New DX of MC

[ewelder]

Good morning all,

I am so excited to have found this forum. I was recently dx with MC about 3 weeks ago after about a 3 month struggle. I have felt very alone and not knowing any real answers until I found this forum. I have started Uceris 9 mg once in the morning about a week ago and it has stopped by digestive system completely. I have gone from 20 runs to the bathroom a day/night to nothing. I go again to my gastro to talk more today. I feel as though I have been hit by a bus; terrible fatigue; emotions all over the place, achy body, tightness in my chest; fainty/weak feeling if I stand up for too long, a weird empty feeling in my stomach along with some nausea, and just all around ill feeling. I have only begun to read the wealth of info on this forum. As I have read, it looks like my first line of defense is to cut out gluten. I have gotten blood work done and everything looks normal except low protein and low monocytes. I called the doctor and the PA didn’t seem concerned..... I also am not sure if I need to go get a second opinion from another doctor or I am good where I am. I live in a smaller town and if I see another dr I would need to head up to Houston. I feel so lost right now, but I have found enormous relief with just finding you all. I am welcome all advice and insight you all may have for me, as I am struggling with this at the moment.

Cheers,

Eliza

[tex]

Hi Eliza,

Welcome to the group. The symptoms of MC are often much more severe than the medical description would indicate. Consequently, most doctors don't understand what is causing all those symptoms and they try to find other reasons. When they can't find other reasons, some doctors will try to convince the patient that those symptoms are just imagined.

You would be unlikely to find a doctor who has a better understanding of how to treat MC in Houston. Very, very few gastroenterologists actually understand how to successfully treat this disease. Most of us just use our doctors to obtain any prescription we want, and run tests for us. We decide how to treat this disease, ourselves, because most GI doctors don't have a very good record for being able to successfully treat MC in the long-term. Medications such as budesonide will often stop the symptoms for a while, but 85 % of patients relapse after the treatment ends.

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

Tex

[rcchild@gpcom.net]

Eliza,
Glad you found us. This disease is a very lonely disease, but being here has made life easier, for me anyway. There is so much useful information on this site and the members are very supportive. Feel free to ask questions and make comments. A good place to start would be the Guidelines for Recovery and the Stage 1 Eating Plan. Also I would read Wayne's book, if you haven't already. Read Microscopic Colitis first and then Understanding Microscopic Colitis, if you want to go deeper.

I joined last May, 2019 after being diagnosed with LC. I'm on a very strict diet for the time being and I'm doing better - not nearly as well as I want to be, but healing takes a long time in some cases. I keep searching for answers and I find one on occasion, but then it's time to search for the next piece of the puzzle. There are many success stories so, when I start worrying that I'll never find remission, I read about the successes that others have found and that keeps me going.

There are no easy answers for this disease, but I believe this group has the best options and the best success by far. I'm really glad to be here and hope you will be too.

Good luck with your journey. Keep us up to date with your progress and please do ask questions.

Carol C

[ewelder]

Hello all,

I had an endoscopy today, after the recommendation of my Gastro. This is what he found took biopsies of. Just curious if any of you have any thoughts....my thoughts are that I am gluten sensitive and the results are just irritation from that?

Z-line irregular
Erythematous mucosa in the gastric body and antrum
Congested duodenal mucosa


I also see on the report were he is getting an evaluation for celiac. Regardless, I have just started a gluten free diet, I am dairy free (just wasn’t real strict), I also do typically eat healthy, no processed and fast food etc.


Thanks for any input and I typed this on my iPad so please over look any grammar or misspelling

Best to you all,

Eliza

[tex]

Hi,

In my opinion, you are quite correct. Because of the fact that virtually all of us are sensitive to gluten, MC can affect any organ in the entire gastrointestinal tract (and it often does). Many of us even have mouth sores, when our MC is active.

Thanks for the update.

Tex

[ewelder]

Hello all,

I have begun having foot cramps again. They had gone away for a bit and have returned at night. I remember seeing something on this site regarding them, I can't seem to find it. Is it a deficiency or dehydration? Any thoughts from you all?

Thanks everyone!!

Eliza

[tex]

Hi Eliza,

It might be from dehydration, or potassium deficiency. But the most likely problem is magnesium deficiency. MC depletes magnesium, and the budesonide in Uceris also depletes magnesium, so you are almost surely magnesium deficient. Magnesium can cause diarrhea, especially early on while we are still recovering. Most of us take magnesium glycinate, because it's the least likely type of oral magnesium supplement to contribute to diarrhea. Some people have to wait until they are in remission to use even magnesium glycinate. If you're taking Uceris, though, you should be able to tolerate at least 200–300 mg of magnesium glycinate. If you can't, you may have to use topically-applied magnesium.

Tex

[ewelder]

Hello,

I received my results today from the dr. Just wanted to get yalls thoughts....chronic gastritis, chronic carditis, and Barrett's Esophagus. I am assuming this means I have GERD? He prescribed Famotidine and pantoprazole. Is this all part of CC? This is just the dumbest thing I have been through, ugh.

Thanks for any input!!

Cheers,

Eliza

[ewelder]

Well Tex, I went and referenced the MC book when I got home....I found my answers there!

Eliza

[tex]

Hi Eliza,

Sorry abut the added complications. I hope you are aware that the proton pump inhibitor (PPI), Pantoprazple, will cause major problems if you decide to take it. The Famotidine is an H2 antihistamine, so it's generally safe to take.

I don't recall if this in the book, but in case it isn't, here are my thoughts on PPIs:

The PPI is a dangerous drug in that it has many major side effect issues that will cause you to eventually regret ever using it. In the U. S. it has black box warnings by the FDA for causing osteoporposis, bacterial infections (such as C.diff), chronic magnesium deficiency, serious kidney damage, etc. The worst part about PPIs is that they cause the very symptoms they are prescribed to treat. If you use them for a couple weeks or more your body will develop a dependence on them and when you try to wean off the PPI, you will have an acid rebound that is worse than it was originally.

The best way to handle GERD is to avoid the foods that cause acid reflux, such as tomato and other citric acid sources, chocolate, fried foods (grease), alcohol (especially red wine), black pepper, garlic and other spicy foods,caffeinated drinks, especially coffee and soda, and peppermint. Avoid eating at least a couple of hours before bedtime.

Never lie on your right side when in bed )this places the lower esophageal sphincter (LES) below the stomach, encouraging acid reflux if the LES does not remain tightly clinched at all times. Elevate the head of your bed a few inches with blocks if necessary.

And as Gabes says, most importantly, taking 8,000–10,000 IU of vitamin D and at least 300–400 mg of magnesium (or the topical equivalent) daily will help your immune system to heal the damage and stop your LES from spasming and allowing acid to backflow into your esophagus.

But you need to avoid using a PPI in order to do that because PPIs weaken the LES and guarantee that you will have a backflow/reflux problem. They work by neutralizing the acid so that you cannot feel it when it refluxes, but this weakens the LES because the weaker the acid on the backside of the LES, the less tightly the LES clinches. Pretty soon it loses so much of it's clinching strength that it leaks almost constantly.

Tex

[ewelder]

Hello all,

Sooo, last night I took my daughter to eat at Olive Garden, her choice of course. We rarely eat out, and I tried to go safe...ate grilled salmon and broccoli, one glass of a sauvignon blanc, and ate two tiny pieces of fried calamari. We rarely eat out and not sure what was the culprit, or just the restaurant food in general. About 20 minutes after eating the heartburn and acid reflux started (I assume that is what it was) it felt like tiny kittens were trying to claw their way out of chest and up through my throat. This lasted all night, it was a real treat. My throat, all the way down my chest is raw feeling this morning from all that. I was prescribed the PPI and I think pepcid, I have not taken those for obvious reasons. Any suggestions on natural ways to calm this, if it happens again. Apple cider vinegar? Suggestions please, as that was miserable.

Thank you all,

Eliza

[tex]

Hi Eliza,

Heartburn and acid reflux are common problems when MC is active. The safest, effective remedy for heartburn or acid reflux is an H2 antihistamine, such as famotidine (Pepcid), cimetidine (Tagamet), ranitidine (Zantac), or nizatidine (Axid). These will generally relieve the symptoms without the side effect problems caused by PPIs. Since we're all different, for a few of us, H2 antihistamines have been known to trigger MC, but as far as I'm aware, that's a relatively low-risk possibility.

Tex

[ewelder]

Hi Tex,

Should I take the pepcid only when it is acting up or for a consecutive amount of time? I don't want to do anything to jeopardize my MC from healing.

Thanks,

Eliza

[tex]

Unless you almost always have the symptoms, I would just take it as needed. I believe that's what most of us do. The effectiveness normally only lasts for a few hours, so there wouldn't be much to gain unless you took it before every meal. But the longer/more often you take it, the more likely you are to develop an intolerance to it. I'm referring to months of use, rather than weeks, but since we're all different, that point would be hard to predict. As far as that goes, it might never cause any problems if you took it for many years.

Tex

[dolson]

Welcome aboard! This is your family like this is my family. Tex is my doctor along with his smart monitors. I don't know what I would've done without TEX! He is Brilliant and will help you immensely. He is Wonderful!!!!!!

I am glad you found us and if we can help in any way, we will. I am still on the learning curve. This can be a hard nut to crack but have no fear, we are here and things will get better. It has for me. Your friend, Dorothy