Strange symptoms

[Mja75]

Hi. I have either behçet’s with gi involvement or crohns. Every couple of months I have an episode, usually in the middle of the night, where I start having severe gas like cramping, so bad that it us painful to move, speak, etc and I end up moaning or screaming until it stops. I often start to have symptoms of pre-fainting when this happens, with low blood pressure, sweating, blacking out, due to the severe pain. It usually ends after I have moved my bowels once or twice and will last anywhere from 30-60 minutes. It is sheer torture. This is different from my more typical flare symptoms, and sometimes after the middle of the night agony, I don’t find myself flaring in the morning. Does this happen to anyone else? Suggestions?

[Mrs-Champers]

Hi Mja75, Sorry to hear you’re suffering. I’ve always suffered intermittently with various GI symptoms, including some of what you’ve described. Early this year I had a very severe episode of pain, sweating, etc. and nighttime was worse. through investigation I had very high blood inflammation and bowel inflammation, subsequently diagnosed with some ulcers and IBD alongside my BD.

Given your symptoms, if you haven’t already, I strongly suggest you see your GP or rheumatologist asap, for bloods and referral to gastroenterology. In the meantime, I would recommend avoiding any non-steroidal painkillers, and eating soft and bland food such as smoothies, clear soup, mashed food (Aunt Bessie’s carrot and swede mash is amazing!), plain fish or chicken. Look up foods that cause inflammation and avoid these asap. Eat small amounts, plenty of water. This approach with the food may just help calm the bowel down in the meantime. What you describe could be any number of things, from slow bowel/constipation to chrons or many other things, and best to get it checked asap.

Good luck!

[Lettie999]

This happened to me, one night the pain was so bad I did pass out and when I moved my bowels I just passed blood. I spent a week in hospital but they were unable to find out what had gone wrong despite cameras, x-rays and scans. Occasionally I have an episode but no where near at as bad as the one mentioned.

I hope you issues ease / disappear.

Good luck.

[CJBmom]

Dear Mja75 - I am so sorry to hear of your pain and suffering. I read your post and was upset for you beyond words. My adult son, age 35, who lives with us, suffers terribly with so many symptoms of BD among which also include intense stomach pain, blood in stool, and ongoing GI issues. The recent posts describe exactly what happens to him.

He is extremely reluctant to get any GI work up for two reasons (I think 🙁), basic lack of trust of most medical professionals, and because he is on Medicaid, (healthcare option for those who cannot afford to buy insurance and who are unemployed/disabled) his choices are very limited and they are usually for docs who aren’t “the best and brightest” so to speak.

I see how he suffers and while he does his best to stick to an anti inflammatory diet, I don’t know how “normal” this is for BD patients or if there is anything he can take. The Otezla he takes is notorious for causing GI upset, but he’s had this well before he started Otezla.

His pain management regimen includes opioids, and they do cause constipation, but he has has managed that issue for many years now, it’s just that the GI problems are getting worse. I was hoping to learn what others have done to get relief and I welcome any comments or suggestions. I am so grateful for this forum, and for those who share their experiences and difficulties. 🙏🙏 🙏

To Mja75 - I send you healing thoughts and hope you find relief very soon! 💕

[ZoeSwifty]

Hi Mja75, I know exactly how you feel and i have great sympathy for you having suffered with those symptoms for the last 4 years. The pain was so intense especially during a bowel movement as everything was so inflamed. I would be getting up in the night - it was awful! I cant eat gluten now or lactose since the GI symptoms started and when it was bad i had to keep on a very bland diet , i lost over 8kg. Last year it got so bad i was regularly ending up in hospital on a drip as my BP had plummeted and my iron level was non existent as whatever i ate went straight through. Get referred to a gastroenterologist - they will do an colonoscopy and see if crohns or related to behcets - mine showed no sign of the crohns ulceration and my gastroenterologist said Behcets related. At the end of the day though he said it didnt matter as would be treated the same. As i have had sepsis twice now the London behcets centre have put me on Vedolizumab which just targets the stomach under my gastroenterologists advice and this has been a game changer - put the weight back on and can eat more widely. Still cant eat almond croissants though! Still have to be careful and can still get the odd sharp pain if i go off piste but not making you double up and whimper! If it feels sore like today - had too many vegetables yesterday! i go back on a bland diet for a day or so and it helps. Find your trigger foods and avoid them. Everyone is different but the Crohns BRAT diet Bananas, rice , Apple sauce and Toast are the default in a crohns flare up - except i eat rice cakes instead of the toast unless gluten free! Have a look on the crohns site under the IBD as its full of good advice and suggestions. Try and find the foods you know you can eat when its bad that wont irritate. Hope you get sorted soon!

[Mja75 in reply to ZoeSwifty]

Hi. I have had countless colonoscopies. Nothing ever shows up despite severe symptoms. I do take immunosuppressants, but am going to look up the one you mentioned. Thanks!

[ZoeSwifty in reply to Mja75]

When i had my colonoscopy, even though i had awful stomach issues and my inflammatory markers were through the roof, the gastroenterologist couldn't see anything at all and he said he really searched! Thats why the stomach issues are down as Behcets based and not crohns. There are other biologic drugs out there so hopefully one of those will help?All the best.

[BabyOleg]

I have had this loads, over the last few years and I always thought I just had a severe case of wind, because it would always pass once I had been to the loo, but I would be in so much pain, sweating dizzy and feel like I am going to throw up because of the pain. could this still be the case or is it worth me mentioning this to my rheumy? This is quite interesting because it only ever happens to me in the middle of the night never the day time

[Pixie013]

Hi Mja75.

I'm sorry you're going through this. I have gastrointestinal Behcet's. It is differentiated by Crohn's based on biopsies--the latter is characterized by granuloma.

I have had five life-threatening flares that occur when my biologic loses its effectiveness and a new one is needed.

I hope your specialists can help resolve this for you.

[B130859]

HiI have Bechets and suffer exactly the same thing except my episodes can happen at anytime of the day x