Hi I was diagnosed with my BD 14 years ago but over the last 12 years I have been fairly healthy, until in 2009 when I had to have a

[kerrylee4]

hysterectomy and since then my health has declined I have a few questions, first I was wondering if anyone has ever had trouble with their throat/oesophagus . I have a lot of trouble with mine and I cant swallow even water without immense pain. I also get mouthful of ulcers so I can eat well and I also get genital ulcers as well. At the moment my GP is tryimg his best to treat me but he doesnt know much about BD and I dont know what to do about my swallowing problem. Any help you guys can offer would be truly helpful

[Jozi]

What are you on medication wise?

I don't suffer much from ulcers in my throat so I can't offer too much in that regard although I know a lot of people recommend 'magic mouthwash' for mouth ulcers (and drinking coke when you can't handle water). Genital ulcer wise I use lidocaine gel for pain relief, especially when I need to go to the bathroom as well as a prednisolone gel to help it all heal as quickly as possible.

Also, it might be worth looking at an element of hormonal intervention, if there was a link to the hysterectomy (I presume ovaries as well?). Not that I think there's much research into that BD wise but it's worth a shot

[LillaMy]

Yes, I have had trouble swalloing many times about four years before my diagnosis. As Jozi says Coca-Cola is the only thing I can swallow when I have the ulcers in my mouth. When I started with Colchisin it made a hughes differens with all my ulcers. Hope you get help to get better!

[kerrylee4]

At the moment Im not taking anything for my BD. Im waiting to get into the immunologists at RPA so my GP only has me on prednosone. I found that taking the pill would help control my BD for some reason as you go into remission when your pregnant but since my hysterectomy (I still have my ovaries) my BD got 100 times worse.

I have never tried to drink coke when I cant sallow but I will try that next time...thanks Although my pain can last for days so I was hoping for something that would soothe it so I could eat

[Leslie33]

Hi! I use viscous lidocaine and its okay to swallow... doesnt taste good but will numb everything! Also I have carafate which is used to.coat the lining so ulcers may heal... sometimes I crush a pill and mix w viscous lidocaine & swallow bc it helps. Magic mouthwash is another option but for me doesnt help as much! Good luck

[madandme-equalsthree in reply to Leslie33]

I was just given carafate, for my ulcers, that are now lining my GI tract..... I have BD - but, since Sept have suffered w/Diarrhea, N, & V. (was mis-dx w/recurring stomach virus and tested for flu through-out DEC). I found some comfort in a recent DX: of Chron's - this from a new found Reumatologist running standard 'new pt' blood-work. Sounds crazy/confusing doesn' it!. The doc that performed my EGD and coloscopy - has given me a DX of ulcerative colitis ...... and says

"I DON'T LOOK LIKE I HAVE CHRON'S" ....OMG!!!

I'm sure many of you can relate to similiar comments!

New Reumy - referred me to a dif GI. Says "WOW!, Unbelievable".

To my point, .......... I also get ulcers in, my throat and mouth, causing severe pain. I couldn't manage w/o my Lidocaine and it works. As does swallowing coke. Burns..... but, when you want/need to eat - it's worth the pain. I will begin crushing the Carafate pills too coat the ulcers in my mouth - (on my next break-out). Thanks for the heads up.

Best to you,

Lisa

[Leslie33 in reply to madandme-equalsthree]

BD began in my GI system.... N &V constantly, ulcers from mouth to bowels and diarrhea over 50+ times a day!! I was first misdiagnosed w Crohns bc GI involvement in BD mimics Crohns.... Studies show its often not Crohns but BD causing it.... It took 2yrs after dx of Crohns to get my BD diagnosis correctly!! I knew it wasnt Crohns....

[billi]

Yes I had this at the onset of BD 30 years ago. I drank coke and used CLENIL inhalers . Eventually overtime they became less frequent and less severe ...not had any for a long, long time. Regards hysterectomy any illness, ops or change eg. Holiday in different country often sets the immune system into a quandary but I'm sure in time things will settle. For now sounds like you need a lot or rest and so e loving care.

Hugs and Smiles

Billi

[sian35]

Hi

Sorry to hear of your difficulties. I have ulcers in my throat which also affect my eustachian tube.

I was advised to garge the triple mouthwash (presccribed by London COE) made up of nystatin, soluble steroid and a soluble antibiotic. It does seem to help.

Regards,

Sian

[kerrylee4]

Thanks everyone for your help. I used to have a specialist that I would go to but I refuse to go to him now because unless my blood test shows my BD as being active he says Im ok. I will tell my GP about the meds for my throat and Im just resting and hoping that I get better soon.

[lesleyg]

Hi kerrylee - this is only hearsay but I was going to the dermatology department of RPA and the doctor there told me she had a BD patient with ulcers in the oesophagus and that he responded to thalidomide. If you want to private message me I'll give you the name of the doctor (also I think she would be quicker to get into than immunology. I'm fairly sure you could keep both appointments as they would be at RPA.

Lesley

[madandme-equalsthree in reply to lesleyg]

Like! We need a like button!

[paige1991]

I drink coke for some reason it's the only thing that doesn't hurt to swallow including water it also gives some of the sugars and things your body needs if you can't eat it's not a great solution but it works for me