I'm New and So THANKFUL for this Board!

[Nettie]

Hello, I’ve been reading on this group since February of this year but this is the first time I’ve posted anything. This group and now Tex’s new book which I got a couple of days ago on my Kindle reader are excellent resources. The resources and conversations on this board have helped me get my life back and to feel hopeful about the parts I don’t have back yet!

A little over a year ago I had a colonoscopy and endoscopy with biopsies and the pathology report came back with a diagnosis of “amyloidosis of the cecum”. The GI nurse is the one who called to tell me that and when I asked her what is it she said the dr. told her to tell me “it’s not cancer and come back in 5 years”. Well imagine my shock when I looked it up, found the amyloidosis foundation and some good resources and found out it has a terminal prognosis – 2-5 years – not curable, only controllable and that happens with chemotherapy, stem cell transplants, some other heavy duty drugs and some of those are not options for a person my age (almost 72) if I even wanted to try them based on its not curable.

I couldn’t get the GI dr to call me so I asked my Gyne dr for a referral to an Oncologist, went there and over a course of a few months had testing for every system in my body including bone marrow biopsy and they were all negative for the protein fibrils! So he sent my original slides to Mayo Rochester and Boston U which both returned a histology report of COLLAGENOUS COLITIS!

At that point the original GI dr. then called me to tell me the test results and invite me to his office to talk about it. I said thanks but no thanks maybe I’ll consider it some time. At that point not only had I lost confidence in him but I was so angry and disgusted.

Trying to make a long story short, by that time my body was really suffering, my muscles were wasting and I had wrinkled skin various places, inner thighs etc like that, I was exhausted, I was having severe muscle spams nearly every night in my feet and legs, during the day in my hands and neck, horrible itching rashes and really bad bruising with the slightest pressures on my hands and arms. I lost hair, when I was able to stay outdoors in the sun my face wouldn’t take or hold any color. I have always taken B complex and other supplements, antioxidants etc and when all this started I had to give them up. They would not digest and caused even more heavy duty D’s. Everybody told me how puny I was looking. Funny thing tho I didn’t loose much weight in spite of all that. I started having reflux. Just one big mess.

My Gyne dr. put me on PPI every morning and said go ahead and try Immodium. The immodium, one every morning, has been enough to most of the time give me Normans every day, apparently has allowed food to stay in long enough to be processed because almost all those non-digestive issues have cleared up as long as I take an antihistamine every day and eat the right foods and people are telling me I look so much “healthier”. Hair is growing back, my skin is filling out and keeping its color. When I read on your board about some success with L-glutamine, I added about 10 grams of that most days and that is when I really began to see an improvement in my overall condition! All of those things must be related because even with the immodium, if I try to go back to my old ways of eating pretty much only chicken, fish, vegetables and fruit (I have eaten mostly gluten free for 25 years because gluten makes me sick) then I pay for it. Those things don’t digest well anymore. So I eat a lot of rice, corn, beans in various forms and I have been able to add all my supplements back. If I have a bad CC flare then along with it comes the bad joint and muscle pains, the rash, the terrible tiredness, abdominal distention etc.

I finally decided that I really need somebody to help me manage the CC if there is better than I am doing for myself, I am all for that and I got a referral by my Oncologist for this coming January to go to Shands to see a GI dr there who is also professor of GI medicine at University of Florida Medical College.

There is still a question in my mind about the very different pathology reports because the amyloidosis diagnosis is not based on a reading of cellular components and structures alone, a tissue with that condition has a specific reaction to a very specific stain. So I’m hoping the new GI will be able to explain that to me as well and erase a small doubt about the CC vs Amyloidosis.

Thank you Tex and this board!!!

[Zizzle]

Welcome Nettie! And WOW, what a story!! I can't believe you had to go through all that!! I hope the pathologist is aware of the situation he caused. I too have an itchy skin rash which I never associated directly with the MC. Can you describe your rash? It seems a few of us here are suffering from terribly itchy rashes with virtually no relief from meds.

[tex]

Hi Nettie,

Welcome to our internet family. Wow! You've had an incredible journey. Good for you for tracking down the real problem. Your original pathologist and GI doc must have been smoking something when they came up with the diagnosis of amyloidosis. I think that you can safely assume that you don't have it, because as you probably know, if you had amyloiodosis, by now you would be likely to be having serious heart problems, coughing up blood, your spleen and tongue would be enlarged, etc.

My guess is that the pathologist was totally unfamiliar with the diagnosis of CC and he or she simply misread the thickened collagen bands that are the markers of CC, and thought that they were amyloid protein deposits. Collagen that is located in certain types of tissue, including cartilage and the intestines (which would include the cecum), is typically in the form of elongated fibrils, so a pathologist who doesn't know what he or she is doing, could make that mistake. Furthermore, the amino acid composition of collagen is atypical for proteins, so this could have also contributed to the confusion of your original pathologist.

It's great to see that you've taken charge of your own health, rather than to just sit back and allow a confused doctor to wreak havoc on your body. It sounds as though you've done a great job of determining which foods are safe for you, and which ones are not.

Again, welcome aboard, and please feel free to ask anything. And thank you for the kind words, and for posting your incredible story.

Tex

[carolm]

HI Nettie,
I don't have much to add to what Zizzle and Tex said to you, but-whoa- your experience is really something. It is so good that you continued to ask questions and to research. It will make all the difference in the quality of your life. I'm glad you have your Gyne that will work with you and help you get the referrals you need.

Please keep us posted on your progress.

Carol

[Leah]

You are a superstar. You took control and did what you needed to do to feel better. When I read what you eat, I found it interesting. You may want to test the fruit thing on it's own. I also eat rice, beans, corn products ( and meat) I just know for me that fruit is still not good for me (even though I have healed a lot and only take an antihistamine now).

Thanks for posting. It's always good to hear about a success

Leah

[Stanz]

I'm sorry your GI doc was so inept and unsympathetic, unfortunately that seems to be the norm here. Hopefully you are on the right track now.

Connie

[Nettie]

Oh wow you all have given me some super encouragement -- thank you all for your kind words and warm welcome!

Tex - That brain fog is one of the things associated with MC/CC is something I didn't know until I read your book! The past year and a half have made me feel like I was maybe going to have to worry about dementia or Alzheimers. It got so bad that I started making a list of important things I was forgetting because I was afraid that when the time comes I would forget to tell my doctor about them as examples. Excellent information in your book. As for the pathology of the CC vs amyloidosis I appreciate your description of the two. I guess what threw me is that the first pathologist reports on his tissue report that my cecal biopsy had the "classic reaction" to the Congo Red stain which is supposed to be the gold standard for a pathology diagnosis of the amyloidosis. Any experience with that you can tell me about? It's on my list for the new GI too. As for taking charge of my own health, well I've been so fortunate all my years to be healthy and active, walking 2 or more miles a day, swimming, hiking etc and it was a shock to be so debilitated lately. I've always been a fan of "if it ain't broke, don't fix it and "less is more". We all know and listen to what our bodies are telling us most of the time and I firmly believe we all have the right to say how it is treated, or not, and what is put into it or done to it. We have the last word and I will go through doctors until I find one that is knowledgeable about this condition and willing to listen to me. And I forgot to say also that I before this CC was discovered, my Gyne found a very low Vit. D blood level and put me on a big RX dose of Vitamin D, had a bone scan done that was showing beginning osteoporosis. Also had me to add a GNC Probiotic ....I think he's pretty smart! Another thing I forgot to say is that I have 2 first cousins on the same side with biopsy and blood diagnosed celiac disease and on that same side are 3 colon cancers - brother, grandfather and uncle.

Zizzle - the rash I get is complicated by my having so-called winter skin, eczema, contact dermatitis. These have been with me for most of my life. Until the past 2 years with the CC, I also would get a fiery itchy rash when I ate gluten which was accompanied by joint pain, fatigue, bad sinus fillups. So imagine my surprise after eating gluten free for so long to have this same kind of blistery rash come up when not eating gluten. Besides that, the rash takes the form of hard little itchy red bumps. Treatment has been triamcinolone (something like that) cream, others I can't spell, Sarna sensitive lotion kept in the fridge applied liberally all day is a great itch reliever. Rx's of cortisone creams etc. The best thing I've found at the moment is to take Allegra every morning and I've added Zantac at night. I looked and couldn't find any contraindications to use that while using Previcid every morning. My skin is feeling good this week!
Also found some discussion and explanations on this board the past couple of weeks about histamines and histamine foods so I'm trying really hard to eat only the low histamine foods that are among the ones that digest well. Sheesh do you ever feel like you're running yourself ragged trying to keep all this stuff straight??

Lea - thank you so much for the encouragement - Since adding the loperamide once every morning (since about March this year) I've been able to add
a little meat once in a while, eggs, some gluten free bread. Seems like dairy products have never been a problem, nor has the fat in them so there for a while I pretty much lived on ice cream and mashed potatoes. I forgot to say sweet potatoes do very well but my body so far doesn't like fruits and veggies. I tried to puree some fresh pears the other day and my body rebelled with a D in spite of the loperamide. There have been times I felt like things were good, I ate what I wanted just like in the olden days and after 3 or 4 days, the body in the form of some big D's would say "you want to eat what?? no way" How long did it take before you could pare down to just antihistamine?

Carol and Connie - Your encouraging words really mean a lot! Family and friends are sympathetic and want me to be well but I can't talk about all this stuff to them - it's either too gross lol or too complicated. It's so good to be here with you all who been there done that and have experiences and resourses to help others with.

[tex]

Nettie,

Your gynecologist is definitely on the ball. Low vitamin D is not only a common result of inflammatory bowel disease, but it also contributes to the initial development of an IBD.

While I certainly don't consider myself to be an expert on pathology (I only know enough about it to be dangerous ), I'm puzzled by the fact that the pathologist who analyzed your biopsy samples used Congo red stain in the first place. Why would he or she do that? Congo red is normally used only to stain samples where it is desired to examine the presence of amyloids and the virulent pathogen Shigella flexneri.

Normally, the stains used for most diagnostic procedures are hematoxylin and eosin. Hematoxylin acts as a basic dye (pH greater than 7.0), and it stains the cells nucleus, DNA, RNA, etc., a purplish blue color. Eosin acts as an acidic dye (pH below 7.0), and it stains the cytoplasm, cell walls, and any extracellular fibers a reddish or pink color. I wonder if that pathologist thinks that Congo red is the same as eosin?

Masson trichrome stain is sometimes used to analyze collagenous connective tissue fibers in tissue samples. Collagenous colitis is a connective tissue disease (though most GI docs don't even realize that), and Masson trichrome stain makes it easier to see the thickening of the collagen layers (on which the diagnosis of CC is based).

I would be willing to bet that the pathologists who diagnosed 99% of us did not use a Congo red stain. I have no idea why your pathologist decided to use it.

If neither Mayo Rochester nor Boston U verified a diagnosis of amyloidosis, then you can be sure that you do not have it.

Tex

[Nettie]

Tex I think you know a lot more than you give yourself credit for thanks for that info on the tissue staining and you brought up an excellent question as for the "why" the Congo Red was used in the first place. Totally slipped my attention. That one is going to the top of my questions for the new GI list.

I pulled out the original tissue report and it says for both colon, descending and cecum: Amyloidosis. Infiltration of amorphous, eosinophilic material within the lamina propria diffusely particularly prominent in the sub epithelial area. Congo Red stain shows positive bi-refringence under polarized light.

From Mayo:thickening of subepithelial collagen band confirmed by trichrome stain performed on the submitted parafin blocks. (my paraphrasing: no evidence of amyloid deposit identified by repeat Congo red stain on the submitted blocks)

Another question that comes to me then, is it possible to have had both? And is it possible that further sectioning of the blocks went beyond the amyloid area and so no reaction to the Congo Red? In otherwords kind of like going past malignant margins into clear margins of a block of tissue with subsequent cuts? The oncologist told me that it's rare but that primary amyloidosis can occur within an organ in an isolate and not be due to wild protein fibril production by the bone marrow.

Boston U added on the stomach biopsy: mucosa with marked parietal cell hyperplasia and gastric antral mucosa with g cell hyperplasia. Seems to me that's not a good thing to have either so that was on my list of questions for the new guy also.

so many questions!

Nettie

[tex]

Infiltration of amorphous, eosinophilic material within the lamina propria diffusely particularly prominent in the sub epithelial area.

That precisely describes one of the diagnostic markers of MC. Lymphocytic infiltration is a marker of both LC and CC. With LC it occurs in both the mucosa and the lamina propria, and with CC it occurs primarily in the lamina propria. The lymphocytes that are always involved with MC are mostly eosinophils (the eosinophils also serve to distinguish MC from Crohn's disease or UC). Obviously that pathologist wouldn't recognize MC if it bit him on the nose.

Congo Red stain shows positive bi-refringence under polarized light.

I didn't realize that birefringence was a diagnostic factor, nor that it had anything to do with identifying amyloid deposits. The reason why Congo red stain is used is because it causes a color change under polarized light. He might be referring to that color change as birefringence, but that's a weird way to phrase it.

The most useful stain in the diagnosis of amyloid is Congo red, which, combined with polarized light, makes the amyloid proteins appear apple-green on microscopy.

Another question that comes to me then, is it possible to have had both? And is it possible that further sectioning of the blocks went beyond the amyloid area and so no reaction to the Congo Red?

I'm old enough to have seen more than one impossible thing happen, so I would hesitate to say that anything is impossible, but IMO,that would be as rare as hen's teeth, because amyloid deposits should be somewhat diffuse, rather than layered. Biopsy samples are rather tiny, to begin with, so there can't be a heck of a lot of distance between various slices used for a slide. It's not like biopsying a tumor, which has a substantial depth — biopsy samples from the colon, taken during a colonoscopy exam, are pretty thin.

marked parietal cell hyperplasia and gastric antral mucosa with g cell hyperplasia

Both of those issues are caused by the extended use of proton pump inhibitors. PPIs physically damage the mucosa of the stomach. Usually, discontinuing the use of PPIs will result in at least a partial recovery of normal histology, after a while, depending on how long they have been used.

Tex

[Martha]

Dear Nettie,

I don't have any wisdom to give, but I want to welcome you to the group. It sounds like you have done an amazing job of taking charge and tracking down what's wrong.

You're only the second Nettie I've ever heard of. That was my grandmother's name. Well, it was her nickname, short for Henrietta.

Love,
Martha

[Nettie]

Tex this information will give me a much better position during the new GI appointment. You make this complicated stuff understandable. hahaha you are too kind to refer to the original pathologist as "confused" !! Thank you so much for the pathololgy session.

Martha it's nice to "meet" you and thank you for your encouragement. It's been a rough road getting to this point, but reading so many stories here, I see that my road hasn't been nearly as hard as some have had and still do have. I know this must sound like a broken record but without finding this group, the progress wouldn't be this far along! Hey I really like your grandmother's nickname and Henrietta is a pretty name. My Nettie name is a nickname too -

Nettie (Annette)

[brandy]

Hi Nettie,

Welcome! Gee you've been through a time of it! I also suffered from pretty severe brain fog/memory issues from this disease--and I'm only 50. I thought I'd mention that I found the former discussion threads on this forum using the search terms "brain fog" and "alzheimers" to be pretty helpful. I was having a lot of problems w/ transposed letters on the keyboard. I've implemented some things that were discussed on former threads and my short term memory has definitely improved.

I have an appmt with GI doc Dr. G at Shands/UF on Friday. I'd recommend that you bring a book (a big one), snacks, and comfy walking shoes and a lightweight sweater for your Shands appointment. It's not a GI department thing.....I think it is more of a Shands thing. Shands is a big operation and everthing seems to run slowly there. You should be in good hands there.

Regards, Brandy

[Nettie]

Hi Brandy, well duh I didn't think to search the site for the brain fog problem. Thanks for that and I will do some searching on it. Lately I get so tired of saying "I can't remember". Thanks for the suggestion for the Shands visit also. It is indeed a big operation! I hope you have a great and productive visit Friday!

Nettie