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thursdayschild
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Newbie here

Post by thursdayschild »

Hello everyone, I'm a 58-year-old female who was diagnosed with lymphocytic colitis earlier this year, after I started having very frequent diarrhea, urgency, and accidents, along with leakage (sorry if TMI, but on a board called "The Potty People" somehow I think you'll forgive me). I was diagnosed by a colonoscopy and at the time I didn't realize what this really could mean. I am only just starting to realize that a whole host of symptoms I'm having could all be caused by this. The gastro doc wanted to put me on medication and schedule follow-ups and she didn't really stress it, she said it was up to me, and stupid me, I originally thought it was just diarrhea and it would go away eventually.

However, lately I have been having severe depression, mood swings, loss of energy, feeling ill most days (flu-like), muscle cramps and spasms, joint aches so that I can't bend my knees when standing, can't go up and down stairs, headaches, jaw pain, insomnia (which is the WORST)... the list goes on and on. I have been in and out of my GP's office like there's a revolving door. We've been trying various antidepressants, Naprosyn for the joint pain, etc. Could this really all be part of the colitis?

And quite honestly, reading here about the foods I can't eat right now is about as depressing as the illness. Hard to believe that raw fruit and veggies are bad on any diet - let alone not being able to eat bread, ice cream, pizza, cake, fried chicken........... I guess now I will finally lose weight! It's already started because I'm eating so little right now.

Anyway I just wanted to say hello and introduce myself, I'm glad this forum is here, and I will continue to read all the advice and articles and try to soak up as much as I can.

Thanks!
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tex
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Post by tex »

Hi,

Welcome to the group. Yep, you have us figured out — this is one place where it's OK to be potty-mouthed (since it's necessary for accurately describing some of the symptoms).
thursdayschild wrote:Could this really all be part of the colitis?
Yes it could. This a much more complex and debilitating disease than most gastroenterologists realize. Most of the worst symptoms are due to the increased intestinal permeability (leaky gut) that causes the food sensitivities (and the food sensitivities are the reason why the symptoms are perpetuated).

The diet is not easy, and rigorously following it is no fun (especially early on), but it's really the only game in town for long-term relief for most patients. And some food groups can be added back into the diet after remission is achieved and the gut begins to heal. After you get a taste of how much more enjoyable life can be without all the symptoms, the diet won't seem so bad. It will become second nature and the new norm.

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

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
brandy
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Post by brandy »

Welcome! I recommend Tex's book which is linked at the upper right hand corner! You are at the right place!
skp
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Post by skp »

Welcome! You have come to the right place. There is much information to be had on this forum and a wonderful, understanding group of people with MC.

I did see that you are taking Naprosyn for your joint pain. NSAID's have been known to possibly cause MC. If I can find the link here I will send it. Joint pain has not been a problem for me but it has for others and they can share what has worked for them better than I can.

Susan
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Post by tommyboywalker »

Welcome Thursdayschild,

You have come to a place of great support and very valuable information.

Yes, diet has a LOT to do with healing. Don't think there is a whole lot of debate around that here! Personally, I am both gluten free and dairy free while I heal. My Lymphocytic Colitis started after a parasitic infection (Cryptosporidium) that coincided with high dosages of Naproxen Sodium which we feel was the perfect storm for the Colitis to develop.

I have stopped taking all Naproxen Sodium and all other NSAIDS. It was very difficult for me to do this as I have a chronic pain condition and a knee that needs replacing but my GI doctor and I felt that removing all NSAIDs was very important for GI healing.

Spend some time perusing all of the topics on this site. Ask any questions that you might have .

If you are struggling, many of us go on the corticosteroid Budesonide while we heal. Most all GI doctors would be very familiar with Budesonide. It has sure helped me turn things around. Lots of information on this drug here on this site. Others though tackle it with diet alone. Everybody needs to figure out what works best for them.

Best of luck to you and welcome to the site! And I would second that you absolutely get a copy of Tex's book on Microscopic Colitis. It will explain a lot to you and is really the only book I have found specifically on this disease.
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carolm
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Post by carolm »

Hi Thursday’s Child,
When in a flare I also had flu- like symptoms (nausea and generally feeling ill). That ‘foggy brain’ feeling is typical when a flare hits. Although I didn’t have joint pain, many others here did. It’s all the result of inflammation all over your body. Sorting out food sensitivities will be key to getting in remission. I also took Budesonide for a little over 4 months. It basically bought me time to get my diet in order so that once I was off Budesonide I didn’t rebound back into a flare. I initially was gluten, dairy, soy and egg free, plus when very ill and first diagnosed I had to drop caffeine, sugar, fiber, and eat low fat.
So you can get past this initial stage and it’s not easy, but you’ll be glad you did once you start getting your life back and feeling more normal.

I’m sorry you had to find us but you have come to the best place for guidance toward remission.

Best wishes,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
eshuler
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Post by eshuler »

Hi Thursdayschild,

I had many, if not all, of the same symptoms accompanying my GI symptoms of MC. Doctors now are starting to consider MC an autoimmune disease, so it would make sense that you would have global inflammation and symptoms associated with it.

My main symptoms (other than the D, the stomach cramps, and nausea) were fatigue (want to sleep all day, can't get up to go to the bathroom without feeling tired), brain fog, insomnia, joint pain, muscle aches, and low-grade fevers.

When I changed my diet and started on Saccharomyces boulardii, most of my GI symptoms went away, except the cramping. The rest of my symptoms seemed to get a *little* better, but not much. I am now taking Magensium and D3 on Tex's recommendation for the cramps and LDN (low-dose naltrexone) for the other symptoms.

The LDN has been a godsend for the fatigue, joint pain, insomnia (I've never slept better!), fevers, and brain fog. I have energy, my back doesn't hurt all the time, and I can get up in the morning and do complex tasks without my brain shutting down or fogging over.

The LDN hasn't done anything for my GI symptoms, but for the peripheral symptoms it is literally a miracle.

Monique has a few threads on here about LDN and how it has helped her as well. I'd search the site for LDN and do some reasearch. It might just help you!
Kind Thoughts,
Liz
annaluigia
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Conflicting diet and meds

Post by annaluigia »

Hi, it's been awhile since I've been on this forum. So, I'm a semi-newbie because I've probably missed a lot.
I've been recently diagnosed with hypertension/AKA high blood pressure. I'm taking Lisinopril, 5 MG. I've never had to be on blood pressure medicine. The side effect I've experienced so far is an annoying cough, off/on. I'm very aware that diet and exercise play a huge role in lowering blood pressure. Of course, I did some research because I'm trying to find natural alternatives to medication. Here's the drumroll, the MC diet can be bad for high blood pressure, and vice versa. So, here I am, caught between two opposing diet regimens, and advices.
If anyone on this forum has had or has a similar problem, please advise! I'm open to any input and look forward to maybe a dietary compromise? I'd rather take care of both of these problems without medication. I already take more than I want to for other issues, including thyroid and cholesterol. I know that eating proper food is a better alternative to pretty much anything, if possible.
I'm reading Mr. Persky's book again. It's true that the knowledge you obtain in his book you will never find in a Gastroenterologist's office!
Thank you in advance!
Anna
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tex
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Post by tex »

Hi Anna,

A dry cough is a known (common) side effect of lisinopril. 5 Mg of Lisinopril is a very low dose. If it's causing a cough, even at that low dose, you probably should ask your doctor to recommend a different hypertension medication.

MC (and the other IBDs) causes magnesium deficiency. The budesonide often prescribed to treat IBDs also causes magnesium deficiency. Most people in the general population are already magnesium deficient, so when they develop MC, they often tend to develop a serious magnesium deficiency. Magnesium deficiency causes hypertension and magnesium treats hypertension. You probably won't hear that in a doctor's office either, because magnesium isn't even on most doctors' radar.

If you want to test your magnesium level before taking a magnesium supplement, the serum magnesium test (which is what doctors always select for some strange reason) is almost totally useless. The reason why the serum test is almost useless is because it measures magnesium in the bloodstream even though the blood contains only about 1 to 2 % or the total magnesium in the body and the blood level of magnesium is closely regulated because magnesium is a vital electrolyte. So the serum test is always going to show a "normal" result unless there's virtually no more magnesium left in your body, which means that you are at a serious risk of having a heart attack.

The red blood cell (RBC) magnesium test measures the amount of magnesium in your red blood cells. It's a much more accurate test. But the so-called "normal" range listed for magnesium is just plain wrong. Why? Because approximately 80 % of the subjects in that study were magnesium deficient, so the "normal" range for magnesium is based on corrupt data. I agree with Dr. Carolyn Dean who says that the correct normal range for the RBC test should be at least 6.0–6.5 mg/dL. Most labs show the "normal" range as 3.9-5.8 mg/dL. Here's a reference:

Magnesium RBC Blood Test

It will take a while before you see magnesium lowering your blood pressure, so you may need to continue taking a hypertension medication for a while, but eventually you will probably need to lower your medication rate or stop it altogether as the magnesium begins to take effect.

Welcome back.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
annaluigia
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Post by annaluigia »

Many, many thanks, Tex!

I know that magnesium is a very important part of the body's needs, and now you shed even more light on its importance! I've recently taken a complete blood "panel" test, whatever that is, but I have no clue about the inclusion of magnesium in that test. I won't get results until the 19th of Sept., which is the earliest my GP can get me in for a physical. In my opinion a physical should be in the lab report and that I shouldn't have to wait that long for results! I also take D3, B12 sublingual, and probiotics.

Thanks for mentioning the RBC blood test. That's something new to me. Makes me wonder if it's new to my doctor too?? Yikes. I will read the reference you added. This is all very important information you opened my eyes to that I value and appreciate, and I'll definitely look into it further. Meanwhile I'll also check out the diet topics on this forum. Hopefully there aren't too many conflicts in the right foods for each problem, MC and hypertension.

I see that you have an updated issue of your book available! Do you think the updates are even more beneficial? I don't want to miss anything new!

It's great to be back!! Thank you!!
Anna
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tex
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Post by tex »

Hi Anna,

No, In my opinion the updated version is not worth buying if you already have the original version. The updated items mostly pertain to things such as updated references (some Internet references change from time to time), and slightly more detailed descriptions in a few situations, but the information is basically unchanged.

If you want to see additional information and new insight about the disease, you might be interested in Understanding Microscopic Colitis. It contains mostly new information that's not in the other book.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
annaluigia
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Post by annaluigia »

Thank you for you honest opinion, Tex. I will review "Understanding Microscopic Colitis", as you advised.

I'll be checking back soon, primarily to catch up on different topics and to see how people are managing their individual MC. Also I'd like to see if others are having similar problems with selecting the right foods for MC which may be wrong for high blood pressure. That can be tricky!

Later!
Anna
Sammy
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Post by Sammy »

Hi I am new to this site and glad to have found it. Diagnosed MLC Aug 2017. Have had problems with diahrea off and on for years 2004 is when it began. Finally went to ER last August. Was
Diagnosed by colonoscopy with biopsies and abdominal ct. Budosenide for three mos. 3 3mg daily then two then one a day for final month. My Primary care physician has been testing me for autoimmune disorder for
Since 2007. Endometriosis with hysterectomy right ovary intact. Hypothyroid fibromyalgia sgjorns polyarthralgia and of course MCL. Upper endoscopy revealed throat stricture and dialation performed. Omoprazole 40 mg daily. No celiac disease. Mother passed with ovarian colon cancer. No mass. That is some history.
Okay so here’s where it gets strange. Off Entocort (budosenide) for several months. New issue! I am
extremely distended constipated and bloated to the point of not being able to empty my bladder completely treated with Cipro for UTI and now having severe constipation with lower right and left sides abdominal pain rectal pain of course I do have the raids I feel like I have to go all the time go a little stand up and feel urge to go again but cannot. Have apt with gastro doctor Thursday. It has been over a year since last endo and colonoscopes. Does this sound familiar to anyone? I cannot believe I am here writing about my poop problems but am reaching out to anyone who can give me advice for upcoming apt. Thanks you all so much!
Sammy
annaluigia
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Post by annaluigia »

Sammy, I am writing to you primarily to welcome you to this amazing forum! And remember, that even though we here are all full of, well, poop and we tell each other about it, there are many amazing people here that could very well help you! Where else can you do that???
I'm not familiar with many of the problems you've mentioned. I'm also not an expert on medication, only ones I've taken and effects they've had on me personally. In my personal, non professional opinion, many of the meds you're on may be causing the constipation. As you will see on this site, diet plays an essential part in healing.
For me, dairy and gluten play on number on me, and I'm uncomfortable, to say the least, the entire next day after I've eaten them.
I'm not satisfied with my GI doc, but for constipation he advised Miralax and Pepto Bismol for diarrhea. In my case they work pretty well, but I do have to watch that I also take care of what I eat! Lots of water helps, especially room temp or warm, for constipation. Exercise as much as possible or just walk. It's a lot of trial and error, and everyone is different, as you will see as you read many helpful experiences. You will always find someone that shares some of your problems.
I hope there are people here that can help you further. I've had diarrhea and constipation, sometimes at the same time. I can only suggest to learn about gut health, enzymes, magnesium and take advice from those who are familiar with what you're going through. And please read Mr. Persky's book, Microscopic Colitis. It's a real gem! You can go online and also find tons of info, but his book has more than enough info that you may not ever heard of!
I wish you well. I really hope you find some relief!
Anna
Teresa Temos
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Post by Teresa Temos »

Hi everyone, I too am a newbie much like thursdayschild. However, I was diagnosed with MC awhile ago. Maybe 2, 3 years ago BUT have actually been living with it for about 4+ years and never knew it as my D would come and go until one day I realized I've had D for a few months straight! thought this can't be right. Well behold MC. From there my GI told me it's not the worst thing and to just take Metamucil every morning and I would be fine. No mention of food changes, NOTHING! So I did this and it did help quite a bit but I still get some of the symptoms and it seems to be elevating. Sleep, fatigue, no energy as I used to be very energetic, still D sometimes, cramps and bloating. I keep getting mixed information about what foods to eat or not eat. I'm now beyond the point of overwhelmed! Just don't know what to eat anymore or drink for that matter other than water and I feel completely lost that I can't hold my tears back. I really have no home support mostly because of the lack of education on this subject and feel like there's some denial involved. I really don't know where to go from here. I'm a young 54, I exercise regularly and for the most part try to eat healthy. Now I haven't a clue what is or what's not healthy for me. I really hope this forum can help. Everyone seems so kind and I at least don't feel so alone anymore. :roll:
Teresa Temos
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