Advice/Help Please Newbie

[Kate0129]

Hi.....

My name is Kate....i'm have not been officially diagnosed yet, but through research and just knowing all my symptoms, i think i may have some form of colitis. I'm feeling very very scared & lost right now. I have been dealing with stomach issues for 25+ years. Have had 2 colonoscopies & 1 endoscopy. I don't believe my gastro doctor biopsied for MC. I am very fearful of having another one now...it's been about 5 years since my last one. I am dealing with daily watery diarrhea, very low cramping/weird feelings in my colon. I stay tired all the time. I cannot hardly eat much at all. Naturally with all that diarrhea, my vitamin levels are extremely low. I am taking Vit D supplements. I take pepto and immodium sometimes. The pepto helps some, but doesn't stop the diarrhea, the immodium will stop it usually, but then i'll be constipated for too long, and then a diarrhea relapse worse than before. I'm just feeling so scared that something horrible is wrong with me. I know i need to get to the gastro doctor again, but i also have panic disorder along with emetophobia....so it's very hard for me to do this again. I need some help here, advice, comfort, anything. I would greatly appreciate. I have recently tried to start going GF...i do not eat dairy, any vegetables, any fruit, no spicy foods. Basically my diet has to consist of meat, potatos, rice, pasta. I cannot eat anything green at all, goes right through me. Sometimes i feel so hopeless i would rather not even be here anymore. I would never do anything like that, but it's just the way it makes me feel sometimes. Helpless, and hopeless. I went to a doctor this am, and am having my vitamin levels rechecked. I have been hospitalized twice for such low potassium/magnesium and calcium. I was on IV's for 4 days for it. I had diarrhea so bad and couldn't eat or drink. Very scary stuff.....thanks for listening and i'll take any advice you have for me.

[tex]

Hi Kate,

Welcome to our Internet family. Based on your symptoms, it is almost certain that you have microscopic colitis. This is a cruel disease, and I had the same feelings of loneliness, helplessness, and hopelessness when I was reacting. If you want to take any medications to treat the disease it will be necessary to get a diagnosis, but you can certainly treat the disease yourself, without a diagnosis, if you want. If you have already had 2 colonoscopies and your doctor has not been able to diagnose you, then it's pretty clear that she or he doesn't understand the disease anyway, so you probably wouldn't get much help from your doctor even if you had a diagnosis.

Most of us here control our symptoms by diet changes, and you can do it too. You already have a good start if you are avoiding dairy and most vegetables. Gluten is the main problem. We have to avoid even trace amounts of gluten, and it takes months for the intestines to heal after gluten is removed from the diet. Most of us are also sensitive to soy, and that includes most legumes, so it's usually necessary to eliminate those foods from the diet, also. After you are in remission, you can test soy by trying it, to see if it is safe to add back into your diet. Make sure that you peel and overcook any vegetables, and try to keep the amount of fiber in your diet at a minimum level while you are recovering.

White rice is usually OK, but brown rice has too much fiber for most of us. Some of us even react to chicken, so the safest meats are turkey and lamb, or wild game such as venison, rabbit, quail, pheasant, duck, goose, etc. Most of us are able to tolerate Almond Milk or Coconut Milk to replace cow's milk, and these can be used with gluten-free cereals such as Rice Chex or Corn Chex.

We've all felt similar to the way you've described before we were able to control our symptoms. Gluten sensitivity is a major cause of depression. Please be aware that many of us have a magnesium deficiency (because of all the diarrhea, malabsorption problems, and diet restrictions), and a magnesium deficiency typically causes the same feelings as a panic disorder. Been there, done that. Many of us take chelated magnesium (magnesium glycinate), because it is the form of oral magnesium supplements that is the least likely to cause diarrhea. Many of us use a magnesium oil spray on our skin, or a foot soak in Epsom salts, or Epsom salts added to bath water, because magnesium can be absorbed into the skin without causing any risk of diarrhea.

You are off to a good start. You just need to get all of the gluten out of your diet, and track down any other foods that might be causing problems. Again, welcome aboard, and please feel free to ask anything. On this discussion board we all understand how you feel, and we are here to help you to get your life back.

Tex

[Kate0129]

Thank you Tex so much for your reply!

I am sure you get bombarded with questions, and i don't want to be a burden to you by asking too many. But i do have a few.....

1. I am experiencing a weird feeling/sensation in my lower abdomen....is this normal? I also have what looks like undigested food/mucus/seedy like substance in my bm. Very scary.....


This isn't a question, more of a statement i guess...i've already switched to rice milk....and have bought Gluten Free Chex cereal, and i've been eating Rice Crispies as well. Only white rice for me or jasmine....or basmati, no brown rice. I don't eat wheat, intentionally anyway. I have cut out everything i can think of that bothers me. I am working on drinking water instead of Pepsi, of which i have been seriously addicted to for many years, and i KNOW that it's killing my guts, and i'm ready to stop it now! I bought gluten free soups today, and is dairy free yogurt ok, or no?

Going Gluten Free is scary to me b/c it feels very hard, but i'm still learning......I'm just very scared right now, and i can't seem to shake the feeling...but knowing you all are here and going through the same thing gives me hope.

I am not in the same area as my former gastro doctor so i would have to go to a totally new one now if i do decide to have the colonoscopy again. For 20+ years i've been told all i had was IBS/D.......maybe it started out that way, but i'm not so sure now.

I have a powder potassium supplement from when i was in the hospital so i try to do that when the diarrhea is really bad, which in the past 2 mths has been horrendus.

Thanks again for your feedback......

[jlbattin]

Kate,

Welcome to our family! We've all been where you are. I am only about 2 1/2 months into my diagnosis and have been gluten free, soy free, dairy free, and egg free for a little over 2 months now. I can't tell you how much better I feel. Those pains are very normal and they may move around (from side to side, etc.).

Those feelings of hopelessness are very common among all of us. I spent about a month from the time my symptoms started until I was diagnosed and there were days I didn't want to get out of bed, and wasn't sure I wanted to live. But trust me, you keep going, and change your diet, and you will start to fill better.

I would question the Rice Krispies only because it looks like it has malt flavoring in it and that usually contains a whole bunch of grains that don't always set well with our tummies. I have been on chicken, white rice, turkey, hashed browns, and a banana for a little over 2 months now. I have just recently started testing some other foods. I do pretty well with bacon, although I don't eat it but about once or twice a week. Hamburger is not my friend yet, and neither is anything with corn in it. I can tolerate a little bit of almond butter and have learned to love it as much as I did peanut butter at one time. It makes a nice treat with my banana or on a rice cake. Bone broth is another very safe and healing food. I buy chicken bones at Whole Foods (for cheap) and cook them with water and a little sea salt. Then I freeze it and eat it when I feel a little rough.

Make sure your vitamin D levels are up there. I take between 8,000 and 10,000 IU's of Vitamin D3 a day and finally made it to the normal category my last blood check. I have a spray magesium that I use a couple of times a day and also use Morton Epsom Lotion before bed. Getting those 2 supplements up there will also really help.

Don't give up! There is light at the end of the tunnel!

Again, welcome, and there are no stupid questions on here. If you need information, this is the place to ask!

[dfpowell]

Kate,

You may be interested in reading the book on Microscopic Colitis, it is in the upper right hand corner of this website. Tex is the author, it is very informative and helpful. Jari and Tex have given you some good information for getting started on diet changes.

[Erica P-G]

Hi Kate,

I am just throwing in my two cents, as I have been dealing with MC/LC for 8 years and got serious with how to heal about 4 months ago. So glad I found this site and the people here such a godsend.

A post you might check out is http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173 as it begins my journey and I was scared, mad, sad, you name it. There is a huge grieving process with this and a learning curve, but it can be done and I have to say I am just now starting to feel the positives about it all. If you are willing to follow some of the beginner steps and remove Gluten from your diet for good you will see results. There are other things that will come along but you will find there are just some things we just don't need in our lives anymore to be happy and healthy.

Keep asking questions
Cheers
Erica

[tex]

Kate,

Jari is quite correct about the Rice Crispies. The malt seasoning used in most mainstream breakfast cereals is the reason why we cannot eat them. Malt is made from barley, and wheat, barley, and rye are all sources of gluten. For most of us here, oats also cause us to react because the storage protein in oats is very similar to the protein in wheat that causes us to react.

And Jari is correct that we often feel all sorts of weird sensations in our intestines when the disease is active. At times, my intestines seemed to writhe like a snake, and at other times, pain from either gas pressure or cramps could be so bad that it would almost bring me to my knees. We have all seen undigested food in the toilet, because when the inflammation is severe, we are unable to completely or properly digest our food, especially certain types of food.

The mucus is also common. When the intestines are inflamed, they produce copious amounts of mucus in order to try to protect themselves from whatever might be in the fecal stream that is causing the inflammation.

If you want to try a medication, Pepto-Bismol works just about as well as any of the prescription medications. The only problem is that some of us cannot use it in the amounts necessary to control the MC symptoms, because we develop side effect symptoms. The treatment calls for 8 or 9 tablets (or the liquid equivalent dose) of Pepto-Bismol per day, for 8 weeks. Most people will see remission of symptoms within about 2 weeks from this treatment.

However, note that it can cause tinnitus (ringing in the ears) for some people, and they have to stop taking it because of that. It's also possible for it to cause other neurological symptoms for some people. If it doesn't cause those side effects though, it's generally a safe treatment, and it has a very high success rate, as medications go, usually around 85 %, in medical trials.

You're very welcome,
Tex

[Kate0129]

Thank you all so much, Tex, Jari, Donna and Erica.......

I am going to order the & read that for sure! This is just maddening, but you all make me feel much better just talking about it with you all. I appreciate it so very much.

Erica ~i will def read your beginner post~i appreciate you replying to my post and welcoming me, all of you i thank you all so much.

I imagine the tears are going to flow pretty soon b/c i am so overwhelmed. I'm sure you've all been there though.

Gosh, do any of you work b/c of this? I worked my whole life up until a year ago....& the last 2 years on my job i had to be under FMLA......thank God i do not have to work anymore, and for that i am ever so grateful! I don't know how i worked as long as i did to be honest, i know i couldn't do it now.

So i'm off on my journey to get all gluten out of my diet, for dinner tonight~basmati rice & a grass fed beef hamburger w/salt. Wish me luck.....

I need to get some bone broth brewing i suppose......

Oh and just wondering do you all feel/hear the food moving around in your intestines/stomach making all these very strange and weird sounds? Just curious......

[Erica P-G]

HI Kate,
Yes I still work, it was a bit hard there for a while, but now that I have given myself room to cry, be mad, feel sorry for myself....and then gradually made the needed changes (yes that includes reading Tex's book too), I had to discover bit by bit things that were keeping me from really feeling like my old self (well the better new self now:-) Fortunately I am able to leave my desk and use the restroom as I see fit. I have to say I don't have to nearly use it as much anymore, or for normal visits

Try the best you can to breath, let the stress of all this move to aside. Stress is such a huge trigger for us with MC.

Great advice I was given and now I pass along is eat good helpings of Protein often during the day my safe one is Turkey (and turkey sausage) and I alternate pork (chops, and nitrate free bacon) and some chicken now an then.

I am also learning we don't starve we just learn a new eating regimen. It takes time, hang in there

[jlbattin]

Kate,

I also still work, but just part-time. I teach reading at an alternative high school so I have one class this quarter and next quarter I will have 2. I've had no issues at all. However, I have to be out of the house for a 7:45 class so that requires a new regimen on my part. I get up at 4:45 and make sure I eat well before I go (and these days it takes longer to eat as I don't wolf food down like I used to) and try to be out of the house by 6:45 or 6:50. I was very nervous when I first started and stress is NEVER our friend so I had a couple of rough days, but I've adjusted well and all is well.

It's a new way of life and to say I never get frustrated would be a lie. I get frustrated pretty often when I realize what I had to give up and when I go shopping and can't find what I need or anything without gluten, soy, dairy, or egg, but those days are getting fewer and few also. We've all been there and what you are experiencing is very normal. It feels like you're the only one on the planet with this disease.

I also read Tex's book plus all of the archives (well, most of them) on this board. Valuable info in all of those posts.

[tex]

Oh and just wondering do you all feel/hear the food moving around in your intestines/stomach making all these very strange and weird sounds? Just curious......

Yes, that's very normal. The loud digestive system sounds that are associated with this disease are so unique that anyone who is familiar with that sound can identify another person who has the disease on the other side of a large room, just by the intestinal noises.

Tex

[JFR]

Kate,

I have a history like yours. Decades of so-called "ibs" and then severe D that made it nearly impossible to ever leave the house. Six immodium would stop it but only until I ate something and it would start up again. I was housebound. Then I found this site anddecided that I must have MC . By that time I had decided that doctors didn't have a clue and trying to get an answer from them was a waste of time and money. My local GI doctor told me to eat more fiber even though I had said that fiber made things worse. I started out here asking whether I really needed to go get another colonoscopy just to get a diagnosis. I decided that I would just try diet. I was very careful for a long time, cutting out all gluten(all grains in fact), all dairy, all soy and all eggs. I ate only single ingredient foods so no ingredient lists to read and try to figure out if they were safe. I also had the Enterolab test and cut out chicken and beef and learned that rice was not my friend either. I continue to eat this way. I am in remission, can leave the house without problem. I now can eat vegetables, even salads, which I couldn't do at first but I am very very careful, all the time, not willing to take chances. I like being able to leave the house too much. I never got an official diagnosis but I am lucky to have a family doctor who accepts my diet regimen. She knows that there are a lot of issues that conventional medicine does not have the answer for and accepts the answer that I have found. If you follow the dietary advice you get here and from the book, you will be able to get better, even if it doesn't seem that way now.

Jean

[Kate0129]

Thanks all of you....i am still struggling with big baby fears! I just got a call back from a nurse from my appt. day before yesterday and was told my potassium had dropped again! I have to take potassium every day now. This is so scary to me b/c i've been hospitalized twice from low potassium, and i am so scared right now. It's all b/c of so much diarrhea.......i feel like there is no way out of this hell!!!!!

Hearing you all's stories makes me less afraid, but right now i'm just shaking with fear. I have eaten a banana this morning with a bowl of Gluten Free Chex cereal, along with a small bottle of gatorade w/ my potassium supplement mixed in it. I hope i will not have diarrhea from it all. Please say a prayer for me, if you pray, b/c i need it right now. I am all alone today and just feel scared.....

[Erica P-G]

Hi Kate,
First of all relax the best you can....next the sugar in Gatorade may not be your friend, I'd take my potassium with coconut milk or rice milk, even almond milk. Citric Acid can wreak havoc on us too until we have had sufficient time to heal. Stick to bland food (sticky white rice, over cooked veggie perhaps peeled carrot or zucchini or yam), plenty of protein (a safe one is turkey, lamb, wild game). Use only one seasoning perhaps sea salt for right now. This bland diet will give your gut a chance to slow down so that D will not be so awful. Your gluten free Rice Chex is wonderful and eat it plain or with a safe milk type as mentioned above. Eat as often as you feel like it, the more protein the better at this stage. Also your VitD3 level and Magnesium level need to stay elevated, I use a D3 spray (Mercola.com) and a Mag oil spray (vitacost.com) this too will help start the healing process.

Don't be afraid, you can do this.
Hugs
Erica

[Kate0129]

Thank you Erica.....

I guess you are right about the gatorade.....i do have rice milk that i have been using with my cereal. I will try it with that from now on, i was just thinking since Gatorade had potassium in it , that would just be extra for me. I have eaten a plain hamburger patty for lunch with basmatti rice plain, with just salt. I have plain chicken breast and celery, carrot, and parsley, and organic chicken broth in the crock pot, making me some soup, plus i cooked gluten free pasta to add in at the end. I am determined to get this under control. I have cut out my pepsi, to only 1/2 a can a day. I am trying so hard to drink my water as well. I never drank it before, which is a big part of my problem i know. I am really trying hard to give it up as i know it is no good for me. And today i have not had the stomach feelings i have been having.....so far anyway. I feel alittle better, knock on wood. I think sticking to plain food has helped already. I am going to keep it up too. I cannot handle anymore agony at this moment in time. I might just lose my mind. I do have a headache though, from lack of caffiene i'm sure. I need to get some turkey i suppose too.....i am alittle too scared to eat vegetables right now...i always have trouble with them. I might try some very mashed up squash....scraping the seeds out. I do have the carrots and celery in my soup though.

Erica can you tell me exactly which sprays you use...i will order them today! Thanks~you're an