Help! Newly diagnosed with LC

[kbrents1]

Thanks for this forum. I'm desperately I'll and seeking answers. My odyssey started with debilitating nausea and diarrhea in July 16. Doc ordered Hida scan and after the score was determined to be 11 he and the specialist said taking out my gallbladder would fix the problem. The surgeon said I had a calculous gallbladder, no stones. However, I keep losing weight and have horrible nausea and diarrhea. Doc prescribed welchol and that helps tremendously with the diarrhea but the nausea is horrible still. Finally in September 16 I had endoscopy and colonoscopy that revealed LC. Question one, is the LC related to my gallbladder problem or vice versa. Two, the GI doc has prescribed lialda mesalamine but I'm terrified of the side effects. Three, I've been on PPI therapy for 20 years. Could eliminating PPIs cure my LC? Four, is nausea common with LC? Finally, is it possible to achieve remission without diet changes? Thanks for any help. My life is in shambles over this condition.

[tex]

Hi K,

Welcome to our Internet family. We consider ourselves a family because no one truly understands what living with this disease is like unless they actually have it. Here, everyone understands.

I'll try to answer your questions.

Question one, is the LC related to my gallbladder problem or vice versa.

Gallbladder issues are somewhat common with LC because the inflammation that causes LC can affect any organ in the digestive system. This is particularly true in cases where there are no significant gallstone issues noted. Gallbladder issues probably don't cause LC, but LC can and often does lead to gallbladder problems. Most LC patients find that after they resolve their LC symptoms, their gallbladder issues fade away. Most gastroenterologists are not yet aware of that connection, unfortunately. That has lead to the unnecessary removal of many a gallbladder.

Two, the GI doc has prescribed Loads mesalamine but I'm terrified of the side effects.

Mesalamine usually doesn't carry what I would rate as a high risk of side effects for most patients, but it is not particularly effective at treating LC, either, though it seems to be helpful in some cases. The most common side effect seems to be hair loss.

Three, I've been on PPI therapy for 20 years. Could eliminating PPIs cure my LC?

There is a very good chance that the PPIs are responsible for causing your LC. If they had triggered the disease within a few months after you first began to take them, and you had stopped taking them then, there is a good chance that stopping might have resolved your LC symptoms permanently (as long as you continued to avoid them). However, after 20 years of use, the odds are very slim that stopping them will resolve your symptoms without further intervention.

The problem is that long-term use of PPIs causes irreversible changes to the parietal cells in the stomach (the parietal cells produce gastric acid and intrinsic factor). Stopping PPI use will allow eventual partial restoration of the histology of the parietal cells, but they will probably never return to normal. That doesn't necessarily mean that this will cause significant long-term digestive issues, however. In most cases functionally will slowly return to acceptable levels.

That said, it's certainly worth a try, because even a long shot sometimes hits the bullseye. And it is very, very unlikely that remission of LC symptoms can be achieved as long as a PPI is used. In most cases, remission (of LC symptoms) cannot be obtained without ending the use of PPIs, regardless of any other treatments used. The PPIs will prevent virtually any treatments from working effectively to control the LC symptoms. Unfortunately most doctors tend to ignore the label warning on PPIs that they should not be used longer than 2 or 3 weeks continuously.

Four, is nausea common with LC?

Yes, nausea is very common with LC. Based on epidemiological data shared by the members here, at least a third of us have serious nausea issues. In my case the nausea was so bad that it often prevented me from doing my job. Back then (about 15 years ago) I had no idea what was causing the nausea. Since then I have learned that a chronic magnesium deficiency was the problem. All IBDs (including LC) deplete magnesium and prevent it from being adequately absorbed from food.

And PPIs are the worst for depleting magnesium. After 20 years of taking PPIs, your magnesium deficiency has to be very severe, even if you have been taking a daily magnesium supplement. Consider this quote from the book Pancreatic Cancer:

As an example of how serious the problem of drugs interfering with the absorption of magnesium can be, consider the first paragraph of a warning issued by the FDA regarding the use of proton pump inhibitors (FDA Drug Safety Communication, 2011, March 2):10

[3-2-2011] The U.S. Food and Drug Administration (FDA) is informing the public that prescription proton pump inhibitor (PPI) drugs may cause low serum magnesium levels (hypomagnesemia) if taken for prolonged periods of time (in most cases, longer than one year). In approximately one-quarter of the cases reviewed, magnesium supplementation alone did not improve low serum magnesium levels and the PPI had to be discontinued.

Note the last sentence in the quote, which has been emphasized here with in red for the purposes of this discussion.

Here is reference 10 from that quote:

10. FDA Drug Safety Communication: (2011, March 2). Low magnesium levels can be associated with long-term use of proton pump inhibitor drugs (PPIs). U.S. Food and Drug Administration [Web log message]. Retrieved from http://www.fda.gov/Drugs/DrugSafety/ucm245011.htm

Finally, is it possible to achieve remission without diet changes?

Yes, it's possible. With any IBD, spontaneous remission is possible for varying periods of time. Unfortunately only a relatively small percentage of LC patients are fortunate enough to be able to enjoy spontaneous remission.

In cases of drug-induced LC, sometimes stopping the use of the drug that triggered the disease can bring lasting remission, but this mostly applies to cases that develop soon after the drug treatment is started.

Anti-inflammatory medications (such as mesalamine or budesonide) can sometimes bring remission for some patients without any diet changes. Unfortunately though, soon after the drug treatment is ended, the symptoms usually relapse if the proper diet changes have not been made.

Thanks for any help. My life is in shambles over this condition.

You're very welcome. This is a life-altering disease and it is very difficult to control without a good treatment plan combined with hard work and dedication. Many members find that the most effective treatment is to combine an anti-inflammatory medication with diet changes in order to bring remission more quickly. That way the medication can mask the symptoms while the diet changes are healing the digestive system. It may be helpful to read some of the Member Success Stories.

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

Tex

[kbrents1]

Tex, thanks for your response and insightful advice. I've been looking through your website for several days and I'm truly in awe of your dedication and effort on behalf of the MC community. God bless you sir!

[kbrents1]

I'm taking Caltrate 600plus D. Is this sufficient for vitamin D. Also, what magnesium supplement do you recommend?

[tex]

That product contains twice the RDA for vitamin D, but unfortunately the RDA for vitamin D is woefully inadequate for most people, and especially for IBD patients. Most members here take about 10 times that much vitamin D (or more) because IBDs (including LC/CC/MC) deplete vitamin D, and virtually all of us are vitamin D deficient unless we take a significant amount of supplemental vitamin D.

Doctor's Best Chelated Magnesium (magnesium glycinate) is probably the most popular magnesium supplement here because it is usually well absorbed and and less likely to cause diarrhea in higher doses than most magnesium supplements.

Some members here, especially those who have trouble absorbing enough magnesium, use a concentrated product known as ReMag, sold online by Dr. Carolyn dean.

Thank you for the kind words. I hope that you can find your solutions here and regain control of your life.

Tex

[Gabes-Apg]

Welcome!!!
Tex has answered your questions....

Just wanted to say hi!
And encourage you to look at the guidelines to recovery section. For some new members reading various discussions life with MC can sound full on, albeit finding your safe ingredients and sticking with the bland, low amount of ingredients eating plan is a good way to optimise healing....

Happy healing...

[humbird753]

Welcome! I also just wanted to hi. You will find a lot of helpful information here, and will be encouraged by the success stories.

[sunny]

Here's another welcome!
I have learned so much by reading all the information that has been provided here on this site. I try and read every day and doing so has helped jump start my knowledge base. I think knowledge about this disease brings some level of comfort so that you don't feel so much in the dark. We learn from each other and our experiences...you have come to the right place.
Sunny