Been told i have crohns

[dannyboy84]

been told i have crohns

i was diagnosed with crohns last week after a terrible few months of bloating, diarreah, heartburn and generally feeling depressed about how run down and ill i both felt and looked.
I had a colonoscopy and an endoscopy the other week and was told by the doctor doing the procedure that he thought i had crohns almost straight away.

i'd really like to know how other people deal with the morbidness of it all and if anyone else like me gets quite angry and has bursts of confusion where they cant remember what they were doing or saying???


Any feed back would be much appreciated cheers.

 

[polar1920]

Hi,
First of all give yourself a chance to adjust to the diagnosis, take it in. You have done a good thing in finding this forum, to chat to others who understand. There wasnt anything like this in 1993 when I was diagnosed so information was very hard to come by.
Find out as much as you can about Crohns, knowledge is power. Get the right medication from the doctor, and once it is under control, you will feel better. You have to change your way of thinking, which isnt easy, but you have to live your life with Crohns, not let Crohns live your life.
Yes you still have good days and bad days, but dont let the bad outnumber the good. I have had two children since I was diagnosed, and now have two wonderful grandchildren. And lived abroad as well. But I felt like you did when I was diagnosed, and had no support, and no information. :hug:

 

[dannyboy84]

thanks polar after all the morbid stuff ive been hearing its a nice change to hear something positive.
I realise i have to start thinking differently and my girlfriend has been amazing with researching crohns as ive found it difficult to get my head around but reading peoples views and tips who actually have crohns has made me stop and think about it this forum was a great find for me.

thanks again polar.

 

[Bld]

Crohn's is something you live with, it is not a life sentence at all. I have been diagnosed for over 15 years and other than short periods of being on meds when I have had flares I have been able to live a very normal life. I know I am very fortunate but you will learn to live with it and find out what your normals are.

 

[dannyboy84]

I understand that its something i will learn to come to terms with and live with im just looking for tips on how do deal with the initial reactions of finding out i have crohns and any useful info i can get on how to go about finding what foods trigger the flare ups.

 

[Angrybird]

Hello and welcome to the forum One thing that pops into mind straight away if you are feeling down about things is vitamin levels - have you ever had these checked and if so when? It is common for us crohnies to be deficient in things such as B12 D and Folate and low levels can lead to other problems, a low B12 for example can affect how we feel both physically and mentally among other things. If you have never had these checked I would ask you doc about these and get the specific levels from them and post it here. Also what meds are you on at the moment for treatment? Certain meds (such as Prednisone) can also affect out moods......

Food wise it is definetly worth keeping a food dairy, make a note of all the things you eat and then if you find a corresponding repsonse to it (pain, sudden rush to the loo etc). One thing that does get advised is to keep away from high fat/high fibre foods and things with little pips and seeds and they can aggrivate the bowel. Otherwise it is usually trial and error - what upsets me may not be a problem for you.

Wishing you all the best hun

AB
xx

 

[dannyboy84]

ok i've just written that all down and will be asking the doc to check these levels for me thanks alot AB thats a massive help i was only diagnosed at the end of last week so i havent been given a course of meds yet but ill let you know what im taking when i find out im worried about going on steroids as this illness has made me feel quite angry and short fused and as some steroids are associated with anger and mood swings im a bit worried ill turn into the hulk over night.

Thanks again for the advice x

 

[Tesscorm]

Hi Danny,

It is overwhelming when you first receive the diagnosis and scary as you generally have so little knowledge at the beginning! My son was diagnosed last May when he was 16, so while I don't have Crohns, I can certainly understand the fear and confusion.

Just to give you another option to discuss with your doctor, my son's treatment was Enteral Nutrition - six weeks of formula only (no food other than broth, clear fluids, jello, etc.) and then his maintenance has been the same formula at a lower dosage with his regular diet. It has a comparable success rate at inducing remission as steroids (at least in children, not sure if the success rate is different with adults), has absolutely no negative side effects, has anti-inflammatory properties and provides all necessary nutrition. He ingested his formula through an NG tube at night (he inserted and removed daily - easier than it sounds!) but there are also shakes available that you can drink during the day (instead of using the NG tube).

Other than an antacid, he has not needed any other medication thus far. Please have a look through the Enteral/Elemental Nutrition subforum under Treatments for more info.

Other than a few days, here and there when he feels 'off', he has returned to his pre-diagnosis, normal life - feels good, gained back all lost weight plus some, eating almost all foods (avoiding seeds, nuts, high fibre), playing hockey, school, etc.

Good luck! Hope you begin to feel better soon!

 

[Angrybird]

No worries hun, do keep us updated on what meds get recommended and do not hesitate to share your concerns with the doc, you need to be happy and sure with the treatment they are prescribing. Also side effects are a tricky thing as we are all different and whilst some of us will have problems with a med others will not.

AB
xx

 

[Dunbar]

hello and welcome, I found kiss (keep it simple sam) to be a easy way to remind myself to relax and breathe. Ask questions, don't be afraid to have the dr. explain it until you get it, some information is completely out of our experience so it's like learning a new language. And keep coming here, you will find all sorts of info and support.

 

[David]

Hi Danny and welcome I'm glad you found your way here bud. You may want to read this thread, it sounds like you might be at step two. We're here for you every step of the way.

See you around