Newbie with LC

[Sara Jane]

Hey there!

I was just diagnosed with LC a few months ago, and was very upset at the lack of information I could find on the internet about it, and then I found this site! I thought I'd tell my story and hopefully get some feedback.
I've had IBS type symptoms since I was 13 years old or so, with a sensitivity to dairy products. Diarrhea was an everyday issue that I would struggle with, but my parents weren't alarmed. My dad was diagnosed with IBS a couple years before I was born, and everyone on his side of the family has stomach problems. It was just assumed that I had my father's stomach. A couple months after I turned 18, I got sick of dealing with my "undiagnosed IBS" and finally made an appointment with my PCP. He thought I had Celiac, but the test came back negative. He then referred me to a GI doc who decided to do a colonoscopy. I was put on a low residue diet. A few days after the procedure, I got a phone call from the GI department- the nurse told me about the LC, and told me to take 2 Pepto tablets before each meal and before bed. She scheduled me for a follow-up appointment (July 3rd, 2012), and that was it. I was horrified by the lack of information they gave me. I Googled LC, and came up with almost no information. I was even more shocked to find that not many teenagers have LC. My main symptoms are a small appetite, fatigue, dehydration (but I am diligent about water and electrolyte drinks), and bloating to the point where I appear almost 4-5 months pregnant. I have found relief in taking chewable papaya enzyme (found it at Wal-mart thanks to a friend's suggestion!) after meals if I seem to have eaten a "no-no" food, which seem to be plentiful. I also struggle in eliminating "no-no's" from my diet because I currently reside at a summer camp where I work, and eating with the LC has proven to be a challenge. I am very looking forward to my appt. with the GI doctor, and any feedback any of you may have!


Sara Jane <3

[tex]

Hi Sara Jane,

Welcome to our internet family. We consider ourselves to be a family because no one really understands this disease unless they actually have it, and that applies to doctors, as well. Here, we all understand it, because we've walked the same path. Your symptoms are very typical of what almost all of us have experienced before we were able to take control of our own health and develop a treatment program that works for us. In the past, most GI specialists have been pretty much clueless about how to effectively treat the disease, and most just prescribe meds. That treats the symptoms, but doesn't control the source of the inflammation, which for most of us, is food sensitivities. A few doctors are beginning to catch on, so in the future, hopefully their treatment programs will improve.

Incidentally, FWIW, our youngest member was 2 and a half years old when she was diagnosed. Fortunately, her mother chose to follow our advice and use diet changes, rather than the drugs that her doctors recommended for her treatment, and within a couple of months, she had her diet fine-tuned and her symptoms under control. That was almost 4 years ago, and she has remained a healthy, happy little girl, and other than the diet restrictions, she was leading a normal life at last report.

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

Tex

[Leah]

Sara Jane, this was not on the main message board, so I didn't see it earlier. Have you gotten help yet? If not, post on the main board, and yo will get many more responses.

In a nutshell, you need to overhaul your diet. Taking gluten, dairy , and soy out would be your first step. They all can cause inflammation in your gut. Other foods with fiber will irritate and react as long as you have that inflammation.

Read many of the posts here to learn more. You can get control of this!

Leah

[Sara Jane]

Leah,

I did go back to the GI doctor, and it was quite a stressful day. He had to perform emergency surgery earlier that morning, so my appointment was delayed about an hour. The doctor's office called me while I was on my way to the hospital, and they wanted to reschedule me. I was adamant about seeing the doctor that day because I work 6 days a week, and wanted to know what he had to say. When I finally got in to see him, he seemed rushed. I told him that the Pepto treatment was working okay, but not great. He wanted me to continue the Pepto, as well as take an oral steroid for Chrohn's patients, Budesonide. I was unsure if I were to take the Pepto for more than 8 weeks, and when I asked him about it, he said it was fine. He quickly wrote me up the prescription, and hurried out of the exam room. I was appalled. The budesonide only cost me $10 with the insurance co-pay, but it retailed at over $1,400! That day I decided to wean myself off of the Pepto and not take the steroid. Since then, I have eliminated dairy out of my diet, and it has worked great. Almond milk is my new best friend. :)

Sara Jane

[Leah]

Hi Sara Jane. Sorry to hear that you had such a crappy GI appointment, but I'm glad you are feeling better. Dairy was the first thing I had to take out also. Keep the budesonide just in case you have a relapse. Many of us have taken it with great success and have been able to wean off eventually. However, if you can do this with just diet- that's even better. Good luck :)
Leah

[Gabes-Apg]

Sara Jane
Gday from Australia

maybe the rushed appointment was to your favour in getting the script for the Budesonide. As Leah has mentioned, with this med as your safety net use this time to figure out your MC management plan, what foods work, when to eat, when to exercise etc etc
based on the inputs on this forum, not many of us have a good supportive GI specialist, (i think it would be in the range of 1 in 15-20) most of the success stories in this group is based on self management.

the tag line that i mention to newbies regarding MC is that 'there is no right way or wrong way, there is your way' we are all different. what works for one person may not work for another. we have to be aware of our triggers and know what foods are our friends.

hope your week improves