Do I have Crohn's?

Posted by apilizota @apilizota, Apr 30, 2023

For 6 years now I have had digestive issues that come and go. I’ve had a total of 4 endoscopies and colonoscopies. Each time the doctors say I have gastritis and they put me on a PPI. My symptoms have been: abdominal pain and burning, belching, and bloating that last for weeks/months. But now with my last colonoscopy the doctor saw two tiny ulcers in the end of my small intestine. The first thing I asked her was, ‘Is it Crohns?’ And she said no but I’m not convinced. She has diagnosed me with IBS every time. It’s been years of me having chronic gastritis and pain that last for weeks or months and then I’m fine for several months. Doesn’t IBS only last for days? But now that she’s seen two ulcers I’m pretty convinced I have Crohns. Now that I’ve pushed the issue with her she’s going to do the camera pill test. She now says a small part of her thinks I might have it. Also, as I reflect back, I’ve had mouth sores and anal fissures a few times and that could be correlated with Crohns. But I never told her abt that since she never ever mentioned Crohns as a possibility. I’m really frustrated and upset that I’ve been dealing with this for so long. What are other tests to determine whether a person has Crohns?

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@rozy288

Chronic Gastritis, 1000’s Deep wet belching , GERD, Esophagitis, Small hiatal hernia, small benign polyps on stomach lining , Diverticulosis, IBS- D, Gastro Cardiac syndrome.
Some insomnia, can’t eat anything w/o suffering so bad . I’ve tried all PPI ‘s , Everything Amazon and Metagenics etc for GI issues ( supplements), I’ve tried some anti depressants for a couple months here and there . Holistic Chiropractor, Abdominal Myan massage , Hypnotherapy. I’ve had 3 endoscopy’s , 6 hr gastric emptying study , many abdominal ultrasounds, upset and lower GI , colonoscopies, SIBO tests , H-pylori tests , food allergies testing 2x, so many tests in 10 yrs . Last night up 3am-6 am suffering so bad w/ gut and heart . It’s every single day and night w/o one day off in 10 years.
I’m just as bad on empty stomach. It’s a vicious cycle .
Even w/ Ambien o can’t sleep . I take Heart ♥️ Calm triple magnesium ( google it ) when my heart palpitations get bad . I take .50 mg Klonopin if I get too anxious. I’m so fatigued and life is hard . I’ve exhausted all my opinions. It started at 51 for me .
;(

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I’m so sorry to hear this! We have a lot of the same symptoms and we’ve done the same tests……except I didn’t do the emptying one. Have you ever had ulcers? How do you handle each day? It’s just so unfair.

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@apilizota

I’m so sorry to hear this! We have a lot of the same symptoms and we’ve done the same tests……except I didn’t do the emptying one. Have you ever had ulcers? How do you handle each day? It’s just so unfair.

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I’ve taken all the diff medications for ulcers but they didn’t say I had a peptic ulcer. I just figured why not try it anyway. Unfortunately it doesn’t help me w/ my issues .
I try yo keep my mind and myself busy but honestly it’s getting worse each year , week , day .
Im hanging on by a thread most days and nights .
Some days I’m totally incapacitated like today but I had to pack for hours and go shop at Walmart for our first vacation in 4.5 years w/ our pups 🐶 tomorrow for a week . I was sick 🤢 the whole entire time and still am . My heart ♥️ palps are kicking in with the wretched gut and 1000’s deep wet belches . My stomach is so hungry but I’m scared to eat as it makes my gut churn and more and more non stop sewer water tasting Belches come up .
My small intestines and everything is so loud .
I don’t have any other choice but to live in this hell .
I have 2 adult children that just recently got married and live 2 hrs away . My hubby is very considerate about this but I’m sure he’s weary living w/ me like this . I have two sweet pups 🐶 that depend on me .
What have you taken to help you w/ your symptoms?
Being so chronic is worse than having a disease they can treat .
No one had a clue how to help me . God Bless you .

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@rozy288

I’ve taken all the diff medications for ulcers but they didn’t say I had a peptic ulcer. I just figured why not try it anyway. Unfortunately it doesn’t help me w/ my issues .
I try yo keep my mind and myself busy but honestly it’s getting worse each year , week , day .
Im hanging on by a thread most days and nights .
Some days I’m totally incapacitated like today but I had to pack for hours and go shop at Walmart for our first vacation in 4.5 years w/ our pups 🐶 tomorrow for a week . I was sick 🤢 the whole entire time and still am . My heart ♥️ palps are kicking in with the wretched gut and 1000’s deep wet belches . My stomach is so hungry but I’m scared to eat as it makes my gut churn and more and more non stop sewer water tasting Belches come up .
My small intestines and everything is so loud .
I don’t have any other choice but to live in this hell .
I have 2 adult children that just recently got married and live 2 hrs away . My hubby is very considerate about this but I’m sure he’s weary living w/ me like this . I have two sweet pups 🐶 that depend on me .
What have you taken to help you w/ your symptoms?
Being so chronic is worse than having a disease they can treat .
No one had a clue how to help me . God Bless you .

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I completely agree!!! Being chronic is an absolute nightmare!! They never tested you for Crohns? The medications I’ve taken are pantoprazole and dexilant for the acid reflux, carafate from time to time to soothe my stomach, xiafaxin a couple of times for possible SIBO and zantac. The only thing I’m taking now is the pantoprazole.

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@rozy288

Sorry for typos

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Apilizotta my hubby's symptom was diarrhea. They had done a colonoscooy and endoscopy they did a blood test which indicated Crohns and did the capsule endoscopy which confirmed Crohns. The capsule endoscopy does all of the intestines where a regular colonoscopy could only do some.

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@astaingegerdm

@apilizota
Curious- did the doctor biopsy the ulcers?
Any blood tests done?
By the way- IBS can last forever- waxing and waning. I have that plus I’ve had autoimmune colitis.

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How was your autoimmune colitis diagnosed? I'm curious as I had biopsies done from each part of the colon to look for microscopic colitis. The biopsies were negative but I"m wondering how accurate that is and if maybe I still have some type of colitis. The doctor said the colon looked normal and the biopsies were done to find the cause of the diarrhea.

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@apilizota

I completely agree!!! Being chronic is an absolute nightmare!! They never tested you for Crohns? The medications I’ve taken are pantoprazole and dexilant for the acid reflux, carafate from time to time to soothe my stomach, xiafaxin a couple of times for possible SIBO and zantac. The only thing I’m taking now is the pantoprazole.

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@maryd

How was your autoimmune colitis diagnosed? I'm curious as I had biopsies done from each part of the colon to look for microscopic colitis. The biopsies were negative but I"m wondering how accurate that is and if maybe I still have some type of colitis. The doctor said the colon looked normal and the biopsies were done to find the cause of the diarrhea.

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@maryd
For the autoimmune diagnosis I had a colon biopsy. It showed collagenous colitis one of the autoimmune microscopic colitis.
Later on with different symptoms I had small and large intestinal biopsies that showed a different, nonspecific autoimmune illness.

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I was diagnosed with Ulcerative Colitis (UC) in 1980 after many weeks of diarrhea and then bloody diarrhea. It was confined to the last part of my colon. 20 years later I start having problems with my small interstine and after much testing, it was decided that I had Crohn's. Because of undiagnosed Polymialgia Rheumatica, I asked for Low Dose Naltrexone. Low and behold, it healed my small intestine- which had been full of small, blister like ulcers for years. Over 80% of Crohn's patients get benifit from LDN. I certainly did. My last colonoscopy was normal. I reccoment anyone suffering from Crohn's try it. It might help.

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@suetex

I was diagnosed with Ulcerative Colitis (UC) in 1980 after many weeks of diarrhea and then bloody diarrhea. It was confined to the last part of my colon. 20 years later I start having problems with my small interstine and after much testing, it was decided that I had Crohn's. Because of undiagnosed Polymialgia Rheumatica, I asked for Low Dose Naltrexone. Low and behold, it healed my small intestine- which had been full of small, blister like ulcers for years. Over 80% of Crohn's patients get benifit from LDN. I certainly did. My last colonoscopy was normal. I reccoment anyone suffering from Crohn's try it. It might help.

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Low Dose Naltrexone: What exactly is it? How long till it controlled your illness?

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It probably took about two months to heal my small intestine. However, it took two days to stop my non moving pain. But I still had my moving pain caused (I think) by the PMR. Look it up. There is lots about now on the web. But now I can tolerate a much higher fiber diet. I can eat corn on the cob again and celery sticks- but not at the same meal. My gut complains about that.

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