A year of pain

Hello everyone,

This is the first time I've ever joined up on a forum, but I'm pretty desperate for advise and answers. My whole life I've had frequently loose stools and so much gas it ruled my life. I remember my first date with my wife, I had to go to the toilet three times to let out all the gas. I never sought help for it because it hadn't caused me any significant pain and it was embarrassing.

I'm 32 now and about a year ago I started to develop a dull ache in my left side that quickly turned into sharp pains and resulted in forty pounds of unintentional weight lose. When I went to my doctor about it he ordered a general CT of my abdomen which was clear, but my blood work shows high wbc, high sed rate, high CRP, and slight anemia.

He referred me to a GI doctor who never took a stool sample, but over the next 6 months performed an upper endoscopy and colonoscopy. He said both were normal and didn't take any biosies. The GI said maybe I should see an infectious disease doctor because I'm experiencing night time low grade fevers and fatigue. I also ocassionaly bleed from my rectum. Just in the last month my pain has intensified considerably. I developed an abscess in my groin on the left side (finishing up 20 day course of antibiotics for that), iritis of my left eye, and painful ulcers on the back of my tongue.

I told my primary I thought it may be crohn's, but he told me it's my diet (I'm fat) and I got myself into this mess and I need to get myself out of it through proper nutrition and maybe allergy testing. He prescribed some ibs medication that didn't help after I told him I was ready to go to the ER the previous day because of the pain.

After that meeting I've fired my GI because he obviously has no interest in helping me (but runs expensive tests without doing biopsy) and I'm seriously questioning the competence of my GP after being told this is all my fault.

I set up an appointment with a new Gi but can't be seen for a month. In trying to figure this out for myself I researched my signs and symptoms and have come to the conclusion that I probably have crohn's of the small bowel. A week ago I began supplementing with fish oil, turmeric, and NAC. The pain is by no means gone, but I don't feel like I'm seconds away from giving in and going to the ER (went once before and they didn't know what was wrong, sent me home with pain pills).

Does this sound like crohn's? What should I point out to the new GI when I see him? Are there other supplements that might help in the mean time?

Thank you in advance for any help you can provide.

Sounds exactly how I used to be!! I would have low grade fevers every night then it would break and my entire bed would be soaked. I always knew when a fever was coming cause my legs and bones would ache so bad and I would be so cold and shiver uncontrollably. I hot almost burning bath is all that would soothe me. I also had awful gas and had to run to the washroom like 10 times a day! Often I would see blood and mucous. Just nasty! The pain in the gut is excrutiating and exhausting. Not sure why he would not take a biopsy if he is already performing the test. Makes no sense to me. Unfortunately I am no Dr and can't say this is Crohn's but your symptoms are similar to mine and I was diagnosed 11 yrs ago. The GI didn't believe me either and thought I was creating my illness and weight loss. I was always asked if I had an eating disorder. But once he did the colonoscopy and showed me the images it was definitely Crohn's and he admitted he was surprised. After 11 yrs, surgeries and many treatments I am better but still struggling. Keep fighting for your health!!! Keep us posted.
Sorry, I want to add and I mention this to everyone. Take good notes of your day to day activities and symptoms, BM ( how many times, what they look like, blood/mucous present, how soon after eating) fevers and how long they last, nausea and vomiting, pain on a scale of 1-10 and location, any infections....as much as you can think of. Every little thing could help either you identify something and maybe even the GI if he is willing to look it over.

Can you call the new doctor snd ask if there are ant cancellations if they can fit you in?

Thanks and I will keep you all posted. Keeping track of everything is what led me to believe it's crohn's. Before that I just thought I was starting to fall apart and maybe had hiv or something weird and had a screening for that and hepatitis which were negative. I should also mention that I have fungal sinusitis (aspergillus balls) that I recently had surgery for and continue to have issues with.

They did have a cancelation while I was out of town and I've been calling hoping to get in earlier but no luck so far.

Glad you are going to see a new GI, they should take biopsies to see if you have microinflammation and do a fecal calprotectin test. I would also keep a food journal, I have foods/additives/preservatives which ramp up my symptoms.

Eridon2002 said:

Glad you are going to see a new GI, they should take biopsies to see if you have microinflammation and do a fecal calprotectin test. I would also keep a food journal, I have foods/additives/preservatives which ramp up my symptoms.

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I agree

I just got off the phone with new doctors scheduling and told them about all my symptoms. The lady on the phone said the same thing, that maybe I should see an infectious disease doctor. This absolutely infuriated me! The problem is in my gut, that's where it hurts and if it's an infectious process they can test for that! Fecal samples and a biopsy would be a start and failure to do that is why I switched to this guy... to get it done and figured out. I had to straight up tell the lady "yeah I know the other doctor didn't find anything, but I suspect crohn's of the small bowel which hasn't been imaged properly or examined" that shut her up and she admitted it was a possibility. I'm about ready to bash some heads.

Quick question do any of you know if my above mentioned supplements could cause interference with the calprotectin test?

Every time I have had a colonoscopy, they slwsays take biopsies. As to your question labour supplements and fecal calprotectin, I will tag clash.. As fst as being fst, there are others in here who are fat who have Crohns.

They always take biopsies from me when they have done colonoscopies. I don't know the answer to your question about supplements and the fecal calprotectin.

Im not sure about those supplements affecting calprotectin. Since calprotectin tests for inflammation in the GI tract it can be raised with infection, over use of nsaids, IBD, cancer etc. For some it is a great monitoring tool for others it's not.

I hope you find answers sson. I'd definitely request scopes with numerous biopsies as well as imaging for the small bowel.

Hope you find answers soon.

Odd that they would go to infection because of night time fevers since that is quite common during CD flares, as well as mouth ulcers, night sweats, fatigue etc.

Ok guys,

I did a pillcam test last Friday and I'm awaiting the results. He also ordered a stool test for parasites a couple weeks ago but I have not been to the lab to pick up whatever I'm supposed to poop in. I want to get it done but life's been hectic. Probably drop by the lab tomorrow.

DarthZ said:

Ok guys,

I did a pillcam test last Friday and I'm awaiting the results. He also ordered a stool test for parasites a couple weeks ago but I have not been to the lab to pick up whatever I'm supposed to poop in. I want to get it done but life's been hectic. Probably drop by the lab tomorrow.

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Best to you.

Good luck hope you get answers
But please don't fix on one dx
Ds was sick for a while
I was convinced as was his other specialist that he had an eosinphilic disorder of the Gi tract
He fit very well on paper but had one clean scope
Tried to get into the speciality center for egids and they agreed he fit on paper until they saw the clean scope
Was very frustrating since we were convinced he had this
Agreed to a secondary appt woth same doc as in the center but not a egid center patient
Long wait time - Ds got worse so his normal Gi scoped again this time agreeing with us that the doc would find egid -
Nope scope look mostly good but took biopsies anyways
Which proved crohns from top to bottom.


Same thing last year Ds was sick - everyone assume crohns was acting up including us
Nope scopes were clean imaging etc....
But he kept getting sicker
Finally figured out it was Gastroparesis
But we had to have the right test


My very long point is sometimes diseases look like a very good fit on paper but not testing
Doesn't mean something isn't very wrong but it may not be the right disease with the right test .

I agree with MLP to try not to fixate on a dx but I would make sure the GI knee you experience iritis. Also if there is joint pain I'd document that as well.

I'd write down every symptom you've mentioned,

Fatigue, anemia, night fevers, mouth ulcers, iritis, bowel issues, abdominal pain, rectal bleeding, etc.

Make sure the GI understands that you feel that excluding IBD or any other illness seems short sighted since you didn't have biopsies during the scope.

MLP is right there are so many things involving the GI tract that can mimic each other, so the most important thing is to be an effective, thorough health advocate for your health and to keep pursuing a diagnosis as long as you have symptoms present.

Thanks everyone,

I did let him know about all my symptoms and my eosinophils are high which is why he's testing for parasites. I just got called by the office. The pillcam found "two small erosions" in my small bowel, but the soonest the doctor will see me is a month from now! Can two small erosion s cause that much pain?

I don't know the answer but I'm sending support and prayers this to you