Newbie! Newly Diagnosed with LC

[Sandra]

Hi all! I am Sandra, newly diagnosed with LC. I am going to share my story and how I got to this diagnosis. In August I had to get my very first tooth extracted and prior to the extraction I had to take a antibiotic incase of infection. I feel after that tooth extraction is when my symptoms first started. I have always been more of a constipated person in my life, my first symptom was starting to have more regular bm's, then they began to be more penicil or ribbon thinned, then the pain began, my bm's continued to worsen, becoming bloody, then mucus like and barely any stool. I went to the er, and got my first diagnosis of intussusception in the small bowel, colitis, and c diff. I had a short hospital stay with many drs telling me different things, from needing a colonoscopy to having my bowel removed. I went home with my diagnosis of c diff. After not getting well, I then went to see a GI dr, to said I still had c diff and gave me another round of antibiotics. After still not getting well, they finally did stool studies and I didn't have c diff. I was positive for calprotectin (an protein enzyme found in stool). The GI Dr then insisted a colonoscopy the next day, expecting to find crohns disease, as the the calprotectin enzyme is a indicator of that. Afterwards my results, were I had one polyp, some mucus findings, and he did biospies looking for MC. He called with the results of LC and never gave me any instructions except for acting like it was nothing significant. I was started on a steriod, and at this point I knew that the antibiotic Flagyl was making me feel better. But I was still very ill, dropping weight easily, loss of appetite, and still having urgency to use the restroom. After still no relief, the GI Dr referred me to a surgeon, who then turned me over to an Infecious Disease Dr.
This is where my journey led me to this group. The infectious disease Dr told me that he is pretty sure I have carcinoma of the bowel and thats what lymphocyctic colitis means..he seemed very sure of this diagnosis even though I have had a small bowel follow through, a ct of abdomen, and a colonoscopy that I felt did not suggest cancer. I felt scared and lost in the world of Drs, who was right who was wrong.. This infectious disease Dr sd he going to get all my prior work ups and tests to figure this out correctly. But as of now he is telling me I need an ileostomy!! My lab values, are often normal with maybe a slight change in hemoglobin and white blood cells, but my sed rate is increase.
My daughter has done all this research to lead me to realize maybe LC is a very serious disease causing such serious symptoms. If I am not on flagyl, I find myself in the restroom straining for a 1/2 hour just to pass a little bit of nothing. I have alot of pain on my left side, but what I struggle with daily is coping with the pain, fatigue, and feeling so weak that I cant perform any of my normal activities of daily living. Is that feeling normal? Can you relate to feeling like your life has come to a hault because of this disease? I am also taking immodium and pepto, which seem to be helping me but I just want my energy back. I have read about the GF diet, but I am unsure how to go about the elimination diet.
I go back to this infectious disease Dr this week, I am a little more knowlegdeable to fight him on this cancer diagnosis, I will be asking to see my pathology report. I am hoping to find a new Dr that will be more into this disease and treatment. Any words of advice or just sharing anything you've had similar happen to you would be great!! Thanks!!

[tex]

Hi Sandra,

Welcome to our internet family. Yes, we can identify with your symptoms, because they are quite common for members here. One of the common symptoms of this disease is extreme fatigue. Most doctors are very unfamiliar with the disease. Some of them know just enough about it to be dangerous. Your current doctor strikes me as a candidate for that category. You definitely have the right idea, trying to replace him.

I can assure you that lymphocytic colitis most definitely does not mean carcinoma of the bowel. That guy must have found his medical license as a prize in a box of Cracker Jacks. He is totally lost.

Yes, LC is a life-altering disease (not insignificant, as your GI doc seems to believe). It's an inflammatory bowel disease for which there is no known cure. The good news is that the symptoms of the disease can certainly be controlled. Most of us here have been able to get our life back either by changing our diet, or by changing our diet and taking a medication. Of course, many members here are still works in progress, but our success rate is very high. Most GI specialists wouldn't believe it, because most of them still insist that diet has nothing to do with this disease. That's like saying that breathing polluted air has nothing to do with asthma, black lung disease, COPD, lung cancer, etc.

I've been where you are. When I went to my doctor and described my symptoms, he promptly diagnosed me with colon cancer and sent me to a GI specialist who agreed with the diagnosis. They were both wrong, of course, but the GI doc never did figure out what was wrong with me (because he failed to take biopsies during the colonoscopy exam). I finally figured it out myself, after more than a year of research. I kept a food and reaction diary, and cut out all the foods that seemed to cause problems. By following a very restricted diet for over a year and a half, my intestines were able to heal enough that I got my life back, and after being so sick for so long, and seeing all the severe fatigue and brain fog, and arthritis, migraines, (plus all the other symptoms) disappear, it was truly an epiphany. It was almost like being born again.

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

Tex

[jessica329]

Hi Sandra,

Welcome! I too have LC. Luckily I have a very knowledgable and supportive doctor. My main symptoms have been: severe diarrhrea, nausea, extreme fatigue and stomach pain. Before diagnosis and treatment, I had A LOT of muscus all the time and blood at times. My doctor did a colonoscopy with mutiple biopsies taken. My drug treatment plan so far:
3 days of 9mg Entocort (steroid) followed by
3 days of 6mg Entocort followed by
30 days 3mg Entocort folloed by
14 days 3mg Entocort every other day (to wean off) with 1 tablet Lialda everyday (anti-inflammatory)
Continue the Lialda everyday for 3 months until next appointment.

My diet treatment so far:
No Dairy
No Gluten
No Caffine
No High fat foods

I aim to eat healthy, one food ingrient foods (IOW no processed crap)

So far I have had great success. If I eat any gluten or dairy then I get bloated, fatigued and poop, so I avoid those foods! I went from 10 hours a day of non-stop diarrhea to getting my life back and have gained priceless knowledge from this forum.

Feel free to ask as many questions as you need!!

[jessica329]

p.s. Sorry for all the typos, It's my bedtime, lol.

[Leah]

Welcome Sandra. It's too bad that you have gotten some bad treatment so far from the medical world. No surprise. MC ( LC) is serious, but as Tex said, with diligence and patience, you can get better. Although I am not one of us who has C, I know how uncomfortable that can be. I used steroids and diet to heal. It's been 10 months now and I am back to having a BM once every morning with no steroids. Steroids may not however be the way to go for you because it can give you C.

Diet is key to healing. Most of us here have given up gluten and dairy. Some of us are also soy free and a few are egg free. Those are the big inflammation producers. Then there are many foods that will make your symptoms worse because they are too rough on your already inflamed gut. Some of those would be: raw fruits and veggies, salad, beans and fiber foods, and fried foods. We all are somewhat different as to what irritates. I can't do caffeine either. These can be "tested" later and added back in when you feel better.

I know that this is all overwhelming. A food diary is a good idea. If you have the money, there is a lab called Enterolab, where you can send a stool sample and you can get a list of food intolerances ( check out their web site). Many have done this.

Try to read as much as you can on this site. It's so full of information . You may want to buy Tex's book. It's a great resource and does a great job of explaining MC.

Good luck , ask questions, and keep us posted

Leah

[Christine.]

Welcome Sandra
I have LC and most certainly do not have cancer. The symptoms do cause all kinds of havoc until you get them under control. And I can only second everything Tex, Leah, and Jessica have said.

I am one who used Pepto and Immodium in combination with diet. Enterolab stool test results showed a sensitivity to all 4 of the big inflammation producers so with diet change I made remarkable strides within weeks. Everyone is unique but on these pages you will find that we also have a lot in common.

Best of luck.

Christine

[Sandra]

Thank you all for your kind words and help! I go back to the doctor tomorrow, I'm hoping my Dr will be ready to listen to me and my new knowledge. At this point, I am struggling with understanding what foods contain gluten and how to go about an elimination diet. I am such a "freezer" person now days, which I am aware are processed foods. But lately the only thing I have been able to eat is a grilled cheese and drink a small glass of milk, so I am guessing I am not sensitive to lactose. Can you anyone help me with some simple meal choices or foods that I can start off with trying? I am suffering from such fatigue that I find it hard to read up on everything right now. So my daughter is helping me.
As of now the medicine I am taking is: Lialda 2.4g daily, budesonide 9mg daily, Flagyl 500mg 2 daily, Pepto 9 a daily, and 1 immodium daily.
Also my stool is black and turns to dust when flushing, lol.. is this associated with any of these meds?
Thank you again! I will be in touch! Oh, Tex.. you mentioned brain fog, I have felt like I can't remember much anymore, I keep telling my daughter something is taking my memory.. can this be associated with LC?

[cjbndtsn]

Hi Sandra,
The gluten free thing was hard for me at first as well. I read every recipe on Dee's list and found several that are really good and fairly easy. My biggest diet now consists of cooked veggies and protein. Fish, Pork, Chicken, Beef......any meats(without breaded coating) are good for you as long as you are not intolerant to them. Lots of veggies for me now as well. I do tend to stay away from very many fruits(especially with seeds). I occasionally have fresh banana but mostly prefer them frozen. Just peel and stick in the freezer in a ziplock baggy. Then take out and cut up......I much prefer them like that. I do eat canned peaches and applesauce but have also made the crustless apple pie(recipe on here). THat is delicious cooked apples in a crockpot. Udi's bread is gluten free........the white bread makes the best grilled cheese sandwich I've ever had. However......trying to NOT put to much weight back on so I limit my bread and carbs. Potatoes are acceptable for gluten free(if you can tolerate them)but again I limit those now to 2 times a week as I'm watching the carbs. I buy gluten free pizza crusts(at most stores) and put my own toppings on them......broc, onion, peppers(no green), sometimes chopped hamburger and mushrooms. Again....its a treat so I try to have the veggies on it. Most times I actually precook the veggies buy sauteing(sp) them ahead before I load the pizza. If you google gluten free recipes.....oh my gosh you can read recipes for days. There are tons of them out there. I truly believe that going gluten free was my first BIG step to improving my health and healing. My steroid rx was the final kicker. I've had a couple rough days but for the most part......pretty good. I don't seem to have a problem with dairy...i.e. milk and cheese......but I don't push them either. Couple times I fixed my own gf nachos with my and have had headaches after words so not sure that I'm completely not bothered by the cheese. There are a ton of chips available to do this......sprinkle a little shredded cheese, some onions, peppers and sometimes bacon bits. Micro for 40 sec.....yummy!!!! In the summer time I loved these with a fresh tomatoe cut up on them after the microwave. But I always peel my tomatoes because of the skin. Rice is another biggy.....lots of white rice(but not the boxed rice mixes in the stores......real white rice). You will find several recipes everywhere. Yesterday I made a crockpot gluten free stuffing to try. It was delicious and that is what I'm gonna fix for thanksgiving for my family. They will never know by tasting it. Again.....found it on the internet.
Good Luck Sandra

[tex]

Oh, Tex.. you mentioned brain fog, I have felt like I can't remember much anymore, I keep telling my daughter something is taking my memory.. can this be associated with LC?

Yes it is. Brain fog and extreme fatigue are very common symptoms of LC, but not many doctors realize that. And please don't expect your doctor to realize that food sensitivities are associated with LC. Most doctors will argue that diet has nothing to do with the disease, and there's no point in arguing with them, because they are charging you big bucks for their advice, so they have to pretend to be an expert. Most specialists become very defensive when they encounter a patient who actually knows a few things about the disease. They resent patients telling them information that they should know, and don't. Most of us just hold our tongue and go along with them, so that we can stay on good terms with them, in case we need more tests or a prescription.

The black stool is from the Pepto-Bismol. It will usually turn the back part of your tongue black, also.

You can find information on the elimination diet, gluten-free diet, and lists of food ingredients to avoid, here.

Dee is a professional chef, and she has developed hundreds of delicious recipes that are free of gluten, dairy products, and soy, and information on how to make ingredient substitutions in recipes. This is the list that Cathy referred to in her post, and you can find it here.

You are taking a heck of a lot of drugs for LC. That's another sign that your doctor isn't familiar with treating the disease, because he's trying to throw everything at it at the same time. The problem with that approach is that if you happen to be allergic to one of the ingredients in one of of the medications, that will result in a reaction that will prevent all of them from working, and you won't have any way of knowing which one is the problem. Besides, that's enough drugs to cause anyone to have brain fog. LOL.

Please keep us updated on how well you are doing with your treatment, and good luck with the appointment tomorrow.

Tex

[jessica329]

I make a big pot of soup for my lunch for the week. I use gluten free veggie stock (Kitchen Basics) and cook the veggies in olive oil before I add the stock (I do celery, carrots, zucchini and turnip as well as basil, oregano, thyme, dill and parsley). Once I add the stock and bring it to a boil, I add white basmati rice then simmer until the veggies are mushy. I rotate between that and chicken rice soup w/veggies. For dinner I make either chicken or bison with potatoes, rice, ect (gluten-free). I pretty much stick to the same foods because I know that they will not irritate. I eat fruits, cooked mushy veggies, rice, humanely raised/pasture meats, and a few gluten free products (such as Van's gluten free waffles). I also will eat a spoonful or two of unsalted natural PB straight from the jar if I need a small snack.

[jessica329]

I also put onion and leeks in the soup.

[Fish2575]

Hi Sandra, I don't have a lot of time to type, but I just wanted to comment on the Carcinoma thing. They suspected I had a carcinoma earlier this year due to high serotonin levels in the blood. At no point did anyone suggest removing part of my colon. There is a very sophisticated scan done specifically for carcinomas that can identify them. If he brings it up again and you are concerned, a scan would be the next step.

It sounds like you have some very radical doctors to suggest surgery so early on. I am very thankful that your daughter is doing research for you! Take your time, ask lots of questions here, and don't let the doctors push you into anything permanent!

Best of luck (My meds are pretty much the same as yours right now!)

Susie

[Fish2575]

And meal suggestions....

Rice cereal (Chex or Nature's Path rice crisps) with coconut milk, almond milk, or rice milk (or mix them)
Each morning I put 2 bananas and 2 TB peanut butter w/ 1/3 cup water and some ice in a blender...Heaven!
Gluten free bagels (udi's) with nut butter (almond or peanut if you can tolerate)
I have a yummy pancake recipe if you are up for it (have to buy some gf flours or gf bisquick)

snack-I love freeze dried mangos and nuts if you can tolerate

Lunch-grill chicken with quinoa or brown rice, canned salmon?

Dinner-our meals are not much different gluten free-we substitute trader joe's brown rice pasta or tinkyada brand
I have been making stew, chili (for the family), stir fry, spaghetti, braised sirloin, pot roast, etc.

let me know if you want more ideas/recipes! Susie

[Sandra]

Dear everyone who has responded to me,
I've lost my job prior to this illness. Due to post tramatic arthritic ankle, arthritis of the spine, knees, cataracts of the eyes, hypertension, and depression, and even more diagnoses, as per advice of my family doctor, I've filed for disablity. So I had no other option but to apply for Medicaid. I'm a single mother of 3 with a 13 year old still at home. Now this is where my new set of trouble has began. Medicaid is dening me to go to Ohio State to see Dr. Syed G. Husein (a colorectal surgeon) as my doctors (3) have decided. They have decided I'm beyond their spectrum of knowledge. I had an EGD done and found 17 ulceritive bleeds, a gastric ulcer, hitial hernia, and severe inflammation in my stomach lining.. also have an umbical hernia with mesh repair (9 years ago) that can not be found. I am now fighting and going through the grievence process for them to allow me to go to Ohio State Universtity..I am also going to ask to be seen by Dr. Michael Brogan (found on this site) during my grievence process. The hospital I was seeking treatment at will no longer accept my form of medicaid, along with my primary care physician and other doctors I was seeing. I am falling through the cracks of the healthcare system.

Just wanted to catch up with everyone, I am struggling here trying to deal with all this to seek proper care! I am hoping I get things resolved soon, but have little energy. So as of now, my GI dr is going to help me with a pier to pier review with another dr to help me with my medicaid, while I will be doing my own grievence procedure (getting around documentation from each dr)..sigh :(
My only medication change so far is they have stopped the pepto.. other than that I am still on the same medicines. I still have good days and bad days, seem to be getting worse here lately.

Thank you all for your time and patience and giving me guidance! It is so greatly appreciated!

Sandra

[tex]

Hi Sandra,

Wow! Just when you think that there's a glimmer of hope, the government comes along to try to squash it. They love to present a lot of extra hoops to jump through, especially when we don't feel as though we're able to jump.

Good luck with all this. I hope you'll be able to get it sorted out soon.

Tex