Gastro problems: So not the nicest part of... - Behçet's UK

Behçet's UK

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Gastro problems

Kirstymarie04 profile image
12 Replies

So not the nicest part of Bechets but does anyone suffer with gastro problems at all?

Anyone know any medications to relieve the tummy pain which comes along side them?

I've been suffering badly the last few weeks.

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Kirstymarie04 profile image
Kirstymarie04
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12 Replies
billi profile image
billi

Hi I too suffer with bowel problems and pain. You need to ask your doctor about seeing a gastroenterologist and find out what is wrong. It is not good to keep using over counter drugs. Maybe start a diary writing down everything you drink and eat even medications and take this along with you.

Hope this helps

Billi

belle623 profile image
belle623

Hi Kristy :)

I am sorry to hear of rough week. Are you referring to lower half GI issues or ulcers in tummy? If it is the first part I typically stick with a super simple diet, load of water and add in Power Aid Zero to make sure I am getting electrolytes. Ginger , licorice or chamomile tea can also help. Small amounts of pumpkin can also help.

Hope you feel better!

Ash

Lettie999 profile image
Lettie999

I get gastro problems too, i have had cameras both ends 😣 and scans, no ulcers, chrones or colitis thank goodness. Get yourself checked out by a specialist first but I use Zinc carnisone supplement, in Japan it is actually prescribed to heal the mucus membrane in your gastro system but in the uk you can only get it as a supplement, I use codine for diarrhoea and bowel cramps and gabapentin for stomach pain. I have lanopresol prescribed for indigestion but don't take it. Ginger or peppermint tea helps too.

Hope this helps and you feel well soon.

Nkusabs profile image
Nkusabs

Hi there, I have a few nausea and stomach ulcer problems and have omeprazole (losec) to help. Problem seems to be worse with certain foods eg lamb so a food diary might be helpful. Hope you can find a solution.

Hi

all of the above ........

I recently went to see my dermatologist (very dry ,itchy hands ,swollen ,painful and very inflamed)

He is VERY interested in Bechets......

I already suffer with numerous food intolerance and after talking.... we found more!!!

It seems that SALICYLATES are a massive problem for me .

I have been put on an exclusion diet for 4 weeks. They then reintroduce foods to gauge reaction!!!!

To cut a long story short

I feel remarkably better in these few days (started wed 26th Aug)

My mouth ulcers virtually cleared up, my migrane headaches gone and my stomache problems have vanished .My rashes seem to be clearing up and itchy skin etc improving every day.

I feel normal ( I think.....been such a long time I can't quite remember( over 10 years ) LOL ....more energy and my sleep pattern seems to be improving also.

It is a VERY strict diet as you have to give up an awful lot of foods ....but OMG its worth it as far as I'M concerned.

Look up SALICYLATE INTOLERANCES and see how common it is for lots of people.

Hope it helped a little .....better to change eating than keep on taking more medicine (that have they're own side effects to go with it)

I would be interested to find out if any fellow Bechets" family "members have tried this.

regards

butterfly_

xx

in reply to

SORRY......I CAN'T SPELL TODAY .....

ITS BEHCETS NOT BECHETS

BEEN TO WORK TODAY ....WELL THAT'S MY EXCUSE

butterfly_ xx

2106 profile image
2106 in reply to

Hi. I have just been reading an article on salicylates after you mentioned it very interesting as I had never even heard of it before. I changed my diet everything organically grown with most done by ourselves. It really does make a difference to me. Thanks for sharing. Xx

in reply to 2106

Yes its a strange thing the salicylate intolerance!!!.

I have had conformation from Immunologist last Thursday that salicylates a problem for me. Further blood tests results to come for other possible allergy in few weeks time.

I am still improving and hopeful to reduce some of my meds in the next few months with Drs monitoring.

Hope you keep well and thanks for reply.

butterfly

xx

rooser1 profile image
rooser1

agreed. have had the stomach ulcers, actually just getting over one from 2 weeks ago because i let stress get the best of me. so had to namaste that and take prevacid for a few weeks.

But- at the height of my sickness a few years back- i had thrush so bad (yeast overgrowth) so I had to go sugar and carb free for 9 months. Thing is- i felt a difference after a week. I truly believe going carb free/ sugar free was the uphill stroke for me to finally start getting better. I had no more gas, bloat, cramps etc etc. Like i thought i constantly had food poisoning...that bad,.

Long story short- I think this disease exasperated a sucrose intolerance for me. So still sugar free, very low carb... i dont eat processed things like bread or pasta. Meat. Fats, veggies. I avoid most fruit bc i cant handle the sugars. But i suggest you do keep a journal because it literally took me 10 years to pinpoint that it was sucrose. Go sugar free/ processed free. See how you feel. Remember what works for some may not work for others. But everything is worth a try. Some people on here are low carb, or all protein, or FOMAP or avoid night shades. Ive seen a few people intolerant to NSAIDS and ulcers cleared for them. But i would say bottom line, as a scientist and a "sufferer" of BD, SUGAR IS INFLAMMATORY on many levels and that is proven, so cut your cookies, soda, biscuits (assuming your UK- im usa here) and try some basic meat, good fats, and green veggies. Keep a list.

Good luck and keep us posted. Feel free to click on my profile for my other indepth responses to others about specific foods and meals.

Netsbets2016 profile image
Netsbets2016

The only thing that helps my stomach is steroids, sounds crazy but a low dose 10mg helps . Also no acidic foods no soda , nothing carbobated, and no sugar . Just water works for me ive tried everything. Even artificial sweeteners irritate my stomach. Hope this helps

Matilda53 profile image
Matilda53

Two recommendations: It is not at all unusual for Behcet's folks to have food allergies - you need keep a food diary and determine patterns. Some food allergies don't have an immediate reaction - there can be a delayed reaction. Second, if your gut reaction is IBS, I've found that CBD oil drops will normalize the peristalsis of the gut. Further, if you take colchicine make sure that it's only one tablet per day - that drug will give you unrelenting diarrhea.

LostOH profile image
LostOH

I'm still trying to get a diagnosis but I 've had lots of lower GI problems since birth and other than the great advice above from everyone rectal suppositories of hydrocortisone really help a lot when nothing else does. I also take a protein pump inhibitor like omeprazole. For nausea when ginger or ginger ale isn't enough I take promethazine or odanesteron /Zofran. I have taken Bentyl for diarrhea too it's an anticholentergenic goes by hyoscamine generic similar stronger one is Levscin. I would recommend trying natural aids like diet changes first. But when all else fails these medications are what have actually worked for me.

I'm also negative for Crohns, UC and other problems but have moderate eosinophilia in my lower esophagus. But most of my pain has been lower GI. I've had a lot of every kind of bowel symptom including passing blood and ulcerations in my lower colon not related to ulcerative colitis on pathology. Still a mystery for diagnosis. But I have retinal vasculitis and branch retinal artery occlusion with autoimmune cells seen and we ruled out other autoimmune diseases but I have my first apthous ulcer in my mouth which is awaiting biopsy results to rule out cancer. It's been there going on 3 weeks without signs of healing.

I hope this helps. Has anyone here had the oral ulcerations after the ocular involvement? I need help with diagnosis in US.

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