Helping Mom From Long Distance-Newly diagnosed

[RCardoletti]

Hi, my mom was recently diagnosed with Crohn's in January after a horrible year of not knowing what she was suffering from. She was diagnosed in London and began a course of prednisone in early January. She is now on her last week of the treatment with 4 days left and she's now had a mouth ulcer reappear. She lives in Mexico so it's hard for me to be there for her and although she's going to the gastro this week, I'd like to know if anyone else has had this same situation (in terms of ulcer's reappearing while finishing a course of steroids). Does anyone know if she could continue to take steroids or is that not a good idea? What should she look for from the Dr. in Mexico should she be prescribing aminosalycites or immunosuppresants?
Thanks all for your help.
Best to you
-RCardoletti:sign0085:

 

[Angrybird]

Hello and :welcome: to the forum, it is good to see that you are trying to get some info together for your mum. Is the mouth ulcer the only thing that has happened or have other symptoms started to come back? Many of us get ulcers and it can be a sign that the crohns is still a bit active (also anyone who is feelng a bit run down in the body may get these).

The aim is definelty NOT to be on steroids for longer than absolutly necessary but usually they get continued on a low - working - dose for a little while whilst the new treatment is started as it takes time for these to fully kick in. Once confirmed usually by bloods and symptoms that the new med is starting to work you then continue with taperng off the pred. Otherwise there is a risk of the there being no working treatment whilst the new med is taking effect which could trigger another flare up of symptoms.

With regards to future treatment it is hard to say without knowing more about what tests have shown and the severity of her disease. Have a look at our treatment forum as this gives info on the meds that do get used. Also do you know if she has looked at her diet at all? Whilst this does not cure or cause crohns it can play a big part in symptoms, she a least needs to be following a low fat/low fibre diet and to avoid foods with little pips and seeds which can aggrivate the bowel. Otherwise keeping a food diary of what sets things of is always benificial. It may even be worth looking at enteral nutrition, this has done a good job for many here with helping the bowel settle down - check out the diet forum for further info in this.

Sorry for the long reply but I hope it helps. I will keep my fingers crossed that your mum can feel better soon.

xxx

 

[RCardoletti]

Hi there, thank you so much for you reply, this was really very helpful, I'll share this my my mom and follow-up with her after her appointment to see how she is doing.
she has been keeping a food diary so I'll ask her to take a look at it to see if there is anything "new" that she tried which may have triggered it.
will take a look at enetral nutrition, I've never heard of it so will do some research.
thank you so much!

 

[RCardoletti]

By the way I replied too soon, but thank you for your warm thoughts. I'll keep my fingers crossed for you.
My mom hasn't exhibited other systems so I'll keep a close eye as best I can from here.

 

[David]

Greetings. Welcome to the forum and kudos to you for helping your mom like this

Unfortunately, mouth ulcers are a common extraintestinal manifestation of Crohn's Disease. The good news is (sorta) that they are commonly caused by a deficiency in one of the B vitamins. Have your mom get her vitamin B12, vitamin B9 (folate) and vitamin D (for good measure) levels tested. While mouth ulcers can be caused by other B vitamin deficiencies, those are a good start and if they're willing to test her for others, excellent. I know people here who take Complex B vitamins which has helped with their mouth ulcers.

We're here for you and your mom anytime. All my best to you both.

 

[RCardoletti]

hi David,thank you very much for the info, this is certainly helpful. I've told my mom and she's seeing her GI in Mexico on Monday so I've recommeded that she get her vitamin levels checked as you recommended.
in your experience, do you find that the mouth ulcers are almost a "sign" that the crohn's is about to get worse? In the past I find that what starts as a mouth ulcer, leads to fever then loss of appetite and then the horribly upset stomach that crohn's patient's suffer from. Any thoughts on this from your experience?
thank you so much.
good luck to you too

 

[David]

From anecdotes I've read here, some people get the mouth ulcers prior to a flare and others get them during a flare. I know this doesn't help you much, sorry