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Posted 10/6/2017 2:21 AM (GMT 0)
I had resection surgery in 2014 and since then I have been considered to be in remission with my Crohn's and on the advice of two Crohn's specialists, I have been on no meds because I'm considered to be in a low risk category.

I've struggled with IBS the whole time, but the past 6 months or so have been particularly hard with a lot of bouts of diarrhea, bloating, gas and GERD. We tried a round of antibiotics in August and it seemed to help, but my D is getting worse again and I'm more fatigued. My GI still thinks it's IBS, but to humor me he ordered blood tests. Everything was normal with the exception of these abnormal results:

WBC: 13.9 K/uL (range: 3.6-10.0)
Neutrophils 8.9 K/uL (range: 1.8-6.0)
Lymphocytes: 3.4 L/UL (range: 1.0 - 3.2)
Monocytes: 1.4 (range 0.2 - 0.9)

Vitamin B12: 256 pg/ML
Vitamin D: 25

My GI said these results look like a viral infection and wondered if I have mono. I have no fever, swollen glands, sore throat, etc. I've had mono as a teen and I am quite certain that's not it. The only symptoms I have are my GI issues and fatigue and occasional eye pain. I asked about repeating stool tests and fecal calprotectin and he said he'd be glad to do that if I wanted to, or I can wait and see what happens next. The B-12 is at the low end of normal, so I asked for a shot, which he also said we can do "if you want to."

So I'd love anyone's impressions??? I have a high deductible so the stool studies will be expensive (probably will cost me around $300.00)

My worry is that this is inflammatory stuff from Crohn's and not just a virus, because it has been going on for several months. He doesn't think a colonoscopy since I had one about two years ago which was normal. So should I just wait this out??? Thanks!
Posted 10/6/2017 3:21 AM (GMT 0)
WBC, Neutrophils, lymphocytes, & monocytes can be elevated with IBD.

B12 absorption is often compromised after surgery in the terminal ileum.

Where was your surgery? How much was removed?

Three years post op, with symptoms, warrants a colonoscopy if you ask me. Even without symptoms, I'd think a scope at three years post op would be appropriate if you haven't had one for a couple of years. It's EXTREMELY common for Crohn's to come back after resections. In fact, histologic/microscopic inflammation can be found in most people around the resection site just days/weeks after surgery. And macroscopic inflammation is commonly found within months after resection.

Just assuming you're in remission when everything is pointing the other direction seems odd. I think you're right to worry this is 'inflammatory stuff from Crohn's.'
Posted 10/6/2017 3:23 AM (GMT 0)
If it turns out there isn't much of any Crohn's activity, I'd wonder next about small bowel bacterial overgrowth (SIBO). It's more common following surgery, especially if the ileocecal valve was removed.
Posted 10/6/2017 8:58 AM (GMT 0)
I definitely think do a stool test. I also think now would be a good time to do a colonoscopy since you had one two years ago and a lot can change in two years when you are not on any meds. I don’t think it’s unusual for a colonoscopy to be normal only a year after a resection. But three years post was around the time I got rescoped and found inflammation (I also had a resection and went unmedicated for a few years after). Around 50% of Crohn’s patients will relapse within 5 years after a resection and the statistics go up each year.
Posted 10/6/2017 12:24 PM (GMT 0)
Gumby - stopped by only to find this. Hmmm...I am not a lab expert, but I have a few statements and questions.

Why no meds s/p resection? I had my resection in 1990 and have been on maintenance meds since. Granted they may or may not be helpful based on "studies". However, I notice when I do not take them (my issues are terminal ileum based and that was what was removed).

Your labs show some tick up. I see a reason to have a scope. Even if the scope is to give you a new baseline of normal since the resection. If you have not had a scope since the surgery, how will they know if your next one was "normal/abnormal"? I think it is time for a scope. Perhaps that trip to the other GI would be worth it?

My TI was removed and I am on lifelong B12 supplementation (not as frequent in the past two years, but I still supplement). You should look into ongoing B12 as it can help to minimize several other issues (I found).

The eye pain is what made me decide to write....All of the other issues could self resolve or need meds. The eye pain should be looked at. It definitely sounds like the capper to "you have inflammation going on" to me.

On the insurance side...you have a HDHP. Do you have a HRA/HSA paired to the HDHP? If you do, can you use the funds in that? I do not use my HSA balance when I am doing well to save up the funds for the worst case year - if all else goes well, I have that to pay for claims should I become disabled, have an accident unknown or if I ever get to retire (hahahaha never going to happen!)

Your GI is sounding wishy-washy again. I really think you should send your test results/sypmtoms to the other GI you had.

Hoping you improve soon!
Posted 10/6/2017 12:24 PM (GMT 0)
Yes, after 2 years without a colonoscopy I'd be asking for another one. If the Crohn's has come back anywhere, it's going to be at the resection site, so make sure that biopsies are taken from there.

Not sure there is much point to a stool test. I'd save the money for a colonoscopy imo.
Posted 10/6/2017 12:56 PM (GMT 0)
I'd be asking for a scope also, if for no other reason than to rule out active CD in your colon.

Keep on them about finding out what's up, I'd hate for you to have something over looked just because a doctor isn't "concerned" at this point. I agree it's odd no maintenance meds, I thought that was standard procedure any more just to nip recurrence in the bud.
Posted 10/6/2017 1:37 PM (GMT 0)
I agree with what everyone else has said...its time for another scope. If just one test result was abnormal i would think its IBS but there are several tests that are abnormal so it looks like IBD. Hope you get some answers soon.
Posted 10/6/2017 2:56 PM (GMT 0)
Thanks everyone for your replies! I love all of you!! I'll try to answer your questions, and then share some of my responses and thoughts.

I had an ileo-colic resection, so I did lose my cecum and valve, and they took around 17 cm after a partial bowel obstruction and stricturing. At the time, I went to U of Chicago and saw Dr. Rubin, who is supposed to be a renowned expert in treating Crohn's. His perspective was that I probably had Crohn's for several years before my diagnosis in 2007, and that it appeared to be the slow growing variety. I don't smoke and I'm old (almost 59) so treatment with biologics has its risks. I took 6MP in the past and had immediate elevated liver enzymes so they don't want to use that again, and he believes, like many other docs that Pentasa is worthless. So his perspective was that I'm in the category where doing no maintenance meds was his recommendation.

I have struggled with c.diff, but after my fecal transplant I haven't had a positive c.diff test, so I think that's resolved. I do think that I've also struggled with SIBO, but apparently my current blood work indicates a viral shift rather than bacterial, which is why going back on antibiotics might not make sense.

I'm thinking of waiting a week or so, (in case it really is a simple virus) and If I'm not significantly better, then I'll do the stool studies with the calprotectin test. I would love to wait on a colonoscopy until January for financial reasons, but we'll see. I started this post to see if you thought the increase in WBC might indicate a Crohn's flare, and it sounds like you are thinking that yes it does, so that is helpful.

I really don't know what I'll do next if it really is active Crohn's.....at that point it might make sense to go back to Dr Rubin for a second opinion.

Thanks ever so much.....it really helps to process all these complicated decisions with all of you. This disease has no easy answers and it sucks!!
Posted 10/6/2017 3:01 PM (GMT 0)
Oh and Habs.....I did have a colonoscopy when I had my fecal transplant in February, 2016, and at that time all my biopsies were normal. So Jan-Feb 2018 will be two years, so maybe a colonoscopy then makes sense. But if I get sicker, I'll ask for it sooner. (and I really miss you.....hope you are doing well!)
Posted 10/6/2017 9:40 PM (GMT 0)
I've met Dr. Rubin at a conference. Sat next to him at lunch after he gave a presentation. He knows his stuff well.

I agree with his approach, with one major exception:
Given you can't tolerate imuran, and that your Crohn's was probably a very gradual progression to surgery over many years, and that mesalamines aren't helpful, the only meds left are the biologics (or methotrexate). So it's not a bad decision to say no meds.

BUT, anytime a person has had a surgery and is on no meds, they definitely fall in a category of risk that Crohn's can/will come back, so frequent monitoring is a necessary key component to treatment. To me that means a scope about every year, two years at the most.

I'm on no meds and I get a scope every couple years and an MRE every couple of years just to make sure things aren't getting worse.

So if you want to give it a couple weeks to see if a viral thing passes, that's fine. If you get worse or don't improve, get in to a GI and get checked out.
Posted 10/6/2017 10:32 PM (GMT 0)
Gumby,
When I had a flare that led to my CD diagnosis, my WBC was elevated and my RBCs low. I had extreme fatigue and of course, non-stop D. I have been concerned for sometime that they keep writing off your continuing symptoms as IBS. If nothing else, it could be a problem with having lost your ileocecal valve.

As to your B12 level. If you were in Europe, that would be considered very low. I believe they use 400 as the bottom on normal. I had a neurologist that was very concerned when my level was 240 and the PCP and GI didn't think treatment was necessary. At the time I had significant neuropathy. The neuro had me first try taking sublingual methylcobolamin. I actually could absorb it that way and got my levels up.

Most B12 supplements are cynacobolamin. For the body to utilize the B12, it has to then convert it to methylcobolamin, which can be problematic for someone that has CD. That is why it is essential to use methylcobolamin. I buy mine at Super Supplements.

Hoping you can get answers soon.
Posted 10/6/2017 10:56 PM (GMT 0)
Beave--thanks for the input. I have always intended to closely monitor things. We have done calprotectin tests in the past which were fine, and my colonoscopy in 2/16 was perfect. I think I really do have significant IBS, or post surgical issues, and I definitely have had bouts with bacterial overgrowth. I know my local GI doesn't think I need a colonoscopy this year, but he also would do one if I wanted him to. He and Dr Rubin are like polar opposites. My doc is super kind and listens well to me and will do what I need, but he is a general GI, not a Crohn's specialist and he's a bit cavalier about things. With Dr. Rubin, I was asking a bunch of questions, and her literally said to me "I'm the doctor. You're the patient. I'll listen to your symptoms and tell you what to do. You don't need to choose what to do." It rubbed me the wrong way. That being said, I'm sure he knows way more than my local GI and certainly way more than I do about Crohn's treatment. So here's my plan. Let me know if it makes sense
1. I'll ride this out for a week or two and see if I'm getting better or worse
2. If I'm getting worse, I'll get stool cultures and fecal calprotectin to see if there are inflammation markers and or an identifiable infection
3. I'll try to hold out until January for a colonoscopy (financial reasons) unless I really am getting sicker
4. I'll have my local GI do a colonoscopy, and if Crohn's is active, then I think I'll head back to Chicago to see what Dr. Rubin thinks about how to treat it.

I am about a 6-7 hour drive away from Chicago, so I really need my local GI involved. Too many little things come up and I can't go to Chicago all the time. But I also really value Dr. Rubin's expertise, so I'm trying to combine the best of both worlds. Dr Rubin was a bit snotty to my local GI, so they are not too fond of each other, which is awkward and uncomfortable for me.

Ides....I have had B-12 shots in the past. I contacted my PCP and asked for a shot. That helped bring up my levels last time and works better than the oral or sublingual stuff for me.

Thanks for all the support and helping me to process all of this.
Posted 10/6/2017 11:57 PM (GMT 0)

Ides said...
As to your B12 level. If you were in Europe, that would be considered very low. I believe they use 400 as the bottom on normal. I had a neurologist that was very concerned when my level was 240 and the PCP and GI didn't think treatment was necessary. At the time I had significant neuropathy. The neuro had me first try taking sublingual methylcobolamin. I actually could absorb it that way and got my levels up.

Not in the UK unfortunately. I think it varies slightly from lab to lab, but around 200 is the bottom of the normal range. As my B12 has been between 200 and 300 every time it's been tested (not very often), I've never been considered to be clinically deficient in B12. I've been taking a vitamin B12 spray this year, so I dunno what my B12 levels are now. But I get the distinct impression that UK GIs don't take B12 very seriously.

gumby44 said...
With Dr. Rubin, I was asking a bunch of questions, and her literally said to me "I'm the doctor. You're the patient. I'll listen to your symptoms and tell you what to do. You don't need to choose what to do." It rubbed me the wrong way.

That would proper wind me up. He wouldn't be my doctor for long with an attitude like that. I'm sure he's super duper qualified and all the rest of it, but I just couldn't hack the god complex. I've also not always had typical Crohn's symptoms, and am bad at explaining the symptoms I do have, so I would be worried about being fobbed off on the basis of symptoms alone.

gumby said...
I am about a 6-7 hour drive away from Chicago, so I really need my local GI involved

Flipping heck. That would be the equivalent of me driving to Scotland from London. People at my Crohn's hospital think I come from far away when I tell them where I live - it's about a 45 minute drive away! It's not ideal (particularly when my local hospital is within walking distance of me -_-), but it is the much better hospital for IBD. Better doctors, better funded, etc.

Post Edited (NiceCupOfTea) : 10/6/2017 6:02:55 PM (GMT-6)

Posted 10/7/2017 1:14 AM (GMT 0)
gumby, plan seems reasonable to me.

Funny to hear about Dr Rubin's behavior. He seemed fairly nice at the lunch. It's fascinating to see these 'top doctors' and how they behave outside the usual circumstances we see them in. One was downright rude to me when I told her I was a patient and not a doctor. Some have been indifferent, but many have been very nice and friendly to me. But it's apparent some of them have huge egos. They love keeping track of how many papers they've published. And they don't all get along - I've heard some badmouthing of each other when one isn't around.
Posted 10/7/2017 1:24 AM (GMT 0)
I don't think Dr. Rubin is a bad guy, and he has a lot of knowledge, but he also has a huge ego. I had a SBFT test at my local hospital the week before I saw him and brought the radiology films. He insisted that U of Chicago had better equipment and radiologists so he wanted the test to be repeated. When the sent me to get the test I was assigned to a medical resident who didn't even know how to work the x-ray machine. My radiologist at my small town hospital trained at Mayo clinic. I paid for a test twice and it was completely not useful and unnecessary. That kind of stuff was maddening! But I'm not one to cut my nose off to spite my face. I really don't know what will be the best place to start medication wise if my Crohn's returns, and I would be interested in what Dr. Rubin would think. I guess I'll cross that bridge when I come to it.

And NCOT....there are many GI docs between where I live and Chicago. I chose to go that far because of Dr. Rubin's reputation with Crohn's, but it isn't a viable option for day to day care.
Posted 10/7/2017 10:02 AM (GMT 0)
Gumby, sorry you are having all these issues. Personally, I would have the colonoscopy. its the gold standard to really knowing what is going on. I am 55 yrs old, and as you know I am on entyvio and methotrexate after my second resection surgery just 3 1/2 months ago. I have had at least one scope every year for the past 12 years, with some years having 2. Mayo clinic just asked my local GI to do another one with the issues I am having.

I am like NCOT in that I would not stand for the doctor (Rubin) belittling me like he is doing to you. Most of us crohnies are well educated about our disease and deserve a good conversation with the dr. I suggest you find someone else. I live in NC and went to Mayo at recommendation of my local GI. now he works in conjunction with mayo, mayo says once I am stable they transfer primary care back to the local GI and act as a consultant when needed. after my initial 7 day visit for testing, thenof course surgery the next month, everything has been done electronically. what is interesting I or my insurance has only been billed for the face to face mayo visits, all of the electronic followup has been free. just a thought. I suggest you look at mayo clinic in Rochester MN.
Posted 10/7/2017 12:53 PM (GMT 0)
Hi mirowpl,
That's not a bad thought. My first reaction was that my Crohn's isn't complicated and maybe I'm not sick enough to justify a trip to Mayo Clinic. But I have known several people who have gone there for non-Crohn's issues and, like you, they had excellent care. I'll consider it, thanks. How are you doing these days?
Posted 10/7/2017 1:27 PM (GMT 0)
well, they think I am in a flare. my right foot is swollen and hurts. prednisone gets it under control, ut the day I finish a taper, its back. so after 3 trys, its time to go look inside. they were going to do this in dec, so just moving it up. they don't think entyvio is doing any good. the resoning is no tnf blocker has, in fact nothing has ever really worked. besides that I am tired all the time, cant sleep, just feel crappy. but things could be worse, we have a lot of bd things going on in the world. I am happy to have a great family and the best wife ever!
Posted 10/7/2017 1:53 PM (GMT 0)
Aww, I'm so sorry! I wish we had more medication options for Crohn's. It seems like the biologics only help a subset of people. I hope all your other medical issues are at least stable. Take good care, as you have been through so much.
Posted 10/7/2017 2:05 PM (GMT 0)

gumby44 said...
And NCOT....there are many GI docs between where I live and Chicago. I chose to go that far because of Dr. Rubin's reputation with Crohn's, but it isn't a viable option for day to day care.

Reputation is one of those things that I suspect have less to do with the highly reputatable doctor's skills and more to do with ego, self-promotion and publishing lots and lots of papers.

Admittedly I am biased. My first hospital supposedly has one of the top GI departments in the country. I didn't know that at the time - it was just my local hospital to me. (St. Mark's in Harrow, if anyone from the UK is interested.) And it was crap, absolutely crap, at treating my bogstandard case of Crohn's. It must have done something to merit its top dog reptutation, but none of that translated to superior treatment for the patients: or at least not for this particular patient. Perhaps if at the time I'd had a severe case, the benefits would have been more obvious - I don't know. But I didn't and my case turned severe after I had left them for general uselessness and apathy.

I'm not sure I buy the concept of top dog GIs either. It's not like they're doing anything fantastically skilled like surgery or can magic up wonder treatments out of thin air - the same relatively tiny number* of Crohn's meds exist everywhere you go. All you need to be an excellent Crohn's doctor is keep up to date with current research, apply the knowledge in clinical practice, and not be an arse to your patients.

I mean, you must do what you think is best for you, gumby. But there is no way I'd drive 7 hours to see somebody who told me "I'm the doctor, you're the patient, now shut up and listen." (Yes, I've paraphrased that slightly.)

*It's even fewer now that mesalazine has been found to be no better than placebo for Crohn's

Post Edited (NiceCupOfTea) : 10/7/2017 8:11:17 AM (GMT-6)

Posted 10/7/2017 3:06 PM (GMT 0)
Gumby44,

It seems I differ from many. I would probably do the drive...just until I was able to find a specialist closer to my location or someone my local GI could work with. It sounds like your current regular GI is willing to work with you and collaborate with others. That is wonderful. Your specialist helped stop a flare and probably has a good knowledge base. They may be able to work together to stop this flare...and while doing that I would work on getting in at Mayo. It may be a little uncomfortable but I would see if they were willing to do it. I don't think I would share that game plan with either doctor. If it slipped your old specialist may refuse to assist.

I don't care about bedside manner....I care about the knowledge contained and desire to learn more... and the doctors successful application of his knowledge to help their patients and their ability to articulate their reasoning while being open to new or different treatments. My first GI had a terrible bedside manner....I did not care. He could not or would not articulate findings or treatments so I ran the other way. Thank Goodness I found my current specialist. If he moves I will just have to drive to see him and have him work with a local GI. He is the director of the GI department yet he works with Mayo on my care.

I did have one doctor ask me where I went to medical school once. I asked him when he had contracted Crohns..whose body it was and who had the most motivation to get me better... I explained that people with Crohns are very educated about their disease and treatment options. We only have to research for us...not for every patient...and studies of 1 can be relevant if you are that one or if there are multiple different small studies that indicate there may be something tangible and workable. He was an ***. I told him he was a jerk..not because of his bedside manner but because his ego only allowed him to have a myopic point of view.

I really do think you need a colonoscopy so they can see what is going on. My damage all occurred during a six month period. Everything was nice and pink with a little inflammation and 6 months later I had so many ulcers it looked like a black hole... I know everyone is different but now I tend to be more cautious.... And sometimes all that damage can't be repaired.

I hope you feel better soon and are able to get the kind of care you need!

Clo
Posted 10/7/2017 4:45 PM (GMT 0)
Thanks NCOT and Clo.
I appreciate all of your advice. I'm very proactive and I won't let this simmer for too long. I just want to not over-react either. I've had Crohn's for 10 years now and if I've learned anything it's that problems become apparent eventually. Thanks for everyone's advice!!
Posted 10/7/2017 9:48 PM (GMT 0)
Good luck with whoever you decide to see, gumby!
Posted 10/7/2017 10:07 PM (GMT 0)
Thanks NCOT,
I'm going to stay with my local GI until I know I have active Crohn's and then I'll look into what I need to do. I'm actually feeling pretty good today....so we'll see if that continues. It is possible that this really is a viral gastroenteritis. If it's not, I'm sure I'll figure that out eventually smile
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