Hi everyone!

[Angrybird]

I have been diagnosed with crohns disease for nine and a half years since shortly before my seventeenth birthday and I thought it was about time that I joined a forum and spoke to people who have gone through the same or similar issues as I have. Over the years I have been put on a range of different medications: Prednisolone, this I have been on a few times, the last of which it took me two years to come off it and made me gain a lot of weight. Budesonide, this gave me long purple stratch marks over my arms and legs so had to be stopped. Pentesa, this was eventually found to be ineffective. Azathioprine, this I had to be on a 200mg dose and this eventually caused my white cell count to drop too low so this had to be stopped. I was then put in Infliximab infusions that worked for a while but then put me in hospital with a reaction that made it look like I had arthritis and markers for Lupus. Therefore for a while I was under the care of both the Gastroenterology and Rheumatology teams at the hospital.
It was the Rheumatology team that put me on Hydroxychoriquine to help with the joint pain and then when I again started to having problems with my tummy they put me on Methotrexate. I also had to go on folic acid tablets because of this. I also have a Vitamin B12 deficiency so have to have 3 monthly jabs for this. Despite always adhering to a mostly lowflex diet I started to have all the usual symptoms nearly a year ago, colonoscopy and MRI confirmed that I had a 4cm stricture, I therefore had an ileocecal resection on the 16th September. I did have to go on Modulen leading up to op due to the symptoms I was having from eating food. I had already stopped the Methotrexate due to wanting to start a family next year and I was told this was also a good thing as it does hinder healing. I had also stopped the
Hydroxychlorequine as part of my goal to be medication free. For a few weeks after the op apart from the tiredness and soreness I felt great and was able to eat like a 'normal' person. A little over 2 weeks ago the symptoms started up again and for the last few days I am back to rushing to loo up to 10 tmes and having tenderness of the tummy. I have seen by doctor and I am booked for my seventh colonoscopy to see if the problem is from the op and things are still settling down or if the crohns is already acting up again. Bloods have shown that my CRP is raised.... Diet has been mentioned but the dietician can't see why food I was fine with before is now causing an issue. I am happy to go back on a lowflex diet to keep things under some semblence of control until the colonoscopy but I am desperate for some advice on what I can eat that isn't flaming rice cakes and soya. I am not good at thinking of what kind of meal to put together so any suggestions would be appreciated. I do apologise for the long posting but I wasn't sure how much info to put down.

Thanks for reading
Angrybird (my favourite ipad game)

 

[goldenholds]

Hi Angrybird, welcome from a fellow Newbie. Well I guess your new to this forum, not the Crohn's. I'm new to both myself.

Sorry I don't have much to add about diets, I'm still trying to figure it out myself. When things were really bad last month I was down to Rice Krispies(with lactose free milk), chicken breast, fish, white rice, white bread, peeled apples, and a few well cooked vegetables. But generally I just stay away from the obvious things that most people list as common trouble foods, such as greasy foods, spices, whole grains, overly processed foods, and I also seem to have some problem with dairy. Hopefully as time goes by I will figure things out better.

Best of luck!!!

 

[KWalker]

Welcome. You'll find tons of info on here so never hesitate to ask questions. As far as the diet, it really is hard to say what is good and what you should stay away from as you will see if you browse the Nutrition section, what may be good for me could severly affect someone else and vice versa. No doctor could ever tell you what you can and can't eat, with exception to the few small things most of us can't have. The only way to really know is basically just to eat and see what happens. You can view the thread I mentioned for some guidelines but like I said, personally I can eat absolutely whatever I want without problems where as some people are on a very strict diet.

 

[Angrybird]

Hi, I have also found that too much dairy is a problem. I have always been told as well with things like potatoes that you should not eat the skins in the case of new/jacket potatoes and the hotter the better as they are then less fibrious. Not sure if you would have been told this..

Angrybird

 

[Angrybird]

Thanks KWalker, I know what you mean, I find it hilarious when health professionals go on about having your 'five a day'. If I did that I would be in a world of trouble.

 

[KWalker]

Exactly. We have to find our nutrients in other places. I don't drink white milk because before I got diagnosed with crohns the doctors actually told my mom I was lactose intollerant. What a joke that was. I do love giant bowls of ice cream, and massive glasses of chocolate milk without problems. I'm good with cheese too, although I'm not a huge fan of the taste.

I don't seem to have problems with potatoes though, or any food for that matter. My only problem is that even with eating the equivalent to a few horses a day (LOL), I can't gain weight if my life depended on it.

The only real food/beverage I seem to get stomach aches with are Monster Energy drinks but they're so delicious so I make due and drink them anyways. I just get a weird feeling in my stomach after drinking them but it doesnt seem to last long.

 

[Angrybird]

I could begin to dislike you (lol) to be able to eat nearly anything and not have an issue or gain weight - bliss! Out of interest are you on any medications? I am not and think this might be part of my current problems - I have never been able to go long medication free before the tum starts to grumble.

 

[xJillx]

Hi Angrybird and welcome! I am so sorry to hear it has been such a struggle to find a successful treatment plan. I understand you want to be med free, but it doesn't sound like it's the right time. Do your doctors have any suggestion as to what to try next?

When I am ill, my go to meal is rice with canned chicken and cream of chicken or mushroom soup (no water added). It's easy to make and easy on the guts. I actually really enjoy it. So much so that I eat it when I am feeling a little better, too!

 

[KWalker]

Angrybird.. Sorry! lol I don't intentionally try to brag about being able to eat anything but I'm pretty proud of myself and I was trying to give you an idea of how everyone is different.

I have been medication free for just about a year now. I've definately had my share of nightmares though, and have done some HIGH doses of some pretty dangerous meds, for long periods of time. I have not had surgery however, except for my abscess.

 

[Angrybird]

Hi xJillx, before the operation I made it clear about starting a family next year and the doctors have mentioned Adalimumab aka Humira which they said I could have children with. I too am beginning to think I will have to go back on meds, I refuse to go back on steroids though - I would rather live with the symptoms. These past few months I have lost about 14kgs and I do not want to regain this.

 

[Angrybird]

KWalker - well done you! to not be on meds must feel brilliant, I to was on a high does of a nasty med - Methotrexate, I had to have monthly blood tests to make sure it hadn't wiped out my bone marrow! They also give it in low dosage tablets to make sure you don't accidentally overdose - they give this stuff to cancer patients. I had to get off it as it hangs around in the body for 6-12 months and if I fall pregnant in that time I run the risk of having a child with brain damage or spinal deformaties. Even though I have now had to have an op I feel I have done well to get to 9years before needing one.

 

[David]

Greetings and welcome I don't have too much to add but wanted to welcome you and mention that I've been enjoying your posts around the community.

All my best to you!