Oesophagus Ulcers anyone had them and what was the treatment, Had behcet's for 40 years usual problems but this is a new one one me

[helen6009]

[tamirra]

Hi, yes my daughter suffers with this a lot, she is normally taken into hospital due to dehydration and unable to eat, they put her on IV saline and steroids, usually for a few days. Good luck.

[helen6009 in reply to tamirra]

thank you for you comments I hope you daughter is well at the moment Big hugs from Wales

[tamirra]

Actually she never is well, they cant seem to find a drug to suit. Big hugs from Kent. x

[xandii]

hi Helen,

I had a small bought of ulcers in my oesophagus a couple of year back. Very painful at times and generally uncomfortable when trying to eat. I also had them in my throat and had a dry irritating cough to go with it. I had a course of strong antibiotics for a different infection I had and it also seemed to help these ulcers. I ate a lot of live yoghurt and had those little drinks that have the good bacteria things in them. They went away on their own after about 3/4 weeks and I haven't had them in that particular part since even though I have the throat ulcers regularly.

It is very difficult to establish how bad my batch actually were as they couldn't be seen but it was very evident where they were.

Sorry I don't have any more clues for you on how long they last or what cures them...I can just say they went by themselves with a bit of help with the antibiotics I had and TLC with the yogurts and drinks. Hope this reassures you in a little way anyway.

take care Hun, big hugs xx

[helen6009 in reply to xandii]

I will give the drinks a go thanks for your advice xx

[andreafm]

I have been drinking marshmallow Tea and this coats the whole digestive system and helps with a whole realm of problems such as oesophagus ulcers, intestines and bowel ulcers and inflammation. Constipation, Sore throats, Heartburn, Hiatis Hernia and Reflux.

Not the best tasting but works wonders for me and you can always get it in capsules, but for your problem the tea would probably work better. Also it should be taken around an hour either side of other medication.

You can check it with your G.P or specialist first if you are worried about trying it.

Andrea

[behcetshurtsbeyondwords]

Hello,

I am sorry to hear that you are suffering from esophogeal ulcers-- its bad enough to get them in the mouth and back of the throat, but even worse to have them pop up in the esophagus. I suffer from ulcers down my throat, right down my intestinal tract fairly often. I always know that they are there when I start getting a bad burning sensation down in my chest and throat (I also get this same burning pain near my stomach and in my intestines), and for me, I find that taking Immodium (pills that help stop diarrhea) as soon as the burning starts, it usually helps to settle things temporarily. I'm not too sure why anti-diarrhea medication helps with the pains from the ulcers, other than the fact that it seems to help "coat" the raw tissues and I think it also helps to decrease acid production. I have tried many, many different things from ice cold salt water to sore throat lozenges with benzocaine or lidocaine, but the Immodium seems to be the best help for me.

Hope that you find some kind of relief Take care

-Jenna

[Michja]

Hi Jenna,

My daughter has been describing the same pain for the past 4 months. We have just got out of hospital on Friday but she is booked in for and MRI some time this week. We are going back to hospital tomorrow.

Did you have an MRI or swollow a camera to help show what's going on, on the inside?

At the moment Jaida is suffering badly from top to toes. The ulcers are now hitting the next wave today only easing two days ago, mainly in mouth but at times in the back of throat and in nose. There seems to be no break at the moment.

Dear Andrea the marshmallow tea sounds fantastic. I'm asking if we can try it out on Jaida. The lidocaine does nothing and Jaida said it tasts discusting.

[helen6009 in reply to Michja]

thanks where do you buy this from

[behcetshurtsbeyondwords in reply to Michja]

Hi Michja,

I'm very sorry that your daughter has to bear the pain of Behcet's-- it certainly is a pain like no other and one that I would never, ever wish on anybody. I can only imagine how tough it must be on you to see your daughter have to go through this-- I am 25 and have to still live at home, and I can see the pain and hurt it causes in my mom and dad. Sometimes I feel that this disease causes them more pain than it does in me.

That is a good thing that they will be looking into things with further testing-- sometimes I wish that my rheumatoIogist would be willing to do that. I have not had any special tests done since being diagnosed (which was a year and a half ago)-- my rheumatologist tries to reasure me that my symptoms and different pains are all from the Behcet's and that the only thing that will help ease it all is the treatment that I am already getting (I'm on 800mcg Remicade every 6 wks; Azathioprine; Colchicine; and Prednisone as needed)-- only problem is that things aren't settling down. Sometimes I do get frustrated, wanting more answers, and a specific treatment that will make me feel better-- but at the same time, I don't want them poking and proding in me anymore because they did so much of that before I was diagnosed. Before I was diagnosed, I had so many things done searching for answers-- barium xrays; MRI and CT scans; endoscopies and colonoscopy; and a special one that tracked solid food through my entire GI tract-- at that time, none of them shed any light onto what was wrong with me. I guess now that we know what it is, its probably best if they don't keep doing invasive procedures and biopsy scrapings, as even the smallest trauma to my skin aggravates my body worse.

Anyways, I really hope that things begin to settle a bit for your daughter-- wishing you and your daughter all the best

[andreafm]

I get my marshmallow root powder from a well known shopping website. I get it bulk as a powder and add about 2 spoon fulls to a small cup of hot water and let it dissove and drink it.

If you can't tolerate that just get the capsules or tincture as this will still help the whole digestive system and also helps mucous membranes, coughs and asthma.

Basicly it provides a jelly like coating of the system and so calms down inflammation.

Make sure that you take it at least an hour either side of other medications etc i.e 1 hr before or 1hr after.

As with any herbs etc patience is the key, but find this helps pretty quickly.

Have a look at this link which will tell you about it.

herbs2000.com/herbs/herbs_m...

good luck

Andrea

[Michja]

Hi bechetshurtsbeyondwords,

I think it's fair to say we hate seeing our babies in pain, whatever age they are. We have been lucky the rheumatologist is wonderful, not wanting to put Jaida through procedures she doesn't need. They have discussed her swallowing a camera for about a year now but they are worried it will cause more ulcers. I was thankful for them thinking of Jaida's comfort.

We are in hospital at the moment and having a MRI tomorrow. Jaida is in so much pain eating and want to know if there are ulcers in small intestine. They have been talking about the Ramicade IV but I was hoping the azathioprine would be the manic pill. She is on all the same as you and the same, with no relief. Unfortunately the IV steroid is also a blessing when the pain is unbearable. Luckily Jaida is not a sook, although I wouldn't blame her lashing out. I think she is the opposite, bottles it up and becomes withdrawn. I'm so lucky I have a very supportive family and a sister who is scientist and works in a lab at the local hospital. Came in handy at the start when things were going straight over my head.

I was wondering at what age you started with your symptoms.

Regards,

Michelle

[andreafm in reply to Michja]

I remember as a very young child [3yrs] complaining to my mum about being sore downstairs and always having ulcers in the mouth a throat. Ulcers and sore throats are a family thing so it was just accepted that I had them all the time.

In those days things were ignored a lot more and so my mum just used to use nappy cream and I was treated [virtually every other week] for Tonsilitis and Thrush throughout my childhood, which didn't work. I had fevers and aching limbs, fatigue, which the Doctors put down to this.

Around the late teenage years I was then diagnosed as having herpes, which we know now it wasn't.

Thank god for the Behcets Society and the Internet, along with a handful of pioneering Doctors as without either of these, I doubt behcets would be diagnosed very easily at all.

It has taken quite a few changes in my medication and I am now on Infliximab Infusions, which so far for me have been the best....I do hope they Doctors will find something that helps soon and may even kick it into remission.

Good Luck to you and Jaida

Andrea

[helen6009 in reply to Michja]

I was 6 when I first started to show symptoms but they didnt eventually diagnose it until I was 12. I have had it 4o years this year... struggling at the mo with it but soem days are better than others. I know as a parent seeing a child in pain is a nightmare.now Thank good ness for supportive parents

[behcetshurtsbeyondwords in reply to Michja]

Hi Michelle,

Just wondering how your daughter, Jaida is doing? I will keep her in my thoughts and prayers, and also you as well. I know this can't be at all easy on you either.

I became really sick when I was 16 yrs old, with a vasculitic attack in my lungs, my joints started flaring up with pain and swelling, and then at 17, I had an autoimmune attack to my pituitary gland in my brain, also had many different skin rashes/lesions/ulcers/blisters, severe chronic fatigue with low-grade fever and unwell flu-llike feeling-- at this time, I was investigated for lupus and autoimmunity-- but several specialists didn't believe that I was sick and basically just labelled me as a "depressed teenager with bad skin and over-protective parents." They kept telling me that I just had pneumonia and bad acne. Eventually, things seemed to settle a bit from around 18 to 21 yrs old-- then when I was 21, I started nursing school and was under immense stress which I think started falring things up again-- Then they incidentally found a cyst in my bile duct and pancreas, so I had a major surgery which really excaberated everything. My immune system became a bit too powerful and attacked and destroyed my adrenal glands, causing addison's disease (adrenal insufficiency)-- I was put on steroid replacement for that, and things seemed to get better-- then suddenly, the Behcet's took over and I haven't been well since (its four years now that I've been in a bad flare).

I am pretty sure though that my immune system started going wonky on me at puberty because when I was 12 yrs old, I started feeling not well and can remember getting ulcers on my lips and in my mouth fairly often and also suffered from sweat chills. My parents tell me that I was a pretty healthy kid, except for lactose intolerance and asthma-- but otherwise I was very energetic and rarely caught colds or flus. Then at puberty, I started getting bad ear infections and lesions which the doctors kept calling acne. and then from then on, more and more problems arose.

Take Care Jenna

[Michja]

Hi Jenna,

I just can't believe what you have gone through in your short lift. Your parents sound just like me, driven to get help for their little girl.

Jaida has just (20 minutes ago) started Infliximab. I'm so nervous but just pray that I'm doing the right thing and it works. I would like to dream of Jaida day by day improving. In two weeks giving our rheumatologist a cuddle and say thank you for giving Jaida back her life. Fingers crossed.

Regards,

Michelle

[MrsBeau]

This had been the worst aspect of Behcets for me, until the fatigue and GI trouble set in.

I've been throat ulcer free for 7 months - before that, I had them pretty much constantly for 5 miserable years.

There are several things that helped me:

1. Steroids. If you feel a tingle in your throat area, get some topical steroids in your mouth as close as possible to the back of your mouth. Otherwise start a course of prednisone tablets as soon as you can. Don't wait and see. The longer I wait, the longer the recovery.

2. Local anaesthetic so you can eat. You can get "Anbesol" gel and liquid, or benzocaine lozenges, all from the pharmacy. The effects are instant but short-lived so have food ready before you take them.

3. Solpadeine tablets - takes the edge off. I used soluble as the effect was faster.

4. Try not making it worse - switch your diet over to anti inflammatory foods, ditch alcohol and carbonated drinks, acidic foods etc.

5. Swilling mouth with hydrogen peroxide - my ulcers heal faster when I do this. No idea why - it was a tip I found somewhere online.

I'm did initially take the approach of "wait and see" with my throat ulcers, hoping they would resolve on their own, but learned after months of suffering on and off that this was never going to happen and gave in to prednisone.

It works fine for me at 20mg/10 days (then tapering). It took a while of experimenting to find the dose that worked. My GP was absolutely useless.

Best of luck,

Lebeautemps.

[Steamboat]

Dear Helen 6009,

I also get oesophageal ulcers seen when they do an endoscopy. Usually they build up and start bleeding. I then start vomiting blood (this starts people running) so go to theatres where they treat what they can and make me nil by mouth until things settle down. usually I also need a couple of blood transfusions.

Anthea's suggestions sound good so I will give a try as the more blood they give you the more likely you are to get a reaction or something nasty.

Felicity