Trying to be Patient, but NEED a diagnosis!

[ginnyrdhap]

Hi everyone,
I have learned so much in the past 2 weeks about IBD from this forum! Thank you all so much!
It's somehow comforting to know that I'm not the only one who has been frustrated with Doctors and how hard it is to get a diagnosis so that treatment can begin. My family, friends, and employer keep asking me why I am so sick and I have to keep saying, "I still need more tests". Now I realize that this is very common for IBD conditions.

I haven't felt quite right for many years, but somehow just managed to deal with these health issues because they weren't acute. But i never really felt like I could enjoy life the way most people did. Three years ago I finally had medical insurance and was able to see a GI Doc. He diagnosed IBS and SIBO, I tested negative for Celiac from Upper GI endoscopy biopsy and blood test, even though I showed high genetic risk. The Xifaxan seemed to help for awhile. However, gradually over a year things got worse again with bloating, nausea, some constipation, fatigue, as well as many symptoms similar to CFS or fibromyalgia. When I learned that my 20 year old silicone breasts implants were leaking and possibly making me sick I had them removed without replacement. I felt better for awhile, but slowly started feeling really run down and sick much of the time. My job as a dental hygienist was getting extremely difficult!

Three months ago I told my GP about my concerns and all my symptoms. He did a CBC and said everything looked OK except my WBCs were a bit low (3.0). He just said to practice better sleep habits and eat more protein. Within a few weeks I went to a Spine specialist who diagnosed Degenerative Disc Disease in my neck with 27 degree scoliosis curve in my lumbar region. 5 weeks ago I got so sick I couldn't go to work anymore. I was constipated, had extreme nausea, bloating, cramps, dizziness, horrible headaches, TMJ pain, ear pain, sore
throats, neck and back pain, nose sores, tachycardia, shortness of breath, very tired and weak, pale skin, and dark circles. I've gone from 115 lbs to 102 in 5 weeks. It's scary to look in the mirror and see someone who looks like they are in a concentration camp. My GI doc was on vacation , so I went to the ER. They did chest, abdominal X-rays, abdominal CT scan, blood and urine tests. WBCs were down to 2.5 and platelets were a little low. But they said I was dehydrated and referred me back to GI.

I went back to the GI and I tested positive for SIBO again. I also saw a rheumatologist and a hematologist. The "Rheumy" said I tested negative on a bunch of rheumatological autoimmune stuff and the only thing the hematologist's blood work showed was slightly high protein and albumin, but I need to have a follow up with him on the 24th. The Xifaxan helped the acute symptoms (along with using the SC diet). But after 2 days without Xifaxan started feeling really bad again. Went back to GI and he said my Prometheus tests (IBD Sgi diagnostic and prognostic) showed that I had a pattern consistent with Crohn's. My sister was with me and we both said, "What, Crohn's???". He told us that he was testing for Celiac, we even wrote it down in our notes. The tests were over $1000 and only a fraction paid for by Blue cross because the lab is out of network. Well after getting over the shock, I realized I was glad he tested for it, because I am desperate for a definitive diagnosis. But then he said, he'd be surprised if I have Crohn's because my symptoms don't fit. I guess he meant that I don't have diarrhea and bleeding, and my blood work is OK. But after reading through this forum, it sounds like not all Crohn's patients have those symptoms. My sister and I were both mad that he was not very sympathetic, didn't explain much and kept asking if I was just under a lot of stress or was anorexic! Well, I finally have an appointment on this Tuesday for an UGI with Small Bowel study, then colonoscopy on the 26th (soonest they could do it). He said possible capsule camera if needed to confirm.
My General Physician was finally seeing the seriousness of my condition on Friday when my husband went with me to the appointment. He said if I can't hold out until these tests are done, he'll admit me to the hospital and we can get everything done right away. I'm tempted to just do that, but I hate being in the hospital and I never trust my insurance company to pay for things. They always try to find a way out. Oh, how I wish we had Universal health care in this country!

I don't think many people that haven't been really sick can relate to this bizarre dilemma we are in. Of course, I would much prefer to have a condition that was easy to treat and be done with, but when you are told that there's nothing wrong with you or that they just can't figure it out, then you start wanting to be diagnosed with a disease, even something as difficult as Crohn's. I want a diagnosis so I can figure out what I can do to heal myself. I also can't see myself ever going back to my job that is just so harmful to my body after 25 yrs. If I have Crohn's, it will help me justify why I need to retire.
Well, that's my story in a nutshell. I can't wait to feel strong and healthy again. And to be able to enjoy eating food and not just see it as a source of pain! After reading many other stories on this forum, many of them much harder than mine, I have to say that I am amazed at how strong and determined all of you are. Good luck to all on your road to wellness!

 

[David]

Hi Ginny and welcome to the community!

I'm sorry to hear of the journey you've been on

*hugs*

Based upon everything you wrote about, there are a few things for you to look into IF you are diagnosed with Crohn's disease as they would explain many of your symptoms and are associated with Crohn's:

1. Ankylosing Spondylitis
2. Magnesium deficiency
3. Vitamin B12 deficiency
4. Zinc deficiency

Even if you aren't diagnosed with Crohn's, definitely get your B12 levels tested as SIBO alone can cause that and it would explain some of your symptoms.

Please keep us updated as to how you're doing!

 

[ginnyrdhap]

Thank you so much for your reply David.

I really appreciate the suggestions. If I get a Crohn's diagnosis I will definitely check on the possibility of Anklosing Spondilitis. I checked through all by blood test reports and it looks like I have not had my Magnesium or Zinc levels tested yet. So I'll ask my doctors about that. My B12 was tested in June and was on the low side of normal at 330. I've been taking Nature Made B-100 complex since then and my blood test from a few weeks ago said it was now high at 991. I assume there's nothing wrong with being higher than normal for B12?

Speaking of Zinc, I remember 3 years ago when I got the Positive SIBO test results they gave me a handout about diet that also suggested taking 220 mg of Niacin a day to help repair the lining of the intestines. When I asked the GI about it, he said not to bother. Do you or anyone know if the Zinc is helpful for this?

Well, I have to say I'm actually excited about my UGI/Small Bowel xray tomorrow. It probably will not be a lot of fun (I hope I get the new kind of barium drink that you've mentioned), but maybe it can give us some information about what's going on. The doc sad he'd give me the report 48 hrs after the test, so I'll let the forum know what he says.

Thanks again for the support!

 

[David]

Hi Ginny,

Hmmmmmmm...

In addition to the Nature Made B-100 are you taking any kind of supplements? And how many of the Nature Made B-100's are you taking per day?

A B12 level of 991 pg/ml is great and not too high in my opinion.

Zinc plays a ton of different roles. This is an amazing read on it if you have time and the interest. However, do not blindly supplement it as zinc toxicity is a very real and too common issue. If you test low for it, fine, but don't blindly supplement it.

Good luck with the tests tomorrow! Let us know how they go

 

[KatyBuckeye]

Hi Ginny! Welcome to the forum! I can relate to your frustration. It can be VERY difficult to finally get a diagnosis of IBD. I responded to another post of yours about the Prometheus test. I wouldn't rely on that alone for a diagnosis, as it somewhat controversial. I understand that there are some people with Crohn's that don't have diarrhea or abnormal blood tests. As far as your other symptoms, unfortunately, there are many, many other diseases that could fit as well. I hope that you are able to get a diagnosis soon. I've had the experience of getting a Crohn's diagnosis to then have it questioned by other doctors. I'm waiting on some more tests and it is hard to be patient. In the meantime, the best we can do is research as much as possible and take full responsibility for the areas of our health that we can control (diet, sleep, exercise, etc.). Good luck to you.

 

[dannysmom]

Hi and welcome. I hope your tests went well today and you can get some answers! Please let us know.

 

[ginnyrdhap]

Hi Dannysmom,

My UGI/SBFT X-rays were not TOO bad, but not a lot of fun either. The radiologist said everything seemed normal but he had to review them more in detail. The report should be to my GI doc in 2 days. I guess it's good, but it didn't give any new clues as to why I'm so sick. I'll have to hang in there for the colonoscopy on the 26th.

 

[acheallova]

Ginny,
Not everyone is the same. I "warded" off Crohns for nearly 30 years my specialist says. But until official diagnosis- i thought drop you to your knees pain, bloating, decreased appitite and constipation were a part of daily life. Ûntil....the night it sruck and the bleeding started for 42 hours straight, almost 45 pounds weight loss, hospitalization and still no answers b/c blooid work only showed anemia. It may take months or years before other symptoms present. Or, if fortunate, some may never; however, we can keep our heads up, pray for and support each other and hope for divinitive answers. Hold on resolution will come.

 

[tink12]

I feel ya. I have not receive a diagnosis yet either, thou they are thinking it is Crohn's. I have been on Entocort for about 6 months now with about a 3 week period I was off of it. Ive had a Upper/Lower GI, CT with contrast, and MRI and still no diagnosis. Like you said you just want a diagnosis so you can began to heal your self. You can try to accept that you may have this but until you see it on paper you will never fully accept it (at least that is how I feel about this).
Good luck with this and hope you get a answer soon.

 

[ginnyrdhap]

Thanks tink12! What's next for you? Colonoscopy or pill cam? Did Entocort help?
Good luck to you too in getting an answer.

 

[ginnyrdhap]

Acheallova (great username btw):

Wow, I'm sorry it took so long for you to get your diagnosis. What tests gave your Doctor the confirmation he or she needed to confirm Crohn's?

You sem to be on a number of meds and supplements now. Are you doing better on all these?

Thanks for the support. It really helps talking to others in the same boat. My family is great, but they just don't quite understand how miserable and frustrated I am.

 

[acheallova]

Ginny,
I've found the Entocort® most helpful, except @ 8 weeks when i had to decrease my dose as directed - there was a definite difference. It is more mild in side effects b/c it releases in the intestines specificaly and not sestemic like prednisone - causing more side effects but working more quickly. My initial course of tx was iv vancomycin,cipro® and flagyl® which slowed the bleeding. There was a panic, when i presented to the ER and i had blood work, CT with and without contrast,MRI, sonogram - pretty much every test my little town could run ( i was considered for lifeflight to Billngs) because perforated bowel couldn't be ruled out. After 42 hours of straight blood loss and 2 weeks hospitalization with mild to moderate loss, i was scheduled for a colonoscopy. All those tests combined, minus the biopsy (was in-definate b/c of 3 weeks iv abx therapy) Crohns was diagnosed and off to a GI i went. Ever since, appointments every 2 weeks, blood tests, monitoring and medication adjustment. It's taken 3 months for bleeding to subside, dropped from 128 lbs to 87, but stable now @ 97 lbs.

 

[acheallova]

Thank you for liking the name .

 

[ginnyrdhap]

acheallova,
Were they able to see the ulcerations or granulomas in your colon or small intestine when you had the colonoscopy? I'm hoping my doc will see something when i have my colonoscopy next week. I've been watching you tube videos of actual colonoscopy procedures to prepare myself. Kinda weird I know, but I like to know what is being done to me with these kinds of tests.
Thanks for the info about Entocort. I'll keep it in mind if I end up needing something for Crohn's.

 

[ginnyrdhap]

I thought I'd post an update as to where I am know in the searching for a diagnosis journey. I'll also post this in my thread for the Undiagnosed Club.

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!

 

[David]

In the end, you're getting the capsule endoscopy and if that is normal, the smart pill test. So despite different feelings on everything else, your doctors are checking into things for you which is great.

A lot of GIs aren't familiar with LDN as a treatment.

And yes, support forums for diseases can be problematic at times for a variety of reasons. We try our best to present quality information and support but occasionally fall short. If you read other sites out there, they often fall very short. Sites like this are really good for some people and bad for some people. To each their own.

 

[my little penguin]

Glad you are getting the test.
Fwiw DS has had a normal ugi with sbft., normal blood results, no d just c, and very little to no blood.
But he has crohn's from end to end.
Hope the tests can point you in the right direction. As to what is really wrong.

 

[ginnyrdhap]

David: For me, this forum has been wonderful. I would be so confused about everything if I didn't have this resource. And all the support has kept me from feeling alone and depressed. Thanks for all that you and the other moderators do to keep this forum so informative and supportive!
Yes I am glad that we are moving forward with more tests. I had the Upper Endoscopy today at Stanford. The Dr. found two areas of Gastric Antrum with erosion. He said that if pathology finds granulomas in the biopsies that it would be Crohn's. When I looked up Crohn's in the stomach on the internet, I saw that this is not a very common area to find it. I also read in an article on Medscape that granulomas are absent 50-60% of the time in Crohn's biopsies. But we'll see. The pillcam is scheduled for Nov. 20th.

my little penguin: Thanks for sharing the info about your son. How did he get diagnosed? I'll try to find the thread with his story, but if you could briefly tell me his symptoms before he got diagnosed, I would be very interested.

 

[my little penguin]

He was dx at age 7. He is 8 now.
He stopped gaining weight at age 5.
He had "reflux", recurring vomiting every two weeks,
Stomach pain, rectal prolapse, FTT ( slow weight loss - even eating 2600 calories a day). Switched to boost kids and he would slowly gain weight. If we dropped one shake he would lose again.
Upper egd at age 6 was clean because he had been on steroids 7 weeks before.
Ugi with sbft clean even told it could not be crohn's by the radiologist since they could not visualize his TI ( hahaha)
Prolapse continued for close to eight months started to bleed and have a small amount of d... So upper lower scope=
Mild esophagitis
Gastritis
Duodenitis
Moderate active ileitis with granulomas.
Granulomas in ceacum
Later second scope proctitis .

Visually scope was normal with a small amount of redness in rectum and TI .
Biopsies with inflammation and granulomas = crohn's
We had his slides read by three different gi's and two different hospitals to be sure.
The problem with Gi "stuff" is there is a lot of overlap so you really want to be sure .
We lucked out since the found granulomas it could only be one of two things - since he didn't have the other it was crohn's
Good luck on the 20th.

 

[ginnyrdhap]

Oh, I forgot to say that when the Dr. came to give me the report after the endoscopy, he mentioned that there was a lot of fluid in my stomach. He looked a bit unsure of what the reason was for this but didn't say anything more about it. I was still a bit sedated so didn't think to ask if it was anything to be concerned about. Does anyone know what the cause of fluid in the stomach could be? My google search came up with things like liver or kidney problems. I don't see the Dr. again until the other tests are done. My follow up appointment is on Dec. 7th or so. Should I email him and ask, or is it no big deal?

 

[dannysmom]

The doctor sounds very main stream - and I feel your frustration. I am glad you are getting more testing. Did he comment on the ulcer in your TI?

 

[xmdmom]

I'm so sorry you've been feeling so sick and not getting clear answers yet.

The low WBC and history of low platelets is notable. There are a variety of causes (virus, autoimmune, bone marrow issues, infection, drugs, congenital) and if your WBC and plts remain low, a cause should be identified. If these blood counts are decreasing, a hematology consult might be helpful in sorting things out.

Best wishes!

 

[ginnyrdhap]

dannysmom: I did mention to the Stanford doc that my local GI had verbally mentioned that he biopsied a small ulcer in the TI. The local doc said that because the biopsy report was normal that it is not a Crohn's ulcer. He thought it might have been caused by the prep. (I haven't taken any NSAIDs in 3 months). The Stanford doc agreed with this assumption.

xmdmom: The Stanford doc just ordered another CBC and metabolic panel so we can see what's going on with the WBC and platelet counts. I actually did have a full work up with both a hematologist and Rheumatologist in September. Neither one of them could figure out what is going on with me. I've stumped them all so far.

Last night I looked back over my post procedure report from the EGD yesterday, and noticed that it said to use Prilosec (omeprazole) at 20mg by mouth twice a day for a month. After I read it, it jogged my foggy memory of the Dr. telling me this right afterwards. I guess I was still under the influence of the sedation. He was suppose to wait for my sister to be in the room with us, in case I wasn't awake enough, but I think he had to rush off to another patient. I don't have symptoms of GERD, and he didn't see inflammation in the esophagus, so I guess he wants me to take it for the erosions in the stomach (Antral gastritis). Twice a day for a month seems like a lot. Holistic practitioners don't think these Proton pump inhibitors are good for the body, but I'm not sure why. I guess I'll start taking them, but I'll do some research in the meantime.

I'm starting to wonder if I should see a urologist as well. I just constantly feel like I have a very full bladder, even after just going. I have to go every 1-2 hours, even getting up to go 3-4 times at night. There's no pain or burning and I'm not excessively thirsty. I think some people on the forum have wondered if inflamed intestines could put pressure on the bladder. It does remind me of when I was 9 months pregnant and constantly had to pee. I've had a few urine tests in the past few months but they are always normal.

 

[motheroftwins]

Hello, my goodness you are going through a lot. I am glad they are going to continue testing so you can get some sort of diagnoses and a treatment plan. I would be feeling very frustrated at this point. Although it sounds like the GI doc. in Stanford is willing to look into things. However, it would be nice if the GI doc. could be not opposed to putting the pieces together rather than ignoring other doctor's opinions and test results. Big Hugs to you sweetie!!!

My appointment at UCSF went very well all previous diagnoses are confirmed and no further testing at this time is needed, but I am to go back in six months to have a colonoscopy and endoscopy done at the same time. They are concerned about my stomach ulcers, in my esophagus and small bowel and the severity of the inflammation. I am to continue Humira and they want me back on Sulfasalazine and to continue Prednisone and start the taper once again. I am starting to wonder if this stuff ever ends. Anyways that's it or I can't remember anymore. lol

 

[ginnyrdhap]

Hi motheroftwins,

Glad you feel good about your UCSF appointment. I guess having the third opinion confirm your diagnosis leaves you with no doubt that you are getting the best treatment for your condition. That is worth a lot. I'm sorry though that you have to be on those meds for now. I hope you can get into remission like so many of the people on this forum.

I was just curious about your stomach ulcers. Do the doctors think that they are Crohn's ulcers or from some other cause?

 

[motheroftwins]

Hi motheroftwins,

Glad you feel good about your UCSF appointment. I guess having the third opinion confirm your diagnosis leaves you with no doubt that you are getting the best treatment for your condition. That is worth a lot. I'm sorry though that you have to be on those meds for now. I hope you can get into remission like so many of the people on this forum.

I was just curious about your stomach ulcers. Do the doctors think that they are Crohn's ulcers or from some other cause?

Hello, they do think it is Crohn's ulcers and the biopsies to prove it... It was worth the trip to UCSF. I hope we can both get into remission soon and everyone else on the forum. I hope you are doing well today.

 

[ginnyrdhap]

I wonder what the prevalence of Crohn's ulcers in the stomach is? I can't find much info about it but one site said that it was possible but rare. If my stomach biopsies come back as positive for Crohn's, do you think I should still do the pillcam to check the small intestine?

 

[David]

Yes. It's always good to determine the full extent of your disease.

 

[ginnyrdhap]

Thanks David, you're right. After everything I've gone through, I really need to know how extensive the Crohn's might be. Do you know what percentage of Crohn's patients have it in their stomach?

 

[David]

I do not, sorry

 

[acheallova]

I know my stomach was the main area of concern the first couple of days in hospital. Thank goodness it came back clean thus far but i had to go in for endoscopy, pending results, to make sure esophagus is clean. Its always nice to know all areas and diagnosis, then treatment can be started correctly for each area. - hugs-