Colonoscopy tomorrow- FINALLY!

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ginnyrdhap

ginnyrdhap

Joined
Sep 10, 2012
Messages
98
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. :lol:
 
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!
 
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.
 
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!
 
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.
 
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.
 
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?????
 
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.
 
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!
 
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!
 
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.
 
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.
 
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.
 
Yes, the cancer risk is a lot higher: http://www.hopkinscoloncancercenter..._Page_ID=0B34E9BE-5DE6-4CB4-B387-4158CC924084

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 06-2011.pdf
and http://www.livingwithout.com/issues...5890a:&st=pmail&s=P_TuesdayTip100212&t=B_TL_P
and http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html?pg=1
 
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!
 
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.
 
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.
 
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.
 
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.
 
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.
 
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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?
 
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.
 
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! :ywow:
 
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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!!!
 
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.
 
I just got my blood test results emailed to me from the Health One Lab that I ordered tests from online. That was so fast, I just took the blood test yesterday.

Well I wasn't surprised that my Vit D is low again : 23.5, normal range was listed at 30 - 100. I need to start taking that supplement again.

But I was surprised that my magnesium level was normal: 2.2, reference range was 1.6 - 2.6. I've been getting tingling in my feet and occasionally hands and thought for sure it was low magnesium. I think I read somewhere though that a person can be low, but get a normal result on blood test. Anybody know about this?

The other surprise is my C-Reative Protein was only .26 The report says that means my cardiovascular risk is low. I thought this test was measuring overall inflammation in the body. Did I order one that was specific for cardiac? Is there another CRP test for IBD?
Also weird is the Sed rate I had done 3 or 4 weeks ago was only 8, and the Prometheus IBD sgi blood test that said I had a pattern consistent with Crohn's, showed NO inflammation markers. I don't get it, I have all these symptoms but no inflammation shows up on any blood test. Are there other people that have a Crohn's diagnosis but did not have inflammation show up on blood tests?
 
ginnyrdhap said:
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.

.
Click to expand...

The total bill was about $1300 and insurance covered the first one. It has to be repeated with endoscopic replacement because it stayed in his stomach the entire 8 hours the first attempt. The dr/hospital did not make us pay for the second one when insurance refused.
 
There are many here with normal blood tests and end up get dx w/ Crohns (usually after a positive scope). Has your Vit B12 been tested?
 
Yes, B12 was tested in July and was on the low side, about 300. I'm taking a B-complex and it went way up, I think to 975 or so.

That's good to know that your insurance covered the pillcam. Thanks again for the info. Hope Danny's doing well.
 
Celiac disease testing, from I have read you need to be eating approximately 4 slices of white bread per day for 6 weeks prior to testing or you risk a false negative test.
 
Thanks Catherine, that's what I heard too. So since I can't risk getting really sick again by eating all that gluten/and or wheat, I guess I'll not be able to retest for Celiac.
 
I am doing a customized combination of the SC diet and the GAPS diet. It's the reason I can get out of bed and not be in pain all day. Not eating any grains right now, except an occasional slip up, and I really pay for it when I do.
 
CRP is a measure of inflammation in the body. Often used in the cardiac line but it is a general non-specific indicator of inflammation.

Did the lab advise you if they class it as high/ give you their normal range?

I think you'll find lots of people have had normal bloods and active IBD, DustyKat s daughter is one.
 
ginnyrdhap said:
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! :ywow:
Click to expand...

Hi ginny, Thank you for the report. That really sucks having Adenomatous Polyp. I am a little concerned about the pathology report because you didn't get enough info. Also wanted you to know I don't have any blood tests that shows inflammation makers either. I think it is pretty common but frustrating, but, my CT scan and colonoscopy definitely showed inflammation, as well as, the biopsies. If I where you I would keep the appointment with the current guy just to get the results so that the GI at Stanford can review the slides from your colonoscopy and the pillcam and do the study but this is only an opinion. I personally just hate the waiting game if you know what I mean.:ybatty:
I wish you all the luck in the world keep us posted! :hug:
 
Hi Stargirrl,

Thanks for the clarification on the CRP test. The lab did state that my cardiac risk was low.
I also appreciate you pointing out that lots of people have low CRP with active IBD. It still baffles me though.

Hi motheroftwins,

I decided to keep my appointment with my current GI tomorrow morning. You are right about needing to get more details from him about the pathology report and what he actually saw when he was doing the scope. My appointment wtih the new Stanford doctor got moved up to Nov.7th. I'm not sure if I should do the pillcam with current guy or wait for Stanford to do it. Are you thinking that I'll be able to get a copy of the actual footage from the pillcam to give to the new guy, or will he just get a report of what the current guy sees? I'm just concerned that current doctor might miss something because he seems tired and burned out. I know exactly what you mean about HATING the waiting game.

I just read through some of your posts about your story. I'm so sorry that you've had to go through such misery. I think you're right though to be getting a second opinion at UCSF. I hope you get a great doctor there. How old are your twins? My kids are out of the house now, I don't know what I'd do if I had to take care of young kids while feeling so awful.

I'm getting a bone density test done tomorrow for the first time to check for osteoporosis. Also my spine doctor is referring me to stanford to see a Rheumatologist to evaluate for Spondalytis. He found some inflammation on my right scaroiliac joint X-ray. But he said the spondalitis conditions are also difficult to diagnose in the earlier stages. Great!
 
Hi everyone,

I had my follow up appointment with my local GI. We discussed my colonoscopy results first. He said the ulcer in my TE was small and since the biopsy didn't show anything of concern, he assumed it was irritation from the bowel prep. He also said that there were two small polyps that were removed from the colon. He didn't think it was a big deal that they were tubular adenomas, but just reminded me that it's important to do another colonoscopy in 3 years to remove any new ones.

I asked him again about the reliability of the Prometheus IBD sgi Diagnostic blood test that came back as pattern consistent with Crohn's. He stated that it just suggested whether a person is likely to get the disease, but doesn't mean that you have it. I did a lot of research on this 4th generation test and found information suggesting that it is about 90% accurate. He again said that he doesn't think I have Crohn's because I don't have the diarrhea. I calmly (although boiling inside), reminded him that some people with Crohn's only have constipation. He agreed, but his attitude suggested that he thought this was pretty rare. I've had so many other possible conditions ruled about by the hematologist and rheumatologist, at this point Crohn's is the only thing that makes sense to me.

He then said that the next thing is to set-up the pillcam appointment to be able to confirm if it is Crohn's. At the end of the appointment, as I was getting ready to leave, he said "if you want me to put Crohn's into your chart as a diagnosis I can. If you don't want me to, in case you ever need to change insurance companies, and don't want a pre-existing condition, then I can not put it in your chart." This seemed really odd to me, but I asked him to put it into my chart because I'm thinking about applying for permanent disability. I'm just so confused though. He seemed to be so doubtful that I have Crohn's, but then was willing to put an official diagnosis in my records?? Before doing the pill cam??

Anyways, in the mean time, I have my appointment scheduled at Stanford on November 7th, to get a secpnd opinion from a GI up there. I'm thinking about canceling the appointment with local GI office to get the pillcam on Nov.5th. Maybe I should just let Stanford do it. I'm not sure I trust my local guy's ability or motivation to catch anything subtle that may show up on the footage. It will delay things a bit, but when I called Stanford to ask how booked up they get for pill cams, they said I could get in pretty fast and wouldn't have to wait the 2 weeks for preapproval with Bluecross that my local office said I would have to do. Hope they know what their talking about. I need to get as many expensive tests over before the first of the year when my $4,100 deductible kicks in again.

So, the waiting continues.....
 
It sounds as if your GI is trying to be as supportive as he can. My son's GI does put Crohn's down as the diagnosis for school forms, but made it clear to us that he is not convinced it is Crohn's and is therefore hesitant to try the heavy duty medications.

Is the Stanford doctor supposedly much better? I think it may be worth putting off the pillcam until after meeting with him ... then you can decide where to have it done.

Thanks for the update. Good luck!
 
Maybe he is trying to be supportive now, but he was not very compassionate in the past and is always going on vacation. The Stanford doctor comes highly recommended and I think it's good to get a second opinion, especially since my doctor seems burned out and not very knowledgeable about Crohn's.

Thanks for your reply!
 
Ughh, Ginny, I am sorry you are going through all this. Like life is not stressful enough! Maybe getting another opinon is the best thing. I wish I had some words of wisdom. I am going through the same thing as you are with trying to find out what is wrong with me. It sure can be frustrating to say the least!...














ginnyrdhap said:
Maybe he is trying to be supportive now, but he
was not very compassionate in the past and is always going on vacation. The Stanford doctor comes highly recommended and I think it's good to get a second opinion, especially since my doctor seems burned out and not very knowledgeable about Crohn's.

Thanks for your reply!
Click to expand...
 
Hi everyone, I just posted this in the My Story thread as well, hoping to get more exposure.

I had my appointment today at Stanford GI Clinic in Redwood City, California. The doctor I saw is a faculty member that has been with Stanford for 2 years. He trained and practiced in South Africa prior to coming to the US. He was very thorough, asked a lot of questions, and spent about 1.5 hours with my husband and I. He laughed when I told him about my positive results for Crohn's Disease on the Prometheus IBD sgi test. Said that they wished private doctors would not order these tests for diagnosing. He said that if they are negative, there's a very good chance the patient doesn't have IBD, but that a positive result is really just a 50/50 chance of being correct. In my case, he said, he was especially doubtful that I have Crohn's because I was negative for the ASCA IgG and only a 10.8 for ASCA IgA which is only slightly higher than normal. He wasn't impressed much that I was positive for Anti-A4-Fla2, Anti-FLaX, and Autoantibody ELISA. He stated that at Stanford they mostly use the Prometheus for their Prognostic test to help decide course of treatment.

He also thought my symptoms of abdominal pain, nausea, bloating, and constipation sounded like IBS. When I asked about all my other symptoms, such as unexplained weight loss of almost 10% of my body weight, extreme fatigue, canker sores, nose sores, spine and joint pain, low Vit B12 and D, mild peripheral neuropathy, severe head aches, very frequent urination, and extreme fatigue, and he didn't have an answer. But then, he explained that he feels Crohn's disease is a very serious diagnosis to get and that doctors should not be making it unless there is very clear evidence of inflammation. He said the medications can have lots of side effects and that he would not want someone to take them if they didn't actually have Crohn's. He also is doubtful that I have Crohn's because I don't have any inflammation markers in my bloodwork. He agreed with my local GI, that stool samples are not needed because I don't have diarrhea. I mentioned that my local GI suggested Capsule endoscopy (Pillcam) as the next test to do, and at first he sounded reluctant to order it. He said sometimes it is a bit "too sensitive" and picks up a little inflammation or small ulcer and some doctors are misdiagnosing it as Crohn's. He was considering at CTE or MRE but then decided to bring in the doctor who reads all their pill cam tests. This other doctor reviewed with us all the tests I had so far, and because I had a regular abdominal CT and SBFT that were both normal, she felt it was doubtful that an MRE or CTE would show anything. Also because no test has shown a blockage or stricture, she felt the risk of the pill getting stuck was very low. So we decided to schedule the pill cam first, and if that doesn't show anything, to do a Smartpill that checks for motility problems. The female doctor did mention that if ulcers are seen on the pillcam, they do have a scope with very long extension that can get a biopsy from the small intestine. I was impressed because I didn't know they could access that area with a scope. We also scheduled an EGD (upper Endoscopy) for tomorrow morning. The last one I had was in 2009 and they had found mild inflammation in the esophagus and just prescribed Prilosec, even though I had no acid reflux symptoms. The other thing he ordered is the Gastric Emptying Study, which measures the speed at which food empties the stomach.

When I told the doctor that I tested positive for SIBO and was treated with 1 course of Xifaxin he laughed at that too. He asked if my doctor told me what he thinks caused the bacterial overgrowth. I said no, that he just diagnosed it with the Hydrogen breath test. The Stanford Dr. seemed skeptical that I really had SIBO, then changed the subject. That was a bit confusing.

He is ordering another CBC because my WBC has been low (most recently 3), a new metabolic panel (which has always been normal), another check of Vit D since I just started my 50,000 IU rx), and check of Folate, RBC. He said (if I understood it) that if there is bacterial overgrowth there will be extra folate. He prescribed Zofran for the nausea and Bentyl for the abdominal cramping.

Anyways, that's where I'm at now. I'm glad to be getting more tests if it helps figure this out, but I'm getting so tired of them at the same time. They want me to prep for the pill cam, because they think it's more accurate that way. Yuk. I have to do all these tests up at Stanford hospital in Palo Alto which is almost 2 hours away. I get so uncomfortable riding in a car because of my spine and joint pain. I've got to get family members to take turns driving me up there because I don't have the strength to drive myself. Oh, I'll stop complaining now, and just suck it up and know it will be worth it in the long run. All-in-all, I was happy with the appointment, but find it a little disheartening that doctors have such different opinions about which tests to order, how valid the results are, etc.

BTW, out of curiosity, I asked him what he thought of LDN. He had never heard of it, but was familiar with Naltrexone as an anti-narcotic. I gave him some info to look at and told him about the Penn State study. When I mentioned that I joined an online Crohn's Forum he laughed again and said that can be trouble. I was a bit offended and explained that it's very informative and that some patients are getting good results with LDN. He said he would check it out and seemed sincere. I was surprised that he had never heard of it.

I'd love to hear from anyone that has any comments about all this. Thanks for reading! :sign0085:
 
My Update:

Well, my Stanford GI Dr. says my Capsule Endoscopy (Pillcam) results found two small ulcerations, but they were on the surface.The pathology report from Upper Endoscopy just says that the two ulcers in the stomach were lesional cells and the diagnosis was gastritis. So he said so far, we know I have IBS for sure, gastritis, and mild gastroparesis. He said even though I have many symptoms that sound like extra-intestinal manifestation of Crohn's, such as Spine and joint pain, with radiographic mild inflammation at my right Iliosacral joint, eye inflammation, mouth ulcers, weight loss, low Vit.D and B12 before supplementation, and fatigue, he just can't give me a Crohn's diagnosis without the microscopic evidence from biopsies. I had one small terminal ileum ulcer that was negative and two ulcers in the stomach that were negative. The 2 ulcers seen in the small bowel pillcam were not big or deep enough to try to get to and biopsy. SO.... he said he thinks it's a good chance I have Crohn's but for now he has to call it IBS. When I showed him a research paper that backed up Prometheus Labs' claim that their newest blood test (the IBD igs diagnostic test that said I was positive for pattern consistent with Crohn's) had a 85% accuracy rate in predicting IBD, he said that he can't diagnose with just that test. He said that putting in my chart a Crohn's diagnosis would be telling the world that I have an incurable disease which could have insurance implications. Also that the drugs used to treat Crohn's can be very strong and have lots of potential side effects. He doesn't want anyone taking them if they shouldn't be. He didn't even want to try a short round of prednisone because I was negative for all inflammatory serology markers. I told him that my problem right now is that I am so sick, I can't return to my job a as dental hygienist, and maybe never will be able to. I was hoping that I could get Social Security disability, although I've heard that it can be very difficult to get, but especially if you don't have a diagnosis. He was very nice about everything, and I do understand where he's coming from. At the end of the appointment he said that he really would like me to see his colleague, a female GI doc, next week for another opinion. I told him that I didn't think she would say anything different than he did if the microscopic evidence is the criteria needed to make the Crohn's diagnosis. Also its a 2 hr drive to Palo Alto and very difficult for me to do. He pretty much insisted that I see her though, and said she might have a different perspective. Maybe he wants to cover himself in case I really do have Crohn's and he doesn't want to get sued.

So I guess I'll keep the appointment with her. I'm also seeing a Stanford Rheumatologist next week to eval for Ankylosing Spondylitis and a local urologist to eval for Intersticial cystitis or overactive bladder. Maybe someone will give me a diagnosis that can be treated and maybe qualify for federal disability. We have two girls in college and my husband is so stressed out without my income coming in.

My theory (might be crazy though) is that I've had a mild form of Crohn's for years, and then in August had a really bad flare, but by the time I had the all the tests, I had cut out most of the trigger foods and my intestines had already started to heal. I don't know if that could even happen that fast though. When I suggested that to the Dr. he said, well just start eating all those foods again and get real sick then we can redo your tests. Oh dear. If I just slip up one day and eat a few trigger foods I have bad cramps, instant sore throat, horrible migraine headaches, my joint pain flares bad, and I'm more nauseous. There's no way I could get out of bed and drive 2 hours to Stanford to get checked. And to go through the preps again. Horrible! But maybe I'll have to do it at some point if I want to be sure they're not missing Crohn's.

On the other hand, sometimes I wonder if I should just forget about getting a diagnosis and getting SS disability. I could go to a holistic MD in San Francisco who prescribes LDN and maybe use medical marijuana. The traditional Crohn's medications kind of scare me anyways.

Well, guess I'm just taking it one day at a time now. We'll see how the next week full of Drs. appointments goes!

Happy holidays to everyone on the forum and hope all are doing well! :Karl:
 
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Sooooo close ... keep on going. He really would not let you even try a course of prednisone to see if it helps? I am sorry about that. This sure seems like Crohn's to me. Maybe the other GI and the rheumi can help. A diagnosis will be better for disability but even more so for treatment. Good luck next week!!!
 
Hey Ginny,

I am sorry you still have not gotten any real answers. I know how you feel!
I do understand about the whole insurance thing the doctor was talking about. Believe me, I wanted to get some extra life insurance a couple years ago and they listed me at like a level 13. When I asked the lady what that meant, she said it meant that I was at the high end of of high liability. I think they came to that conclusion due to all the things I have wrong with me.

Well it is good that you are getting checked by a urologist. Interstitial cystitis is considered a disability, at least here in Illinois it is. So maybe you can look into that as well in terms of helping you to get SSD. I mean I know my gastro doc told me that IBS can be debilitating. He said he has some patients that are on disability because of their IBS. Also, with chronic illness it does effect you mentally with stress and depression and that also can help with getting accepted for SSD. I feel so bad for you as I know what it is like to feel horrible and have so much pain all the time.

Maybe talking to that other Dr would be a good idea. I mean another opinion would not hurt.

I am sorry you are going through all this Ginny. Hang in there..
 
dannysmom: Thanks! I'm going to ask the other GI doc if we could just try a little course of prednisone just to see if it helps. I know the side effects can be bad, but I need to try something!

Ihurt: Thanks to you also. I know you've been through a lot, so I appreciate your info on insurance and disability. I haven't seen any posts from you lately on the forum. How are you holding up?
 
Hey Ginny,

Yeah, not to great for me. Ever since I did that MRE I have been wrecked. My bladder has been horrible. I got a UTI, and a bladder flare and it has been horrid pain since then. My gastro wont even think about doing any other tests on me now, and I honestly cant say I would want to do any after what I have been through with my poor bladder and the IC. Just awful...

I cannot believe your Gastro wont try you on a small course of steroids. Hell, I went to my regular doctor due to all the pain I am in and she even offered me the medrol dose pak, which is a weeks worth of steroids that tapers down each day. He could at least have offered it to you to see if it would help you. Do you think if you talked with your regular primary care doc about it he/she would be willing to let you try it? A lot of doctors will give it out for arthritis flares and stuff.

Maybe going to this lady doctor for her opinion, maybe she will be willing to let you try it. That whole 2 hour ride does suck though. uughhh, I hate traveling like that. The worst I did was a couple years back when I went to the fibro clinic in Detroit. Our flight got cancelled so we drove. It was a 5 hour drive! Boy did that suck! Never again. 2 hours still sucks, but maybe it would be worth it if this GI doc would be willing to work with you. That or maybe try and find one who is more near your area. I think all you would need is to have copies of ALL your tests so you can bring them to the new GI. That is just an option.
 
Ihurt,

Sorry to hear that you are still suffering from that stupid MRE prep. So did you go on the medrol dose pack? If so, was it helpful? Any bad side effects?
 
No I did not take it yet, I wanted to make sure I get rid of the UTI first since they say taking steroids can make it harder to fight any type of infection.

But I have taken the medrol dose pak before for sinus issues and it did help. The only side effects I had was night sweats and I would have to get up to pee once every night.( at the time my IC bladder was under control though). My doctor said that the steroids are suppose to bring down inflammation of any kind though. It would be worth a try if you can get your doctor to give you a trial of it...
 
OK, it's sounds like it's worth a try. I have eye, joint, and bladder inflammation that it could help as well as my bowels!

Hope your UTI clears up soon for you!
 
I saw the Stanford Rheumatologists today. They think I have a spondyloarthropy disease with enthesitis. They said the treatment they would start me out with is Humira, but first I have to get a blood test to check a bunch of stuff including liver and kidney function, Hep B and C. I also need to get a spine MRI to eval for sacroilitis, which can help confirm which specific type of spondyloarthropy I have. My X-ray showed some mild inflammation on the right iliosacral joint.( My grandmother has Ankylosing Spondylitis). I will be so relieved to try the Humira because my GI problems haven't been solidly diagnosed yet, so they haven't prescribed anything for it besides Bentyl. However, I guess there is a risk of the Humira masking any future signs of Crohn's which could prevent me from getting that diagnosis. I think I'll make sure my GI Dr.s are OK with that.
 

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