• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

New member to forum, newly diagnosed and struggling

Hello. My name is Ashley. I am 27 years old. I am married and have a 20 month old little girl. I am a full time student in a paralegal program. I was just diagnosed with Crohn's disease in October. It took me 3 emergency room visits and a 5 day hospital stay before the doctors figured it out. My symptoms were not presenting like "typical" Crohn's and my kidneys were shutting down so everyone was stumped. I consider myself lucky on most accounts when it comes to this disease because I know I could be in a lot worse condition but at the same time in all honesty, I feel like crap! My lower back hurts so bad I can't stand up without having something or someone to hold onto and if I try to get up too fast I end up on the floor in tears. I can't even pick up my daughter. And needless to say it makes attending classes interesting.
I have quickly realized that most people don't understand this disease or what it does to your body. My primary care doctor just keeps throwing pills at me and then ignoring me. She was nice enough to refer me to a GI specialist but they are booked out until March and she refuses to get me an emergency so I have to wait until then to the see someone who can truly help.
Then there's the fun task of trying to manage the pain in order to function. I hate being treated as if I am a drug seeker. Before my flare up and being diagnosed I never took narcotics. The doctor would write me prescriptions for narcotics and I would never get them. But now when I need them I am treated like scum and only given enough to last me 15 days at most and told to make it last all month.
I realize that there are probably others on this forum that have it a lot worse than I do and it makes me feel absolutely horrible for even complaining. I guess I am just looking for people to talk to that understand how it feels to be in pain constantly and have no one around who understands their disease. I feel completely alone and terrified. I am still trying to learn about my disease, how to cope with it, how to get the pain under control and how to get the doctors to work with me instead of being treated as though I am lying about the pain. I am sorry that this turned into a rant. I have had a lot of emotions bottled up for a bit and needed a way to let them out. Thanks for taking the time to read this. It means a lot to have someone to talk to. Have a wonderful day!

Ashley
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum, Ashley!

Another forum member, afidz, is also in a paralegal program and having health problems as well. I'm sure she'll come along and say hello if she gets a chance. :)

Your situation sounds very frustrating. :( Could you have your doctor attempt to refer you to another (or several other) GI's in case another has a shorter wait time? I don't know if that's something they would agree to do, but it sounds as if it's worth a chance. A general practitioner is not at all qualified to treat Crohn's, and you definitely need treatment as soon as possible. May I ask what medications she has given you?

Never feel guilty for venting here. :hug: Some of us have it tougher right now than others, but that doesn't mean we're not all suffering. We're all here to help each other.

:hug: I hope things get better for you soon, Ashley!
 

dave13

Forum Monitor
Location
Maine
Welcome Ashley! This is THE place to rant and be honest with your feelings.You can't keep it in.You will find support here,as well as great information.I am newly diagnosed as well,11-13,and everyone in the forum has been patient and helpful.I also have to wait to meet my GI for the first time,not until mid February.I hope things go better for you and use the forum often! :ghug:
 
welcome Ashley rant away we've all done it, crohn's is a tough one been dealing with it sense 1969 myself. There are a lot of great supportive folks here and I hope you find it as helpful as I have.
 
Thank you so much for your replies everyone. It means a lot to me that you took the time to get to know me a little. :) To answer your question SarahBear, I plan on contacting my doctor's office tomorrow to discuss going to another GI office. I don't think I can take another two months of waiting. I am currently on Prednisone (this is my third round) and I am on Lialda 2.4 GM per day. The Lialda hasn't made a difference though other than it makes the room spin randomly throughout the day and it gives me chest pains that travel down my left arm (you'd think my primary care doctor would be concerned). I also have Dicyclomine for before meals but it doesn't seem to do much either. What I'm really worried about is how bad my symptoms and pain are going to get. I am tapering off my Prednisone right now and I already hurt so much I can't sleep, I feel sick constantly, and I can't hold my daughter.
 
Welcome Ashley!

I totally understand the whole being made to feel like a seeker thing :( I haven't been diagnosed yet, and if for some reason my doc is out of the office and I see another doc in the same clinic, I get made to feel like a seeker :(
 

dave13

Forum Monitor
Location
Maine
Wow Ashley!,to go through what crohn's puts you through and get treated like that...kinda ticks you off. I hope you find an ethical and knowledgeable Dr. soon!
 
Hi Ashley, sorry to hear your feeling so misrable. I've recently been diagnosed also, like you I was suffering big time. I found I was pretty miserable after colonoscopy and endoscopy but luckily GI consultant prescribed meds that have really helped. I have to wait until march though to have my follow up appointment just to see exactly what I'm dealing with.
I found Buscopan excellent for the relentless abdominal cramping. It was my saviour. antispasmadic. Check it out it just might be what you need. :) p.s. I changed doctor in the beginning couldn't deal with his incompetence, best thing i ever did. Best of luck and hope your symptoms ease soon
 
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