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cstreit 01-14-2023 07:46 PM

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.

unclebilly 01-14-2023 07:52 PM

Dexilant… expensive but it works.

cstreit 01-14-2023 07:54 PM

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

KFC911 01-14-2023 07:55 PM

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!

Bill Douglas 01-14-2023 07:57 PM

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!

MMARSH 01-14-2023 08:04 PM

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

Noah930 01-14-2023 08:08 PM

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?

unclebilly 01-14-2023 08:10 PM

Quote:

Originally Posted by cstreit (Post 11897014)
What is it? Does this sound like you? I'm getting desperate.

Yes. Also have diverticulitis and major issues with GERD.

cstreit 01-14-2023 08:27 PM

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.

pwd72s 01-14-2023 08:40 PM

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.

flatbutt 01-14-2023 09:01 PM

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

Bill Douglas 01-14-2023 09:12 PM

Quote:

Originally Posted by pwd72s (Post 11897030)
Get your ass to the emergency room.

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.

Cooper911SC 01-14-2023 11:29 PM

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. 😞

porsche tech 01-15-2023 02:56 AM

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.

recycled sixtie 01-15-2023 03:19 AM

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!

cstreit 01-15-2023 05:23 AM

Quote:

Originally Posted by porsche tech (Post 11897092)
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.

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.

nota 01-15-2023 05:25 AM

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

gsxrken 01-15-2023 05:56 AM

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.

cstreit 01-15-2023 05:58 AM

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.

Chocaholic 01-15-2023 06:11 AM

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.


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