Irritable Bowel Syndrome and Digestive Health Support Forum banner
1 - 20 of 20 Posts

·
Registered
Joined
·
8 Posts
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
huh.png
).

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
sad.png


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
 

·
Registered
Joined
·
568 Posts
CT...

My friend, very similar to me. Pretty much everything actually.

Ok.. IMO what is happening is you are VERY prone to spastic colon, and the associated pain and symptoms. With people like us the colon and intestines spasm and contract irregularly/incorrectly. This is part of your pain. When this happens it causes gas bubbles/pockets that you do not pass properly. If you can imagine fluid, solid, and gas going through a contracting tube.. then imagine the contractions all wrong, mistimed, backwards, etc. and how this would effect things.

I also have pain if I do not eat every 3-4 hours tops, and also sometimes vomiting from the pain/contractions.

I much prefer peppermint tea over the pills, it helps more. Recently I am playing with some other things that seem to be really helping as well, actually more than anything else I have tried to date. I too am on antispasmodics and yes they constipate me as well.
 

·
Registered
Joined
·
8 Posts
Discussion Starter · #3 ·
Leo41,

Thank you! I'm going to try peppermint tea -- sounds like a great idea. Do you drink it with meals, or by itself?

- Chris
 

·
Registered
Joined
·
8 Posts
Discussion Starter · #4 ·
Just picked some up --- Amazon has 50 sachet Organic teas from Harney & Sons. Going to give it a shot. Thank you, @Leo41
 

·
Registered
Joined
·
568 Posts
CT.. I should have mentioned... the best I have found is Heather's for IBS. Just google it, the stuff is the best period, and by far worth it. As a side note I would get the fennel tea too... this is wonderful for gas.

I use the peppermint tea to shut down spasms. Usually this means after breakfast as soon as I get to work.. big warm mug. I sip on this for a couple hours til lunch. After lunch I make another to take me through the afternoon. Nothing else I have seen will shut down pain and spasms like this, usually within 15 or mins. I also use i to prevent. Now I only use Heathers peppermint tea, no other brand, so not sure how other kinds will do.

I have a very long detailed thread of my experiences with this IBS thing, and what I have used and tried to attempt to manage it. Actually I will be updating it in the next day or so with my current things I am doing/using. I am now working with a turmeric/ginger/honey homemade tea and believe it or not completely legal cannabis oil. It has no THC but is super high in CBD's. Only been on that for like 3 days but all symptoms have stopped so far, everything. To feel normal is wonderful after so long. Not sure if this will hold so I have been waiting on to update with the info until more time has gone by.

If you are interested I will give you the information. Either way would be a great a idea for you to read through my thread. I will try to dig up the link, it is currently buried in the general section. Once I update it will bump. Feel free to PM me if you would like.

Ray
 

·
Registered
Joined
·
8 Posts
Discussion Starter · #7 ·
Ray,

Where'd you pick-up the oil? I read online that CBD was illegal anywhere in the US.

Let me know.

Thanks,

Chris
 

·
Registered
Joined
·
2 Posts
I agree with the peppermint tea. It'll be cheap and easy to try. It really helped me within a week...though I could start feeling a difference sooner. I happened to get mine loose leaf from a nearby Amish store and put like two tablespoons in coffeemaker for 2/3 pot (but at first I'd make stronger). I would imagine you could get loose leaf online or maybe in a health store...or at first you might want to make a cup with 2 tea bags and let it sit for a bit to get stronger. I'd had such a sharp shooting pain and while looking online saw peppermint oil and tea suggested as antispasmodic and I am thinking pain reliever. Since I already had tea that is what I tried. The peppermint oil you can get at cvs (and I think walgreens) in USA "heathers tummy tamers." Problem with that is you have to have empty stomach then wait one hour before eating.
keep trying...eventually you'll find something which works for you.
 

·
Registered
Joined
·
8 Posts
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
 

·
Registered
Joined
·
568 Posts
CT.. Let us know how it goes. I am still doing wonderful on the oil myself. The only thing for me it does not seem to help is the gas. I am using a cup of fennel tea before for that.

If the tea does help some, try heather's on your next order. For me it a whole different effect than a "normal" peppermint tea.

Good luck with the vegan, vegetables and my IBS do not do well together.
 

·
Registered
Joined
·
112 Posts
Chris my symptoms are very similar to yours, with the exception they started about 12 years later in life for me. My GI told me (actually GI number 5 the first 4 were useless) that all of us who switch back and forth between C and D are C predominant despite the fact that the D usually interferes with our lives worse than the C. I was on Amtrip before I went to see here and she immediately took me off it because it is known to make C worse. She switched me to an SSRI (Lexapro) instead. You may want to think about switching over as the lexapro did not make me sleep for 15 hours a day, and I could actually take it in the morning without getting knocked out.

That said the Lexapro didn't help me one bit but it made me feel better to at least be seen by a doc that wasn't completely clueless and actually took the time to listen to me.

Also I find that rifaximin having that strong of an affect on you to be quite odd. The antibiotic attacks the gut bacteria to try to bring it into balance. I'm guessing it knocked out your good bacteria which is what left you so ill for a month. All of your issues could be explained by bacterial imbalance. There are companies online where you can send them a sample and they will test the bacteria for you. Also there is a clinical trial right now in NY/NE that performs FMT for ibs. If you dont want to do the clinical trial and you can brave out a really gross procedure you may want to think about an at home FMT.

Good luck.
 

·
Registered
Joined
·
527 Posts
A swami has said "Small intestine problems are from being strangulated by your own convictions."

ok first thing you can do is never skip breakfast. Eat protein first. Soaked raw almonds are ideal (one for every 10 lbs of your ideal body weight, they are anti stress, prebiotics for the gut and help HCL. Eat the almonds with fruit like cherries or apples (yellow apples help diarrhea for instance).

Skipping breakfast is the worst thing you can do to your body.

Also I will tell you that it is a mental issue. A fixation on something. Maybe you want to be too perfect for someone (yourself?). Start self loving your self with all faults and dealing with mental blocks. Where shirt colors that are orange, yellow, and gold more often to help this issue. I will get dumped on for this opinion but who cares. It really is mind over matter. Change your mind, change your body.

Blog for more info on the food aspect you read. http://oneradionetwork.com/atoms-blog-articles/clocking-the-small-intestine-meridian/
 

·
Registered
Joined
·
8 Posts
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
 

·
Registered
Joined
·
568 Posts
Chris, yeah man. If you read my thread you will see I got the exact same. Most GI's in the US are total garbage for IBS. There are a few good ones, but are so rare, and you have no real way to know until you see them. They all want to pass the buck, take no responsibility.

To get you helped (and fixed) my best advice (what I would do -- since you are in NYC).. look up Dr. Habba. HE would be my absolute choice for a GI, and he is on NYC. I cannot see him as I am 1400 miles away. He is different, and will dig, and test you to find the root cause of your IBS. As for signing a form, he may be your best bet as well.

If you see him, please promise you will report about him, what he does, and says and how you do.

Oh and yes when I went to my GI he told me I was manic. I was freaked, the pain would not stop, I was losing control of everything. He said I needed a shrink. Now as it has subsided I have no anxiety. It was caused by this, and the idiot tells me it's me, and my head, and I need mental help. Utterly worthless.
 

·
Registered
Joined
·
568 Posts
Yes man that is him. The psych will put you on anti-anxiety meds which may or not help somewhat. They will not fix you. Dr. Habba will fix you. He will be the last GI you need. I so wish I could see him. Yes that is right it was upper NJ, not NYC.
 

·
Registered
Joined
·
23 Posts
Hey Ray!

Are you still around? I'm new to thread but discovered we are very similar in both age and our IBS symptoms.
I'd like to hear now you're doing and share my recent sucess and faliars.

Waiting to hear from you .

Greg
 

·
Registered
Joined
·
527 Posts

·
Registered
Joined
·
568 Posts
Hey Ray!

Are you still around? I'm new to thread but discovered we are very similar in both age and our IBS symptoms.
I'd like to hear now you're doing and share my recent sucess and faliars.

Waiting to hear from you .

Greg
Greg...

Sure am, doing so much better than this time last year overall. Still learning this crazy condition through trial, discipline, and observation. Replied to your PM.
 
1 - 20 of 20 Posts
Top