Very painful mouth ulcers

[rose93]

Hi everyone

I'm not sure if this is linked to my Crohn's or not but I'm aware mouth ulcers can be.

For about 4 weeks now I've been having this horrid pain when I swallow which feels like a lump in my throat and has been giving me sharp pains in my ears. I've never had this before. I had a throat infection and conjunctivitis about 5 weeks ago so just put it down to me taking a while to get better.

However, on Saturday it started getting worse and I dreaded swallowing because of the pain and my tongue felt swollen and very sore when I moved it around. My ears were hurting so bad too I was convinced I had an ear infection. yesterday I felt even worse, I couldn't speak or eat properly because of the pain so went to see a Dr and they said my ears looked fine but the back of my throat is red and I have ulcers right at the back of my tongue. The whole left side of my face hurts so much! I didn't think ulcers could be this painful?

Does this sound like it could be to do with Crohn's disease? Can it be a sign of things getting worse? I've never experienced it before and didn't think ulcers could make you feel so ill! I've been told to use bonjela but so far it's done absolutely nothing

Thanks in advance

 

[24601]

I'm not a doctor so, you know, this opinion isn't coming from a medical professional but...

I had a virus that caused those symptoms a couple of years ago. It was pretty horrible for a couple of weeks - it definitely seemed to take a lot longer for me to fight the virus than the standard timescale for a 'healthy' person. It seemed like forever since the only things that could be done to help were some paracetamol for the pain and analgesic throat sweets. Also I find a warm heating pad can really help with the ear pain and the side of your face hurting. The swollen painful tongue was just awful I just had to keep myself as distracted as possible by constantly reading or watching television and found sleeping difficult. The symptoms seemed to be so bad that I actually went to my GP two or three times over the 2-3 weeks that I was dealing with it and I'm not a doctor person. Sometimes you just need reassurance that things aren't getting worse.

Did your GP give an opinion? If you're ever worried about anything being connected to your Crohn's you should feel able to contact your GI or IBD nurse and ask. It's better to ask and be told that it's not connected or it's nothing to worry about instead of feeling anxious. :ghug:

 

[rose93]

Thanks for your reply. I'll give the heating pad a go, I've tried paracetamol but it doesn't really do much. I've just been eating ice pops all day to ease the pain.

I spoke to my IBD nurse today and they've advised to try and get an urgent appointment with the Dr again and get a prescription of steroid tablets to treat mouth ulcers because its probably to do with my Crohn's. I didn't think mouth ulcers could make you feel so unwell, I've been in bed all day because of it. I'm not on any treatment for my Crohn's so I can't help but worry that it's getting worse.

 

[24601]

That's good that your GI has weighed in...obviously they're better placed to judge than me

Are they wanting to get you on meds for Crohn's soon?

My experience above was perhaps the closest that I've got to knowing what it's like to have bad mouth ulcers (for me that hasn't really been a Crohn's thing but I have heard how bad it can be for some Crohnies) and I did find it really difficult to eat/sleep/do much because of the pain. So based on that and the experiences I've seen others go through it really can be that bad...who knew, right? I mean until you've actually experienced it. So sorry to hear you're dealing with this now

One thing you might ask your IBD nurse about is if it would be okay for your GP to prescribe some supplement drinks like Fortisip for you to keep your nutrition up while you have these mouth ulcers because the last thing Crohnies need is for their nutrition to suffer while your body is trying to heal. Your GP should be able to do that, especially if your gastro team request it. Modulen might require a letter from your GI.

Hope you're feeling better soon

 

[rose93]

Thanks, it may be a virus and nothing to do with Crohn's disease as the Dr did say the back of my throat is red and tonsils are slightly enlarged. I just hope the tablets do the trick. I'll see what they say about supplement drinks too, thanks

I was diagnosed in January and was suppose to be starting on Azathioprine but because of the risk of skin cancer my dermatologist advised the consultant not to put me on it (I had melanoma a few years ago so I'm already at significant risk). The other option was methotrexate but as my Crohn's is only mild at the moment they didn't feel I needed to go on anything for now. It concerns me though that I'm not on anything!

 

[24601]

Did they not do a course of steroids or Exclusive Enteral Nutrition (EEN)? What are your symptoms like and your inflammatory markers?

If EEN works for you it is free from side effects and some people will do that first 6-8 weeks course to get in remission and then repeat a similar length course (or at least 4 weeks) every 3-4 months as maintenance or alternatively do 50% formula and 50% normal food (that's the Japanese protocol). Not easy but if it gets you healthy and keeps you healthy then it can be worth it. Good to know it's an option anyway, I think!

I understand that they don't want you to be at increased risk of skin cancer with your history and if they don't feel biologics are warranted either then the dietary approach might be best. If it's something you want to do and would feel better than doing nothing, some people have success with diets like SCD, Paleo, GAPS or IBD-AID, though often combined with some medications too. There are other choices for Crohn's treatment too like anti-MAP antibiotic therapy and the Qu biologics SSI vaccine, though that one's not yet widely available.

Which parts of your GI tract are affected by Crohn's? And did they tell you what sort of findings they made with scans and things when you were diagnosed?

 

[rose93]

Nope, I haven't taken anything for my Crohn's disease. It's a little frustrating as it's taken me years to get a diagnosis and I was looking forward to finally getting treatment and feeling better, but I've been told I won't be going on any now (Unless I get worse). My calprotectin level was 550 before I got diagnosed, I haven't had another test since. My symptoms aren't severe but I do get a few bouts of diarrhoea everyday, stomach pains, sore joints, loss of appetite etc.

I have mild terminal ileal Crohn's disease. My colonoscopy showed inflammation in the terminal ileum and an MRI of my small bowel confirmed Crohn's disease. I just worry that without treatment it's just going to spread and get worse. They seem to think I'll be fine without treatment though :/

 

[24601]

Well, I certainly understand your concerns about things getting worse - and in reality doctors don't understand this disease well enough to tell you that it definitely won't :/

And I can understand too your frustrations at working hard to get a diagnosis and then getting no treatment or help to feel better. It doesn't make sense to me - after all you wouldn't have been pursuing a diagnosis if you felt perfectly healthy and yes, immunomodulators might be too high risk for you, but there is at least one proven treatment with no side effects in EEN.

I suggest you request that your GI prescribes Modulen. Tell them that you aren't feeling very well and you'd like to see if you do feel healthier if you get the inflammation under control. If you want to (and this is what I think I would do in your situation but it is of course your choice and I don't want to come across as though I'm telling you what to do!) I would tell them that you want to do a 6 week course of Modulen (drinking only the formula drinks and having no normal food) and retest your fecal calprotectin. You of course will also be going by your symptoms and seeing if you feel better, have less pain and diarrhea and if the issues with your joints improve.

I think Modulen would be worth trying (or Fortisip, pretty much any complete nutritional drink works for the majority of people) and it will, I think, give you useful information to start with about how this inflammation affects your well being.