Hello and Thank You from Another Newbie!

[DJ]

Hello All, This is my first time joining a discussion group. I was diagnosed with LC this past summer. It's been difficult but it certainly explains many long-standing issues. I've been treated by every medical discipline imaginable for decades. Each doctor had an explanation related to his/her area of expertise. One of my biggest issues in the past has been a disabling cough. Only those who have seen me understand what I mean by disabling. I have thrown my back out coughing. When strangers see me gasping, sweating and gagging they come to my rescue because it looks like I can't breathe. I've had people move away from me in lines or other public places to avoid "catching" what I have. After many years, it was discovered by and ENT that my vocal chords were singed and had a rubber band-like mucus coating to protect them from my whopping GERD. The ENT who discovered this sent me to as Gastroenterologist who did further testing and placed me on PPIs. Although I reported that the PPIs did not work, she told me I should be taking more. Beyond this, she completely misunderstood my cough complaints and would tell me things like maybe the cough would improve after the allergy season ends or maybe losing weight might help (BMI = 25). After years of fruitless discussion with a Gastro, I asked my family doctor to give me a microdose of antidepressant to treat my spastic colon, which I KNEW was the root of my problem.
In late March, after years of taking two adult aspirin every night and PPIs, the microdose of antidepressant threw me over the edge. Within a few hours of taking the antidepressant, I began having frequent, explosive liquid diarrhea. The short story is that I became dehydrated, weak, and able to eat only meat and sugar. After being tested for many things including C.Diff and carcinoid diarrhea, a colonoscopy with biopsies showed LC and I began taking Enticort 9mg daily in June. Between the Enticort and avoidance of certain foods I'm doing better.

During many years of trying to tame my exhausting and socially embarrassing cough the most helpful thing I did was a strict elimination diet. I learned what to do on the internet (not with the help of a doctor) and started by eating only four foods. The process was long but very informative. I learned that wheat, dairy, soy, and nuts are not my friends. Now that I have LC, this is especially true and I'm trying to be very careful about hidden additives. They are everywhere!

For so long I felt misunderstood. I felt that the doctors were on the wrong path. I tried everything. This is not a pleasant diagnosis but it sure explains a lot! My colon has felt like a washing machine with an uneven load for decades! I remember my grandmother having terrible "stomach" problems and a choking cough. Gee, I wonder what her problem was

To those of you who created, maintain, and participate in this site. Thank you!!!!

[Sheila]

Welcome. I read your post with great interest. When I was a child I would cough until I threw up, cough until I was breathless. I slept sitting up when the cough was particularly bad. Diagnosis was post nasal drip, fungus infection, allergy and others that I don't remember. The cough was worst at night and lasted for several years. I had my sinuses drained, took "trochis" for the "fungus", drank gallons of cough syrup loaded with alcohol.

Eventually, it stopped. Who knows why. These days I cough because "something" feels like it's caught in my throat, undoubtedly it's mucous. I do a lot of throat clearing as well. I'm amazed there is someone else with "the cough". If I suck on a couple of soy-free life savers, the cough/throat clearing subsides. Makes me crazy and I'm glad it generally abates by mid-day.

I've been on budesinide for 2 years. Just weaned down to one 3 mg capsule every third day and I'm fine so far. Keep up the good work on my diet.

Sheila W

[Sheila]

Meant to say, "keep up the good work on your diet".

Sheila

[tex]

Hi DJ,

Welcome to our internet family. I did a lot of coughing when I was growing up too, but mine was due to asthma, which, thankfully, faded away when I reached my 20s. And it was rarely as severe as yours. I can remember those distant days well-enough to vividly recall how extremely exhausting coughing can be, though, when it's intense and persistent.

I will assume that you are well aware of the fact that both aspirin (all NSAIDs) and PPIs are well-known causes of LC (along with numerous other medications). And you're right, most processed foods are loaded with inflammatory ingredients these days.

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

Tex

[lorimoose]

DJ,

Welcome. I am glad you have finally received a diagnosis, and found this board. I just weaned off entocort, and am feeling well, thanks to the advice I received on this board. I reacted very strongly to the entocort, which allowed me to get my diet in order. I still am and will stay on a strict diet, although it no longer feels restrictive. It feels like freedom. I hit rock bottom after a sinus infection that was treated with augmentin, and there was no way out after that. I am grateful that my GI looked for the disease after several months, and took many biopsies to figure it out. He prescribed the right meds, but the diet healed me. Most days I feel better. I spent many of my younger years coughing too, but attributing that to allergies and smoking, back in the good old days. I wonder now, if gluten and dairy didn't contribute. So far this year, I have not suffered my typical hay fever, which always acts up in the fall. Or perhaps the entocort protected me...

Now I am learning to expand my diet very very slowly. I am in no rush.

We are happy to share our experiences and our diets, meds and tests, trials and tribulations, and celebrations!

Warmly,
Lori

[Leah]

Welcome DJ. It seems like you have gotten control of the worst of it. So sorry you had to go through so many years of being mistreated and misunderstood.
I was on Entocort for a total of 6 months. My advice is to VERY SLOWLY wean off of it and stay on it at least four months. Those who don't use it long enough, or stop taking it too abruptly are very likely to relapse. Also, raw fruits and veggies are not a good idea while you are healing your gut.
Keep us posted on your progress
Leah

[DJ]

Thank you for the warm welcome. I feel better just having found this group. My current challenge is maintaining my strict diet while on the road. Traveling for a week at a time for my job is a particular challenge. Eating all meals in restaurants is very difficult. As I'm sure you know, restaurants often offer olive oil that is actually an olive oil blend (with soybean oil) and restaurants frequently butter steak before serving. I get hotels with kitchens when possible but it usually isn't possible. I'm learning but it takes time. I appreciate all of you more than you know.