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My husband is 32 years old and last week was put in the hospital for a week. To start at the beginning about a year ago he was having problems with his stomach whenever he ate. He would have pain and be in the bathroom all night. His doctor did a colonoscopy and ran some kind of test on his gallbladder. They decided it was his gallbladder and removed it. After that the problem wasnt as severe but it was still there. I kept telling him to go to the doc but he said it was no big deal. A week ago he was in such severe pain we ended up in the emergency room and he was admitted to the hospital. The did another colonoscopy and took some biopsies. It came back as Crohnes disease. He was on serious antibiotics and steroids and blood thinner in the hospital because he had developed an lesion on his small intestine. Right now he is on an antibiotic and steroid at home. Our follow up appt is on Tuesday and I am so confused. They did not give us much information and I dont really know what to ask. I know he will have to go on a lot of meds, some kind of iv drip every three months, and may have to have surgery in the future. Does anyone have any advice on questions to ask our doctor?

Right now our life feels like it was turned upside down and I dont have any clue on how to get a grip on it. Any help will be appreciated. Thank you so much.

 Reply posted for caraand.

i no how you feel my doc told me i have crohss about a week ago he just gave me this site to go to and to make matters worse he didnt give enough predisone yeah like 156 short will not call back cant get no help as to him moving to a new office o yeah didnt give a number to be reached until the 9th im so worried out mind ill run out as to i have read you just cant stop the med thinking about getting new gi  my family doc got so mad he even called same thing no call back the drug store that filled it is worried to they have flaged it i pray i hear from him soon cause we have started out on the wroung foot but was told to stay calm the stress not good but its hard when you are new to something and you have a gi that dont care going to look at getting someone new hope i dont have to go through the test again but good luuk and write down everything thats goes on and take to the doc thats what ive been doing the last couple of day please pray it gets right for me

 Reply posted for caraand.

Dear confused

I wouldn't necessarily go with the Crohn's diagnosis.  Our daughter had her appendix out and had a hard recovery from it.  For a year and a half after her surgery she had so pain and constipation..We kept asking if it could be from her surgery and they kept saying no.  they diagnosed her with Crohn's disease even though the blood test came back negative and put her on tons of meds.  She never felt better even on the meds and her pain kept getting worse. 

We went to many emergency room, specialists, and pain management doctors and they kept telling her her pain was in her head.  Finally she was in so much pain she couldn't walk without pain and hurt to eat.  We took her to our home town doctor and she put her on a strong anibiotic and took out her gallbladder.  For the last 6 months she has been pain free after a year and a half of constant pain.. the surgeon said her gallbladder had adhesions which could only be from another surgery which was shocker her appendix all along even though the doctors said couldn't be.  so you might not really have Crohn's the adhesions can cause that much pain. 

 Reply posted for caraand.

My daughter is newly diagnosed Crohn's and I know how confusing it can be. I will share something that has helped me. 
Buy yourself a folder and a notebook/journal. Record every call about your husband's care, appointments, or questions you think of. Make sure you note the date, time, person's name, etc.
Make a page for each dr. visit and take notes. Write a brief synopsis to remind you of what happened and the next steps.
Being organized like this will help you keep things in order and free up your brain!
I also created a timeline of my daughter's first health problems, hospital stays, ER visits, etc. in a concice chronological list. As you go forward you will see different docs, etc. and they all will want you to give them a medical history for your husband.
Obtain copies of your husbands medical records for every hospital stay, ER visit, etc. and keep them with you in the folder. They will come in handy.

A couple of things I would ask are:

• after hours care and support --- flare ups and problems rarely happen during office hours. can you reach him or does he pass his after hours care to another doctor or practice.
  
• communication and acccess.  --- do they offer a nurse that you can call when you have concerns and/or questions. that is vital to have a link or a resource to call and be your liason to the doctor.
• nutrition -- does he offer a nutritionist to work with your husband and you in helping educate and tailor a diet that will work in helping his condition
• hospital privileges --- if he does surgical procedures, etc. what hospital is he/she affiliated with. make sure it is a hospital that you are happy with and works with your insurance

I wish you all the best. I hope your visit goes well. If you don't feel you received answers or have a rapport with this doctor, find another. It is an important relationship.