Reactive Gastropathy - Is it reversible?

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HelpMePlease
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Post by HelpMePlease »

Tex,

I emailed you a few pictures of my fasciitis just in case you are curious. Thank you for accepting my diagnosis. It is just so frustrating for me sometimes because people doubt it or think it's something else. I went on a long wild goose chase for this diagnosis and I know it is correct so it's just exhausting to defend it to so many people. I know it's unique, though.

IV steroids would put me at high-risk for AVN. I would not accept that risk. And, I do not think I would find a doctor to do IV prednisone as my issue is not life threatening. I have thought about asking the doctor to do steroid shots, however. I will look into this maybe.

When I took the acid resistant prednisone it aggravated my stomach. I typically have a soreness in the "pit" of my stomach no matter what, which can be further aggravated by bad foods. When I took the prednisone on Friday it made the whole stomach hurt, in a bigger way. It felt "inflamed" and upset, as if I poured acid on the open wound perhaps. No nausea, vomiting, etc. Just a bigger soreness in the pit of my stomach. It seemed like I inflamed everything. I hope that is a good explanation. Please let me know if it is not. And, I only took 10 mg prednisone (acid resistant) with the daily 40 mg omeprazole earlier in the morning. I don't even want to think about how bad it would have been if I took the full 60 mg dose of prednisone.

I need about 10,000 mgs more prednisone to finish my recovery. After that, I will not need anymore. Unless I get some bad disease or something, of course.

I did have a HIDA scan, barium upper GI Xray, and gallbladder ultrasound. Plus, some blood tests. All normal. I do not think people realize how bad these stomach issues can be. I am typically okay as long as I stick to a very conservative diet. But, for example, I cannot even eat a Caesar salad anymore. And, I love salads! I had a perfect stomach before this fiasco. I am "okay" and not dying in pain unless I have to take steroids. Most people do not have to take very acidic steroids, but unfortunately I need them right now.

I do know that Carafate is primarily for ulcers, but I must say it does ease my stomach issues and is less "risky" than PPI, so I have it in my arsenal if necessary. I was doing 30 ml a day for about 7.5 weeks and then noticed bad fatigue and hair loss so I stopped the daily dosage and my fatigue went away.

Oh my goodness. I want to get off the PPI now that you told me it can cause colitis! That is so scary!

I don't know what to do. I am 34, single, no kids. I want three kids. Clock is ticking. I have a lot of pressure to get better and move on with my life before my childbearing years pass me by.

You said that children heal faster than adults. Is this because they have more human growth hormone (HGH)? If so, there is a doctor who offered me something similar to HGH, I am not sure of the name of it. I know it is controversial but maybe a small dose would be harmless and it could speed up my "healing" time of the stomach so I could then take the steroids? Do you have any thoughts on that? Just exploring my options that have been offered to me.
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tex
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Post by tex »

At your relatively young age, you should heal (assuming that healing conditions exist) within a couple of years, surely less than 3. But the symptoms you describe suggest gastritis. Gastritis typically involves the same type of inflammation that is associated with MC (an increase in the lymphocyte count in the mucosa of the stomach. In fact, gastritis is often associated with MC (though most doctors don't realize that it is associated with MC because MC was originally incorrectly medically described as a disease of the colon).

Inflammation is the first stage of the healing process. With IBD, the immune system gets hung in this stage and healing cannot progress, mostly because the source of the inflammation is chronic. IOW as long as new inflammation continues to be generated, healing cannot progress.

The chronic dull ache that you describe is almost surely a symptom of gastritis. And apparently the prednisone somehow makes the symptoms worse, suggesting that it increases the inflammation rather than suppressing it. I don't understand how a corticosteroid can cause inflammation, but nothing surprises me anymore, and that's certainly not the only thing that I don't understand in this world, and surely it won't be the last.

Have you tried prednisolone? Prednisone, as you are probably aware, is a pro-drug, and it has to be converted (by the liver) into the active form, prednisolone, before it can be used by the body to suppress inflammation. Prednisolone typically has far fewer side effects than prednisone for most users. Since it is the active form, some view it as more potent.

Tex
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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.
HelpMePlease
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Post by HelpMePlease »

Tex,

Thanks a lot. I have never tried prednisolone, but I have to tell you I think it would aggravate my stomach. My stomach is so pathetic I cannot even eat a simple Caesar salad. Over the weekend I was at the theatre and had some popcorn. I knew it was risky to eat but I wanted to see how I handled it. Well, it was bad. I cannot even handle popcorn!

What if I went to the doctor several times a week and had him inject me with steroids? The doctor who would be willing to help me is 1,000 miles away so I need to get a good understanding of this before I move to get treatment.

I talked with some doctors about suppository and they said it would not be well absorbed. And then they mentioned steroid cream but said I would be susceptible to a skin infection or bacerial infection.

I've had enough problems. This stomach is healing at an incredibly slow rate. If I cannot even eat popcorn or a caesar salad right now I cannot handle 10,000 mgs prednisone. Heck, I cannot even handle 10 mg of prednisone if we're being honest.

I cannot wait 2-3 years and just sit on the couch and wait for a magical recovery of my stomach that may never come.

What do you think I should do? I want to think about this before I call my doctor and express my concerns. He is open to letting me try stuff but I want to have a good idea in my head before I call him. Could I get steroid shots from the doctor like 3 times a week? How much could I get? Is that a good idea?
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Post by tex »

HelpMePlease wrote:What if I went to the doctor several times a week and had him inject me with steroids?
I have no idea how effective such injections would be. Your best source of information on medications is your pharmacist.

Tex
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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.
HelpMePlease
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Post by HelpMePlease »

Thank you so much Tex. I am going to talk to my doctor about the steroid shots.

I am just so devastated by this stomach issue because now I cannot take the remaining 10,000 mgs of prednisone steroid for my other issue. It will be the shock of my life if I ever can recover the stomach enough to be able to take the steroids. I have contacted many people on the internet with similar gastro issues from NSAIDs, etc. and most people respond that they never had a perfect stomach again.

It seems like I need a fairly perfect stomach in order to take the steroids again. It's so devastating that a few days of antibiotics could permanently and irreversibly wreck my stomach.
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Post by Gabes-Apg »

I am not sure that things are that bad - there is damage yes, and that is frustrating, but there is loads of options to heal the stomach..

its about progress, not perfection
its about time and the right inputs (avoiding high inflammation triggers and eating the right gut healing foods)

as I mentioned earlier in this discussion thread, we need to minimise inflammation to optmise gut health
hundreds of people in this group have recovered from chronic gut issues and had good gut healing by following these principles..

this news release from this week reiterates what we talk about
http://www.utsouthwestern.edu/newsroom/ ... amage.html
their research suggests that the damage in patients with gastroesophageal reflux disease (GERD) actually occurs through an inflammatory response prompted by the secretion of proteins called cytokines.
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HelpMePlease
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Post by HelpMePlease »

Thanks, Gabes. I saw that article as it was trending in the news earlier today. I am not a science person and some of it was "over" my head.

I just worry it's not humanly possible to recover this stomach. It's been nine months off the antibiotic and steroids and when I take the steroid now, even a tiny amount, it's like WWIII in my stomach. I am nowhere even close to being able to tolerate 10,000 mgs of steroids if I cannot even handle one day of 10 mg. It's devastating because my other health issue is very disabling.
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Post by Gabes-Apg »

as I mentioned in the earlier reply - if you are having gluten and dairy, you are having inflammatory items and the gut will not heal

it is possible to heal, others have done it.

and in the process of reducing inflammation in your body and optimising healing - i am confident it will help the other health issue..
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Post by tex »

Gabes,

That's an interesting article that I hadn't seen yet. But I'm amazed that they are trying to sell the idea as a "surprising" new discovery. Look at this quote from page 180 of my book:
But wait — GERD may be an autoimmune disease
Research done using rat esophagi showed that irritation of the esophagus by bile acid salts resulted in the submucosa being infiltrated by T cells and neutrophils, a phenomenon that is typical of an autoimmune response.30 This discovery appears to place GERD and its treatment in an entirely different light, and further emphasizes the futility of trying to treat it with proton pump inhibitors.
Here is reference 30 from that quote:

30. Souza, R. F., Huo, X., Mittal, V., Schuler, C. M., Carmack, S. W., Zhang, H. Y., & Spechler, S. J. (2009). Gastroesophageal reflux might cause esophagitis through a cytokine-mediated mechanism rather than caustic acid injury. Gastroenterology, 137(5), 1776–1784. Retrieved from http://www.gastrojournal.org/article/S0 ... X/abstract

Souza et al. demonstrated that phenomenon on esophageal tissue from rats way back in 2009

Thanks for the link. I'll probably use that as a research update item in Edition II.

Tex
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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.
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Post by Gabes-Apg »

it is enthusing to see science catching up with what we already knew..

the news article popped up in my Facebook feed this morning via Dr James Stoxon (chicago chiro that has been talking about inflammation and chronic health issues at various conferences since 2012) not sure it will get much 'mainstream' coverage

my only concern now - with all the recent proof that PPI's are causing more health issues than they are resolving..and results of studies like this - are big pharma about to release new anti-inflammatory medications ( to replace the revenue they used to get from PPI's?? )
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Post by tex »

HelpMePlease wrote:I just worry it's not humanly possible to recover this stomach. It's been nine months off the antibiotic and steroids and when I take the steroid now, even a tiny amount, it's like WWIII in my stomach.
I can certainly understand your concern, because everyone here (including me) has a damaged digestive system. But one factor in our environment more than anything else, is responsible for all of us being here (IOW, it was a prerequisite to our developing MC). That factor is chronic stress. We are all overachievers, perfectionists, worrywarts, etc, and stress was our companion in virtually every step of the way in the development of our IBD. Stress is a prerequisite to all digestive system disease. Not only does stress prevent healing of damage to the digestive system, but chronic stress is capable of actually causing physical damage to a healthy digestive system.

If your descriptive phrase, "it's like WWIII in my stomach" means what it appears to mean, that defines your problem — the main reason why your stomach is unable to heal. Stress is not only preventing healing, but it is probably contributing to the damage. If I were in that situation, and knowing what I now know about the effects of chronic stress, I would do whatever it takes to stop worrying about the problem and find some good ways to relax, because IMO chronic stress is the main problem that is preventing your damaged stomach from healing. I'm not a doctor, so this is obviously just my strictly unprofessional opinion, but it seems clear that stress is having a profound physiological effect on your stomach.

Maybe it's not possible for your stomach to fully recover (without making some changes), because research shows that one's attitude and emotional state in general can be as important to healing and recovery as any other part of the treatment. In some cases attitude can have a dominant effect that supercedes everything else. Some individuals have made miraculous recoveries against all odds because of their "can-do" attitude, while others have literally worried themselves to death over benign issues.

I certainly don't claim to be an expert on ways to relax and stop worrying, I just know that I had to learn to go with the flow, downshift a gear or 2, and let go of about a zillion and one items of excess baggage in order to help my gut heal. At the time I didn't know what else to do — I just knew that I couldn't continue to live that way.

Tex
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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.
HelpMePlease
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Post by HelpMePlease »

Thanks, all.

Tex, my stomach is "decent" except when I take the steroids. When I take the steroids it seems to be the equivalent of pouring acid on an open wound. No stress relief is going to change that, it's the nature of the beast right now. And, I hope, not forever.

Time is going to reveal the truth. I hope you are all right and I am very wrong!
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Post by HelpMePlease »

Tex,

I have spoken with two GI's in the past 24 hours. Both said after nine months my stomach is not going to heal any further. It's so upsetting.

Do you know of anyone else on these boards who was able to recover from gastritis? And, if so, for how long did it take them to recover the stomach?

Thanks a lot!
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Post by Gabes-Apg »

That is sad the GI's feel that way and said that to you.

if you are interested there are quite a few people that have healed from chronic inflammation illness.. (despite what mainstream doctors have told them)

these people made diet and lifestyle changes to minimise inflammation and optimise healing.. and share the information on how they did it.

http://terrywahls.com/about/about-terry-wahls/

https://www.bulletproofexec.com/about-dave-asprey/
Dave was chronically ill from mould toxin illness. He has free podcasts with a wealth of information about 'getting well' and having optimal wellness, energy and focus.

you dont have to buy the expensive supplements, getting onto the right low inflammation eating plan, using basics like Vit D etc, minimising stress and external triggers will help.

I hope this helps

Also - have you read the posts in our Success Stories area, it has lots of people that were chronically ill with MC /Digestion issues that have healed and got their lives back.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=71
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Erica P-G
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Post by Erica P-G »

Long shot here....but if the stomach is as smart as we make it out to be regarding what it deems as safe for us perhaps the "WWII" response to steroids is its way of trying to communicate that it does not want it, period.

When that happens a different solution needs to be sought after which in this case appears to be diet driven. Most Mc'ers have seen great relief going Gluten, Dairy, Soy and Egg free and seen their symptoms of stomach ailments resolve on their own. I am one of those people, I had terrible acidic stomach for a good 5 years, I got tired of it one day had a colonoscopy and endoscopy (which were very normal) and GI put me on a terrible amount of PPI (Omeprezole), gave me the Prednisone treatment after I stopped the PPI, but the PPI made my stomach flair more than it helped it, but by weeding out my food (and this took me a couple months) I do not get acidic stomach anymore.

I hear lots of hesitation in this conversation and theirs no shame to it....when we feel really crappy and are looking for answers we want suggestions to work right away....unfortunately it's not quite that simple for many of our ailments. I wish it could be....

I wish you luck, and a very speedy healing :grin:
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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