Just diagonised

[webbs8]

After 4 years of severe mouth ulcers, finally got chrons diagnosis last week. Mine is mainly in my mouth and small bowel. Is this quite unusual? The only thing that has calmed it down is steroid tablets so any tips for newcomer would be gratefully received, thanks 😊 x

[FRreedman]

Don't be afraid to say No, or Ouch. If it hurts tell your GP or GI team, and if you really don't want to do or try something please say "Thanks, but no thanks." If any one doesn't like your answer, and they know your disability, then your better off without them.

[watergazer]

I have ulcerative colitis and am prone to lots of mouth ulcers- I find that putting white toothpaste on them helps also gargling . Take care

[Hidden]

I’ve had exactly the same, very painful mouth ulcers. And a course of IV and oral steroids for another crohn’s related problem cleared them up very quickly. I had suffered over a year with the ulcers - GP prescribed mouthwash, which did absolutely nothing.

I personally believe GP’s (or at least mine) do not understand crohn’s and the multitude of problems it causes and seeing my gastro consultant can take weeks - so we have to suffer in silence

[webbs8]

Thank you Dickinson and baz Salty for your replies. So baz are you on medication for chrons?

[Viklou]

I get multiple mounth ulcers a lot. I got some mouth wash for it but although it does help a little they just come back. I have another mouthful at the minute. Over this winter it's got a lot worse. I'm just hoping it's a phase that will just go away, Nothing seen on scopes or scans so IBS is the diagnosis, personally I know my body and I think there's more going on than IBS but what do I know!!!

[webbs8]

Hi Viklou thanks for the reply. Sorry to hear you get them too. I suppose if they hadn't seen few other ulcerated areas in my digestive system and lastly from video endoscopy they saw got ulcers in small bowel mine might not have diagnosis of chrons! Have you had endoscopy and colonoscopy?

[Viklou in reply to webbs8]

Yes had both and an MRI in 2018 and they were ok. Just stool samples show inflammation but it's up and down. They don't seem too concerned but for now I'm still under the gastro team but will probably be packed off after my next visit and told to suck it up sister lol

[Dg54vuf]

Hello, I have been diagnosed with crohns for about 20 years now. It took 10 years of tests ( bearing in mind 20 years ago you could go months between tests and result consultation) to diagnoses. I too have it in my small bowel and would constantly have blockages which caused intense pain. I also had mouth ulcers pretty much permanently. I was on azathioprine for most of the time and had a course of Humera which did help my crohns.

For the mouth ulcers get them to check your B 12 levels. Mine was extremely low when it was diagnosed and once I started on injections I improved hugely. I have been off any medication for my crohns for 6 months now and touch wood no problems. So I hope that gives you hope, all the best, I know how hard life can be in flare up.

[Viklou in reply to Dg54vuf]

I've been taking an oral spray B12 which seems to be keeping my B12 in normal limits. I was low in folate but was on folic acid and this is back where it should be

[webbs8]

Hi Viklou

So is a positive your cameras and MRI were all clear and good that the B12 spray helps you

[Viklou in reply to webbs8]

It sure is xxx

I originally had the scans after I was admitted to hospital January 2018, I'd lost a lot of weight and was in a lot of pain. My weight has now stabilised, it goes down when flaring but it generally stays the same at the minute. The bleeding doesn't happen often and same with being sick thankfully. I think if I can keep with the pain meds and anti sickness from the GP, as and when I need them, I'll do just fine.

Think I'm going to cancel my appointment as someone else may benefit more than I will as there isn't much they can do for IBS. If I go I feel I'll be wasting their time as much as mine. Most stuff you just figure out as you go along, what works and what doesn't. You kind of get used to a new normal. At least you have made me realise that there is no point in going further with this.

[webbs8 in reply to Viklou]

Sounds like you got pretty good understanding of what going on with yours and what keeps it under control. Yeh I know what you mean about it just gets to be the norm! It sure makes me appreciate the difference of how I feel in my mouth inbetween flare ups without the ulcers. I have just ordered some toxaprevent to try so will let you know! You are prob right about is there anything else they can do in their field anyway!

[Viklou in reply to webbs8]

Lol I can't control it, I just manage it the best I can xxx

[webbs8]

Hi Dg54vuf

Thanks for the reply. Mine sounds similar to urs and wow 10 years before diagnosis! What is Humera? Never heard of that. I've had bloods taken quite a few times but nothing been mentioned about B12 levels! Will have to ask. That's great you been off the medication 6 months and doing well and that is fab to have some hope from a positive experience where only hear of it being a progressive disease. Hope yours carries on keeping at bay for you.

[Dg54vuf in reply to webbs8]

Humera is an injection I had to give myself every 2 weeks. It was a fairly new treatment when I was given it. I don’t know exactly what it is but I’m sure someone on here will. I was also taking Mesalazine for years when I read an article about it. It is slow release for the lower bowel. As my crohns is in my small bowel, I asked my consultant why I was taking it, his reply.....”I don’t know, it’s doing nothing for you”. I had been taking as many as 9 a day at one point. So my advice is look into every medication you are given, they all have side effects and if it’s not doing anything for you there’s no point in taking it. Hope this helps, all the best.