Hi, newbie

[robbo87]

hi, newbie

Hi there,im a 21 year old male and i've recently been quite ill and yesterday had a colonoscopy.I got told it's highly likely that i have crohns .just have to wait for some samples to be tested.
the last few months have been awfull. i've barely eaten the last few weeks and lost a lot of weight and strength, and i have a mouth full of ulcers which are so painfull and will dissapear for a week and then just come back. everything now is just wearing me out and getting me down so much. i have to go back to see a doctor in a few weeks who will hopefully give me some medication.

will that make a big difference? and will it get rid of these damn mouth ulcers? im slowly losing the will to live

 

[My Butt Hurts]

Hi robbo and welcome!
You will probably get some relief from whatever they put you on. The sooner the better though. Medications work differently for each Crohn's patient, so it may take some time to figure out what works for you. Or, hopefully, something will work for you right away. One can never say. I have no experience with mouth ulcers, but others on here do. There is a wealth of information here, and I will say that I have found more answers on this site than ANY other. Do a search for 'ulcer' and see what comes up. I think I read about someone here using a topical rinse type thing for that for temporary relief.
You might want to try some supplement type drinks to keep calories on, and get some strength back. Boost or Ensure or even Slim-fast.
Good luck, and I hope you feel better really soon!

 

[soupdragon69]

Hey Robbo,

Sorry you are in the same boat with crohns as most here. Knowing what is wrong is 50% of the battle so hang in there!

Have a look at a web page my gastro team set up to help you get your head round some of the basics. www.crohns.org.uk

It is in nice simple terms and you can go back to it as much as you want.

Thing to remember about crohns is it peaks and troughs. So you will have spells of good and spells of not so good. The main thing is to pace yourself and REST when you need to! I know thats not the kind of thing a young man wants and needs to hear but as you feel now you will understand about feeling really wiped out eh?

Crohns can impact on your absorption of your nutrition and as a result your vitamins and minerals so have a look at your diet and try to ensure you get a good balance. Very high fibre foods can be sore on your gut, as can raw veggies for instance. On the other hand high fat foods have the same effect and can contribute to diahorrea.

Make sure you drink enough fluids throughout the day to prevent dehydration too. You may well find that your mouth ulcers will be a sign of your gut being inflammed for you - we each discover "signs" that our body is trying to deal/fight the inflammation that crohns causes. As a result the ulcers may clear up as your gut heals with the meds.

As already has been said the meds can take time to kick in ( days, weeks to months -sorry) depending on the med and what its aim is, and how your body responds and copes with it.

Keep posting here, keep asking questions, and keep reading. Hope the website I have given you helps!

Looking forward to seeing you around. Things will improve Robbo and we will always be here to rebound off ok?

 

[robbo87]

many thanks, and yes the website looks very helpfull

im really struggling to keep myself hydrated at the moment, the extent of my mouth ulcers mean it even hurts to drink anything! but im trying my best.

hopefully things will pick up soon and ill actually manage to eat something and try get back to normal! just normal seems a far away place right now.

 

[MINI Cooper]

Hey there, welcome to the forum!
Soup pretty much said it all- hang in there, we all know it can be rough,
and don't fell bad about feeling like things are hopeless, I know I've
been there. I hope if they do start you on meds, that they will work out for you.
Keep us posted on what the results of the test say and what they plan to do for you!

 

[Guest]

hi Robbo, welcome to the forum!

sorry you're having such a tough time right now - hopefully your results will point the doctors in the right direction very soon, and get you on a regime that will help you.

i think everyone's more or less said what i would suggest anyway.. but i'd add that just sipping water as & when you can will help rehydrate you.. have a glass with you all the time, and if it helps, keep some water in the fridge - might be more soothing if its chilled. regarding the mouth ulcers, & this might sound gross but it could work, you could try a mouthwash of bicarb of soda mixed with water, or a salt mouthwash. don't swallow it though! i have also read that taking a B-complex supplement helps too.

 

[soupdragon69]

Robbo have you tried some small slivers of ice to suck or an ice pop - not the most welcoming thought in relation to the cold snap we have at the minute but might help you get some fluids on board gradually and help to "freeze" the ulcers a bit too..

That website I gave you also talks about nutrition and elemental drinks and I have them as a back up. There is some good research into them as they are designed for Crohns patients rather than ensure or slimfast as mentioned before. So worth thinking about, looking into and perhaps trying. Means you get the nutrition on board without having to chew anything - only drawback is the drinks are cold and cant be warmed up. But definately helped me immensely. One for you to talk to your gastro consultant about when you see him/her next.

In the meantime go for soft foods that involve little chewing and easy to swallow like soups etc.

My mouth ends up very raw as though I have scalded it with something hot and I get small painful ulcers also on my tongue mostly when I flare so understand where you are coming from with this. I tend to stick to either cold drinks as above or tepid/lukewarm drinks which do help too.

Try to stay away from high sugar and salt based foods as I find they irritate my mouth all the more.

When you get sorted out treatment wise might also be worth seeing a dentist for a cleanup and checkup. I have a new dentist who has been great. She suggested rubbing sensodyne toothpaste on my teeth at night as a cream to help with the sensitive teeth problem I was having and its helped alot! They can also help you with advice about caring for your mouth ulcers for YOU as an individual too and your gums etc in general once they know about your crohns so pretty worthwhile doing I think..

When you see your gastro make sure you find out WHERE in your gut your crohns is and how severe they think it is. This can have an impact on your type of symptoms (so might explain why you feel a certain way or are constipated or have diahorrea for instance) and also the meds they put you on. My consultant scored me on a scale of 1-10 to give me an idea and said I was 7.5-8 ulceration wise in my ileum with some of the worst ulceration he had seen in a long time. So taking a list of questions with you is a good thing too and helps you to maximise your short time there. Also means you dont come out thinking you should have said this or that or not understanding something. Also dont let them push you around in that if you dont understand the words used ask them to re-explain it in simpler terms or rephrase it!

You cant give them the vital information they need to know about YOU if you dont understand why and where ok? You also then can have an important part in planning your own treatment and care and can work out some idea of timescales and monitor how you are doing etc. day to day and longer term.

Hang in there mate and keep posting!

 

[robbo87]

well, what can i say. ive just got back from a 5 day stay in hospital after ending up very ill. its now been confirmed that i have crohns, my biopsy results came back why i was in. now im out off hospital im on steroids which i slowly need to be weind off, then i can go back to see a specialist and be sorted with proper medication for the crohns. but atleast for now im better thank god, and out of that horrible place!

 

[Nancy Lee]

Welcome and I'm glad to hear you're doing better.
The steroids will help with the inflammation
and soon you will be weaned off and given something else.

Just wanted to say welcome as I missed you when you first arrived.

Good to see you on the mend!

Nancy~

 

[Cookie]

Hi Robbo,

About your mouth ulcers...I get them a lot too and I have found that it helps to drink really hot liquid. It has a nice numbing effect for me. I drink a lot of hot water with honey. Don't know if this helps others, but it works for me.

Glad to hear you are feeling better and Good luck!

 

[robbo87]

Well ive finally been to see the specialist im doing ok at the moment, had a mini flare up but that seems to be getting better.

Apparently the way i was told to taper of the steroids was to quick so maybe that did it, but anyway..im now on the steroids for 8 weeks going down 5 mg a week, and ive been prescribed to take 4000mg of pentasa a day, anyone any experience with the drug? the specialist said there shouldnt be any major side effects with it but im sceptical!

things are finally looking good anyway

 

[Bonzo]

Hiya mate!

I used to be on Pentasa (2g twice a day). It did the job but not as effectively as Azathioprine does. I never noticed any side effects, I just struggled to swallow the tablets because they're so big and start to disintegrate as soon as they get in your mouth.

I was weaned off them when I started on Azathioprine, which are much smaller tablets. I hated pentasa - I once gagged taking one and threw all my dinner back up.