My Story so far - New diagnosis Crohns.

Hey all, Im Dan.

This all started at the end of Jan 2013 when im certain i had food poisoning - lasted 24 hrs with aggressive vomiting and stomach pain in the area my crohns is located.

Then a few weeks later i again suffered abdominal pain, and vomiting - went to hospital and suspected dodgy appendix. Again though it cleared up in 24 hrs and felt fine again.

Another week/2 later same symptoms - hospital, i was there alot longer with more tests. It still cleared up within 24 hrs and had a very small amount of diarrhoea after wards when passing wind. The doctors seemed to then suspect an IBD (Crohns). I was put on Prednisone Steriods on a reducing dose for 6 weeks.

I had a Barium scan and a follow up with a useless doctor who is no longer there thank god. They were useless as there seemed to be no urgency.

My Prednisone dose finished on 21st April and a week later i had another flare up (so its obvious i need something rather than a controlled diet) This may have been the doctors plan, but i was not told and was anxious coming off the the Prednisone without anything else in place.

This flare up was quite good - still went into hospital, but because they knew it was crohns, they treated me very quick. Again I also had a small amount of Diarrhoea after passing wind. I had already had a colonoscopy booked for 2/may/13, which was two days after i left hospital. The colonoscaopy was pretty pleasant as these things go - nothing to worry about at all (id take a mild sedative if you can)

The biggest worry/lesson from this is you begin to realise how little people must understand exactly what they are eating - i was one of these people, and now i like tho think my diet is pretty good (no fibre or high sat fat foods due to my crohns). Im not scared of the Disease, i just want to know how to manage it and what i can/cannot eat so i can get on with life - which i know will take time. Fortunately my boss is very understanding. I hope that i am able to have surgery to remove the inflamed bit - however i am rather fearful of that sort of stuff, being cut open etc.

Hi Dan! I'm fairly new to the forum myself, but I've had Crohn's since 1995. Most of that time I've been in remission. How much have you done in the way of altering your diet? I know that has helped quite a bit for me. In a way I'd hope that you don't need surgery. It will take out the inflamed section, but Crohn's can come back in another area after surgery. I try to manage with diet but this flare I have currently is sending me to the doc (if I can ever get in to see him). Hoping I don't have to go on meds that will have horrible side effects. Stay strong!

Hi mccindy, thanks for your reply.
I used to eat alot of rubbish - fast foods, not much fruit or veg. Now i have more of a balance but it is early days and im still learning how my Crohns works. Sorry to hear your experiencing a flare up at the mo, and hope it settles down!

I think id have surgery, but not so i could go back to my old life. Id still keep a mixed diet. Im still quiet young and if my doctor thinks its worth having then id go for it i think.

I think you're right, continuing the right diet is definitely the key to managing symptoms. Hopefully if you have surgery it puts you in remission for a long time!

Hello Dan and welcome to the forum

Are you now back on the steroids given you have flared again? What is the plan going forward treatment wise? With regards to surgery I would be surprised if this is an option at this stage unless you have a narrowing of the bowel due to scar tissue, if you just have inflammation at the mo I would expect that the doc will want to manage this with meds/diet. When it comes to what foods to avoid keeping a food diary can be handy in this area, common problem areas tend to be caffeine and foods with pips, seeds and skins otherwise it does tend to be down to the individual.

Wishing you all the best.

AB
xx

Thanks for your reply AB.

Yes I am back on steroids again following my recent flare up. I had my colonoscopy the other day, which had been booked for ages. The next stage is to discuss the results of that and probably looking to get me on Azathioprine. My Doctor said in general convocation if surgery was an option for me (as it often is at my age), would i consider it. I said Yes.

I have been keeping a food diary, its interesting you mention caffeine as I haven't really noticed any problems with this (im not a big caffeine consumer anyway) - ill keep an eye on this to see if it affects me.

Cheers

Dan

Hi Dan,

Spicy foods and dried fruit...not so good for me I really miss my homemade curries everyone is different though with what we can eat so I would say trial and error and continue with the food diary and include a wee note on any symptoms you might have.

I'm waiting for results of a barium meal, think they were checking for strictures, and my GI is also considering surgery for me, though I hope it won't be necessary. I guess we will both have to wait and see, in the meantime take care and welcome to the forum.

Hi Dan, my daughter is 16 years old and had crohns since she was 10. She has tried every medication going on the market. The doctors also put Jess on steriods 40mg together with azathioprine. She had no flares in 2 yrs and the doctors decided to stop them to see if she would go in to remission. Unfortunately after one month her crohns flared and drs tried to put her back on azathioprine but her body rejected it. She continued on and off steriods then tried infliximab, then humira injections and now methotrexate injections together with steriods. She is now trying to wean off steriods so she was put on a liquid diet for 4/6 weeks. Unfortunately she could not drink the milkshakes so now on a low fibre diet. Chicken, rice, rice pasta etc - very plain food which drs say may help her tummy cope. Hope this helps you to be assured there are a few different types of meds out there - you may be able to try. x