Crohns Advice

[Beccamon]

Hi guys

Some advice please!

I was eventually diagnosed with CD in July/August 2011 after suffering for 5 years. I had to pay for Private treatment in order to be taken seriously. Since then I have had various scans, a colonoscopy, consultations and prescribed Aza and Prednisolone.

I have taken on a low residue diet, eating plain chicken, fish, white potatoes, rice, jelly and leaving out wholegrain, seeds, high fibre, basically eliminating all roughage from my diet to help get through this flare up. However this diet has now caused extreme constipation and I am only going to the loo once a week, if that and I have days where I can't walk I'm in so much pain and cannot touch my lower abdomen where the Crohns is as it is so tender. My consultant has said if the Prednisolone doesn't work he will put me forward for another CT scan and most probably looking at surgery - I really don't want to end up going down this path :'(

I feel sick as a dog most days and am beginning to feel defeated, as though the Crohns has now got one over me and I can't seem to be able to control it.

Can anyone advise how long this usually goes on for? How long do I have to eat such starchy bland food before I can get back on track and lead a "normal" life?

I'm at work at the mo but I just can't concentrate. I just want to go and lie down with a hot water bottle and fall asleep, in hope that when I wake up the sickness will have subsided.

Any advice is geratly appreciated
Becs x

 

[Grumbletum]

Hi Becs
Sorry to hear you are feeling so bad :-( There's a big dent in my sofa where I spent a good few months with my hot water bottle. Can I ask you a couple of questions?
How long have you been on the Azathioprine? It can take anything up to 3 months to kick in so you would probably not feel the benefits til then. Also, has your GI discussed the biologics with you at all: Infliximab ( Remidade ) and Humira ( Abu...damn, I can never remember how to spell it!!)
I was on Prednisolone for 6 months and have been on Aza for about 4 now, but they didn't seem to be dealing with the inflammation. I went for a pre-op assessment and the surgeon advised me to try Infliximab before going down that road. I am so much better now - heading off for my third infusion later today.
Regarding the low residue diet, I tried that at first but it didn't seem to help with symptoms and I discovered later that this was probably because sugars, gluten, yeast amongst others were my worst triggers. It might be worth trying an elimination diet, where you cut what you eat right back and introduce foods slowly to try to identify what aggravates your symptoms.
It's hard to say how long symptoms will last. We all respond differently to the different treatments etc. But you have your diagnosis and it sounds like your docs have a treatment plan in place which is good.

 

[Beccamon]

Hiya - thanks for replying to me.

I am in my second month of Aza so potentially another month until I feel the benefits and have only been given a short course of Prednisolone to see how I react to them.

My consultant did mention "Infusion" but didn't really go into much detail about it. I guess he will discuss it when I next see him after the Prednisolone course runs out. What does that entail? If I can miss out on surgery I'm up for it.

I'm so confused about diet. If I was to take on an elimination diet, what foods should I begin to take in the first instance? I have been eating soup or can of tuna for my lunch, and then a piece of chicken or fish with either rice or potato for dinner. For breakfast I munch on dry rice krispies. I'm losing weight because of such a minimialistic diet, which I don't particularly want to happen.

Should I stay away from caffiene? And should I eliminate alcohol completely during the flare?

x

 

[Grumbletum]

Hi Becs
Infusion is the Infliximab. It's delivered by an IV drip. Takes about 2 hours to administer the Infliximab and, for the the first three times, they keep you there after for 2 hours to monitor your blood pressure etc. and make sure you are not having a reaction. After the first dose, you get a 2nd two weeks later, then a third 4 weeks later. After that, the doses will be every 4 or 8 weeks.
I didn't feel a lot different after the first dose, but after the second, I'm like a whole new woman! Better than I have done since this all flared up.
The elimination diet is tough going, but worth it. You'd have to pare your diet back to having something like a clear chicken broth for a couple of days, then add a new foods one at a time, for a few days to see if you have a reaction to them.
Might be worth cutting out the caffeine and alcohol for a bit just to see if it makes a difference. Caffeine is a big no no for me, but others are OK with it. I'm fine with red wine tho It just takes a while identify what your own triggers are. Unfortunately, there is no one 'Crohn's Diet'.
If you pop over to the Diet and Fitness sub-forum, there's good info and advice on there. Hang in there xx

 

[xJillx]

Hi Becs and welcome! Diet is very tricky. It varies from person to person. I agree with Helen on trying an elimination. Keeping a food diary will help with the process. Record what you eat and any symptoms afterward. You should be able to see what foods are safe and what you need to avoid. Things I would avoid or try last would be things that are general not good for those with Crohn's: raw fruits & veggies, nuts, popcorn, corn, caffine, high fiber foods, & seeds.

Good luck!

 

[Del]

Hi Becky..
When it comes to food...its different horses for different courses I'm afraid.
No one size seems to fit.
I was on Pred and Asacolon for a while and I had constipation for about 5 days before i shifted it with some prune juice above all things.....and then my system seem to get back to normal...well as normal as it can get with CD..
Take care and good luck..