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Discussion Starter · #1 ·
Hello all,

I'm brand new to this forum, so thanks for having me! I don't typically post on forums, but lately, I've been feeling as if I have no where to turn. If any of you have underwent a similar experience, please write about it or advise me what I might be able to do.

I don't want to waste your time, so let me begin. Here's my story! One day, as a 16 year old in high school, during a stressful math test, I felt a pain in my abdomen. I ignored it for a bit, but just seconds later, an extremely loud sound that I can only describe as 'gurgling' rolled-on through my GI tract. This noise was not your average borborygmus (intestinal noises), because it was not only so loud that the entire class looked over at me, but it was also incredibly painful. It was so embarrassing that I got up and left class...

Fast forward to 2016, I'm 22 years old, I've just completed college, I've had three internships, I'm an EMT, a firefighter, and I've been able to hold my life together, so things on the outside appear great for me. Trouble is, I've still dealt with this phenomena every single day since that fateful day in high school, and unfortunately, it's molded me into a very depressed, very cynical person. I don't tell my friends much about my condition, and it's extremely difficult to try and fit in with everyone when I go through this everyday. (I'm sure many of you on here know the feeling!!!).

I've had six gastro-enterologists, a Psychiatrist, two family MD's, a handful of ER docs, an allergist, and an Endocrinologist see me. None can explain what's occurring inside my body other than "IBS." When I tell them what happens, they look at me and scratch their heads...

My primary symptom is not just alternating constipation/diharrea; honestly, I'd be OK with that. Instead, my condition is characterized by a need to eat every few hours to avoid pain. Strange, right? So here's how it goes... If I go a period of three to four, sometimes five hours without eating, I develop nausea, somewhat severe GI pain (like someone is forcefully pushing their fist down onto the area directly below and between your ribs), and it's followed by this same loud intestinal noise, and it's god awful painful. Once the noise passes through (probably gas moving?), I feel a bit of relief for about 30 seconds, before the same pain comes on, followed by continued episodes of this noise + pain, basically until I eat something. Essentially, the ONLY way to prevent this pain and the noises is to eat every 3+ hours. I know it's puzzling, but I've had this since age 16, and not a day without.

Even if I eat every three hours, I still get random pains in my abdomen. One minute, it can be a sharp shooting pain that lasts one second but debilitates me, and others, it can be cramping for a whole hour, but either way, each and every day, I experience a tremendous amount of pain. I sometimes have mucus or bright-red blood in the stool, as well. I don't know if this is a chicken or the egg issue, but I've become very anxious; I can wake up with serious anxiety and I get anxious in social situations, but I don't know which issue came first. My mood is always back-and-forth, up-and-down like a roller coaster, I'm either happy, hopeful, and optimistic, or I'm down in the dumps and want to end it all. I have serious difficulty concentrating on tasks, and I'm often at a loss of energy. I'm rather quick to become ill, too. But truthfully, I just can't say if anxiety/ADHD caused the problems or vice-versa. I'm also ALWAYS extremely gassy; I wake up with a ton, and have to expel it the whole day; it never goes away, truthfully.

Tests: I've been given an abdominal X-ray at age 16, had celiac/lactose intolerance, and food/enviro allergy testing. I've had the camera pill, the barium test, sitz-marker tests, numerous comprehensive bloot-tests, synthetic cortisol tests for adrenal insufficiency, three upper endoscopies and three lower endoscopies, usually once every year or two, and the hydrogen/methane test for SIBO. SIBO is the ONLY thing I've tested positive on. Every other test shows "OK," though some docs have hypothesized that I have aerophagia (swallowing of air), but I'm almost certain I don't swallow air. The Psychiatrist diagnosed me with anxiety and ADHD at 17, and then threw me on Seroquel, but it put me to sleep and I gained 20+ pounds. Sure enough, I looked it up afterwards, and it was an anti-psychotic (thanks, doc
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).

Fam history: my cousin on my father's side has IBD (Crohn's), which they say I'm negative for, my father had a section of his colon removed after developing a hernia and eventually, gang green. He has since passed away from an MI, otherwise I'd call him and ask him if he has symptoms similar to mine. My other cousin on the same side also had IBS but underwent Cognitive therapy and is now OK, and my grandfather (also dad's side) had Bowel cancer and also passed from an MI not long ago. My grandmother and great-grandmother (mother's side), had hypothyroid, and that's what prompted me to see an Endo.

As for prescriptions, Xifaxan (for SIBO), which wiped out my gut and left me deathly ill for a month, VSL#3 to treat IBS (saw no relief after 1+ month). I've been prescribed anti-spasmodics which cause constipation, but don't fix the noises, pain, or gas issue. As a teenager, I had acid reflux on-and-off, but it went away on its own with or without antacids. The last GI doc put me on Amitriptyline at 75 mg, (a tricyclic anti-depressant) that he said also treats IBS, as well as chloradiazepoxide/clinidium (librium & an anti-spasmodic) for sudden onset pain. I have trouble taking either, because the latter causes constipation, and Ami makes me sleep for minimum 12 hours. I was also prescribed some liver-enzyme back in the day that was supposed help increase something, but I don't recall much about it, and it never did much for me.

Then there's things I've done on my own! I've tried gluten-free diets, but I noticed that GF pasta actually worsens my gas and increases the frequency of that intestinal issue I was describing). I've tried FODMAP for a while, but I didn't notice a change for a week and it's truthfully very difficult to stay on (but I've heard one must be on it for months to see a difference). I now taking organic multi-vitamins, I drink aloe from Trader Joe's (super tasty, let me tell ya, but it also doesn't fix anything), and I take peppermint oil, a 23-strain probiotic, and multi-enzymes before or after meals. None of this has fixed anything. I took it upon myself to do a parasite cleanse with PARAgone, but it gives me serious diharrea, and hurts like hell! I'm nearing the end of the cycle, but my problem is as alive as ever. I do notice however, that drinking coffee helps me have a BM sooner (caffeine), which can somewhat limit the cramping throughout the day, and I've noticed guzzling water all day helps keep me regular. I (recreationally) took a friend's adderall to assist me for my senior thesis paper, and I felt immediate relief. I know it was bad to do, but my GI pain disappeared for 6+ hours, I focused on my work, was in a better mood, and felt like myself again. Sure enough, after it wore off, the pain and same noises/issues were back. I can't go into the doc's office and ask for an amphetamine to fix my GI and mood problems, though
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I've found moderate relief with exercise, only because it keeps me regular (but the pain/noise issue persist, and gas isn't reduced). I've found myself sitting in class, expecting the issue to occur, and because I get so frustrated about it, I have a near panic attack and need to leave class... It's days like that where I force myself to take the pills the doc gave me, but they too, dont' fix it... I've been told my GI docs to 'just live with it,' but I find myself hopeless, and sometimes I've succumbed to crying and wishing it were 'over', even as a 22 yom, because I can't fix these issues...

I find it difficult to keep a food/BM diary, because the symptoms vary so much each day, but I guess I should, so today I'm going to start. Please, if you have found yourself in a similar situation, please write about it. Please document ways you've found to cope, things you can do to have a better life with your significant other while dealing with IBS, and certain diets, meds, or supplements you have found help you. My condition has altered my lifestyle so negatively, and I'd like to hear about how you guys deal with it... I try to act normal and fit in, but I find it hard to be in a relationship (going to the bathroom frequently, expelling explosively-loud gas (lol), etc.) I forced myself to forego joining the armed forces, forego joining police academy, and forego other things in life all because of this issue... I'd love to hear what anyone has to say!

Cheers,

CT
 

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Discussion Starter · #10 ·
@MeAnonymous

Thank you. I've been drinking peppermint tea everyday that arrived from Amazon four or five days ago. I've noticed a slight reduction in pain which is good, but other symptoms are still present. Managed to get some CBD (no thc, from hemp not MJ), and I've been using it the past couple of days. Haven't noticed too, too much of a change.

I'm actually going to try vegetarian for awhile. I watched "Cowspiracy" on Netflix this week and I was kind of shocked actually. Then I did some searches on vegan and vegetarian diets for those with IBS & they seemed to actually help subside alot of symptoms)

Will report back when I successfully make it through one day of Vegan XD
 

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Discussion Starter · #14 ·
@dlind70,

Thank you for posting actually... as this is sort of hitting home at the moment.

I am taking the Law School Admission Test (LSAT) in June, and I've requested an accommodation for a private testing room (which they offer), as well as 50% more time (difficult to focus with the pain/noises, especially when sitting with 30 other otherwise 'normal' test-takers)..

I've consulted my Primary Doc about "signing off" on the accommodation form (which asks for a brief description of the issue and a signature), but she told re-directed me to my GI doc, citing that it wasn't within her expertise to sign-off.

Fast forward a month, and I see the GI doc. He tells me he's "not signing the forms because he's busy and doesn't want to deal with it... I'm not kidding, it's almost verbatim... So now I feel out of options, and I need this form signed. The same GI doc told me he's done "everything he can" and doesn't have anything else to try.

And this part is where I NEED ADVICE: He said "it's clear you have anxiety" and "go to a Psychiatrist," but then he followed up with "or see this IBS expert in NYC, Dr. Christina Frissora -- maybe she can help" ... so I said "well which do you recommend?" and he replied "I don't know, consult your primary."

Is it me or do all these people pass-the-buck haha

My question to you all is... Do I try the IBS doc or do I go to a Psychiatrist? (Mind you, this would be my SIXTH GI doc), and while I do openly admit to feeling anxiety, I'm unsure if its because of the IBS (chicken or the egg question)... any help or advice is WELCOMED!

- Chris
 
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