More tests and no answers yet

[Susan's mom]

Hello all, I just wanted to send out an update on Susan. We went to the hospital on Wed last week and had the hideascope done. they were watching her liver and Gall bladder, well I got the results and guess what??? it was negative! well we went back for another test today and it was the video scope. the nurse told me they are looking for Crohns. She has all the symptoms and all the tests are coming up negative that is why they are doing the video capsule. she did not like the test cause she could not eat. but she is able to eat now so she is happy. I hope we get some results soon I am going out of my mind. Today was the first time I heard one of the medical staff say the word Crohn's I was the one that looked up the symptoms Susan was having and that is what we came up with. I guess in the back of my mind I was hoping it was only me jumping to conclusions but today when the nurse said that was what the dr was looking for it scared me very much. I hope to get answers soon she goes back to the dr on Thursday so I will keep you updated and let you know what they say. I just want an answer so we can start to treat what ever is wrong with her.

Thank you again so much for all your support.:grumpy:

 

[Susan's mom]

Just a small addition Susan found out one thing that gives her flare ups, Any kind of tomato sauces and her favorite food is pizza and spaghetti. she has had to say good bye to those things. I feel so bad about that. I could not imagine not being able to have my favorite food.

 

[Keona]

Hi Susan's mom,
I cant really say much as I am also waiting for a diagnosis. Lot's of tests and uncertainty is very frustrating and scary!
I can relate to not being able to eat pizza and spaghetti The tomatoes wreak havoc inside. I think I have found something to replace it (smoothies) but it will never be quite the same. I hope you and Susan get answers soon. The people on here are awesome and don't even care if someone is grumpy No forgiveness needed!

 

[Crohn's 35]

Susan's mom, so sorry about all the tests your daughter is going through but this is not uncommon. Some here get a dx right away, some take months or years. Most colonoscopies with a biopsy taken (must be in the exact spot) show inflammation. A lot of Gi's can't get past the appendix area to see the Ileum area which is where a lot of us have Crohns. I know it is frustrating, hope you get answers soon and keep us updated.

As for tomatoe's they are very acidic, when I am flaring, I dont eat spaghetti or pizza and pizza is doughy too, that can get stuck, and there is cheese on it. I eat spaghetti in moderation or have bread to absorb the acidic. Your daughter will benefit from eating bland foods, and I know it is hard but better to be not in pain.

As Keona says smoothies are great and they help to get the nutrition in your system. Good luck to you and your daughter. Keep us updated, we know your frustration!

 

[Astra]

Hiya

Sorry this is still happening to you both, very frustrating to say the least!
Praying that you get answers soon and your daughter can be put on the appropriate meds.
I suffer something terrible with tomatoes too, especially canned plum tomatoes and any tomato based sauces. Maybe try the low residue diet for a week? to calm any D and give the bowel a little rest?
Hang on in there, you're doing great!
good luck
Joan xxx

 

[Hedgehog]

Hi Susan's Mom,
Just to add - anything acidic makes me worse too. I used to eat tomato sauce, brown sauce and mustard until it made me ill! But your palette does get used to a more bland diet.
And the capsule endoscopy is very detailed. It's showed my Crohn's after three years of other tests which showed nothing conclusive.
Hang on in there; you will turn a corner eventually.
Gail
xx

 

[Susan's mom]

I just want to say I love this site! I love the people here. Thank you all for your kind words and support. I turned in the camera box this morning so I will get results next week or maybe on Thursday. I will keep you posted