Recently diagnosed, eating like a monster.

[ForeverACrohn's]

So this is going to be weird for me, as I'm not usually the forum type, but i figure when you have crohn's disease you might need help from those who've got the experience, so here goes.

Only diagnosed mid-April, but been suffering badly with symptoms (loose stool, excruciating abdo pain, the usual) since around January. since everyone seemed to be on a go-slow, it took an A&E admission for me to eventually get seen by a gastro in April. had x-rays, MRI's, Flexi-sigmoid, lots of different tablets and those funky tasting elemental drinks during my weeks stay in the hospital. not the best experience of my life, but definitely better than some of the stories I've read on here.
Finally get told i have crohn's disease and given prednisolone (among other drugs) to calm my inflammation. seems to be working as the pain levels and frequency of pain has dropped over the past few weeks.

Lost a lot of weight through the disease, somewhere around 35kg in total over 8 months, but seem to be putting it on quite quick considering the prednisolone has had me eating 4 meals a day, 3 fortisip replacement drinks a day and at least one full tube of pringles a day.

Gastro consultant is considering putting me on azathioprine after my steroids. asked me to look up the drug and did a tmpt test to check what dose i would be on and such. the side effects I've read about this drug worry the hell out of me, but then again so does having a stoma or ruining my immune system with the steroids.

Anyway, that's basically whats going on with me.
not sure what I'm supposed to include here, but i think I've covered the most important stuff.

Thanks for reading the shortened version of my Crohnie few months.

 

[nogutsnoglory]

Welcome. The crazy eating patterns are normal with steroids, you really do become a monster who can't stop eating everything in sight. Hopefully the steroids quell your latest flare and the Azathioprine is a good maintenance option for you.

 

[mccindy]

Personally that's why I've been afraid of steroids. The last time I was on Prednisone I put on 30 pounds in one month (I'm not a very big person so that was a huge gain for me). Took forever to lose it when I went off the meds. Since then I've been very afraid of taking them again. Hoping it's not something I'll need to do, but I can certainly see why someone who is trying to gain weight would benefit from taking them.

Have your symptoms resolved with the meds, sounds like you are able to eat a fairly full diet?

 

[ForeverACrohn's]

A lot of my meals need to consist of white bread and fully blended soups like tomato. i can now handle one non-soup meal a day without getting much pain, but it's usually something like fish & white rice, or Chicken breast and mash. not exactly a varied diet, and avoiding fiber like it's poison (cos i guess it is for some of us). still have to chew the hell out of anything solid so it breaks down easier.

just figuring out my main trigger foods now. i seem to be OK with potato products (like pringles) and white rice/bread. caffeine spicy foods and red meats seem to be the worst for me, like a lot of people on here.

symptoms haven't gone because I've only been on 4 weeks and still have 4 weeks to go, but they have definitely reduced. hoping that i dont need anything removing, as the doc said my inflammation was quite bad at the start of my large/end of small intestine.

 

[mccindy]

Thank you for the information! It seems like I am pretty much the same way, fish, chicken and rice. I've tried white bread once, had some issues, so I've ordered gluten-free bread to try. Anything fiber seems to give me a lot of pain, especially raw veggies. It seems like you are pretty on top of what your trigger foods are already! hopefully after the next four weeks you feel a lot better and don't need any surgery. I'll keep hopeful thoughts for you!

 

[ForeverACrohn's]

I've read that a lot of IBD sufferers develop celiac disease or lactose intolerance, so the gluten-free bread is probably a good way to go. even if it doesn't work, I've had gluten free bread and the taste difference is barely noticeable.

still not sure about how milk products affect me, as i seem to flare after melted cheese but not after normal cheese. could just be the fat separation.

hoping not to have surgery, even though i could probably get a tummy tuck to rid me of my loose skin from when i was a chunkier chap.

Just gotta hope for the best for me and everyone else who is suffering this pain in the butt.

 

[nogutsnoglory]

Some people with IBD have celiac disease, gluten sensitivity or dairy intolerance but IBD as a disease doesn't cause these problems. Like all foods some are fine for some while others are not. I'm fine with wheat and dairy. I tend to avoid gluten free products as they are pretty unhealthy and full of artificial ingredients.

 

[LondonFoy73]

Heya, are you Birmingham, Alabama or Birmingham, UK ?

The reason I ask, is there are two variants of the drug. Azathrioprine and 6MP (Mercaptopurine). They are similar but react vastly differently with different people.

The 6MP is a more refined, advanced version of Aza with less side effects. The reason for this is that the body needs a higher TPMT enzyme count to break down the bad bits of the Aza into 6MP, and then use more of the enzyme to break down the bad bits of 6MP and take it out of the system, so in effect your body needs to use 2 lots of TPMT enzyme to perform the same breakdown job on the drug.

So..........if possible, ask your consultant to go with the 6MP rather than the pure AZA... in the UK, 6MP is the norm as it has been recently trialled and licenced by NICE with very positive results and AZA is / has been phased out............. but that makes AZA a much cheaper drug for the hospitals to purchase, so as they are always trying to save money, they try and use the cheap, older drugs rather than the newer, more expensive drugs.

To conclude, results prove that more people handle the newer, refined 6MP more easily than the older AZA. Don't get me wrong..... both are very scary drugs normally used in chemotherapy treatments and are very effective at compromising the immune system, so there is a high chance that you will sniffle with coughs and colds a lot more than normal, you need to avoid people with hardcore ailments, like chicken pox etc, and you MUST have VERY REGULAR blood test to ensure that everything is working the way it should do and that you can get any early warning indicators to stop if you need to..... but having said all that..... I'm on my 2nd run of 6MP and even though I have a low TPMT count, I find it a very beneficial drug.... scary.... but it works....

Happy to discuss more in PM if you want?

 

[ForeverACrohn's]

I'm in the UK, so I'm definitely gonna ask my gastro about 6MP. i read up on the aza like he told me and saw that the 6MP was basically a more broken down version, but i assumed that was just if the part of the bowel that converted it was more inflamed.

not really good knowledge wise on a lot of this stuff, since I've only really suspected I've had crohns for a few months, so thanks for the tip. not a big lover of taking pills and such, since i'm a bit of a goody two-shoes and dont drink dont smoke and all the rest, so advice on drugs is always appreciated.

If you have any links to useful info on the 6MP or AZA i'd love for you to PM me them so i can read them, and i'll make sure to PM you with any questions i have, as you seem to know at least a bit more than i do.

 

[LondonFoy73]

http://www.nacc.org.uk/downloads/factsheets/drugAzathioprine6MP.pdf