Flare ups

[johnmq357]

Hi friends

It's been a while since I have been on here.

My GP has finally agreed to refer me to Birmingham Centre of Excellence, after two years of mouth ulcers every single day( more than 1000!), sore eyes and joints all the time. Constant puss filled spots and flare ups every three months in my bowel.

I am going through a bowel flare up this past three weeks, but this time the amount of mucus and bright red blood, is a lot worse. I am probably passing between a half litre and one litre of blood and mucus per day! Much more mucus that blood though. Also an unbelievable amount of wind. I also have a dull, but not too sore headache all the time.

I have had about six bowel flareups before, but this one is and lot worse and never seems to ease. It makes me very scared and I guess that this then causes a lot more stress!

Two GP's refused point blank to refer me to Birmingham. I then went to a third and brought many photos of my stool, in my mobile phone, to show her.

She was really helpful and telephoned Birmingham that same day.

The blood in my stool really scares me! I have tried pure Aloe Vera juice, many whole foods, flaxseed etc etc and nothing works!

I would be grateful if any of you could give me any tips regarding easing the bowel side of flareups.

I don't have the means to upload photos to my laptop but I do know how to attach to text message on my mobile, if anyone with bad bowel flareups, would like to have a look and if mine are the same.

I am really at my wits end.

Thank you all.

John

[sam0511]

Good luck, I would be interested to see what advice you are given. I was finally diagnosed earlier this year, and the azathioprine is working, however my symptoms are ulcers, headaches and eyes. Whilst the medication is working for eyes etc, and unfortunately I am experiencing bowel problems myself at the moment. Please post how you get on. Thanks

[Netsbets2016]

Hi John , I'm sorry you are going through this . I deal with IBS as part of this horrific disease, at anytime I could be constipated for 3 days then boom the stomach cramps sweating and pain kicks in. The way you are describing your bowels is exactly what happens to me lots of mucus, and what looks to be blood. get yourself check and I wish you well.

[6alice11]

Hi John,

I was referred to the Birmingham CoE earlier in the year where I was diagnosed with Behcet's. My symptoms were somewhat similar to yours. I'd had mouth ulcers and a lot of headaches for years but it was the gut symptoms that made me go to my GP. I had constant diarrhoea with blood and mucus for months. My blood tests always showed inflammation and I lost a lot of weight to the point of being quite underweight. I wasn't absorbing anything and so I'm deficient in a lot of things despite taking extra vitamins and iron. I kept getting told it was "just IBS" and there was nothing they could do. The other symptoms were dismissed ("everyone gets mouth ulcers, you're too young to have joint pain, it's just acne...etc"). It wasn't until I went to a new GP with genital ulcers (gross I know) that she put all the symptoms together and referred me to Birmingham.

The team at Birmingham are great. I saw a rheumatologist, ophthalmologist and oral specialist and got a diagnosis all on the same day. The gut symptoms were put down as 'possible Behcet's-related colitis'. It did take a while but to cut a long story short I saw a gastroenterologist in the clinic and I've been started on azathioprine which is used in Behcet's but also inflammatory bowel disease. It takes a long time to work and I've only been on it a month so it's hard to say if it's helping yet.

From what I've been told bright red fresh blood is less of a concern than darker blood or black stools (which could mean bleeding higher up the digestive system). Fresh blood can mean haemorrhoids or fissures among other things. I tried buscopan, immodium, peppermint, mebeverine etc with little relief. Weirdly it's the healthy whole foods that are the worst for me. If I eat any sort of veg or fibre generally it looks exactly the same as it went in. I did read somewhere that out bodies have to work harder to digest healthy foods like veg since it not processed like junk food but I don't know if there's any proper science behind it. My mouth ulcers have been better since the oral specialist told me to try sensodyne pro-enamel toothpaste since it doesn't have SLS in it and told me steroid asthma inhalers make all kinds of ulcers go away quicker. I hope your appointment is soon as I'm sure the Birmingham team will be able to help and please keep us posted how you get on

Alice

(sorry for the long post)

[johnmq357 in reply to 6alice11]

Hello Alice

Thank you for your reply and it certainly wasn't long.

Like yourself I have had many many blood tests. All of mine are normal and don't show any sign of inflammation or vitamin deficiency. Yet all over my body I have spots filled with puss. Blotches on my skin that falls off like dandruff. Stinging eyes that force themselves shut around 11pm or when I am too long on pc or tv. Arithritis pains in feet, knees, one hip, wrists, fingers and right side of neck. Multi mouth ulcers that have been there every single day since 05/02/2015. Been on Clenil steroid spray for months and it does absolutely nothing to get rid of the ulcers! All the spray does is reduce the pain and the ulcers don't stay as long as they used to, but this makes no difference, because new ones in different places just re-appear immediately. Sometimes the big ones also bleed in my mouth.

Constant but not too painful dull headache all the time.

I have had about 5/6 flare ups in my bowel since Easter 2015. There was always lots of mucus and traces of blood (which always looked worse when I wiped with white toilet paper) dozens of times a day.

But this time it's much worse. When I go to toilet all the usual mucus and a thunderstorm of wind comes first. Then when small bits and pieces of poo arrive they are surrounded with lots and lots of blood. Then I use about four big handfuls of toilet paper to clean it all up! All these tissues are bright red in blood and not diluted with mucus, like the way it was in earlier flare ups. I took photos on my mobile.

I decided to go to local small Hospital. I showed receptionist the photos and I got to see a Doctor very quickly. She took blood and told me that a motorcyclist was ordered to take the blood to the main hospital for testing. She said that if there were abnormalities, I would get a telephone call with-in two hours and would be taken to hospital.

That was lunchtime and it's now almost 11pm so I guess that all the blood was normal again.

I have all these symptoms in my body now for nearly two years. I am on no medication, except the Clenil steroid spry.

My Rheumatologist has only met me just once. She is well aware of all of my symptoms and guess what!....she gave me a pamphlet on Arithritis to take home and read!!

I really don't know what I need to do, to get some help from somebody, somewhere.

Thanks for listening and I will keep in touch.

Kind regards

John

[UKADMIN Partner Behcet's Syndrome Society]

John, thanks for posting and good luck for a diagnosis and treatments that helps with your many symptoms. Have a look at our website behcets.org.uk and remember we have a helpline if you need to talk to someone. 0345 130 7329

Best wishes to you.

[distanttree]

Some foods cause the body to shed the mucus layers of the body. Black tea... lemon juice ..

Xnthar gum. And moe...

Some foods cause lumps. They cause inflammation. Coffee dairy..gluten..

So...wear away a tissue...a bit of body..then cause an inflammation..so pressure on the thinning part..and...pain...breakthrough bleeding etc...

Avoid foods that cause shedding...my doctor told me that it does no harm...urrrrrrr.

It affects the eyes..like a misted up windscreen.

It affects the ears....instability.

It affects the mind...packets of chemicals which cause the neurones to work.. are blocked and this causes the mind to slow down...talk to Susan greenfield about this.

It does clear because the lymphatic system cleans the system..so drink and di a bit of gentle exercise......

Continual wearing away of the soft tissue is where it's at.....plus inflammation.

Keep food diary...although at the moment..it is severe.

Try a super calming food diet such as rice boiled fish and broccoli for three days.

Three days is usually enough to ease things a bit .

[NerdyChristina]

I started drinking tart cherry juice at the urging of my primary care doctor. It's supposed to be good for inflammation. I find it does do good things for my stomach, but it's strong, so when I gave it to a friend who had a flare up of diverticulitis, he cut it with Sprite

[lovenothate]

Hi John,

I have had similar bowel issues to you with my Behçets and I wondered whether at any point a topical steroid enema had been suggested or offered to you?

A Prednisolone Foam Enema comes in a pressurised can and with some disposable plastic tubes. You insert the very end of the tube and press the can which dispenses a measured dose of steroid foam.

For me, this has been a great way to improve the bloody mucus and pain. Ask your GP. The only thing I would say is to document when you start it and the results you get from it. You don't want to mask this symptom to the point where any Dr thinks it's not a problem for you any more. In other words, it's a great way to control the symptom, but does not address the cause!

All the best to you,

Will 😃

[johnmq357 in reply to lovenothate]

Thank you Will and I will ask my GP about this.

Regards

John

[duke22]

my kid has always had gi problems with behcets. bad constipation bad stomach cramps bad diarrhea. he has been checked for ibs chrons etc. he is tough but he has screamed out at times and then cant walk after going to restroom. it is awful. dont know how to fix. he didnt have genital ulcers but got shingles in his private area 3 times till he got on famcyclovir - now that doesnt happen at least. very vitamin deficient. a c and d. got on ivig for immune system. after effects were to bad to continue that. he cant take the drugs like azathioprine cause he had cancer before. cant take a lot of meds cause of that and the others like colchine cause he just cant tolerate the side effects. tests dont show the inflammation but you can look at him and see it. when he had cancer he didnt have to take a lot of steriods for some reason but cant take them now because it makes everything worse. processed food seems better for him than fresh i dont know why. we are in the united states and been to john hopkins etc., nothing good yet.