per say.
I encourage you to work through the thoughts and emotions and embrace the information and support shared here..

[Crazypolkadots08]

Thanks so much guys, I really appreciate it.

[Erica P-G]

Hi Linda,
You are only 3 yrs older than my daughter, and if she had gotten this Dx I know it would have made her world feel like it was falling apart, but I also know since you sought out information on the internet and found us, you really want to understand everything about this and how to put the pieces together so you can begin to feel as normal as one gets with MC, LC or CC.

It took me 4 years to put me first and seek help I didn't know existed at this site, I'm thankful you are here, you may not like alot of what you learn about LC but it can be learned to live with.

I've been a fighter for the cause a year now, and I wont lie it has its ups and downs, just know alot of people are here for you
My suggestion is read read read and then read some more...and ask tons of questions.
Cheers
Erica

[gac]

Linda, I was diagnosed a year ago when I spent 6 days in intermediate ICU so deathly sick with diarrhea that I wanted to die. I had been living gluten free for 7 years and was rigid on that diet. But all of a sudden, something unknown changed and overnight I became so terribly sick. At first I thought I could fix it myself, I must have mistakenly eaten something with gluten. But as the weeks went by and I got sicker, I knew something was seriously wrong. Finally ended up in the emergency room and ICU.

The doctor put me on Entocort and Peptobismal and told me to eat gluten free and dairy free and that I could eat anything else that I wanted. OMG!!!! I was still so very sick weeks and months later. I started eating just one food that I could tolerate, just one food that didn't make me sick. I never ever ever ate out. I never ate at anyone's house. I trusted nothing that I didn't prepare myself. Too many hidden ingredients. I ignored everything my doctor said. I finally found this incredible website and with their step-by-step help I am getting better but I have learned that this is a very very long road. It is not only what I eat. It is seasonal allergies that affect my intestines. It is the heat and humidity that affect my intestines. It is stress that affects my intestines.

If I go to a restaurant, I order a plain baked potato because I know they can't screw up a potato. That's all I eat. I eat before I go out and after I get home. Everyone who knows me know how sick I have been and they know not to rag me about food. I know I cannot drink alcohol. It has been a year and I can only tolerate white potatoes and carrots (overcooked) - no other vegetables. No fruits. Remember my doctor originally told me I could eat anything and originally I tried. I have sporadically tried to add 1 food at a time to see if I have a reaction. If I do, I don't ever eat it again. I'm struggling enough with the very very few foods I can tolerate.

I have struggled the most with self-pity, sadness, loneliness and a feeling that my life is gone. I am 66, retired, and I don't very often leave the house because bathroom accidents still happen. The massive blessing has been this awesome website and the people on it. They have answered every question (no matter how stupid or personal), they have lifted me up and encouraged me, even when I was crying the entire time I was writing to them. They made me realize that even though no one who lived with me or near me understood my new life with MC, they all understood it completely because they'd already been thru it and could offer concrete helpful suggestions and really sympathy. They helped me find laughter and my sense of humor (and you have to learn to laugh at yourself thru all of this or you go nuts). Even one year into this diagnosis, I still have real ups and downs both physically and emotionally. I have met real friends here on this website, people I will never meet face to face but who have become friends. Some I have talked to by email or private messages. Some just on this public message board. Every single one of them are amazing, supportive, encouraging, informative and I love every one of them.

I hope all of us can help you in your journey. Each of us have our own journey as you will have yours. But together we can help each other to find what is best. I promise you that you will be facing a TRIAL AND ERROR search for what is best for you. There is no perfect answer from your doctor or from us. But just read all you can on this site and try out different ideas until you hit on what works best for you.

Hugs,
Gail

[Crazypolkadots08]

Erica and Gail thank you so much for the support

[brandy]

Hi Linda,

Welcome,

See if you can check the menu on line or in person at the restaurant in advance to minimize stress. Like Gail says baked potato or baked sweet potato no butter is safest when ordering out. A meal can be steak (verify it is not marinated in gluten or soy) or broiled fish, baked potato or baked sweet potato and steamed overcooked broccoli. The potato or sweet potato alone is probably safest.

Some members have gone to restaurants and just ordered decaf coffee or unsweet tea early on.

I see you live in FL. Sliced boars head turkey from Publix deli is GF and works well as a snack. Have the deli clean the slicer.

[Jeanie]

Hi, I just had a medical appointment today with my GP (she is actually a PA). I had to see her in order that she could refill my prescriptions for my blood pressure meds. (I'm on four of them - 2 from her and 2 from my cardiologist). She only wanted to talk about Blood Pressure and I wanted to discuss my disgusting malady. Recently I have had four episodes of a bad flare. 2 1/2 weeks ago I was in a restaurant when I had a sudden urge. We were seated ay the far end away from the bathrooms. After 4 steps, it started coming and by the time I got to the stall, I was leaving a trail. It ran down my legs so I had to clean off the inside of my slacks so I could wear them again to get back out to my car. Despite the fact that I was wearing a pad as I do 24/7, I will still a royal mess. Then I've had 3 since then but not quite as bad. I realized that I have been eating ice cream lately and usually I rarely had it. I figure that was it - so hopefully I will be better now.

She thought I should see a Gastroenterologist. I told her that upon doing my Colonoscopy around 10 years ago, he had discovered collagen deposits which were on my report (which I didn't see for a year) and when I called back he advised me to see their dietician in another office. She saw the report but when I asked her what I should eat, she said it doesn't make any difference!! WHERE HAVE YOU HEARD THAT BEFORE? I told her he didn't help me so she wanted to give me the name of a different GI doctor and I said no. I'm afraid it wouldn't make any difference. I get much more help here than from any of the doctors I have seen! So she is no help to me either. She suggested that it is probably a rectal issue. When I said that gluten is the main issue she wasn't so sure about that. I am so thankful for this forum!!!! I love Tex's tag ;it is sooo true!

Doctors are certainly needed and very helpful in most situations but unless the doctor has MC, I don't think he can comprehend what we are experiencing. Is there anyone on here that can stop the big D when you have a big flare? I mean that if I can get to a bathroom promptly before the big explosion, I am much relieved! However, that is next to impossible.

Jean

[gac]

I gave up seeing gastro docs and other docs and count on this website for the best up-to-date information on EVERYTHING. First of all, what you eat does matter, it is the most important thing about having what we have. What you eat can screw you up today, tomorrow and for months and months. Must be gluten free, dairy free, soy free plus avoid seasonings, raw fruits and vegetables, shellfish, foods with fiber in them (like a lot of nuts), and so much more. Some foods you may be able to eat will be terrible for me so it is very trial and error on the diets. But you have to start off with very very very few foods that don't make you sick and slowly add just one food at a time to see which ones you can tolerate. With me, I know within hours if something does not agree as I get violently sick. I was diagnosed 27 months ago and I still have those violent episodes of diarrhea, the ones where you have no warning and have accidents. I never leave my house wearing only a pad. I always wear a heavy adult diaper. Even that would not contain the huge quantity that is released in one of these episodes. I am hesitant to go most places because it is so unpredictable. I never eat out except baked potato or unless I strictly control how my food is prepared - separate pan for cooking, no seasonings, GF/DF/SF to avoid contamination, never eat any vegetables/fruits, may eat a piece of broiled chicken or fish with butter. But I am always so concerned that it may not agree with me that I am on edge the entire meal and worried I may not make it home. I also load up with immodium for 2 days before I go - at least 12 to 15 a day. I recently had to travel from Atlanta to St. Louis by car - took all my own food with me, every single thing I would eat and still got sick while I was there from drinking the tap water there so even a change in water can make me sick. Holy crap, water can make me sick???? You can see, my intestines have a long long way to go before I am considered in remission and it has been 27 months since diagnosis. But the doctor just poo-pooed the whole idea that foods cause this and said I could eat whatever I wanted to, said everything would eventually be fine. Not true! Listen to your body! And listen to what is posted on this website. It takes a long time so get better and better may not ever be good or great. For me, better is not having 24 episodes a day, which is what it once was. So yes, I am better.

[Jeanie]

Thank you gac! Isn't it fun!! Not really. I had to see the GP in order to get my meds. I tried to get the cardiologists to order all four but they didn't want to! Anyway my mistake was to even mention my colitis problems to her because obviously she does not understand it and she believes like most of the doctors believe is that there's a simple explanation and there is not. I was bugged .when she tried to tell me it was a problem with my rectal muscles. She probably didn't like that I did not want the name of a different G.I. doctor but I saw no point to it. And we all know that most everyone cannot understand it unless they have a problem or live with someone that does. I am so very grateful for this forum and I have gotten any help that i do have from here! It has been a while since I have posted and I need some reassurance every now and then. It just seems like it has gotten worse just recently . I did not get diagnosed until about nine years ago but I know that I had it quite a bit longer than that I just did not know what it was. So many doctors told me that I had IBS or spastic colon. There are ads on TV that talk about a similar situation and they say you probably have IBS and that's what they believe. Perhaps, so perhaps not. But that was what I was told for many years. Last Wednesday when I went out I wore a depends diaper and all went well but I was so relieved by feeling so protected. I hope that I don't have to find out that it doesn't quite do the job but at least it's got to be better.

Thanks again for your response.
Jean