Fighting the fear of new diagnosis

Hello,

By the title of my post, I'm new to this and scared as hell. I've been reading a lot of the posts on this forum and it's gotten me so scared and confused. My husband is currently going through the process of testing for Crohn's Disease. I'm not sure of all the medical terms, so please forgive me if I get some terminology wrong regarding these procedures.

For many years now, my husband has suffered with diarrhea, cramping, etc. and it was first brushed aside as a case of nerves all these years. In early September this year, Scott became seriously ill with a high fever, vomiting and severe diarrhea. He was hospitalized twice because he became so weak that he couldn't even walk to the bathroom. IV's, on both occasions were administered, as he was badly dehydrated. ER doctors could not figure out what the problem was and discharged him both times. We finally took him to our GP, which was weeks after the ER visits, as he was still experiencing severe diarrhea. Our GP being diligent to find out what the causes of these symptoms were, ordered a series of blood tests, stool samples, etc. She also referred him to a Gastrointestinal Specialist and a colonoscopy procedure was ordered. After the procedure, he asked my husband if there was any history of Crohn's disease in his family. None existed. We are currently waiting for appointments for a CT Scan, Stress Test and Hematology Specialist. Is this all routine tests for Crohn's and what else can we expect?

I've also read that steroids are used, like Prednisone and Imuran in treatment plans. Are they used in all cases, as I'm familiar with these drugs? I've also further read that not one diet is the same for each person afflicted with this disease. How do I know which foods he can eat and which ones he can't. I'm not even sure if I do provide him with a more balanced diet, that it is doing him more harm than good because I don't know if they are the right foods for him. Please help me understand all of this.:sign0085:

Hello and welcome!

I was recently diagnosed and so it's all fairly new to me as well, but yeah, my doctor had me go through a barrage of tests to eliminate every possible cause of the symptoms and in the end, I was left with Crohn's. But as soon as we figured it out he started me on Budesonide and within days I was feeling so much better. The pain was mild and much more manageable and I was running to the bathroom less. This medicine is only a temporary fix as I'm waiting for more tests to be completed before starting remicade or Humira.

As far as what foods to eat, I'm in the same boat. Before the meds even drinking water or broth was painful and I lost a bunch of weight. The Budesonide calmed down the inflammation and I can eat solid food again. What I'm working on now is starting a food diary. Log what he eats and how he feels afterward. It's really a trial and error process because like you said, everyone is different! So far I know I can't have coffee and pasta. The two loves of my life!

Hope the tests are completed soon and you get an official diagnosis. I think once you have that information you can do more research and gather more info to help!

Thank you Niminity, I appreciate all the advise and I will most definitely keep a diary of the foods he eats, that's a great idea.

Hi Kbug6205. Welcome to the forum. It is scary to read about all the things that happens with Crohn's, but keep in mind that it does not apply to everyone. Some people have minimum problems with foods, while others have issues with a lot of food. It is a great idea to keep a diary, you will know what triggers pain or gas etc etc. Same with meds, not all work for all, usually prednisone is used to help speed remission or to help until the other medicines kick in. but it dos not mean they have to be used for long time. Just my opinion. Sending you hugs and support.

Thank you. Oh, I'm so please with all the information. I felt almost in panic mode when I first started researching Crohn's. As Scott's testing continues, I will update my posts as often as possible and learn more. Thank you for the hugs and support.

Hi there, and welcome,
All kinds of tests are normal as Crohns is difficult to diagnose. I had pain and Dia..for years, diagnosed as Diverticulitis years ago, but now Crohns. Steroids such as Budesonide are given to reduce the inflammation. The latter is what causes the pain.. I did not respond well to meds, so I am now on 8 weekly Infliximab infusions. I am currently doing well.
Do not worry. It does take time to find the right meds for you. I hope your husband gets some relief soon. Food does not cause the pain of Crohns, but watching food that irritate it is a good idea. For me, that means avoiding rich, creamy or cheesy sauces , and nuts.
I hope this helps. Feel free to ask me anymore questions.
:welcome::getwell:

Just giving some support :hug: It can be scary to read about all the symptoms and complications, but as someone above said- not every symptom happens to every person. I know it's hard to wait, but try to not become panicked or overwhelmed before you even know the test results :ghug: We are all here for you!

I am overwhelmed by all the response that I've received with my concerns. I want to thank you all for all your support and advise, I'm looking forward to better understanding this and with your guidance my husband's journey through this process will be much easier.