Opinions on Doctor's Diagnosis

[CavsFan]

Hello - I recently had a colonoscopy due to a small amount of blood in my stool. It was mostly precautionary with no other symptoms. The doctor said there was inflammation in my small intestines that was indicative of Crohn's. He said it is a mild case. I am 27 years old. I met with him today and he wants me to start taking Entocort EC 9 mg a day. He ordered me the following blood work tests:
Hep B Surf Ab.
Hep B Surf Ag.
Hep B Core Ab Total
TPMT Enzyme - Prometheus #3320
varicella titer
QuantiFERON - TB Gold
C Reactive Protein
Total Serum IgA
Transglutaminase IgA Ab.
He also wants me to get an MR Enterography with/without contrast

Does anyone have any knowledge of what these tests may or may not show. As mentioned I do not have any symptoms and I really do not want to be taking medicine the rest of my life that may have other adverse side effects. He said that the medicine will be used to help the inflammation and then I would have another colonoscopy in 6 to 12 months to see how it is doing. I then asked if it was possible that if it was better I would be able to get off the medicine and he said if it is working why would you get off it. Can you take Entocort your whole life or was he just referring to getting on some other type of medicine?

I am very hesitant with all of this. I feel like this all came on so suddenly and do not know what to do. I kept asking if there was anything else that could cause the inflammation but they are so set on Crohn's Disease. Is there any natural way to deal with this especially because I don't have any symptoms? Is it possible to be inflammed for a completely unrelated reason? Will any of those blood tests or MR Enterography show that? If I did try to control it through my diet or other things like some people do, how would I know if the inflammation is still there if I do not have any symptoms?

Would anyone recommend getting a second opinion or will all doctors just say the same thing?

 

[JaimeM]

If you can get an aggressive handle on your crohns in the beginning it can reduce your complications later.. It's great that you caught it so early so you can get a handle on things right away.. The longer your bowel is inflamed the more damage is done. Which can cause things like perforations/fistulas/stricutring

I'm an xray/CT tech and have a bit of knowledge of MRIs.. But basically you'll drink a lot of contrast and it will highlight your bowel. They will also inject a contrast through your IV. This will give a good look at your liver, kidneys, bowel. Anything that Crohns can affect. The blood work are the other tests you listed. The C Reactive Protein is to check for inflammation in your body, The IgA I think is an inflammatory bowel panel(basically people with Crohns would test high on this, it's just another way to definitively diagnose Crohns) I'm not sure about the other tests.

Entocort is usually a fairly short term drug. It's a type of steroid. I was on it for 6 months when I first was diagnosed with Crohns. I really wouldn't recommend going off of the medications though, Because like I said, the better handle you get on it right away the less complications you will have down the road.

The area where you are inflamed in your bowel is usually a good sign that it's crohns.. I think a majority of people have it in the terminal ileum. It sounds like your dr is doing a lot of things to definitely diagnose the crohns- the blood panel and MRE are a good place to start. From what my dr said they usually want three tests to prove their crohns diagnosis before treating with meds. I had my blood panel as positive, a capsule endoscopy, and a CT Enterography (which is pretty much the same thing as an MRE just a little different)

 

[Eridon2002]

Some of those blood tests are to determine future treatment option, the Hep B, TB, TPMT. You only want to be on Entocort long enough to lower the inflammation, not long term. Once the blood tests are back he'll have a better idea of what maintenance med put you on. Looks like he is thorough with the tests they are going to do. You don't want to wait till you have symptoms because then it is a lot harder to get under control and you're doing more damage to your body

 

[CavsFan]

Thank you both. The only issue I am having is that the only reason he is doing these other tests is because I asked for them. The doctor called last week and told me he was giong to call in a prescription for Entocort and I should start taking it right away. If I wasn't diligent and setup an appointment this week, he wouldn't have run those other tests and would have just had me on Entocort for 6 weeks until I met with him. That is part of the reason I am unsure about the medicine because I feel like doctors jump to conclusions really quickly. Thanks for the comfort that these tests are relevant and will help determine the issue. That makes me feel a little better. I'm not sure if he wants me on the meds right away or if he expects to wait until after the results, but I am going to choose to wait until after either way I think. Not sure if a couple of weeks will make a huge difference for a mild case.

 

[ronroush7]

Welcome to the group. I have had the enterography twice recently. My most recent blood work came back fine but the most recent entrrography showed inflammation in the gut. He ssd more than likely referring to medicine in general rstherthsn Entocort. I wish you the best.

 

[my little penguin]

Here is the issue
If you had a large gapping bleeding wound on your arm would you fix it or wait till someone told you exactly why you had the wound.

Your colonscopy and probably your biopsies as well should evidence of crohns ( certain cellular changes can be found ) this results in inflammation .
Basically like a cut your body is trying to "fix" your intestine even though it isn't broken so it causes it to get pink and inflamed ( think small cut) each time it cycles through to fix it the inflammation slowly firms scar tissue ( think scab on your arm)
The scar tissue causes a few things your flexible intestine ( garden hose ) becomes hard ( plastic pvc pipe ) and somethings narrows ( strictures/obstructions ) or puts so much pressure the intestine grows its own very thin tubes around the area ( fistulas )

The problem is if you don't stop the inflammation cycle the disease will progress - how fast it progresses can vary from person to person some can flare badly within weeks other simmer with inflammation for months till damage is done.

Meds can't fix scar tissue - cutting it out it the only option
You can live without a large bowel but can not live without a small intestine

So keeping everything as healthy as possible on the inside for as long as possible is key

Oh and if constant inflammation increases risk of cancer as well


The disease is ugly and hidden and in some when you don't have obvious symptoms it's harder to figure out when your flaring

Tagging Clash

As far as meds entocort is designed to be short term months not a maintence med

Aza/6-mp and Mtx would be the immunosuppressants at a lower level used long term in some to control the disease
Other need biologics

Outside of pure formuka diet ( no food ) or SCD
( which typically isn't enough for most alone without meds )
Those are the only proven non medicine routes

The beginning is the hardest
If you don't trust your go then get a second opinion
They can re read your biopsy slides at another hospital to confirm dx

 

[Clash]

My son has been asymptomatic with active disease for some time. This led to him requiring surgery due to the severity of ulceration in one area. The severity was caused by simmering inflammation just as my little penguin explained as opposed to raging inflammation.

There are a number of members that are asymptomatic with active disease. You aren't treating to alleviate symptoms you are treating to achieve a healthy bowel with mucosal healing. This level of treatment is an effort to lessen the repercussions active inflammation can have on your bowels.

The labs they are running seem to be in preparation of a maintenance medication and CRP is an inflammatory marker. The MRE will determine if there is narrowing or inflammation further up in the small bowel that scopes can not reach.

You can have one of the large IBD clinics do a records review (doesn't require you to travel) as a second opinion or you can schedule.a second opinion with another GI.

 

[Scipio]

Here''s what these tests are for:

Hep B Surf Ab.
Hep B Surf Ag.
Hep B Core Ab Total = all three of those are tests for various aspects of hepatitis B.

TPMT Enzyme - Prometheus #3320 = a test for your ability to metabolize thiopurines. Doc may be considering azathioprine or 6mp therapy for Crohn's, and this is a preliminary test to guide the dosage.

varicella titer = test to see if you have had chicken pox

QuantiFERON - TB Gold = a test for tuberculosis

C Reactive Protein = A general inflammation test that is commonly but not always elevated in active inflammatory bowel and rheumatic diseases.

Total Serum IgA
Transglutaminase IgA Ab. = two tests for celiac disease

He also wants me to get an MR Enterography with/without contrast = a way to visualize parts of small bowel that cannot be seen via endoscopy - probably to look for bowel wall thickening and other signs of inflammation.

 

[CavsFan]

Thank you all. Should I wait until after these blood tests to take the medicine? I plan on getting them next week, but by the time I get the results it could end up being 3 weeks or so. I thought that was part of the reason why my doctor wanted me to get the blood work, but just got a call yesterday that said my prescription was ready so I am not sure if I am supposed to start on the medicine right away.

 

[Eridon2002]

If they called in the prescription then they likely want you to start taking it right away. Even if it is a mild case now you want to nip the inflammation in the bud before it gets too bad/causes damage. For me, Entocort didn't give me many side effects(I think I didn't sleep as deep on it).

 

[teeny5]

I was on Entocort for a bit to kick my body into remission. Here is what my GI said...the stronger meds are to help get you into remission (Entocort still is pretty mild) then he said I would take maintenance medication for the rest of my life. He constantly reminds me no matter how great I feel to keep taking the maintenance meds. The reason is that a mild flare is easier to get under control than a bad one. Inflammation...Even if you have no symptoms is very bad for your body. His goal right now is to keep me in remission and avoid surgery.

I would take the meds as prescribed and discuss any concerns with your dr. Write down questions before hand if you feel you might forget. I have also had my mother or husband with me if I felt I might need the support during the Dr appt.

 

[Bunty]

My little penguin....
I just wanted to say what a great explanation you've given, I wish someone had explained it all like that to me right at the beginning, you've made it very easy to understand.
Thank you.
Bunty x

 

[Scipio]

I say go ahead and start taking the Entocort right away. Many of those tests are for the purpose of determining whether you are suitable to take azathioprine or 6mp. Your doc's strategy is apparently to induce remission with the Entocort and then maintain it with azathioprine. And he wants to have the blood test data ready and waiting when it is time to move off the entocort.

 

[CavsFan]

After having my Total Serum IgA and Transglutaminase IgA Ab blood test come back, my doctor just called and said that I might have Celiac disease. He mentioned that I could be dealing with both Crohns and Celiac and I was wondering if anybody had any experience with both or experience with diagnosing which one it is. I am getting an MR Enterography next week and he wants me to get an Endoscopy as well. Will either of these procedures help determine if it is Crohns or Celiac or both or are they just to see if there is any inflammation elsewhere in my digestive tract? Part of me is hoping it is Celiac as I understand this is a diet change and should improve while Crohns seems to be more difficult to control. I have no symptoms right now. Also my C Reactive Protein came back normal which I believe is a guide for inflammation.

 

[ronroush7]

You may have a mild form. I have Crohn's Disease and I have had to make a lot of diet changes as well as stay on top of medicine. Some people do well with Crohn's once they get the right mixture of medicines. I have had to stay away from gluten just like people who have Celiac's Disease. I think with the MRE they can see things they aren't able to see with other tests. Please let us know how you are doing.

 

[ronroush7]

You may have a mild form. I have Crohn's Disease and I have had to make a lot of diet changes as well as stay on top of medicine. Some people do well with Crohn's once they get the right mixture of medicines. I have had to stay away from gluten just like people who have Celiac's Disease. I think with the MRE they can see things they aren't able to see with other tests. Please let us know how you are doing.

I am sorry. This was directed at CavsFan

 

[my little penguin]

Tagging Mehita her son has both

The upper endoscopy is to look for signs of celiac in the upper part of the intestine .
Crohns can affect the upper part of the Gi tract as well

You need to still be consuming wheat for weeks to months up to the scope for celiac

 

[EastCoast902]

To Cavsfan- You sound like me! I was asymptomatic until Sept 2015 when suddenly I had what they called a flare-up. Because I have a family history of Crohns I went to the Dr and told him I needed to be checked. After blood work and a CT scan they dx me with Crohns- Dr gave me 2 options for meds Entocort or Imuram. I wanted to research them before he prescribed. I had my scopes within a week or two and I have a 40cm section of the disease in the small bowel- he prescribed Entocort mid December. The GI clinic want me on Humira- either straight up (can't afford with no med coverage) or in a trial which would be a combo of Humira and Imuran. I am hesitant not because the Entocort isn't working 100%, but because I do not want to go on the strong drugs in the event they stop working and then what will be my options. My head is still spinning from the diagnosis. Diet as bland as it is does help with the pain aspect of this nightmare!! Good luck!!

 

[my little penguin]

@eastcoast902 humira has my humira protection plan so that covers the copay that your regular insurance won't cover and leaves most with a copay of $5

If you have a structure of 40 cm of small bowel them that is not mild even if you have no symptoms on the outside.
The goal is to hit the disease with the best meds possible to you can keep as much healthy bowel as possible for as long as possible
Odds of surgery with crohns without biologics
Is 75% within 5 years of dx
With biologics it's drops to 30-40%
When biologics first came out trials were done on folks who had failed everything else
Now after 15 some odd years most Gi know to try the top level drugs since they have the best chance at saving the gut

My kiddo was dx at age 7
Started biologics at age 8
And is currently 12 with a pristine Gi tract due to biologics

He will have been on humira for 4 years in April

Stopping the disease from progressing and causing damage is what all crohns folks want
Good luck

 

[Mehita]

Thanks for the tag, MLP. Hey there, Cavs Fan... sorry you had to find us here on the Forum.

Looking through the posts, it does't look like they ran a Celiac panel yet? Usually, when Celiac is suspected they'll run blood work (IgA, IgG, tTg, etc) and if that comes back positive, they'll do an upper endoscopy to see if villi are blunted or flattened. They will also do biopsies and can test for Celiac specifically. Keep in mind though that Crohn's can show flattened or damaged villi as well.

The bummer with both suspicions of Crohn's and Celiac is that symptoms are so similar (which is quite frustrating!). I think your GI is on track with testing you for both and taking Entocort will not affect any Celiac testing. Like MLP said though, you do need to be eating a diet with gluten containing foods at least two weeks prior to the tests (scope too). It's not common to have blood in the stools with Celiac though.

And, unfortunately, as my son is living proof, it IS possible to have both diagnosed Celiac and Crohn's. Like you said, I'd take Celiac over Crohn's any day. No matter what the results, you will get through this. Like the others advised, I'd do the tests your GI suggests and try to catch things early. Good luck!

 

[my little penguin]

http://www.gihepnews.com/specialty-...is not inferior to fresh for fecal transplant

 

[CavsFan]

So I just got a quick message from my doctor who said my MR Enterography came back normal. I am not really sure how to interpret that, but I guess it is a good thing. He still wants me to get the Upper Endoscopy. Does anyone have an opinion on what normal means? Basically my situation is that I do not have any symptoms or Crohn's, but during a colonoscopy, the Dr. said he saw some mild inflammation/ulceration at the end of my small intestines which he keeps saying is indicative of Crohn's. Did some more blood work and C Reactive Protein came back normal, but Transglutaminase IgA Ab. for Celiac came back high. Still hoping for only Celiac, but not sure what the doctor is thinking. Don't know if normal means saw same inflammation that was seen on colonoscopy or if it means saw no inflammation.

 

[ronroush7]

I don't know but I wish you the best.

 

[Scipio]

""Normal" on an MRE probably means the image showed no narrowing of the intestine or thickening of the intestinal wall that are often the signs of Crohn's. Your colonoscopy and blood test results suggesting celiac disease still remain.

This is really good news if the diagnosis turns out to be celiac instead of Crohn's. Celiac disease is not fun or easy, but it's far easier to control and less damaging to the gut in the long run than Crohn's.

 

[my little penguin]

Glad it was normal
An upper endoscopy could give answers for a plan in the long run as to which disease you have and how to handle it.

Glad they are doing the scope to help get you answers

 

[Mehita]

Any more news CavsFan?

 

[CavsFan]

No news yet. I have my upper endoscopy tomorrow afternoon so we will see what comes of that. I have a lot of questions for my doctor, but don't know how long I will be able to talk to him since after the procedure I am sure I will still be out of it. I will keep everyone posted once I hear results.

 

[ronroush7]

Hoping the best.

 

[CavsFan]

I had my Upper Endoscopy today. I don't really remember talking to the doctor afterwards because of the sedative, but here is a summary based off of the report I received what my wife said. Esophagus - normal, Stomach - normal, Duodenum - Mucosa Patchy erythem and erosions of the muscosa with no bleeding was noted in the duodenal bulb and second part of the duodenum. Multiple cold forceps biopsies were performed. I believe he said he will be checking it for Celiacs, but not sure what he thinks about Crohns now.

Also I received a hard copy of the pathology report from my colonoscopy and the comment says that the histology is consistent with Crohn's disease. That having been said, no granulomas of Crohn's disease are seen and similar histology can be seen in the small intestine in association with non-steroidal anti inflammatory drugs.

As mentioned my MR Enterography came back normal but I dont have any other details on that. My only blood wok that came back high was my Transglutaminase Anitibody IgA which was 46 and normal range is <20. It is noted as a moderate to strong positive. Also, my Varicella zoster Antibody igG was >4,000 with the limit being <135. My Varicella zoster Antibody IgM was 0.67 with the limit being <.90 so it was normal. Not sure what this means, but before my endoscopy he mentioned something about my bloodwork showing an infection or virus, but I don't know which one he was referring to because the only test we discussed before was the Transgluatminase one.

I have had all of these tests within 1 month so it is getting pretty overwhelming. I really appreciate everyone's insight on this site so please let me know your thoughts.

 

[ronroush7]

Thank you all. Should I wait until after these blood tests to take the medicine? I plan on getting them next week, but by the time I get the results it could end up being 3 weeks or so. I thought that was part of the reason why my doctor wanted me to get the blood work, but just got a call yesterday that said my prescription was ready so I am not sure if I am supposed to start on the medicine right away.

I would say to go ahead and take it now. Let us know how years you are.

 

[Scipio]

"Also, my Varicella zoster Antibody igG was >4,000 with the limit being <135. My Varicella zoster Antibody IgM was 0.67 with the limit being <.90 so it was normal. Not sure what this means."

The high varicella IgG means you had chicken pox at some point in the past. The normal varicella IgM suggests that the chicken pox infection was not recent. The moderately elevated transglutaminase IgA test suggests that you might have celiac disease.

 

[CavsFan]

Thanks. Has anyone had bad throat pain after an upper endoscopy? My throat hurts every time I swallow and when I touch my neck around my adam's apple area it hurts. My procedure was Friday so it has only been about 3 days. My doctor said this isn't normal, but he didn't seem to concerned about it. Just wondering if anyone else has had these issues and have any advice?

 

[CavsFan]

So I was looking at my online chart and it has been updated after my Upper endoscopy to include: Abnormal findings on dx imaging of prt digestive tract and Abnormal levels of other serum enzymes. It also says Celiac Disease which is what I thought the doctor was testing when he took a biopsy, but it is not addressed on the letter he sent out to me. I haven't received the letter yet, but the nurse read it to me and it just talked about stomach acid and that I should be on medicine to reduce that. However, I do not have an appointment with the doctor for another month and a half so not sure what I am supposed to do. Based off of my Upper endoscopy he said it was still up in the air whether it was Crohn's, Celiac, both, neither so I'm not really sure this gives me any answers either. Still really no symptoms of any of those things, but I want to get started on diet/lifestyle changes if I need to.

 

[Mehita]

Just my opinion, but I see no reason why you can't go gluten free now. Heck, people do it all the time. The only reason not to is if you haven't done the testing process yet, but you have.

For what it's worth, my son felt better within a week of going gluten free with his Celiac dx. I have heard that it can take 6 months for adults though.

Good luck!

 

[ronroush7]

Just my opinion, but I see no reason why you can't go gluten free now. Heck, people do it all the time. The only reason not to is if you haven't done the testing process yet, buy you have.

For what it's worth, my son felt better within a week of going gluten free with this Celiac. I have heard that it can take 6 months for adults though.

Good luck!

Agree

 

[CavsFan]

Well after a colonoscopy, Blood Tests, MR Enterography and Upper Endoscopy, I still have no idea what is going on. Still don't have any major symptoms which is good, but the original possible Crohn's diagnosis after my colonoscopy has really scared me. After the EGD, all my doctor wrote in the letter is the following:

Biopsies from the duodenum demonstrated inflammation. This is usually a condition that could be caused by too much acid in the small bowel. I have asked the office to make sure you are taking a medicine to reduce acid.

However no mention of Celiac, no mention of Crohn's, and currently I am not even on any medicine to reduce stomach acid.

It seems like it is really all a big guessing game at this point so I just wonder if I should do anything because I don't really know what is right. The only things that have come back are inflammation/ulcerations in the small intestines seen during colonoscopy, nothing on MR Enterography, Transglutaminase IgA Ab came back high, and now this stomach acid stuff. Really have no idea where to begin and my appointment isn't for another 6 weeks. Debating on getting a second opinion for another doctor to review everything. Just wondering if there is anything else that could cause some inflammation/ulcerations in my small intestines and duodenum without just assuming it is Crohns and resulting to steroids and medicine the rest of my life.

 

[my little penguin]

Second opinions are helpful and most doctors welcome a fresh set of eyes
Had two second opinions for Ds
Sent his imaging pathology slides etc to another hospital with a good Ped Ibd clinic
And they came to the same conclusion -crohn which was nice since Ds didn't present typically

Good luck