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Crohn's Disease Forum

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Joined
Dec 24, 2011
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168
Hi, I'd like to start off by saying what a wonderful forum this is.

I'm a 21 year old male who was diagnosed with crohns in aug 2011 after a misdiagnosis of IBS for 4 years. My symptoms include excess and blocked gas, nausea, diahrea, pain and vomiting. The most common being the blocked gas and nausea. I am on Budesonide and Azathioprine and tbh don't think the aza is doing anything at all but the steroid works a treat WHEN it works. I have recurrences of the symptoms weekly although mostly not severe. I've cut out fried food, spicy food and I'm also lactose intolerant as well as cutting out coffee altogether. I'll put on weight for a few weeks only to lose it again after a flare up!!!:ymad::ymad::ymad:

I'm a uni student and HATE when people ask why I'm so skinny and whenever I go out to eat with friends questions arise as to why I'm not eating certain foods or why I'm not eating a large portion. Sometimes I just wanna scream 'IT'S COS I HAVE CROHNS YOU F*****G IDIOTS.' As if I enjoy eating dry healthy meals.

Sometimes I get so fed up of my disease and just feel so depressed. I can't make any plans because of my crohns and just have to take it day by day. I hate telling people about my sickness.

Sorry to ramble on guys.
 
Hi Marx and welcome to the forum! I am sorry to hear that Aza doesn't seem to be doing the trick. How long have you been taking it? I can take 3 full months before it fully kicks in. If it has been over 3 months, I would certainly inform your GI that you haven't seen an improvement. You may need to adjust the dose to discuss another option.

I understand your frustration in not being able to make plans, since you never know how you are going to feel. It's very difficult and disheartening, especially during your time at uni. I sure hope you will find the right treatment soon, so you'll health will be more stable.

Hang in there!
 
Thanks for the advice and kind words Jill. I've been on the Azathioprine since beginning of October now which makes it around 2 and a half months. Hopefully it will kick in soon then.

Also does anyone get lower back pains with the flare up?

Thanks again,

Marx
 
Hi Marx, welcome and definitely feel free to ramble all you need to! Yes, lower back pain is a frequent symptom. In fact, that was my Dad's very first Crohn's symptom, so he spent a lot of time at the chiropractor who, obviously, wasn't much help at all.
 
An Eastern/Western doc informed me when trouble is in the belly, there is mirroring trouble on the back. This guy also does massage (including belly) and works like a charm. If you have inflammation in the belly, it affects other areas, so not a surprise. Do much stretching and that should help you. Stand against a wall and bring up one knee at a time and hold it. You can also do it on the floor. Helps the lower back pain. Other back pain is helped by massage.

You are right to stick to foods you know are okay for you. Keep following that path. You can have fun with people and make obnoxious comments back to them when they ask personal questions. I have found people will back off when you do so. Feel better!
 
Hi Marx and welcome, I'm so glad you joined :)

Pain like you described is somewhat common with Azathioprine based upon anecdotes here on the forum but I would of course inform your doctor.

Do you know where your Crohn's Disease is located in your digestive track? Also, as you're in the UK, have you had your vitamin D levels checked? Crohnies, especially at those higher latitudes, are quite often vitamin D deficient and it can make a positive difference to supplement if you are indeed deficient.

Again, welcome! I hope you become a regular here on the forum :)
 
Thanks for the welcome. I believe my crohns is in my ileum or something on my right side. I think lol. Yeah I am on vitamin d aswell. Good shout!

Annoying thing is, I find it very hard to gain weight and when I do I lose it again after a flare up! But like all things, you learn to live with it.

Glad I found this forum. :)
 
Hi Marx :bigwave: With the Aza what dosage are you on? It didn't sort my symptoms completely until I got to the 200mg mark. I can also get lower back pain and issues with my knees if I am feeling really low. Also are you on any steroids? They are naff to be on but I would have thought you would be on perhaps a low dose still whilst they see if the Aza is going to work? If you don't mind me asking where about's in the UK are you?
 
Also, I'm currently experiencing non-stop diarrhoea for about 4 days. It's the first time this has happened this long in all my time suffering from crohns. Is this normal? Will it go away? Or should I go see a doc? I feel drained! :(
 
Hi there, I am about an hour ish up the A1M, the closest city to me is Cambridge though. If you don't usually have this much D then I would get in contact with your doc/GI nurse although given the time of year how has your diet been? Have you been good or had a few treats? I have found a lot of food on offer is all pastry stuff which is very rich and this can obviously upset things.
 
Oh so not too far then. Yup I was feeling perfect a couple weeks ago and so ate anything and everything in front of me... Guess I had it coming. But yh never had this much D before. Will give it one more day and go to the ER if it continues cos I'm losing a lot of liquid.
 
Try and keep up with your fluid in take as you most probably will be gettng a bit dehydrated. Also eat bland today and in small amounts. I too in past have felt so great that I have eaten what I wanted and then BAM! Out of nowhere your tummy gives you a hammering :( Fingers crossed things will ease up so you can wait to speak to your doc next week, even if it goes away completely still contact them as this could be a sign of your current meds not keeping things under control.
 
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