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terre
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Post by terre »

Thanks for your concern Joe.....I have even commented to my husband that is looks like coffee grounds. The only reason I think it has to do with the Pepto is that is didn't start (grainy black) till I began the Pepto (which always makes my stool black). I say grainy because it feels like sandpaper coming out. Ouch!

Thank you for caring,
Terre
Fiona
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Post by Fiona »

Terre, the black, grainy stool started when I began taking the Pepto as well. Plus, for me, it's not a different color with black coffee grounds mixed in. It's entirely black and appears (and feels, as you said) solid, but it looks grainy or flaky in the toilet and even more so once I flush. If the flaky black appearance in my case were actually internal bleeding instead of a Pepto-induced side effect, I'd be dead by now. What Tex said about the chalky nature of Pepto makes perfect sense to me as far as why the texture is what it is. Diet-wise, I'm practically fiber free at this point, and the BMs still have the grainy, flaky texture that they've had since the beginning of the Pepto treatment, so I sincerely doubt that it's internal bleeding or fiber that's behind it. Hope that helps!

Fiona
terre
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Post by terre »

Yep, Fiona, yours sounds exactly like mine....comforting in a weird sort of way. :roll:

How long have you been diagnosed? Can I ask your age...I'm 57. I see you're in TX, I'm in AR. Please keep me posted on how you're doing when you finish the Pepto.

I know of a 72 yr. old woman who was diagnosed right after me, she had to go on antibiotics (can't remember why) - anyway she is now in remission.....I am so jealous (in a good way).

Terre
Fiona
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Post by Fiona »

Terre, I'm 39 years old and have been dealing with this issue since late May but have had no digestive issues at any other time in my life up to now. At first, I was told I had a virus, which made sense at the time given the high volume and frequency of the watery diarrhea. Then when the D just wouldn't go away, I was told I had "Post-Infectious Irritable Bowel Syndrome," which is apparently doctor-speak for "We're not sure what to tell you, but do come again." The biopsy results of a colonoscopy showed, however, that I had intraepithelial lymphocytosis, which is one of the primary diagnostic criteria for MC, so I've chosen to treat it as such. I gave up the gluten and dairy right away, even before EnteroLab confirmed I was reacting to both, because it made no sense at all to continue ingesting things that were probably or even possibly making me sick.

Truth be told, I feel very lucky that I found out I was gluten sensitive sooner rather than later. Autoimmune diseases run in my family, and knowing what I know now about gluten--thanks to all the good information on this forum--makes me think (hope) I've dodged a serious health bullet by getting it out of my life for good, no exceptions. I don't think of it as "Oh, it sucks that I have to give this up." I think of it as "Wow, good thing I found out what I can do now to prevent a whole host of health issues down the road."

Fiona
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tex
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Post by tex »

Fiona wrote:Then when the D just wouldn't go away, I was told I had "Post-Infectious Irritable Bowel Syndrome," which is apparently doctor-speak for "We're not sure what to tell you, but do come again."
:lol: You're definitely right on target there. I can't help but wonder what percentage of patients are naive enough to actually believe such fictitious diagnoses. I'll bet it's a lot lower than most doctors realize.
Fiona wrote:Truth be told, I feel very lucky that I found out I was gluten sensitive sooner rather than later. Autoimmune diseases run in my family, and knowing what I know now about gluten--thanks to all the good information on this forum--makes me think (hope) I've dodged a serious health bullet by getting it out of my life for good, no exceptions. I don't think of it as "Oh, it sucks that I have to give this up." I think of it as "Wow, good thing I found out what I can do now to prevent a whole host of health issues down the road."
I love your attitude, and I feel exactly the same way. I'm a lot older than you, and so I wish that I would have discovered what was what back when I was your age. 10 to 15 years ago, I had bad arthritis symptoms (to say nothing of all the GI issues). Today, arthritis is not a problem. When I look around at my old classmates and others my age (and many others who are much younger than I), I see how lucky I actually am, because way too many of them appear to be living with all the problems that were destined for my future, if I hadn't changed my diet.

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.
Fiona
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Post by Fiona »

Tex, I agree 100%. When my brother was first diagnosed with RA and I learned that it runs in families and affects more women than men, I remember thinking "Yikes, what chance do I have of avoiding it?" Now that I understand the connection between gluten and autoimmune diseases/disorders, I believe I have every chance of avoiding it, along with Lupus and the other AI diseases that some of my family members live with. Even just the TMJ...I've already noticed a decrease in tension in my jaw, and I've only been gluten free for just over two months. I've lived with TMJ to varying degrees of intensity since I was in high school, so that alone is worth the "price" of giving up gluten to me.
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Post by Fiona »

Terre, just an update for you since you asked about my Pepto experience. As of today, I'm discontinuing it. Last night the ear ringing returned with a vengeance, so I'm done. That makes for a total of six weeks at the full dose of eight chewables a day, and one week at the half dose of four chewables a day. I thought about cutting it down to two for the final week of the protocol, but my understanding is that tinnitus isn't something to mess around with, so I've decided to stop. At this point, I feel like I've gotten all I'm going to get from the Pepto and have no compelling reason to risk serious neurological damage. Let me know if you have any questions!

Fiona
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Post by lorimoose »

Terre,

I have to agree with Joe. I would report your coffee ground poop to the GI. I think Tex is right and that it is just a result of the Pepto, but when I had that symptom many years ago, it was the result of a bleeding ulcer. I think it is good to keep your doctor in the loop.

Warmly,
Lori
terre
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Post by terre »

Thanks for your concern....and I would keep my doctor in the loop, but he would be SOOOO disappointed that I am not yet taking Entocort....and the fact that I've lost weight trying GF, SF, DF....he will think I'm crazy! After I asked him to do a stool sample for me, he sent me the results in a letter and at the very end of the letter he stated:

"I do think that if you review the literature on CC or MC, the medicine that seems to have the best success rate is Entocort and some report greater than 80% success with treatment with that agent."

He also, told me that my GI was a very knowledgeable, compassionate man and that I should follow his advice and try the Entocort.

I love my internist and am not ready to talk to him until I have ruled out my other options (Pepto and diet) before I try Entocort. I'm not saying I won't take it.....just not quite ready.

Terre
terre
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Post by terre »

Could someone please tell me how to get the "white" box when referencing text?

Thank you!
terre
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Post by terre »

Fiona, please keep me posted as to how you get along since stopping the Pepto.....I hope it's all good!

Terre
lorimoose
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Post by lorimoose »

Terre, I hope you start feeling better very soon. I think we both started here at about the same time. I am on entocort (out of desperation, since I was scheduled to leave town), but it was a good choice for me. I have been strict with the diet I learned here, and I am considering the Enterolab testing. I just have to find out if it is too late, since I am on the meds and changed my diet.

Good doctors are so hard to find. I understand your not wanting to share this with him, and keeping him in your corner when it is something he can actually help with.

good luck,
Lori
terre
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Post by terre »

Lori, thanks for understanding.....the last thing I want is to have to find a new doc.

Could you explain what you meant by "I just have to find out if it is too late...."

I am waiting on my Enterolab results - today has been one week. I think when I get the results back, that will help guide me as to my next step.

I am going out of town the end of next week and may wish I had started the Entocort....hope you have a good trip!

Terre
lorimoose
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Post by lorimoose »

Hi Terre,

Since I have been completely GF SF DF for weeks, I want to know if sensitivities would still show up on the test? Which tests did you take? ....I was thinking about A & C.

I just got back from my trip. It was wonderful to see an old friend and then travel. I found it difficult to get food while on the road, and impossible at the airport. Some places just didn't have available or couldn't guarantee the food, and I was hungry a lot of the time. I hope that at some point I can add back fruits and salads... which would make traveling easier. Also the more I learn, the easier it will become (I hope).

For now, I am happy to be home, cooking just what works for me.

Warmly,
Lori
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tex
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Post by tex »

terre wrote:Could someone please tell me how to get the "white" box when referencing text?

Thank you!
You can simply click on the "Quote" button located in the upper right corner of the post that you wish to quote, and the system will automatically open a message window with the quote and the necessary bulletin board code (BB Code) already entered (so that most browsers will properly interpret the code when someone reads your post). That's exactly what I just did to quote your post. If you don't want to quote the entire post, just delete the parts that you want to eliminate. Just be careful that you preserve the code at the beginning and end of the quoted material (the code that is enclosed within the brackets). Then you can add your own comments below the quoted block of material, and post it by clicking the "Submit" button located below the box.

Or, you can cut and paste the text that you wish to quote into your message-composing window and then highlight it and click on the "Quote" button above the window. The system will automatically add the necessary BB Code to the highlighted text.

If you have any problems, please don't hesitate to ask.

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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