Newly diagnosed

[Kg16]

Hello! I’m a 35 yo Puertorican gal with two beautiful kiddos.
I just got diagnosed this week and so glad this group exists
My symptoms started late Nov with just mucus and constipation then by Jan 1 I had full blown watery D all day, everyday . My dr put me on pepto and that worked ok (2-5 potty trips a day, some days where better than others). After my colonoscopy The dr put me on Cholestiramine and that was the best, I still had D but only every other day! Fasforward to a few days ago biopsy results come in positive for Lymphocitic colitis and he put me on Budesonide 6mg a day. Today is literally my 4th day on it. Between the day it all started and today I’ve had 3 solid sporadically. I guess that’s good
I have been Gluten free for the past 10 years after I had my gallbladder removed an I suspect I may have an autoimmune issue that my PCP hasn’t been able to pinpoint.
I have been feeling so tired/fatigued lately, very overwhelmed, not sleeping well, heart is always racing and I just need to relax but don’t know how.
Will this ever go away/remission? Will I live a full healthy life? What things should I avoid eating? I was already off of alcohol, gluten and caffeine.
Do any of you get eye pain?
Thank you in advance.

[tex]

Hi,

Welcome to the board. I'll try to answer your questions.

I have been feeling so tired/fatigued lately, very overwhelmed, not sleeping well, heart is always racing and I just need to relax but don’t know how.

Those are typical symptoms. It helps to adopt a one or more relaxation techniques. There are plenty of relaxation methods described in books, and online

Will this ever go away/remission?

Spontaneous remissions occasionally do occur, but most of us have to treat the disease in order to keep it under control.

Will I live a full healthy life?

Yes, If you control the disease. The most effective, safest way to control the disease is by making diet changes. The drugs that doctors prescribe have too many side effects, especially in the long-term.

What things should I avoid eating? I was already off of alcohol, gluten and caffeine.

Look at the guidelines at the link below, and adopt an elimination diet. After you've been in remission for a while, you can test any of the foods for three days, and if they don't cause a reaction by then, they are probably safe for you. Obviously, if a food causes a reaction in one or two (or three) days, it's not safe.

The biggest offender is gluten. It's possible that your diet may be contaminated with trace amounts of gluten. Even the tiniest crumb is a problem. If your diet is truly GF, then an elimination diet should avoid casein (which is in all dairy products), chicken eggs, and soy. Minimize fiber and sugar in your diet, and use no artificial sweeteners.

Suggested Eating Plan - Stage ONE

Do any of you get eye pain?

Yes, eye inflammation sometimes is a symptom. The most common eye issue is uveitis. It's possible for almost any other organ in the body to become inflamed, also. Controlling the disease by diet changes will usually resolve all the issues.

If your diet is truly gluten-free, you should be able to reach remission with the diet in less than a week of so. If there is any gluten in your diet remission may take several months after you cut it out. Budesonide will mask food sensitivities, so be sure that all of it is out of your system before you attempt to reintroduce new foods. It takes a while to get budesonide out of your system. Depending on how long you have been taking it, it can take up to a couple of months. If you've been taking it for only four days, it should be gone within a week (but that's a guess).

You will relapse if you stop the budesonide first. If it were me I would start an elimination diet today, and continue taking the budesonide for a few more days or a week, to prevent a relapse. But taper the budesinide dose to 3 mg after a couple of days, and after a couple more days, take 3 mg every other day for a few days. If the diarrhea starts to return, increase the dose and taper more slowly (after taking 6 mg for a few more days). After you're in stable remission, all your symptoms should be gone, except for the fatigue and brain fog. It takes a while for them to fade away, sometimes as long as two years.

I hope this helps. Again, welcome aboard, and please feel free to ask anything.

Tex

[Kg16]

Tex,
I cannot thank you enough for taking the time to answer all of my questions. You are a wonderful person!
My diet was already gluten free but maybe traces where sneaking in from the toaster that I share with my family. I have never been diagnosed for celiac or gluten sensitivity and my gluten blood test came back negative twice. The reason I have been on a gluten free diet was because it was the only thing that stopped diarrhea after my gallbladder was removed.
I am currently on 6mg of budesonide and doc said he would asses in a month. The reason I decided to take the meds other than being miserable is because I have been having some really weird symptoms that could be related to something autoimmune but my drs seem to think I’m crazy.
I’ve been having really dry eyes, dry mouth/throat, dry hands, my eyes hurt . I thought maybe a steroid would help curb those symptoms.
I’m 35 and have two young kids and sometimes day to day is hard. Wish everything would resolve with diet.
Should I do my prescribed dose of budesonide or should I taper now and try something else?
Thank you again
Kg

[Kg16]

Hi,

Welcome to the board. I'll try to answer your questions.

I have been feeling so tired/fatigued lately, very overwhelmed, not sleeping well, heart is always racing and I just need to relax but don’t know how.

Those are typical symptoms. It helps to adopt a one or more relaxation techniques. There are plenty of relaxation methods described in books, and online

Will this ever go away/remission?

Spontaneous remissions occasionally do occur, but most of us have to treat the disease in order to keep it under control.

Will I live a full healthy life?

Yes, If you control the disease. The most effective, safest way to control the disease is by making diet changes. The drugs that doctors prescribe have too many side effects, especially in the long-term.

What things should I avoid eating? I was already off of alcohol, gluten and caffeine.

Look at the guidelines at the link below, and adopt an elimination diet. After you've been in remission for a while, you can test any of the foods for three days, and if they don't cause a reaction by then, they are probably safe for you. Obviously, if a food causes a reaction in one or two (or three) days, it's not safe.

The biggest offender is gluten. It's possible that your diet may be contaminated with trace amounts of gluten. Even the tiniest crumb is a problem. If your diet is truly GF, then an elimination diet should avoid casein (which is in all dairy products), chicken eggs, and soy. Minimize fiber and sugar in your diet, and use no artificial sweeteners.

Suggested Eating Plan - Stage ONE

Do any of you get eye pain?

Yes, eye inflammation sometimes is a symptom. The most common eye issue is uveitis. It's possible for almost any other organ in the body to become inflamed, also. Controlling the disease by diet changes will usually resolve all the issues.

If your diet is truly gluten-free, you should be able to reach remission with the diet in less than a week of so. If there is any gluten in your diet remission may take several months after you cut it out. Budesonide will mask food sensitivities, so be sure that all of it is out of your system before you attempt to reintroduce new foods. It takes a while to get budesonide out of your system. Depending on how long you have been taking it, it can take up to a couple of months. If you've been taking it for only four days, it should be gone within a week (but that's a guess).

You will relapse if you stop the budesonide first. If it were me I would start an elimination diet today, and continue taking the budesonide for a few more days or a week, to prevent a relapse. But taper the budesinide dose to 3 mg after a couple of days, and after a couple more days, take 3 mg every other day for a few days. If the diarrhea starts to return, increase the dose and taper more slowly (after taking 6 mg for a few more days). After you're in stable remission, all your symptoms should be gone, except for the fatigue and brain fog. It takes a while for them to fade away, sometimes as long as two years.

I hope this helps. Again, welcome aboard, and please feel free to ask anything.

Tex

Tex,
I cannot thank you enough for taking the time to answer all of my questions. You are a wonderful person!
My diet was already gluten free but maybe traces where sneaking in from the toaster that I share with my family. I have never been diagnosed for celiac or gluten sensitivity and my gluten blood test came back negative twice. The reason I have been on a gluten free diet was because it was the only thing that stopped diarrhea after my gallbladder was removed.
I am currently on 6mg of budesonide and doc said he would asses in a month. The reason I decided to take the meds other than being miserable is because I have been having some really weird symptoms that could be related to something autoimmune but my drs seem to think I’m crazy.
I’ve been having really dry eyes, dry mouth/throat, dry hands, my eyes hurt . I thought maybe a steroid would help curb those symptoms.
I’m 35 and have two young kids and sometimes day to day is hard. Wish everything would resolve with diet.
Should I do my prescribed dose of budesonide or should I taper now and try something else?
Thank you again
Kg

[tex]

The blood tests for gluten sensitivity are so insensitive that they miss about 95 % of cases, according to some authorities. We're all gluten sensitive if we have MC.

Tex

[Erica P-G]

Hi Kg,

Also something to look into is your VitD level and if you have been taking Elemental Magnesium or applying it to your skin liberally. Since you have been reacting quite a bit lately your levels could be very low.

It takes a while to raise these levels when we are reacting too. Common thought is for every 5000iu VitD3 to take or apply at least 400mg magnesium (splitting the dose into morning and night). These two work in tandem so it is important to take/apply at the same time.

I wish you continuous healing
Erica

[brandy]

Hi and welcome to the board,

Yes, you will get better. Yes, you will have a quality of life. Understand healing takes time. The real positive is your age. You are young and younger people heal faster.

I've been on both budesonide and cholestyramine. Understand neither heals us, rather they help get our symptoms under control while we are working on the diet and reducing inflammation.

Is the budesonide helping you to get solid stool? Some people stay on the budesonide for awhile. Some people stay on cholestyramine for awhile. Some people do diet alone. I had a lot of goofy symptoms when I was on budesonide from my initial MC flare right after diagnosis. I'll never know how many of my symptoms were from MC, how many symptoms were menopausal, and how many symptoms were side effects of budesonide. I did see dry eye, eye pain and dry mouth are side effects listed under budesonide https://www.drugs.com/sfx/budesonide-side-effects.html

I had a lot of goofy symptoms unrelated to gut issues when I was in your place. I was circling around between gastro doc, gyn p.a., and primary care physician with my laundry list of symptoms. I really felt like I was getting nowhere.
I remember coming home crying after one doctor visit. Ultimately as I healed the goofy symptoms went away.

I did not have eye pain but I think we just had someone else post about eye pain on the forum. I did have dry eye. Get the PRESERVATIVE FREE individual vials (not bottle) of systane for dry eye (or similar) in the eye section from pharmacy. In Florida they cost me about $18 per box. I get about 4 days out of each vial. Twist off the butterfly end put a drop in each eye. Set the vial on your bathroom counter. You should get about 3-4 days of usage out of each vial. The key thing is to get PRESERVATIVE FREE for dry eye. Also pick up a gel tube for dry eye at the pharmacy. These are in the same section. Apply this before bed. If you use air conditioning put the tube in your bra for an hour before bed. It will soften the gel. Before going to bed put a smidge of the gel in each eye and a drop of the Systane (or similar.) I had to do these procedures for about 6 months and then dry eye gradually went away. Now I rarely have to use the drops.

Best wishes from a North Floridian, Brandy

[brandy]

Kg,

Are you living in Puerto Rico? If so shoot for 20 minutes outside in the sun with bare arms and bare legs (skirt or shorts) to up your vitamin D.

Your gastro doc sounds much better than most.

I'm impressed he/she has had you on pepto, cholestyramine and budesonide.

One of our members, Polly, who is also an md ranked pepto as mildest, followed by cholestyramine and followed by budesonide (strongest).

Pepto is generally not used for longer than 8 weeks as it can cause tinitis.

If you think you need a drug and since you've been on all three I'd maybe settle on the one that you thought worked best for you. If you go with pepto you are looking at an 8 week timetable. If you decide to hang out on budesonide you are looking at 4.5 months or more before getting off of it. If you decide to stick with cholestyramine you are probably looking at several months. None of these drugs will heal you in several days or a week. The drugs help with the symptoms while you work on the diet and diet combined with time and reducing inflammation is ultimately what heals us. Fatigue is the last symptom to go away.

Again, your doctor seems way better than most.

[Mattea]

Hello!
I apologize in advance for the long post.
I am new here, I am 25 years old female and I come from Croatia.
A month ago, after prolonged agony and pain in my abdomen and intestines, I underwent a colonoscopy with multiple biopsies and was diagnosed with focal lymphocytic microscopic colitis.
With this new diagnosis I also have Hashimoto’s, hypothyroidism, gerd, gastritis, Gilbert’s syndrome, hiatal hernia.
My story begins 2017. Pain in the abdomen, ribs, weight loss, jaundice, and inability to take more than a tablespoon of food- I did gastroscopy and got a diagnosis of gerd, gastritis, reflux, hiatal hernia. I manage to bring the diagnosis under control by changing my diet and adhering to certain things like sleeping on an elevated, no food and drink for at least two hours before bed.
After two years of a normal life with adherence to the above, I start getting diarrhea attacks. First every few months, and then more frequently since last year. I lose weight, stay with a very narrow choice of foods (soup, carrots, tea, potatoes, zucchini) and react with diarrhea to everything else. I decide to pay a private doctor to find out what’s going on. He sends me for a colonoscopy on suspicion of microscopic colitis - a biopsy confirms it.
Condition now: I was prescribed budenoside 3x3mg for 3 months then control.
I haven’t eaten dairy for over a year now, fruits, most vegetables, I can’t digest bananas, pineapples or almonds?I'm in terrible pain.
Questions: I haven’t started budenoside yet, what advice can you give me before I start?
What are the most common side effects?
What to look out for?
I was also prescribed emanera to reduce stomach acid, is that necessary with budenoside?
Will I be able to live normally? (I'm only 25 years old and I feel like my life is ruined, I can't leave the house and hang out with people because of my digestive problem)
will I ever be able to travel? I currently get diarrhea every time, and restaurants in Croatia don’t offer any options gluten-free or lactose-free.

Also, I asked my doctors if taking ibuprofen 400 for years (about 5 years) every month (extreme period pain) could cause MC, they all said no but I’m really suspicous and I stopped taking it and now I cry every month in bed beacuse of extreme pain (genetics unfortunately). Has someone on this forum had similar situation? I read one dissertation in which they said that taking NSAIDs could imitate IBD.

In the meantime, I am researching the forum and trying to gather as much information as possible.

Thanks in advance for the answers!


Matea

[tex]

Hello Mateo,

Welcome to the group. You have the same symptoms that many of us had when we came here. Your doctors are wrong — it is very, very likely that 5 years of taking NSAIDs caused your MC (and some of your other problems, also). They probably know that, but they won't admit it. Most doctors would rather not admit that they prescribed an iatrogenic drug, but there are many drugs that cause digestive problems. If they don't know that NSAIDs can cause MC, they know very little about this disease, and they probably have no idea how to successfully treat it.

Yes, you can get your life back if you figure out the foods and medications that are causing your digestive system to be inflamed, and you avoid them 100 %. When we stop the inflammation, our digestive system heals, and it begins to digest food more normally. Please don't take any medications that suppress stomach acid, That just causes other problems, and then we can't digest our food.

Budesonide is a corticosteroid. It will suppress the inflammation in your digestive system and it may stop most of your symptoms. Your doctor will probably only allow you to use it for a few months or so, because of the possibility of side effects. Long-term use causes osteoporosis. When MC patients stop using budesonide 85 % of them relapse. However, we have found that if we change our diet to eliminate all the inflammatory foods, we can remain in remission after we wean off budesonide. The secret is to find a safe diet. Because we are all different, we all require a diet designed specifically for us. With a safe diet, we can heal with or without budesonide.

If you can afford the cost of the tests, the food sensitivity test panels A1 and C1 at EnteroLab (in Dallas, Texas) can be used to detect exactly which foods cause us to react, so it becomes easy to choose a recovery diet that will allow our digestive system to heal. If you can't afford the tests, you can choose a recovery diet that avoids all the known inflammatory foods, and then after you reach remission, you can test individual foods to see if they cause you to react before deciding whether or not to add them back into your diet.

Don't despair. Most of us were in the same situation as you before we figured out a safe diet so that our intestines could heal. We will help you to heal in any way we can.

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

Tex