Lizzie

Hey Lizzie! Good news! My results are back and they said the polyp was benign and that I had mild Gastritis in the abdomen, Duedonumitis in the Duedonum, and some other "itis", I think they said ileoitis? Lol, sorry. They called on my cell phone while I was out so I wasn't able to write it down. Basically, I have a lot of inflamation (inflammation). From the Crohns, I guess? Still, not too bad. They said just keep taking the meds they prescribed and to stay away from Ibuprophen and to see them again towards the end of February.
I'd still like to see if there's a link to food allergies that could be making things worse. I heard there can be a connection with food allergies and Crohns.
All in all, the report is good and I thought I'd share it with you. Thanks for all your help and support. Take care & God bless.
April

[lizziecee]

What absolutely brilliant news April, that the polyp was benign. I am so pleased for you. Wish we could celebrate with a bottle of champagne as this is great news for you. The results showed various areas in your small intestines with inflammation, and this is indeed typical of Crohn's. The Crohn's inflammation "skips", unlike Ulcerative Colitis, which is confined to the large bowel and affects only the whole of the large colon not the small intestine.  This is why biopsies via endoscopy and colonoscopy are so important in the diagnosis. You did the right thing in having the scopes - at least now you know what you are dealing with. Gosh, I sound like your grandmother!! Sorry.

In fact Crohn's used to be called "regional ilietis", as Crohn's often starts around the terminal ileum, as mine did, and yours probably too. I did meet Dr. Burrill Crohn some 30 yrs ago, who first properly diagnosed this disease and gave it the current nomenclature - he was a neighbour of some business associates of ours in Connecticut. A charming and intelligent man.

Umh, I don't know about food allergies - I was tested for many and they were all negative. From my own experience with many gastros, and some world wide recognised ones when I was treated in London, Crohn's is not caused by either food allergies or food intolerances. It is an inherent genetic problem of unknow etiology. The over expression of the gene NOD2 has been recently identified as a factor in Crohn's.  It may be triggered by environmental factors - researchers still don't know why, and I certainly can't second guess them. My late twin brother, older sister and parents don't/didn't have Crohn's, so I don't know where I got it from as obviously we were all living in the same environment. My GP said I was handed a bad "hand of cards" when I was born. Tough, but liveable with.

However, certain foods, high in fibre, no matter what the nutritionalists say who advocate a diet high in fibre, can exacerbate the Crohn's symptoms.  This is not about allergies at all, just food intolerance, so don't listen to your friends who think they know better, because they don't. They don't have Crohn's or any conception as to what it is like to live with it. You just have to find out which foods you can eat and absorb without pain or diarrahea. I have stuck to a high protein diet, with little fibre or fat, and am doing well. I try and drink fresh orange or pomegranate juice each day, always have eggs, fish or cheese each day, with some chicken and a little red meat and vegetables, but I even cut out the stalks in spinach, which drives my husband mad as it takes me an hour to do a 250gram packet - I just watch something on t.v......

You have started the journey of accepting a Crohn's diagnosis and you are to be commended by taking such an interest in what can make your day to day life better and educate yourself about a disease that very few people know anything about.  

Ibuprofen and aspirin are a definite no-no, at any time, as they can cause the ulcers/abscesses to bleed profusely, as I found out when in Florida some 7 yrs ago. I thought I had flu, and my crazy nutritionist friend I was staying with, almost forced me to take 350 mg of aspirin 3 times in one day. I bled profusely from the anus, she took me to the ER and I was hospitalised for 5 days on IV steroids, blood transfusions etc in a high dependancy ward. Cost us some $15,000 and our travel insurance company refused to pay out. When I had a metatarsal fracture in my left foot last summer, the hospital nurse said she couldn't give me ibuprofen or aspirin pain killers as I had Crohn's and gave me a note to take to my GP for alternative pain killers - he prescribed codeine phosphate. I have no problems with this drug and indeed take one tablet a day, which reduces the pain in my lower abdomen.

I am not a doctor, nor a specialised IBD nurse, so all I can do is give you the benefit of my own experience of 38 yrs with Crohn's. You must absolutely accept that the disease is incurable (unless miracles happen) and that you need to be on some kind of immuno-suppressant drug for life. I wish the new meds had been around when I was first diagnosed and perhaps I would not now have the bone erosion that is causing pain and spontaneous fractures. The fact I am taking Arimidex to prevent a breast cancer recurrence, also does not help my bones, as it too thins the bones as steroids do. Luckily my bc surgeon has referred me to a Professor of Endocrinology to see whether I should continue taking Arimdex or not. My bc surgeon feels I need to take Arimidex because my cancer had spread to my lymph nodes.  I know I just must take the weekly chemo injection, methotrexate, to keep me in Crohn's remission. If I die of breast cancer, so be it, but I cannot live with the daily problems of Crohn's without mtx. I need some quality of life and mtx gives me this. I am probably being too optimistic in thinking that I will not get a recurrence of bc, but knowing my bad luck, may do. In the meantime, I am very positive,loving a retired life in one of the most beautiful places in England and hope get to be a crazy old lady that wears purple hats and red dresses!!

You have so much to live for - 3 beautiful young children that need you, so don't let this Crohn's diagnosis get you down. Just keep taking your meds and look on the positive side of life. We are alive!!

Again, thank you for keeping me up to date - it is good to hear from you and give you some support, even though you may not always wish to hear what I have to say. I say what I do with the very best of intentions in the hope that you can understand Crohn's and keep well.   Wish I had had some support 38 yrs ago. It has been a long, lonely journey for me with Crohn's, but now we have the internet it is great to learn by doing research as to what new drugs are available, and I hope I can help others who are newly diagnosed and struggling with their diagnosis.

I think you may have my e-mail address if you wish to keep in contact (perhaps other posters are a bit bored with our posts). I am always happy to help in any way I can, even if only to commiserate!

Take care,
Love, Liz.