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Second round of tests, I'm worried and could use some advice!

Hey everyone,

I have been worried for a couple of months now and felt I would like to find some people who really know about crohn's.

I would like to run my story by you and see what you say if that is ok!

I'll try to be brief, here's my story.

I'm 30 years old, male.
I got diarrhea about 4 years ago and lost alot of weight. I suspected IBD and saw several doctors back then.

The GI I was sent to ran a battery of tests, coloscopy with biopsies, blood work, CT etc. He said I don't have Crohn's, nothing indicated it and he got a good view of the last bit of the small intestine and took biopsies there as well.

I was still worried and to ease my mind he had me swallow a pill cam.
The results were good and I didn't think much of it. Some parts were hard to get a clear view of, but what they saw looked perfectly normal.

The diarrhea was found to be from a C.diff infection (which I've had recurrent bouts of during the past 4 years and been on and off vancomycin since basically).

Anyway I got better and have lived a good life for the past couple of years, eventhough my stomach has been queasy I haven't really been able to trust it so to speak.When my stomach has acted up on and off I've put it off as IBS.
I've had 5 cups of coffee a day, alcohol and spicy food has never been a problem.

I've still traveled, worked, started a family worked out etc, no problem and no diarrhea. I had put the thought of Crohn's out of my mind, after being convinced I had it 4 years ago.

However I got some more intense pains about 2 months ago.
They are located on my lower left side and are quite painful at times. I also have to run to the bathroom alot, no diarrhea though just really upset and queasy.
I've had to cut out coffee for instance, it just doesn't work anymore.

I saw a new GI (previous one retired) and he ran some tests.

I'm scheduled for a Coloscopy and Gastroscopy on January 4:th, not looking forward to it.

I actually had a coloscopy done in April of this year with 10 biopsies taken and it all came back good.
I also had a CT of my abdomen done about a month ago which was normal as well.

Based on this, my GI tells me that he doesn't think I have to worry too much about Crohn's but he would like to scope me himself just to see if there is something going on.

My F-calprotecin levels were very low and normal which he told me is another very good sign.

I still worry however since my symptoms are quite bad right now.
They are basically;
Upset stomach, worst in the mornings.
I have to run back and forth on and off, sometimes without producing anything.
Don't really ever have diarrhea.
Usually sleep well, symptoms tend to start when I wake up.

Pain on the lower left, left of the belly button a couple of inches or so.
Sometimes a burning all over the left side and up towards right below the ribcage in the middle. Comes and goes.

Bloating of the lower left side ocasionally, sometimes extreme looks like I'm pregnant!

No blood or mucus ever.

Now that is it basically:)

I have a feeling people here know all about the tests I've gone through and how straining it can be.

I personally feel like I've gotten a lot of help and been thoroughly looked at.
Is there anything more that should be done in your minds?

Now what I'm trying to look at as positive is the fact that I had that coloscopy just in April, a CT scan a month ago (which ruled out diverticulits amongst other things) and that the F-Calprotecin is normal.
All my blood work is good as well.

Having been very thoroughly checked four years ago feels pretty good as well.

Being the worrywart that I am I can't help thinking about this nonstop and it's pretty much driving me crazy :ywow:

What do you guys think about my predicament?
Does this sound like Crohn's to you?

I really appreciate any input.
 

SarahBear

Moderator
Location
Charleston,
Hi, Uncertain!

I agree with your GI; if biopsies taken in April were negative, you probably don't have a lot to worry about. Since there's no bleeding and seems to be no inflammation, it is possible that it's a tough case of IBS, but that doesn't necessarily rule out Crohn's or other possibilities. Make sure you continue to keep an eye out for blood!

Are you having any other problems? Fatigue, nausea, joint pain, anything at all - even if it doesn't seem to be related to stomach issues. When your intense pain started two months ago, had you changed your diet or lifestyle in anyway? Were you under a lot of stress? Do you have a family history of IBD?
 
Thank you for your reply!

I have felt a bit fatigued for the past 2-3 years as I've been getting colds often and such. The docs have attributed that to being on and off antibiotics for so long making me more susceptible to them.

Last year and prior i played basketball, practiced 5-6 times a week but I had to quit because I kept getting these colds constantly.

Besides that, no I haven't had any other health problems really.

I do live a very stressful life.
My wife works a lot, she's a lawyer, I'm the CFO of a large international corporation.
We have two kids, one and five as well so there is not a lot of downtime :)
I have no family history of IBD, nor anything else really.

Hmm no I didn't really change anything it just snuck up on me. I remember exactly how it started.
I was putting my son to bed and just started feeling extremely nauseous and my stomach felt upset the next day. I thought I caught a bug, and rested for a few days and I got better.
The nausea passed over night.

After being okay for a few days, coffee and everything worked again, it returned for a week or so, only to improve, then return etc.

It was pretty weird really!
 

David

Co-Founder
Location
Naples, Florida
Hi there, welcome to the community. I'm sorry to hear of your stuggles. My thoughts:

1. With normal fecal calprotectin and biopsies, my guess is that you don't have inflammatory bowel disease.

2. You may want to research and discuss the idea of small intestine bacterial overgrowth with your doctor. The symptoms fit. Also make sure the c.diff isn't back if that hasn't been tested for lately.

3. Get your vitamin B12 and vitamin D level tested as well. The B12 because deficiency in that can cause your symptoms and the D as deficiency there can cause a lowered immune response and fatigue. I'd also bet you're deficient in [wiki]magnesium[/wiki] but the tests for that are terrible. If you're like other executives I know, you pound coffee and have a poor diet which leads to deficiencies in these vitamins/minerals which can cause all your symptoms.

4. Start a food journal. See if you can correlate any of your symptoms with any specific foods. An exclusion diet and food allergy testing might be worthwhile.

We're here for you. Let us know how we can help further.
 
Hi there, welcome to the community. I'm sorry to hear of your stuggles. My thoughts:



2. You may want to research and discuss the idea of small intestine bacterial overgrowth with your doctor. The symptoms fit. Also make sure the c.diff isn't back if that hasn't been tested for lately.

3. Get your vitamin B12 and vitamin D level tested as well. The B12 because deficiency in that can cause your symptoms and the D as deficiency there can cause a lowered immune response and fatigue. I'd also bet you're deficient in [wiki]magnesium[/wiki] but the tests for that are terrible. If you're like other executives I know, you pound coffee and have a poor diet which leads to deficiencies in these vitamins/minerals which can cause all your symptoms.


We're here for you. Let us know how we can help further.
Hi David!

Thank you for your input.

It's funny you should mention it, I actually was thinking about small intestine bacterial overgrowth and have already asked my GI about it. He says it's worth looking into should all the tests be normal.

My B12 was actually a bit low a couple of months back, 150 or so. I've been getting shots for it once a month since.

I forgot to mention, but I had two feet of my small intestine removed(resection) after a car accident in which it was perforated six years ago.

They attribute the deficiency to that, that my absorbtion is not as good as it could be.

Besides that I've had no problems since the surgery.

This surgery would also make me more likely do develop SIBO according to my GI since it can create "blind spots" where bacteria can gather.

Very interesting I will certainly proceed with this after my tests.
 

afidz

Super Moderator
Hello and welcome!
have you been tested for celiac's disease or lactose intolerance?
I personally don't know very much about the symptoms of celiac's, but I met someone recently that has it and a lot of the things she described were very similar to Crohn's. Maybe (one at a time) try eliminating gluten and lactose from your diet and see if you notice any changes. Hope this helps and you start feeling better soon!
 

afidz

Super Moderator
Sorry I missed the post about your accident.
When my dad was 5 he went flying through the windshield and severely damaged his intestines, a few years later he was diagnosed with Crohn's and then a few years later he had a resection where he too lost quite a but of his small intestines. Because of the resection certain types of food don't digest well ( if have to ask him to be sure) but he gets intense pain sometimes for what seems like no reason. His doctor told him that the reason that he can't handle certain foods is because the part of his intestines that was removed was the part that typically digests those foods. David I am not sure if what I am saying makes sense, I am just going by what my dad had always explained to me, have you ever heard of something like this happening? I am curious though because my dads story and symptoms and uncertain's are very similar
 

David

Co-Founder
Location
Naples, Florida
It's funny you should mention it, I actually was thinking about small intestine bacterial overgrowth and have already asked my GI about it. He says it's worth looking into should all the tests be normal.

My B12 was actually a bit low a couple of months back, 150 or so. I've been getting shots for it once a month since.
Have they retested your B12 since you commenced the shots? If so, what was it? If not, you should get tested and make sure once a month is sufficient to get your level up. With a level of 150 I would like to have seen loading doses but it doesn't sound like you received those.

I forgot to mention, but I had two feet of my small intestine removed(resection) after a car accident in which it was perforated six years ago.
What part of your small intestine, do you know? Duodenum? Jejunum? Ileum? Terminal ileum?

They attribute the deficiency to that, that my absorbtion is not as good as it could be.
Vitamin B12 is absorbed in the terminal ileum (the last part of the small intestine just before the large intestine) so if they are attributing the deficiency to your resection, I assume that is the part that was removed. Small Intestine Bacterial Overgrowth (SIBO) can also lead to B12 deficiency as the bacteria can take the B12 for themselves and not share it because their parents never taught them the virtue of sharing (parents these days, sheesh). Magnesium is also primarily absorbed in the terminal ileum which makes me think even more that you're deficient in magnesium as well which could be contributing to many of your symptoms. It's VERY hard to get enough magnesium in a standard western diet and even moreso if you're not absorbing as much as you should be.

Besides that I've had no problems since the surgery.
I assume the CT Scan was clear for adhesions from the surgery?

Do you have ANY other symptoms? Even stuff you might not be connecting with your gut issues? Sores anywhere including your mouth. Rashes. Twitching. Numbness. Restless leg. Heart racing. ANYTHING else that might be a clue?
 
Thank you for your reply,

About the B12, yeah I did get loading doses, I think it was 3 shots a weeks for the first two weeks and now it is actually once every three weeks I just checked.

Yes the CT scan didn't show anything. I've had a lot of CTs after the surgery to make sure no problems would develop. I used to get one every year.

I'm not absolutely sure what part was removed, but I'm almost 100% it was the very last end of the small intestine. It was one of the ends for sure.

I did get symptoms from lack of B12, no anemia but I did start to get some mild neurological symptoms, to be specific tingling in my fingers and feet.

That is when they diagnosed me with B12 deficiency, after a neurologist ruled out slipped discs etc with MRI and borelia with lumbar puncture.

This was less than a month before my stomach started being this troublesome!

I called the surgeon who performed the operation six years ago and discussed the B12 matter, he said it was very common to slowly see your B12 levels dwindle over several years, and then need shots when they get too low.

I've been on shots for a couple of months now and the finger tingling is slowly fading, it's a lot better. Feet are all better they don't tingle at all.

I'm getting really curios about this SIBO, I am for sure going to discuss this with my GI when I have my Coloscopy and Gastroscopy.

Oh lactose and gluten, I was checked for gluten with a blood test and I didn't have that.
They are going to check more properly when I have my exams, but I don't think that is it.

Lactose I don't know. I try to avoid it, drink lactosefree milk for instance. They will check this as well they said.
 
Hey just wanted to throw in an update.

I've just had my coloscopy and gastroscopy this morning, it went well but I'm not a fan of the gastro and have really bad pains when I swallow now.

Everything looked good, no sign of inflammation anywhere and they took 30 biopsies from the colon and small bowel both start and end.

The lining looked perfect all over which was a relief for me.

They did find a small hernia(type 2, where 1 is smallest and 4 is largest) in the sphincter that connects the esophagus to the stomach, which would explain the burning sensations that I've experienced.

It'll get treated with meds.

They also took biopsies to check for gluten and B12 absorption.

The doctor told me that I should put any thoughts of Crohn's out of my mind, since I've been so throughly investigated and there are no signs of it whatsoever. He told me this round of tests was probably unnecessary, but he wanted to make sure.

Some of the symptoms may be related to my surgery, there are some parts of the bowel that are a bit narrow and bends funny, which is normal after a resection.

He believes the cause for my symptoms are IBS, and possibly long term treatment with Vancomycin for C.Diff (several years) which has disturbed the gut flora.

I'm being prescribed a new antibiotic that can hopefully get rid of the C.diff permanently.

I am pretty happy now to at least now that there is no visible inflammation or scarring.
 
No, they haven't rechecked B12 yet they will do that in a few months when it's stabilized, it would probably be in the thousands now with the booster shots and all.

I brought up SIBO, he didn't seem to think that was the case but was willing to look into it and I'll get tested for that as well.

The doctor did feel that I was a "textbook case" of B12 malabsorbtion with the resection I have had.
 
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