Ulcers question please?: Hello, I was wondering... - Behçet's UK

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Ulcers question please?

missrosiex
missrosiex

Hello,

I was wondering if anyone suffers badly with ulcers (genital and mouth) :( mine keep getting me down at the moment, there seems to be no rhyme or reason to how often I am getting them but lucky if I have a week or so in-between getting a minimum of two, up to five both down there and mouth (they always seem to come up same time weirdly)

I am on cellcept and colchicine for them, and steroid cream and the mouthwash medicine,

But nothing is stopping them coming up, my question is, is ulcers just something you have to learn to live with with behcets and just manage through? Just try and find things but it's part of it you have to learn to live with?

I've only been diagnosed about six years now, ulcers wasn't my original problem but they are continuous now, effect work and personal all the time :(

My doctor's have said that my meds are fine and controlling them.topically is best, but steroid cream doesn't seem to help them (I put it on at the start when you know there coming but they still come up large) and my mouth ones still come up, they do go abit faster, less than a week now but they are so painful sometimes.

Thankyou

13 Replies
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I use tea tree oil on oral and genital ulcers, slightly diluted on genital ones and neat on oral, I know that it says dilute but I have been using this for decades before I was ever given a diagnosis or any treatment, I was just made to feel as though it was my fault and I was doing something wrong. Anyway I use it regularly, after 40 years I am so aware of when symptoms start I use it immediately. I have eventually been prescribed with oral steriod mouthwash which I only use if I have not caught things. I even considered if using steriod mouthwash could be used on genital ulcers, I don't see much difference...

Dental hospital said years ago the biggest issue is keeping your mouth clean and rinsing after food is key.

If you are eating sugary, acidic foods maybe give these a miss and reduce or remove refined carbohydrates for a month at least.

Hope you start to feel some relief soon.

Gillian

lesleyg
lesleyg in reply to gillianTS

Hi Gillian, can I ask what you dilute the tea tree oil with? Also are there different strengths of of tea tree oil? Apparently it’s grown in Australia but it’s not something I use a lot – I find it very strong. Cheers Lesley

gillianTS
gillianTS in reply to lesleyg

Hi Lesley

I use water to dilute the tea tree, I put it in a sterile plastic bottle. Add the tea tree oil and warm water, replace the lid and give it a really good shake, I use a bottle with a squirty top so I can use it throughout the day, really shaking the solution each time before use. You get used to the tingle. When I get anything on the pubic area outside I just use neat oil.

Always test this out first on your skin before using liberally, especially when using neat, start using in small concentrations and increase the mix if you wish.

I use the same mix for a mouthwash, Always spitting out the solution. If this fails with my mouth ulcers and they start to grow I dab a little bit of neat oil on the ulcers either with my finger or cotton bud, depending on where I am. I always carry a bottle with me.

I use tea tree oil for insect bikes, wounds. People use it for lots of things, even for the treatment of thrush, boils, acne, dandruff, anti fungal etc.

Gillian x

lesleyg
lesleyg in reply to gillianTS

Thanks Gillian, I will definitely try it, now just a dumb question, roughly what ratio would you use with the oil and water? Cheers Lesley

gillianTS
gillianTS in reply to lesleyg

Hi Lesley

I will say it all depends on how much comes out of the tea tree oil bottle as they differ, but I use around 10 drops in around 400ml warm water and give it a really good shake each and every time I use it. I have always considered but never got round to trying the same mix in a spray bottle.

Gillian x

Hi. I suffered terribly from mouth ulcers 20/25 at a time some as big as a 5pence piece and they took weeks to disappear. Now I use a natural toothpaste and also take a homeopathy remedy Merc Sol 30c as well if they flare up. This also helped my genital ulcers considerably. Since doing this I get almost no ulcers in my mouth and only the scars left from my genital ulcers. Xx

My daughter suffers terribly with mouth ulcers and was initially diagnosed with A condition call Oral Facial Granulomatosis.

Which is the oral manifestation of Crohn’s disease. (Up to 17 at a time)

She follows an elimination diet free from cinnamon, benzoates and citrus and all their derivatives. We don’t just eliminate it from her diet but cleaning products, toiletries etc.

This helps massively. There are diet sheets available on the internet.

She also has a steroid mouth wash called Triamcinalone but this is a hospital only prescription.

My suggestion would be to keep a diary and look at the ingredients of everything you are eating in the first instance and then try the elimination diet.

Also on the diet.... for me it was going completely sugar free. Meat/fish/ veggies and fats. I also had cut fruit initially, theyre back in now, but low sucrose/sugar ones only.

Look into a sublingual b complex as well. Colchicine depletes b12, b vitamin deficiency can also contribute to ulcers. I ended up being deficient and now have to do shots... either way- sublingual b complex will most definitely help with everything. Im able to wake up now on my own-not to mention the brain fog feels like its lifting.

I have (touch wood) only had one massive outbreak of genital ulcers that put me in hospital. There were so many of them and they were so horrific that they got the hospital photographer in to take photos of them :(

They put me on pretty large doses of morphine in hospital for the pain, but the only thing that helped with the pain for me was gabapentin, which helps with nerve pain (there are a lot of nerves in mucosal tissue like the mouth and genital area). The effect was life changing - I could walk around and even wear underwear haha. Took a month to get back into jeans though! Would definitely recommend trying gabapentin for the pain if your dr will prescribe it to you.

Also lidocaine topical when I needed to go to the toilet helped a lot with the residual pain. Oh - and the ulcers only started going away when they put me on quite a high dose of oral steroids, starting at 60mg and tapering down over about a month.

.I’ve been on the lowest dose of colchicine since I was in hospital and no issues with them, but do get mouth and scalp ulcers quite a bit. They are mild too but I do have a steroid cream called Kenalog that I put on when the mouth ones get bad. I just wash my hair more if I get the scalp ones.

Hope that helps - even if it’s just to know that you’re not alone

Hi there, I have been diagnosed about 4 years now. My main issue was mouth and genital ulcers non stop that led to my diagnosis.

The only thing that work to keep them under control is colchicine 500mg twice a day. It took some time to see the results and in the meantime I got through it with hydrocortisone 2.5mg buccal tablets that you let desolve near the ulcers if you can tolerate their taste. That for me worked a treat and now I manage to keep the ulcers away . Very rarely I might get 1.

I have used the hydrocortisone 2.5mg buccal tablets they sadly did not work. Colchicine became toxic in my blood and is now written in my medical notes as allergic too. Steriod did nothing and Azathioprine has helped but I feel has changed my left in many ways making me feel deeply depressed and ill, and this is where I am up to right now, I am managing my ulcers with dissolvable prednisolone mouthwash, no swallow of liquid, tea tree oil and diet.

Hope that some of the advice the group have given will be helpful to you and you start to feel some relief soon.

Gillian x

I had oral ulcers constantly for two years before anyone did anything about them really. They tossed colchicine at me and another new drug but they just gave me chest pain. I found that doxycycline took them away. I took the antibiotics, two types, and boom. No more ulcers. For awhile at any rate. This is recommended by the American Behçet’s Association I found out after, and you can get it out into the miracle mouthwash. The genital ulcers I’m still at a loss with.

Hey there, I understand how this can get you down. My heart goes out to you.

Skin ulcers started appearing with my presentation of a BD about 4 years ago. Prior to that it was severe mouth ulcers. The skin ulcers literally came out of seemingly nowhere. In one regard I feel that ulcers are something that one has to live, to an extent.

I recently started working with a Naturopath doctor who’s helping me to stabilize after a pretty brutal year. I was having a flare every month. Prednisone has been the only thing that gets rid of my flares, but it’s caused my hormones to go out of whack. I used to use steroid cream, but that actually thins the mucosal lining over time, which seemed very counter intuitive to me. Basically, I’ve had very little positive experiences with pharmaceuticals and western MDs.

I’ve been following the anti-inflammatory protocol with my diet for 3+ months now(eliminate all pro inflammatory foods, focus on eating ample anti inflammatory foods), and I feel pretty good most days. I also put a lot of work into managing stress-physical, emotional, and psychological. This eventually lead me to creating a spiritual practice and reconnecting with myself.

All of this along with the treatment plan my new doctor has already started to make some changes. We’re working on stabilizing inflammation and healing my gut, which showed dysbiosis and malabsorption in tests. Most health issues can be helped by healing the gut, so this makes sense to me.

I guess my point is, in my experience I’ve learned that it takes a multi angle approach to find wellness with this dis-ease. I’ve been severely depressed over it and incredibly hopeful. Right now I feel well enough to trust what I’m doing, and know what doesn’t work for me.

The most I can say is keep exploring and keep doing whatever IS working for you.

Best wishes.

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