Crohn's Disease Forum » General IBD Discussion » I need help sorting out an with an unconfirmed diagnosis

11-26-2017, 04:27 AM   #1
Join Date: Nov 2017
I need help sorting out an with an unconfirmed diagnosis

I am suffering from two different helth conditions, listed below, that cause me to have several socialy unaccetable symtoms, listed further below, I need a solution:

The first medical condition is proctitis which is having the lower rectum chronically inflamed which results in having all of the symptoms around the rectum. I have noticed that ingesting food containing sulphur, sulphur compounds or food that become sulphur in the body makes the rectum more inflamed, creates excessive foul smelling gas & burping and causes flatulence incontinence.

Two of the most effective ways of decreasing proctitis symptoms like inflammation and gas is by decreasing ingestion of anything containing or producing sulphur and by doing as little physically as possible.
NOTE: Although you will feel the symptoms decreasing it will not be enough to function under longer periods of time.

The second Medical condition is unbalanced gut flora with symptoms usually being centred around the stomach area which in my case means having chronic inflamed belly, stomach pain, excessive gas, excessive burping, stomach growling and being food sensitive towards all foods which means having diarrhea often.

The best of the two most effective ways of combating the symptoms of an unbalanced gut flora is through fecal transplant which can fully cure you and the second being through ingesting several doses of probiotic supplement throughout the day because a dose contains 20billion live culture and that only gives me about 3 symptom free hours.
NOTE: Probiotic supplements really do make you symptom free for a couple of hours and while there is a small improvement in proctitis symptoms, it doesn't really help much.

All the symtoms I am experiencing
1.Excessive gas
2.Excessive burping
3.Extremely intolerant to sulphur or any sulphur compound
4.Extreme food intolerances when all tests have come out negative for food allergies
5.Stomach growling
6.Pain in abdomen
7.Balloon belly
8.75% diarrhea and 25% normal poop
9.Sometimes pain in rectum when pooping, this happens once or twice a month
10.Sometimes little blood in toilet paper, this happens once or twice a month
11.Constant feeling of inflammation/irritation in the lower rectum
12.Constant feeling of rectum pushing as if it was trying to poop
13.Wanting to poop but unable to, feeling as if rectum can't for some reason
14.Mucus and liquid coming out of rectum, not when pooping, but when physically active
15.Flatulence incontinence (not fecal incontinence)
16.Constant sinus inflammation, extremely low sense of smell
17.Short breaths, fog minded, low energy
18.Feeling tired, weak, irritated, sleepy, dizzy, Cold

How the specialist dr behaved followed by the examine and tests he perfomed: [/B

At the first appointment I began to tell the specialist dr all of my symptoms in detail, listed above, and how much suffering it had inflicted in my life and that I isolate myself from people because of it.
Hes response was that he virtually knew the diagnosis just from hearing my symptoms and that the treatment for it had a high success rate of suppressing symptoms to a non existing point.
Following that statement the specialist dr performed a physical examen, listed below, that focused on three things after which he said tested normal.
Lastly he told me that I needed to take some labtests, listed below, and gave me a paper slip to give the nurse at the labtests which I went and performed.

At the second appointment the specialist dr was angry over something because he was already standing in the hallway, outside his office, waiting for me with the labtest result in his hand and when I got there he quickly began telling me that I had tested negative on all tests. He followed that up by saying there was nothing wrong with me and that stress was causing all my symptoms and that was basically it because when I started asking questions he responded by saying he had an important meeting and left.

Physical examen, listed below, which he said were normal after the examen
1.Prostate cancer
2.Sphincter muscle for damage och muscle pinch strength
3.x-ray or ultrasound

Labtests, listed below, for IBD, UC, Crohn's, Clostridium difficile, food allergy, yeast infections all of which came out negative
1.IgA - anti tTG negative
2.S-IgA shown in serum
3.Food allergy negative
4.Clostridium difficile negative
5.salmonella, shigella, campylobacter and yersinia negative
6.ASCA IgA och IgG negative

My own thoughts and questions

I spent years trying to find out which disease I had that was eating my life away by searching the internet for other diseases that shared as many symptoms as possible. It was hard and I ended up believing I had a couple of diseases.That was until this year when I finally stumbled upon proctitis which I immediately saw had 100% of the symptoms.
I understood that the specialist dr had come to the same conclusion after having read about the symptoms and about which tests are used for the diagnosis. What I don't understand is why the specialist dr changed his mind after seeing the labtest results.

1.Do you think my symptoms are those of proctitis?
2.If not what do you think I have?

Last edited by PSuferer; 11-26-2017 at 04:29 AM. Reason: There was a problem dysplaing underline
11-26-2017, 12:08 PM   #2
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Bufford's Avatar
Join Date: Dec 2015
Location: Northwestern Ontario

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I would look for another specialist and get a second opinion. I have no tolerance for doctors or for that matter any professional to get angry at me, rather than focus upon the medical issues. Anger is very unprofessional at best
11-26-2017, 12:50 PM   #3
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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I agree with Bufford
11-26-2017, 01:54 PM   #4
my little penguin
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Join Date: Apr 2012

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Two things
Ds has had lots of symptoms listed on website for various diseases over the year
But only with a good GI did they figure out what Ds actually has
Prior to Ds scope we were told by the GI Ds had Allergic colitis
Multiple other docs assumed Ds had Eosinophilic Eosphaghitis

The scope however revealed Crohns

So very important to find a doctor who listens
And to be open to what may be
Not fixating on one diagnosis

Good luck with a second opinion
DS - -Crohn's -Stelara -mtx
11-26-2017, 03:07 PM   #5
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Trysha's Avatar
Join Date: Aug 2009

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Agree with the above answers
Find another specialist
It is important to have a colonoscopy for adequate diagnosis and other exams may follow.
Hope you have better treatment next time round

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