Just diagnosed

[Poor Eeyore]

Hello all.

I've had symptoms for a year, just been diagnosed as having small bowel Crohn's.

I haven't had any diarrhea as a consequence, 'just' abdominal pain, nausea, weight loss, and feeling miserable. I started getting symptoms in November 2009, so Crohn's, as it has now been diagnosed, has spoiled two Christmas dinners... I had ab. pain on Xmas day 2009, and this year didn't even attempt Xmas dinner! Mmmm, chicken soup...

Probably a familiar tale to many, it was first suspected as coeliac (gluten intolerance), then IBS, then an IBD, and finally Crohn's specifically.

I've had several blood tests, stool samples, an ultrasound scan, a barium meal, a gastroscopy and colonoscopy (on the same day, so I had a sedative) and recently a wireless capsule endoscopy.

Medication: during the 'it's probably IBS' phase, I had Mebeverine, then when suspicion shifted to an IBS I had a 3-month course of Asacol anti-inflammatories plus a decreasing dose of Prednisolone steroids. Thankfully, after some initial spottiness, irritability, tiredness and insomnia (!), no side-effects. I was passed to gastroenterology from 'general'.

It seems that the way my body reacted to the latter medication (regaining some appetite, and some body weight) 'strongly suggested' Crohn's, and now I've been, for one week, on Azathioprine. I'm to be on an increasing dose of that for 6 weeks initially, while they monitor through blood tests how my body reacts.

I have some questions; an enquiring mind wants to know!

 

[Dexky]

Welcome and good luck Eeyore!!

 

[georgiegirl]

Hi Eeyore, and welcome! Bring on the questions!!! I'm sure someone here can answer them - I think most of the members here know more than our docs.

Merry Christmas by the way (even though you couldn't enjoy the gorging on food part, I hope Santa brought you something nice!)

 

[Poor Eeyore]

Thanks for the welcomes.

It's odd; I keep thinking there must be some mistake - I can't be ill! I've enjoyed robust good health for my whole life - I'm 43 now - and then suddenly, this.

I also find it odd that I could enjoy (cautiously) a reasonably hearty meal sometimes, then others, maybe just a day later, it gave me nausea, discomfort, or even pain.

The medics seem intent on controlling the Crohn's, which is fine, but haven't given me any guidance on food, beyond sticking to 'liquidy' foods, and avoiding meat and fibrous or bulky food in the short term.

The only meat I eat is chicken and turkey, and I don't eat fish. For the last week, I've had chicken soup bulked-up with some pasta as my main meal.

The empty feeling is getting tedious - wondering how long I have to wait until I can next eat!

Any thoughts on foods? Would liquidising a modest-sized balanced meal help?

 

[carrollco]

Poor Eeyore:

I'm newly diagnosed too and went through the this can't be happening phase that lasted about two weeks. When I found myself crying all the time I realized I was in the well of self-pity.

Just the knowledge snapped me out of my doldrums. Which was a kinda nice welcome call to know that it took me a couple of weeks to recognize self-pity. It must not be a place I visit often.

That said, on the food issue, I've given up. I know I can't do dairy and sometimes I can do red meat and potatoes. Pasta is okay as long as there is no tomato sauce. I'm at the point where it really doesn't matter what I eat so I've given up trying to find out which food to avoid except for the severe triggers like dairy.

There's a place on here where people discuss the Ensure only diet. They say six weeks of liquids can put you into remission. For me, I can't do Ensure. It makes my stomach blow up.

Eweeee...

So, I'm going try Humira in the next couple of weeks and see if that works. Check out the Ensure link. I really really thought of doing it.

 

[chris scoffham]

welcome i too was dianognosed this year in june, i also went thou what you are going thou lost of weight & diahorra every day till started on medication
certain things i cannot eat its a matter of trial & error to find what suits you
i try 4 bussels sprouts yesterday did i suffer yes, carrots do not bother me but u do get bored with the same veg

 

[georgiegirl]

Eeyore, there seems to be a couple of trains of thought on diet. One is that diet won't actually make you worse, but it can bring on some symptoms. The other is that this disease can be controlled with diet. It's probably a case of trial and error.

I find that I can eat most things most of the time. Celery (unless it's cooked really well) and beetroot are no longer my friends. And a lot of dairy can have me running to the loo. But the most noticeable thing for me is that large meals aren't good. Check out the food diary in the wiki (http://www.crohnsforum.com/wiki/Diary-Inclusions?&highlight=food+diary) it might help you figure out any particular foods that bother you. The biggest problem is that everyone is different in what they can deal with. I also sometimes have a strong aversion to certain things (red meat in particular, which I eat pretty regularly). I've learnt the hard way to listen to my body, or I will end up regretting it.

I haven't gone down the path of a liquid diet yet (I have a relatively mild case so far) but many on here have tried it with success. I think it just gives your bowels a rest for a while so they can heal.

And are you only on azathioprine for 6 weeks? Or is this just a trial to see if you have any side effects? To my knowledge it takes around 3 months for it to start working...

 

[Poor Eeyore]

And are you only on azathioprine for 6 weeks? Or is this just a trial to see if you have any side effects? To my knowledge it takes around 3 months for it to start working...

It seems to be a trial; I understand it's a potent drug with possible serious side effects. I had my first blood test after one week (Christmas Eve), and I go again in 3 weeks time.

The gastroenterologist mentioned some markers I think, in the blood that they'll be monitoring the levels of; I think it's some marker for - among other things - if the bone marrow is being affected by the drug.

I expect to be having several more blood tests, I assume that the dosage will increase if all is well in the first round of tests. I did read that it takes 6-12 weeks for the drug to become effective.

Would I be right in thinking that taking an immuno-suppressant means that I could be more likely get infections?

These are of course things I should have asked the GE when they suggested this course; at the time, though, I couldn't think of anything to ask. Well, I'll know next time I see them - 2nd February.

 

[Poor Eeyore]

welcome i too was dianognosed this year in june, i also went thou what you are going thou lost of weight & diahorra every day till started on medication
certain things i cannot eat its a matter of trial & error to find what suits you

Luckily, I haven't had diarrhea; I don't know if that's something that could change. As I've been told that there aren't any 'trigger' foods, I'm hoping that my diet won't be too badly affected. It seems it's more a case of the form the food is in: solid vs liquid.

I used to cycle 6 miles to work every day; before February this year, I'd only missed one day in the last 6 years. And that day I walked! (It was that Sunday night we had overnight snow into the Monday morning, and the gritting lorries hadn't been out, and the buses were cancelled. I couldn't cycle in that, there were no roads visible!)

Getting the bus to work is driving me insane! I can't wait to cycle again, but I'll need to build up my fitness again, and build some of the muscle back.

i try 4 bussels sprouts yesterday did i suffer yes, carrots do not bother me but u do get bored with the same veg

I never liked brussel sprouts anyway...

 

[Tacykakes]

Ah, food my favorite whoa of this fun disease.

So here are some tips I have learned to get something with good calories in me (hey for a sick girl who lost a lot of weight I was still good on nutrients in my blood so I must have been doing ok)

Carrots are great for a crunchy snack....Yogurt can be your best friend is dairy isn't an issue (lots of great flavors and the probiotics are always nice to add into your diet)

When you feel sick stick with B.R.A.T bananas, rice, applesauce, and toast. Look up information on low residue diets when you are having diarrhea and pain.

Rice----get yourself some fun and interesting seasonings that arent spicy and LOVE it. If you can add butter do so the calories count.

Bolthouse Farms and Naked are companies that make these calorie packed shakes that taste good, have protein, and yummy fruits and veggies.

Stay away from tomato anything for a while.

Try Tuna (I sometimes just eat it out of the can)...weird I know but its salty and has texture and is tasty when you get used to it.

I also got a cookbook called "How to cook for Crohns and Colitis" excellent excellent tips in there.

Keep yourself interested in food by mixing up a little crunch, sweet, salty, and smooth. It helps to have a little of each every day.

Little steps---little bites---little meals

You will beat this or at least put up a good fight!

We are all here for you

 

[Poor Eeyore]

Thanks Tackycakes, I'll look into the foodstuffs you mention.