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09-25-2012, 03:08 PM   #1
ginnyrdhap
 
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Colonoscopy tomorrow- FINALLY!

Hello everyone in the undiagnosed land of limbo

I posted My Story in the other thread, but I thought I'd join this group because you guys are in this same frustrating situation of not knowing exactly why you are sick.

I have been told I have IBS for at least 3 years, had SIBO twice, and 6 weeks ago became very sick and haven't been able to return to work since. I have had nausea, cramping, constipation, over 10 lbs of weight loss that I can't afford, extreme fatigue, weakness, dizziness, headaches, spine and joint pain, tingling in feet and hands, and nasal sores. If I eat very carefully, mostly the homemade chicken/veggie soup from the GAPS diet, my symptoms improve, but then I lose more weight and the neuropathy gets worse. I try to introduce other foods and I start feeling horrible again. I didn't think I could have Crohn's because I don't get diarrhea, but after reading this forum, I see that not all Crohn's patients get D.

THe blood work from hematologist and Rheumatologist has ruled out many conditions that can cause these symptoms. I did get a positive test for Crohn's disease from the 4th generation Prometheus IBD sgi diagnostic test. It is much more comprehensive than the previous generations. I've done some research on this newest test and it really looks impressive. Maybe as high as 90% accurate. However my GI doc says he would be surprised if he finds Crohn's. Maybe because I had no inflammation markers in any of my blood tests, even the Prometheus test. I wonder if that means I have Crohn's but it just hasn't caused much damage yet. But then why do I feel so bad? I'm doing my liquid diet and prep today for my colonoscopy tomorrow. I really hope they can find something, so I can start a treatment.

David has suggested that I look into possible Ankylosing Spondylitis as the reason for my spine and joint pain. My grandmother just told me that she has both AS and fibromyalgia, so I took the blood test yesterday that tests for the gene for AS, HLA B-27.

Well, I guess I'll try to let everyone know tomorrow how it goes after the fun day at the GI center.
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09-25-2012, 03:24 PM   #2
Cat-a-Tonic
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Hi and welcome to the club. I hope you can get some answers from that scope tomorrow! A couple of suggestions for the scope, first of all make sure they take lots of biopsies. Make sure they know that even if they don't see anything, you want them to take lots of biopsies regardless. The reason for this is that if you have something like microscopic colitis, it can cause a lot of the symptoms you've mentioned, but visually everything looks normal - it's only on biopsy that it can be found, and it tends to have a "skip pattern" (in other words, patches of inflammation/disease rather than being uniform - so basically they'd have to blindly hit the right spot to biopsy in order to find it). Another thing is, you might want to ask them to stain your biopsies for mast cells. There's a form of IBD known as mastocytic enterocolitis, and it's also hard to catch because they can apparently only find it by staining the biopsies for mast cells. At the very least, by taking lots of biopsies and staining them, you'll be confirming or ruling out those two. Of course Crohn's and UC can also be diagnosed via biopsy so it's just a good thing all around to have multiple biopsies taken from different areas of the colon & terminal ileum.

And you're absolutely right, not all Crohn's patients get the big d. Some do get constipation instead and a lucky few don't get any change in bowel movements! So don't let them say it's IBS just because you tend towards C rather than D. And as far as inflammation markers in the blood, about 10% or so of IBD patients have normal inflammation markers even when in a horrible flare, so you could just be part of that (un)lucky 10%. Long story short, C plus normal inflammation markers does not necessarily mean it's IBS and don't let them tell you that's the case. Other symptoms you mentioned, particularly weight loss, are NOT part of IBS.

And as for AS, a lot of IBD/Crohn's patients seem to get AS as well so that also fits (or doesn't fit with IBS). I would definitely think you have some form of IBD as opposed to IBS, although you'll need your doctors to figure things out for sure and which type of IBD and all that fun stuff. I hope the colonoscopy can shed some light there! Good luck with it tomorrow, and good luck with the prep today! Please keep us posted on how it all goes!
09-25-2012, 04:07 PM   #3
dannysmom
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Hope all goes well!! Keep us posted!
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09-25-2012, 04:28 PM   #4
ginnyrdhap
 
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Hi Cat-a-tonic, Wow, thank you so much for your post. I will definitely request that my Dr. take plenty of biopsies and to stain them for mast cells. He's been a bit testy lately. Seems defensive when I question him about things. Hopefully he'll not have a problem with this request. My husband will be with me tomorrow, so maybe I'll get a little more respect from the doctor. (sad to say). You've really inspired me though, to keep educating myself about all this and to keep pushing for a real diagnosis.

Dannysmom: Thanks again to you! I really appreciate the well wishes! I hope Danny is still doing better.
09-26-2012, 12:01 PM   #5
dannysmom
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I do think it is good to have your husband there ... maybe he could even ask some of the questions. I find this helps for us. Many doctors do seem to get a "bit testy" with questions or suggestions ... some more than others. I try to be a delicate as I can
Good luck!
09-26-2012, 06:08 PM   #6
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Well today was my big day,with the colonoscopy. I was both nervous and excited about the prospect of getting a diagnosis. The prep I used was called Suprep, it wasn't covered by insurance, but with a $10 coupon, it was about $65. THe doctor recommended it because it tastes better and is a lower volume product than many of the other ones out there. It tastes like cherry cough syrup but not as thick. I got some nausea and cramping but not too bad. It was just hard getting to the toilet about every 15 min until I went to bed. Being someone who usually has some constipation, it actually felt like a good thing to get so cleaned out.
The sedation worked great for me. I don't remember a thing and I felt very comfortable when I woke up in recovery. The doctor said he was able to get into the terminal ileum (Yeah). He took biopsies and removed polyps. He said he found small internal hemorrhoids and saw a small ulcer in the ileum. But then he said it didn't look bad. I will receive biopsy results in the mail within 7-14 days. Pillcam is still an option if we don't get a diagnosis from the biopsies. I'm just glad he didn't just say it was "normal", because I want to start some kind of treatment for this misery!

Whew! Glad that's over and I am hopefully one step closer to getting better.
10-02-2012, 06:28 AM   #7
dannysmom
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I am glad it went well ... and understand not wanting "normal" results (which is why I am not writing "sorry about the ulcer"). I hope the pathology helped make your dx clear.
10-02-2012, 09:59 PM   #8
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What I don't understand is this, isn't an ulcer a sign that somethings wrong? If I have an ulcer in the small intestine, why isn't that automatically considered Crohn's? Why is a biopsy needed? If it's not Crohn's what else could it be?

This isn't necessarily directed to you, dannysmom, just wondering if anybody knows the answer to this question?????
10-03-2012, 06:39 AM   #9
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Ulcers could be caused by other things (ie bacteria infection) ... maybe your doctor did not want to jump to conclusions without pathology report being in (granulomas on an ulcer is a gold standard indicator for Crohn's, but not all Crohn's patients have this) ... but given your symptoms and other positive results I would think you would be given IBD treatment at least. If a pillcam is still being considered, treatment may be put off until after all testing is complete.
10-03-2012, 10:42 AM   #10
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Oh, I didn't know there were other causes for the ulcers, like bacterial infections. That's interesting. Thank you for the explanation. He did want me to do pillcam if colonoscopy was not conclusive. Today is day 7 after colonoscopy, I hope the letter comes in the mail today!
10-04-2012, 07:30 AM   #11
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Call them if you don't hear anything. A week should be long enough in the US.
10-04-2012, 12:47 PM   #12
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Thanks Mayflower, I'll call this afternoon. This waiting is so hard.
10-05-2012, 11:00 AM   #13
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I called the GI office today for my colonoscopy results. The nurse said that the polyp removed in the colon was an adenoma that was precancerous and that I need another colonoscopy in 3 years to recheck for polyps. But that there was no sign of Crohn's, colitis, or celiac. I was so surprised. I was convinced this would be Crohn's. I told her that the Dr. had mentioned a possibility of doing the pill cam test next, but she said he's on vacation for 2 weeks and that I just have to wait to talk to him about it at my appointment on the 19th. I'm really not happy with this Dr. and left a message for the office manager to request a transfer to another MD in the practice. This other doctor is a female who was highly recommended to me by one of her patients who is also a physician. The office policy is that my Dr. has to sign off on my chart that I am ending care with him, and the new Dr. has to agree to take my case. Unfortunately, this is probably going to delay starting the pillcam procedure even further. Ugh!

So now I'm wondering, how useful will this pillcam procedure be to getting a diagnosis. If my Small Bowel Follow Through and abdominal CT scan didn't show anything in the small intestine, what are the chances that the pill cam will see something that the other tests couldn't see? Should I give up, and just assume it's IBS and go back to my primary doc to see if he thinks I have fibromyalgia or something?

It sounds so weird to say, but I really wanted a diagnosis of something, so I had an answer, and could stop all this testing!
10-05-2012, 02:10 PM   #14
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Sorry you still have no answers ... but what is their explanation of your ulcer? Please ask for a copy of the pathology report. My son's pillcam was basically negative, but for some it was positive when other imaging was negative. It is a simple procedure so if your insurance will cover it I think it is worth it.
10-05-2012, 02:29 PM   #15
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Hi ginnyrdhap,
First of all, I just want to say that by having this colonoscopy and having the polyps removed, you may have delayed/prevented developing colon cancer. This is very serious. I know that you want a diagnosis of the other problems, but your doctor will have been focusing on the pre-cancerous polyps as they can't be sure when they remove them that they are not cancerous. You must be sure that you discuss the colonoscopy and future testing to screen for colon cancer in the future. Because of the polyps, you are at a much higher risk for developing colon cancer.

Have you been tested for Celiac disease? It would explain all of your symptoms. If you have not been tested for this, ask for it, but make sure that you have been consuming a high wheat diet before testing, otherwise you risk a false negative. Even if testing comes back negative, you might be gluten sensitive. Once you have had the testing, if it is negative, you may wish to try a gluten-free diet to see if your symptoms improve.

May you soon get some answers and begin feeling much better soon.
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10-07-2012, 03:05 PM   #16
ginnyrdhap
 
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Dannysmom: I haven't spoken to the doctor yet, I called the nurse because I hadn't received my results in the mail yet and she just read me the report. There was no mention of the ulcer in the terminal ileum, just that there were no signs of Crohn's, Celiac, or colitis. My GI doc is on vacation for 2 weeks (seems to be out of town quite a bit). Like I said, I'm going to hopefully switch to a female GI doc in the same group. I just read a number of stories about people who were diagnosed from pillcam after many other tests were negative. It convinced me to ask the new doctor to do the pillcam ASAP.

happy: Thanks for the info on the polyps. They did recommend another colonoscopy in 3 years to check for new ones. I knew having an adenoma polyp increased the risk of colon cancer, but does it really make the risk much higher? As far as celiac, I had a genetic test for it 3 years ago and came out as having the genes and was told I had a high risk of getting it. Then I had the blood test and Upper endoscopy biopsy that both came out negative. With this most recent colonoscopy biopsy it came out negative for celiac, but I've been on a modified GAPS diet with very little wheat, so it could have been a false negative. Maybe I'm just gluten sensitive, but I know I feel so horrible when eating a lot of wheat (and many other things), that I don't know if I could ever go back to eating enough wheat to make retesting for Celiac worth it.
10-07-2012, 06:15 PM   #17
happy
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Yes, the cancer risk is a lot higher: http://www.hopkinscoloncancercenter....7-4158CC924084

I am not sure how the colonoscopy showed a negative result for celiac disease as it is usually diagnosed with an upper endoscopy and not in the area that a colonoscopy can reach to.

Here is some more info about gluten sensitivity: http://www.gluten.net/GlutenSensitivity%2006-2011.pdf
and http://www.livingwithout.com/issues/...00212&t=B_TL_P
and http://www.livingwithout.com/issues/...66-1.html?pg=1
10-07-2012, 06:20 PM   #18
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Oh, very interesting. I'll ask the new GI doctor about the celiac result. The doctor who did the colonoscopy is really not very helpful in understanding all of this!

I'll check out the two links, thanks so much!
10-09-2012, 07:07 PM   #19
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Ginny, I know in my case, the c-scope report is different from the pathology report. I don't know which your nurse read to you, but I would definitely make sure you have both. I have been given erroneous information before and am really anal about getting all of my reports in-hand.
10-09-2012, 07:12 PM   #20
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Ok thanks Mayflower. I'll call the office tomorrow and ask if I can pick up the pathology report because the letter I got from the GI was very vague. I just called my Primary doctor and asked if I could get a referral to Stanford or UCSF to have a second opinion from one of their GI clinics. I wonder how booked up they are.
10-09-2012, 07:22 PM   #21
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ginnyrdhap, out of curiosity what did the pathology report say? I am also going to UCSF for a second opinion Nov 6. I was given too many diagnoses, and I only want one. Grrrr! I wish you luck and keep us posted.
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10-09-2012, 07:28 PM   #22
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Happy,

I'm confused about the celiac biopsy. Do you think it is impossible for my doctor to confirm celiac from a colonoscopy biopsy? He says he got into the terminal ileum of the small intestine. Three years ago I tested at a high risk for celiac from the genetic saliva test, but the blood test and upper endoscopic tests were negative. But I just read online that a person can develop celiac at any age. The other thing is though, I was staying away from most wheat products before the colonoscopy because they (and many other foods) made me feel so sick. So, it could be a false negative as well. I don't know if I could ever go back to eating gluten products daily for a month just to get retested for celiac. I would get so sick again. Maybe I just need to stay on the gluten free diet and assume I have a sensitivity.
10-09-2012, 09:06 PM   #23
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ginny,
My understanding is that the biopsy is usually done in the duodenum, which cannot be reached through a colonoscopy. And not eating wheat could affect a biopsy result in this area. I understand not wanting to eat wheat for a gluten challenge, because it makes me sick as well. I hope that you are able to see another GI soon and that they can help you figure out what the results actually mean and what the next step should be.
10-09-2012, 09:13 PM   #24
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motheroftwins: I will pick up the full pathology report tomorrow. I just got a letter from the GI office stating that I had a precancerous polyp removed and that there was no sign of Crohn's, colitis, or celiac in the other biopsies. Not very specific at all. Good luck with your appointment at UCSF. Do you think they are a better choice than Stanford? I'll let you know what the full pathology report says when I get it.

happy: thanks again for the clarification on celiac diagnosis.

Last edited by ginnyrdhap; 10-09-2012 at 10:03 PM.
10-10-2012, 03:28 PM   #25
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Hello ginnyrdhap, I am not sure what is the better choice between Stanford vs. UCSF. I am sure they are both pretty good and we couldn't go wrong either way, in my opinion. Keep us posted!!
10-10-2012, 03:50 PM   #26
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Motheroftwins:

I'm going to try to get my primary doctor to refer me to both places and see which has the soonest appointment. I'll definitely let you know how it goes. Can't wait to hear about your appointment on Nov. 6th. What was your wait time to get that appointment date?
10-10-2012, 03:59 PM   #27
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My GI doctor made the referral and I knew about the appointment very the next day, but I still have to wait, consultation and study, test results etc... Grrrrr, lol. I will definitely let you know about the appointment and the results. I love this forum and the support we can give each other. I do have a diagnoses, I just want to make sure this is what I have.
10-13-2012, 12:30 PM   #28
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Hi everyone,

I finally got a copy of my pathology report from my colonoscopy. I tried to upload an attachment, but the file was too big. So I'll type what it says:

Final Pathologic Diagnosis:
1) Colon, Periappendiceal: Adenomatous Polyp, Tubular.
2) Terminal Ileum: No enteritis
3) Colon, Random: No microscopic Colitis

Microscopic Description:

1) The slide demonstrates colonic mucosa with tubular glands, lined by cells with enlarged nuclei and decreased apical mucin, consistent with tubular adenoma. No high grade dysplasia is present.

2) The slide demonstrates small bowel mucosa with absorptive villi. No villous blunting, granulomas, architectural distortion, adenomatous changes or malignancy is present. Occasional plasma cells and lymphocytes are present in the lamina propia.

3) The slide demonstrates colonic mucosa with tubular glands and no granulomas or significant architectural distortion , thickening of the basement membrane, acute inflammatory infiltrate, dysplasia or significant intraepithelial lymphocytic infiltrate.

My next appointment with my current GI doc (that I don't care for) is this Friday, Oct. 19th. I'm assuming he'll order the Pillcam. I also have an appointment on Nov. 14th with a GI at Stanford for a second opinion. I'm tempted to cancel my appointment with my current guy and just be done with him. But my problem is that I've finally met my $4,100 deductible for my insurance and now all my visits and tests are suppose to be covered at 100% until the end of the year, which is almost here. I'm afraid that if I wait until Nov. 14th to see the new doc, I'll be cutting it really close for insurance. I'm sure the pillcam is expensive and any other tests he might want to do. Although, I think I've had almost everything possible already. Hmmm, decisions, decisions!

Last edited by ginnyrdhap; 10-13-2012 at 01:01 PM.
10-13-2012, 07:53 PM   #29
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Thanks for the update. Seems so odd that the doctor said you had an ulcer in your TI yet the pathology report makes no mention of it ... I wonder if the doctor biopsied it? I also wonder how many biopsies your doctor took since the report makes it seem like 3. My son's scopes involved several biopsies are each location and the pathology report if broken down by location (ie TI, cecum, tranverse colon, etc.) The pillcam cost us about $1300. The results require the doctor to spend a long time manually reviewing I think thousands of pictures ... you will want to be confident in your doctor ... or at least make sure you can get all the images on a thumb drive or something. It is large so I am not sure how the images are saved or shared. Good luck!!!
10-13-2012, 08:21 PM   #30
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dannysmom,

Was that $1300 for the pillcam after insurance paid a portion or after a discount for a lowered negotiated fee that the doctor gives patients with your type of insurance? Just curious.

I agree with you about the path report, seems a bit vague as to how many biopsies and the exact locations. I'm really starting to lean towards just waiting to get seen at Stanford instead of seeing my GI on the 19th. My current doctor has been acting like I'm annoying to him because I ask questions and do my own research. He also seems tired and burnt out. I don't really want someone like that watching my 8 hours of footage from the pill cam. He might miss something! Maybe if I call Stanford everyday, I can get in on a cancellation. Today has been a hard day, feeling pretty bad again, so I hate the idea of waiting a month for just the first appointment with someone new.
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