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Newly diagnosed and confused

Diagnosed with Crohn's in September and very confused and frustrated. I've had symptoms for years now but ignored it. Recently I got really sick and it persisted so finally went to the doc. After tons of tests and a colonoscopy/endoscopy was diagnosed. At this point I dont know what to do or think. My GI prescribed me a med that he never called into the pharmacy. After 15 calls from myself and the pharmacist I still don't have any meds. I have miserable itchy skin, i'm losing my hair and cant stay hydrated for the life of me. I still have bloody bowel movements 6-10 times a day and I am very frustrated. I'm in the midst of switching doctors, found a woman who is director of clinical research, published in numerous medical journals and articles and was named best GI in america. Luckily she is not too far from me and my insurance covers me going to her. I haven't had my first appointment yet but am pretty excited about it. This sunday there is a patient education symposium that I'm going to attend so hopefully i learn a few things that can help with my situation. Any tips are welcomed. :sign0085:
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi and welcome to the forum! :D

Ya that GI isn't doing their job it seems and I'm glad you found someone who's hopefully really good and can get your disease under control. In the meantime what you can do is change your diet if you haven't already. Usually when I'm in a flare I follow the low residue diet or sometimes the BRAT (bananas, rice, applesauce, toast) diet. They're basically low fat, low sodium, low fiber, no nuts or seeds or skins, nothing raw etc. I'd also use the ER when needed (if the bleeding increases, you start vomiting a lot, have a high fever, or have lots of pain etc) until you can be seen by the new GI. Keep us posted! :D
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

You have already sorted what came to my mind first - get a new doc who is actually going to do their job properly and sort your medication out, can you remember what this was going to be at all? When you see the new one I would ask them to do a check on all of your vitamin levels as it is common with folks here to have deficiences in this area. Otherwise I agree with Crabby about the low res diet and if needed a trip to the hospital.

Please keep us updated on how you get on.

AB
xx
 

David

Co-Founder
Location
Naples, Florida
Greetings and welcome to the community. I'm so sorry you haven't been able to get the meds you need, that's absolutely terrible and hard to forgive :(

*hugs*

That's wonderful that you're getting in with a top GI though, good for you! Please keep us updated as to what the new GI says, how you're doing, and let us know if there's anything we can help you with.

All my best to you.
 
Hi All,

Thanks for all your support. I seen the new GI last week finally. Your not going to believe this!?! She got the reports from the GI that sucked and told me my disease is a bit more advanced then he told me. The med he prescribed for me initially that he didn't call in was Lialda. New doc said that's not going to do anything for me. She also said I have an obstruction because the report said during the colonoscopy it was so diseased and inflamed he couldn't even get through. He didn't even tell me that. Gheez. I'm getting a CT scan next week to find the obstruction and how bad it is. Once we see that she will figure out if I need surgery or just monitor it. Did lots of blood tests and am deficient in Vitamin D. Also she put me on an 8-week course of Entocort to help with the inflammation for now and I ended up being allergic to it. She is working on lots of lab work because she said I needs to be on Azathioprine and Remicade. She is an excellent doctor but I can't lie. I'm really scared. I've been dehydrated, sick to my stomache and vomiting lately. My thanksgiving dinner consisted of saltine crackers and pedialyte :-( Can anybody tell me anything about these meds, side effects, etc?
 
I can't help you with the medication issue, but I am so glad that you found a new doctor. She sounds very thorough. I am sure there are others here on the forum who can give you more information. Take good care of yourself.
 

afidz

Super Moderator
I am so glad that you found a great doctor! I don't know very much about those meds, I have only been on Humira. I know this is very scary for you, but don't let your mind race. take it one day at a time and cross bridges when they need to be crossed. Vomitting is a sign of an obstruction (which you already now you have) so keep in mind that the ER might be your best option. I hope that you start getting things resolved soon, keep us updated!
 
I loved remicade when I was on it. Its very easy to get, just one infusion every so offer. As for side effects, I personally had none but I know there are some out there but they're minimal. It was great, remicade took my symptoms away in less them 2 days after I received it.
 
Jg,
You might want to look up j-bug. She works closely with the Remicade® thread on here. Also, there is an azathioprine thread as well which might be able to help you out with your questions, at the very least, offer their experiences and support.
Hope all goes well. Muah- hugs-
 
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