New, Confused, Humiliated and No Answers

[HumiliatedMom]

Hello. My first post and not sure where I belong. Since 2015 I have had horrible diarrhea flairs and abdominal pain and bloating. I also would get mysterious random skin ulcers. In 2017 it reached a peak. The GI doctor at the time did blood work and a Colonoscopy. Colonoscopy was fine but I had positive ANCA markers Iga and Igg and he said for me to try Pentasa and see if it helps as he thought I had Mild Crohn’s. In 2020 I started getting a ground burning sore throat, sore mouth and tongue. I have been to 7 ENT’s because none can figure it out. I have fibrosis of my mouth now. The last ENT wanted me to go to a GI to biopsy my throat. My GI I saw is no longer with the practice and I had to see the new guy. He told me he can’t biopsy my throat and decided to focus on my GI problems and said he doesn’t believe it is Crohn’s since my Colonoscopy in 2017 was normal (5 years ago). He did an endoscopy and I had three spots in my esophagus and stomach that were ulcerated and he had to do biopsies but I guess were nothing. He did a ton of labs. The only abnormal one was the Prometheus Test which came back with genetic markers for Crohn’s, inflammation, and the high antibodies Iga and Igg. Prometheus diagnosed Crohn’s…. Checked off in black and white. My doctor still doesn’t believe it and now sends me for a Enterography. He says it’s normal so I do. It have Crohn’s. Eat more fiber because I am fine. I am NOT fine. I live every day with my mouth on fire and in pain with it turning white and limiting my mouth opening. As if the pain from that isn’t bad enough I feel like I have the flu everyday and just unwell. Worse is if I eat I end up running to the bathroom 4-5 times or more. I have like seconds warning when it flairs up and I basically can’t leave the house because it seems every time I do I get caught with a flare and am racing to get home or find a public restroom. More and more frequently I am not making it and I am 42 and humiliated. I am afraid to go anywhere. But he won’t give me the Pentasa the old GI was giving me because to him I am fine and just need fiber. Which I have tried in the past. I am so frustrated because something is wrong. I flared last night chaperoning my teenager on a date- barely made it home. Then spent the next few hours into the morning running to the bathroom and this morning I can feel my insides feel inflamed and I have a graduation party to go to today. This isn’t normal but it is my life and it is humiliating, painful, and Starting to feel pointless with the feeing unwell like the flu everyday for years.

 

[HumiliatedMom]

Forgot to mention I was seeing the neurologist for numbness in my face and he said my b6 level was the lowest he’s ever seen at 2. He said I should speak to my GI doc since my body doesn’t seem to be absorbing B vitamins. My GI doctor ignored my inquiry about it and Google (all I’ve got) says it too can be a sign of Crohn’s.

 

[Hera]

Hello. If your last colonoscopy was 5 years ago, I think you need another one. Pentasa usually is not enough for crohn's. You need a confirmatiom of the illness to start an apropopiatte treatment.

 

[Lady Organic]

You could start with a fecal calprotectine. its a simple stool test intended to see if there is inflammation or not in your colon. An elevated number along with symptoms as you describe can help orient toward a possible IBD and call for colonoscopy.
Prescribing Pentasa without imaging (scope or biopsy) evidence of an IBD as this was your case is not common GI practice.
A lot of people have functional issues with GI track, commonly known as IBS (lower GI track) or dyspeptia, reflux (upper Gi track). This condition is way more prevalent in the population than IBD. It seems the current GI is pointing towards this syndrome at this time.

 

[my little penguin]

So the panel that was positive for crohns
Most gi won’t use them
Because some are positive abd some are negative on the panel but it doesn’t predict disease
The horrid sore throat and skin lessons sounds like my kiddo before diagnosis

neutrophilic dermatosis disorders
He has Sweets syndrome (acute neutrophilic febrile dermatosis )
Some have bechets disease with neutrophilic
disease
Some are just diagnosed with idiopathic auto inflammatory disease

some are treated in combination by a rheumatologist and or a dermatologist

he takes completely different drugs for his sweets syndrome than the ones for his crohns

ulcers
Fatigue
Skin lesions
Eye pain
Flu like symptoms
Headaches
Joint pain
And gi issues

are his telling signs

 

[my little penguin]

https://helpforsweetssyndromeuk.wordpress.com/key-information/sweets-syndrome-general-information/

 

[my little penguin]

https://www.nomidalliance.org/learn_intro.php