Just been diagnosed and quite worried

[crazycatlady]

Hi there, over the last 4 and a half years i have been really ill, through tests and scans and cameras they have diagnosed the following -

1) sliding hiatus hernia
2) costcondritus
3) IBS
4) and now crohns disease

I seem to have spent a long time on medication and reading the forums and internet (never google a condition it is very scary!!) i see that i am now going to be subjected to more medication to manage this disease. Does this mean i am on medication for life? Google says i can still have children on the medications used under doctors supervision but i'm really quite worried about what the future now holds.

Can anyone give me advice of what i'm supposed to do now - the hospital wrote to me to tell me i have crohns disease and we'll discuss it on my next appointment in November. Bomb shell or what? I'm in limbo land as i know nothing about what i'm supposed to do now.

HELP!!!

crazycatlady:shifty:

 

[Jennifer]

Hi and welcome to the forum!

May I ask what your symptoms are? Are you taking any medications currently? Do you know where your Crohn's is located? Are you dealing with a lot of inflammation, scar tissue etc? Do you know if its severe, mild, moderate? Do you have a GI doctor (you said hospital so I'm not sure)?

Generally Crohn's is managed through medication so it is likely you'll have some sort of medication for the rest of your life (unless there's a cure found). One good diet that's helped me during flares is the low residue diet. Its pretty straight forward and easy to follow and can help reduce symptoms during a flare. When you see your doctor along with finding out some of the info above that I asked (if you don't know already) is to have your vitamin levels tested. Many people with Crohn's (and I see you have IBS as well which can also aid in vit deficiency) can have vitamin deficiencies and even being in the low end of the normal range can bring on symptoms of a deficiency (such as fatigue, depression, headaches etc). You'll want to test your iron, B12, folic acid, magnesium, potassium, zinc, vit A, B, C, D, E, K etc.

Edit: You can have your general practitioner order blood work while you wait for the appointment with your (hopefully) GI specialist.

 

[crazycatlady]

hiya,

my symptoms are vomiting with no warning, bloating swelling of the abdomen area (people have guessed me as pregnant!!) , severe pain in the abdomen area intermittently, sometimes having to go to the toilet 6-8 times in quick succession and if i cannot get to a toilet severe sweating and sickness and a constant ache across my chest which sometimes makes it difficult to breathe, and acid reflux.

my current medication is up to 3 metrocloparamide tablets ; 2 omeprazole and until recently one sodium dichloparamide (duel release anti inflammatory). per day, i take vitamin c every day to beat off colds and echinacea one week on one week off.

i'm currently under a gasterentorologist (if thats how you spell it?) and for about a year they tested my blood every 6 weeks which i thought was a bit excessive. all they told me was i was anaemic and had low b12 levels and that my blood showed constant signs of internal inflammation and infection.

i will have a look at the diet as i have done a food diary and found that bread and pizza is a definate no no. I have been trying to swap to wheat and gluten free which made me feel alot better.

I think in the letter they wrote they mentioned my crohns is in the libi (something?) and i had a narrowing of the small bowel and ulcerations.

question - if i have mild crohns does it get worse over time? or if i deal with it right to start with can it stay mild?

thank you for all your help i really appreciate it and i will look at those links you sent ;-)

 

[crazycatlady]

oh - and i take fibrogel every day too which has made a massive difference and allowed me to be more active ;-)

 

[Jennifer]

Have you started trying to supplement the iron and B12? After a month of supplementing you have them tested again to see if they've gone up at all. If not or not enough then you'd increase the supplements and retest in another month to see if there's any change. If not then you'll want to talk to your GI (or even GP) about iron infusions and B12 shots. I take 650mg of iron a day (started at 325mg with no change) and that got my numbers into the normal range. Supplementing the B12 didn't work for me after many months of trying different kinds and doses so now I have a B12 shot every other month.

I have blood work done once a month and I'm in remission if that helps you feel any better. Some medications can affect other parts of the body so sometimes we have to have blood work done often. Since you're in a flare its good that they are checking your blood often.

Yes mild can become severe and severe can become mild. Fast treatment can definitely help in keeping it mild and more importantly go into remission.

Have you been tested for Celiac Disease (gluten intolerance)? The low residue diet can be done without gluten. Just replace any gluten item with an item you know you can tolerate. I don't know of any specific recipes for the low residue diet but you can make anything low residue (its just means low fiber, low sodium, low fat, no skins or seeds or nuts, if you drink soda no more than 8 ounces, white meats only (except fish like salmon), nothing fried etc.).

I'll have to look into those meds as I haven't heard of them before. Just looked them up, nothing really Crohn's specific which I find odd. Why hasn't your GI prescribed at least steroids like Prednisone or Entocort to help get rid of that narrowing that may very well mainly be inflammation? A narrowing can cause a lot of problems and you're already noticing a few of those symptoms such as the vomiting, pain and bloating. I'm curious as to why nothing has been done since your test clearly shows a narrowing. Why wait until Nov. to prescribe anything doc? Makes no sense. Have you called their office and told them that you're in a lot of pain and randomly vomiting? They may bump the appointment up sooner or prescribe something now while you wait for the appointment.