GI issue - can't figure this out
 

okay folks - looking for ideas here as I'm at my wits end.

I have diverticultis. Generally managed.

However 6-12 months ago I started having these "episodes" that were very much like what people with Gluten intolerance or celiac's experience. Burning through the lower GI tract, feels very inflamed. Nothing but a liquid diet and NSAID's for a few days will calm it down. Some so bad I am left laying on the floor with anxiety, pain, shakes, etc...

GI doc has done a full battery of tests for celiac, colitis, IBS, parasites, CDIFF, etc.. and still no positive diagnosis. Now I've been tested for every common alllergy, gluten, dairy, you name it. Nothing.

Thinking it was some sort of chemical preservative I went on a 100% natural diet for a few weeks, but twice I've had these flare ups. It used to be once every few months, now its once every week or two. Massive burning, cramps, gas, you name it, things just aren't happy down there. Blood tests show inflammation and some sort of allergic response, but no one can tell me what.

Seeing an allergist next week.

Ideas? I have stress around eating (although not losing any weight), am in pain 50% of the time. This is no way to live. I need to keep exploring but this is my life now, not the things I want to do. Bad days equaling good now.

Dexilant… expensive but it works.

What is it? Does this sound like you? I'm getting desperate.

Good luck in getting this figured out! Stress causes all kinds of issues just by itself ... can't be helping, but you know that. Best to you!

Umm. Worth a try Chris.

I've got diverticultis (a hard word to spell) and a nurse/friend said blitz it with natural yogurt. The stuff with all the things and no sugar.

She said have one container in the fridge at home and one at work. And take a swig out of the bottle every time you walk past the fridge. I think that was German for take a small quantity every half an hour.

About a month later all the unplesant symptoms dissapeared.

Good luck!

Damn Chris, Very sorry to here your going thru this. Hope you can get this worked out.

Sorry for your troubles, Chris.

Out of curiosity, during your work-up, did you ever swallow the camera pill?

How you know it's not just diverticulitis? Is it different than previous bouts of diverticulitis? Have you had any bowel surgery yet?

Yes. Also have diverticulitis and major issues with GERD.

I take multiple probiotics daily and plenty of GI healthy foods ( kimchi, etc)
No camera pills but recent colonoscopy shows perfectlY clean (save the one diverticula)

No surgery. GI dox says unrelated but can’t help but wonder if that isn’t the source.

High Immunoglobulin level says I’m allergic to,something though, hence the allergist.

Back in '85 I underwent two sugeries because of diverticulitus...a section of colon removed. Must have been a good surgeon removing my "problem area", because no problems once I healed, changed diet, got on a regular schedule.

Hope you're monitoring your blood count. My first clue was thinking it was appendix, drove myself to the emergency room. Didn't know what was the problem until much later. One had burst, evidently they almost lost me in the operating room. I was in there over 4 hours. Cindy said she got worried when they asked her if she wanted to wait in their chapel...

Bottom line...if you have crampy bowel movements and see blood in the bowl? Get your ass to the emergency room.

A clean colonoscopy is the best news. If it revealed one diverticulum maybe it's severe enough to give you those symptoms?

Umm. That's what I've had. The doc was concerned about burgundy blood with poo. So I'm scheduled to have a camera from both ends look at the show in there. Come to think of it that was a while ago and I haven't heard from them.

Maybe at least I should follow my own advice and do the yogurt thing.

Edit: diverticulum can mean it's gone rotten and cancerous.

Chron’s Disease?

I have a friend with this and it creates all kinds of hell.

Symptoms present as IBS or any number of things… he went through years of testing etc. has had sections of intestines removed.

Yuck. 😞

My wife struggled with diverticulitis. Dr had her on Cipro (Ciprofloxacin) apparently a common drug administered for diverticulitis. Be very wary of this drug if anyone wants to put you on it. My wife had a very severe reaction to it, thinking the diverticulitis was getting worse. Read about this drug on the internet before taking it. My 2 cents.

To the OP. Sorry to hear of your issues. You sound like you are in a lot of distress. Have you changed your meds lately? I have had severe cramping on and off for almost a year. I went on new drugs for atrial fibrillation last April and got bad cramping when I ate and had the pills. Taking the pills two hours after eating helped.

Thanks to the above for suggesting natural yoghurt. Hope you are feeling better soon!

Thanks. Yeah I avoid all of the florquinalones, also common is Levaquin and metronidazol which both mess me up.

I'm managing without antibiotics. Not on any medications.

They've done a number of "cultures" to check for the usual things. IBS, Cryptospor, giardia, and even Calprotectin that tests for inflammation. All negative. Had ultrasounds looking for abnormalities with spleen, gall bladder, kidneys, pancrease - all normal. Allergy tests for all the common ones. Nothing. No blood.

We know two things only:

1. My IgE levels were double the high limit, suggesting some allergy
2. I have a diverticula.

my wife has crone's and reflux problems

last doc of many
had her stop eating beef or pork or cut way back on both
and not eat before bedtime so late lunch not dinner

both helped her with less attacks and less severe ones but did not totally stop the problems

Chris, that sucks. Your history sounds like my sister’s; after many negative tests but high IG they started her on Humira and she’s doing remarkably better. I still don’t like the idea that they haven’t put their finger on the root cause and this heavy-duty infusion is just smothering her immune response, but she would disagree. She was living with a disability prior to this med. I hope you get straightened out soon.

I think I need to get this diverticula sorted to rule it out. Its nagging at the back of my mind that its one of the few things we know are an issue.

Wife swears by Dexilant as mentioned above. She had a blockage some years ago that almost killed her and has diverticulitis. She only uses Dexilent when symptoms flare up and it works…period.

This is exactly what I’ve done to remedy my diverticulitis flare ups along with copious amounts of fiber.

I do not like hearing these kinds of things about the people I care about. I have no suggestions for you Chris, but just encouragement. Keep working toward a solution.

Appreciate the thoughts and ideas.

The hard part is building advocacy with the doctors. THey all take appointments, run tests, do referrals but no one really wants to step up and help work through all of it.

My guess is its the diverticula or some food sensitivity that aggravates it. Probably gonna go under the knife to eliminate that as an option.

The characteristic we value the most in a doctor is curiosity.

That said, I think it may have been Hippocrates who said medicine is the art of entertaining the patient while nature cures the disease. Today we know more than Hippocrates did but we don't know everything.

THey don't call it "practicing medicine" for nothing.

Hmmm.."multiple probiotics"? Maybe overdoing them, producing all the gas? Not without reason came about the phrase "old farts". I've become a gassy jack since the surgery, take 2 probiotics a day.

If you do the surgery, I hope it's improved since mine in '85. I have a scar running from clavicle to my public arch...another "T-ing" off to the side where I wore a coloscopy bag for a few weeks. Nothing like having to wear a bag to make you appreciate your a-hole. Recovery was long and painful. I'd advise avoiding the knife if you can...

Same probiotic - twice a day with breakfast and dinner.

I stopped them for a few weeks - no change.

Damn...sorry to hear that. I'm on the same schedule...2 probiotics. "natures bounty acidophilus".
Evidently there are variations? Forget the brand, but tried one earlier that worked too well, gave me the trots. So, settled on this one.

I should have mentioned, my wife did wind up having a section of her colon removed to solve her problem. The doc did say a temporary colostomy might be needed as sometimes the two ends are like tissue paper and can’t be sewn back together until they have time to heal up. Fortunately for my wife, she did not need that and has not had another symptom since (2 or 3 years now). It was, however, an ordeal…especially with the curve ball the Cipro hurled at us. Hang in there and good luck.

Thanks. Calling the surgeon tomorrow actually.

Non-emergent colon resections are routinely accomplished laparoscopically today. However, not every non-emergent situation is the same. Also, I'd want to be really sure that diverticulitis is the entire issue.

Have you looked at elimination or inflammatory diets? That is where I would start.

I got food poisoning in college, bad. Campylobacter jejuni they said, now they call it Helicobacter apparently. Never been the same since, occasionally kicks up. No meds, bland diet for a while and it goes back to sleep.

Speaking of sleep, do you do so adequately? That matters, sometimes kind of a lot.

It probably isn't - I do think its part of the equation. Since my IgE levels were double the acceptable peak range - it shows that I am probably allergic to something. I got a blood allergy test and was negative for Clam, Corn, Egg White, Fish, Milk, Peanut, Scallop, Sesame Seed, Shrimp, Soybean, Walnut, and Wheat

Normal range on IGE is 2-214. Mine was 460

So its possible that there is some allergy and it interacts/inflames the diverticula.

THe last few weeks I went very basic. Only foods that were 100% natural and organic. ZERO preservatives or chemicals. No inflammatory foods like veg oils, etc..

I don't sleep enough. Between my shoulder pain and gut pain - my guess is about 6 hours per night. As soon as my GI system "wakes" on on many days, the burning starts and I can't go back to sleep.

What's wrong with the shoulder?

Feels like rotator cuff issues, but i know i have low level arthritis so could be that. Family curse.

Quite possible the 2 are related. Do you know values for for your sedimentation rate and C-reactive protein? Any rashes?

Wife had gut pain and #2 issues for a while. Diagnosed as crohns with severe intestinal blockage. Its been 3 years since surgery removing the problem sections. She has not had symptoms since the surgery while holding to a vegan, no SOS (salt, oil, sugar) diet. She also makes green smoothies every day which benefits me also. There are doctors (e.g., Dr. Brooke Goldner) with diet protocols that have eliminated inflammation symptoms.

Good luck.

FYI My pain is lower GI, like 2" below the navel. Right aroudn where it hurts when the diverticulitis flares up.

Diverticulitis, diverticulosis, diverticulum: not all the same thing. Sounds like you have a diverticulum (the little outpouching structure), seen on colonoscopy. So you have diverticulosis (the condition). But not clear to me: have you had diverticulitis (inflammation/infection of the colon)? If so, how mamy times? As you know, the elective treatment for recurrent diverticulitis is a sigmoid colectomy. Even if everything goes well (no complications), you're never the same.

If you've been scoped from up top (EGD: esophagogastroduodenoscopy) and from below (colonoscopy), maybe it's worthwhile to do the camera pill. It'll get a look at all that small intestine in between the two ends. Unless you're convinced it's diverticulitis causing your symptoms, I'd try that before signing up for surgery.