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Hi all,

Just feeling pretty stressed right now.  Sick of being sick and never getting any where with doctors...  It takes so long to get into see a doc and then I only have a little time time to talk.  The next appt. is months away...

I have a few other health problems besides Crohn's.  Trying to deal with this stuff sometimes feels like it's going to push me over the edge.

 Reply posted for MzzKimba2002.

mzzkimba.........you're story sounds very very familiar.....just like mine....and yes I am frustrated as h---..........and want to go back to how it was when I was younger....

 Reply posted for katya.

Thanks so much!  Great suggestions!

 Reply posted for Zinnia.

One of the best gifts that IBD has given me <yes, it has also taken away, I am not just sunshine> is learning how to be my own best advocate.   Start a health journal, make notes for want you want to discuss with your providers... start working on it at least a couple of weeks before the appointment.  Then you will have an idea of questions, experiences, ideas, symptoms, or topics that you want to discuss.  review it, see if you can work through some of these through talking with family, friends, counselors, blogs, forums, the cat & dog.....  and then make a copy of your final reasonable list for your doctor; make sure that when they schedule the appointment they know you have questions and a need to discuss< so they can schedule enough time>  and make sure at the beginning of the appointment you give the list to the Dr and ask to make sure to review with you during the appt.  They may not get to everything, but this is how you build.  And if they only want to poke, prod, and shoo you out the door, start looking for new Physicians. A good MD can learn from us just as we take suggestions and prescriptions from them.  ALSO, when my disease and symptoms are not getting better, sometimes reflexology, counseling help me emotionally deal.

 Reply posted for MzzKimba2002.

Hi MzzKimba2002,

The stuff you're going through sounds really tough.  Not knowing what is going on really is frusterating! 

I have made progress with my treatment by learning a ton about Crohn's and then analyzing what is going on with my treatment or diagnosis when something doesn't seem right.  Things are still very far from perfect.  But talking to other people with IBD or other digestive problems helps a lot.

I hope things start to improve for you, and you are feeling better.

Take care,

Zinnia

 Reply posted for cclovell.

Hi cclovell,

I know exactly what you mean!  It does feel like a bad dream!  With always not feeling well, those doctors, those drugs.  Those drug companies...  I just started humira recently... and personally feel like I have had my fill of drug companies for a life time.  The level of greed involved in those drug organizations is so immoral.

I'm sorry you are dealing with these types of problems, too.

Take care,

Zinnia

 Reply posted for Zinnia.

I am also frustrated as well. I have been on the merry go around of Ulcerative Colitis and Ulcerative Proctitis since 2003. ONLY meds i was ever put on was Canasa. That was basically for the Ulcerative Proctitis. NOTHING was ever given to me for my UC. Never could understand why.

In my case i only had blood and mucas at the beginning of my problems. I mostly was constipated. Just the opposite of most people with UC.

It is now 2010 and i am STILL flustered. Recently i was also diagnosed with Crohns. I am still not too sure on that diagnose. I feel like i am fighting all this alone. I can never get any direct information as to what i'm dealing with. Whether it be meds,symptoms, anything.

Since being diagnosed with Crohns i have been put on Lialda. At first i was to take 1 pill, 2x's a day. At one of my Dr's visits i told him i still have a lot of discomfort in my stomach just after eating. He then told me to double up on the meds. Now i take 2 pills 2x's a day. I've seen NO difference. ALL food makes me sick.

I like many other sufferers, i have a lot of joint and muscle pain. I do get depressed because i am so tired of having to deal with all of this. I think MOST of our frustrations stems from the "not knowing" what is going on with us.

I tell everyone "food is NOT my friend". It doesn't matter what i eat..everything bothers me. I could eat something today and have no reaction. Eat the same thing next week and BAM!!! Sick feeling.

I have never been told to eat certain foods. Never been told to stay away from certain foods. I know which foods bother me more than others.

I wish i could go back to the way i use to be. Eat what i want, enjoy food. Enjoy life!

By the way, now i am to have a CT scan of my abdomen and pelvic. I've already had a lower ultrasound done which came out ok.

Thanks for letting me vent....

 Reply posted for Lizzies Mom.

I know this is an old post but the feeling is very timely. I am frustrated too! I am tired of being sick. I feel like I am in a bad dream from which I will wake any minute, have a beer, a big juicy hamburger and get on with my life. I have heard more advice than I know what to do with. I am tired of arrogant doctors who serve no purpose other than be a slave to the pharmaceutical companies. ARGHH! How did I get here?

 Reply posted for alivein315.

Thanks so much alivein315.  I really appreciate your message and definitely agree with what you're saying. : )

 Reply posted for Zinnia.

when it comes to me and doctors, i'm a *** !  i tell them straight up what im going through and if they don;t seem to care or if i can't get an appointment with them when im very sick, i'm done.  i find another dr.  if i butt heads with my dr., i'm done with you too.  having a good doctor is the difference between a good quality of life and a bad one.  don't waste your time and $$$ on a dr. that can't even see you to help you.  

 Reply posted for hesaves.

Hi hesaves,

Thanks so much for your message. I totally relate to what you're saying.  Especially about the doctor having an attitude problem when you ask questions and stuff.  I have seen way too many doctors with an attitude issue.  Just last week I was in to see this doctor and she was so rude and insensitive.  I seriously was almost crying right there in the office because she made me feel so bad.  She was telling me how my health issues are all caused by stress, etc. I am really struggling with my health problems right now and for her to be so unhelpful and thoughtless was way too much.  It made me so mad afterwords when I got home!

Anyways, the right doctor is key! Definitely.  It's just hard to find that right doctor sometimes.  Honestly after this week, I want to give up on ever going to the doctor again!  I don't know...

You said you are able to get in to see your GI within a week?  That is truely amazing.  I always have to wait weeks, even months to get in with almost any of the doctors I have been to.

Thanks for listening and thanks for the advice.

Take care,

Zinnia

 Reply posted for Zinnia.

Yes, I can totally relate to your frustrations. I had a GI doc for 8 years that was the same way. Far drive, too far ahead appts., & his listening skills were horrible. If I complained about the way I was feeling, he would put me on some new med and say call me in two weeks if it doesn't work. He would have an attitude if I asked questions as if I was taking up his time or something??Well I pretty much got fed up with him. My obgyn referred me to a GI doc that he knew and omg I cannot believe the difference. He will sit and listen to my concerns. I can get in for appts within a week. He is also very positive and is very, very involved with keeping me in remission. I think that you will need to ask around or make appts to sit down and talk with docs to see how they will approach you medical concerns.

Good luck to you. :-)

 Reply posted for Lizzies Mom.

Hi Lizzie's Mom,

Thanks so much for the input.  It can be so lonely dealing with these diseases and hearing from other people helps alot.

I acctually really like my gastroenterologist.  He is too far away and I wait too long for an appointment, but I have had some really bad experiences with some specialists and think that this doc really hears me.

The hardest thing is feeling like there is more that could be done to get well.  As I mentioned before, I have a few other health issues.  My primary care doctor essentially just refers me to specialists and the specialists only treat one part of my body.  They don't really communicate with each other and the over all picture of a health plan or figuring out the underlying issue is never investigated. That is what is really frusterating.

Again, thanks so much for your reply.  I really appreciate it.

 Reply posted for Zinnia.

I think everybody at one time or another feels frustrated.  It's okay, you are not alone in this, unfortunately there are many of us just like you.   You mentioned your next docs appt isn't for months and that you feel you don't have enough time with him/her.   Have you mentioned that to your doctor?   If not, I think you should.  We have been very, very blessed with our pedi gi and her staff.  They always give enough time for questions, concerns or just to help me brainstorm.   If you aren't comfortable w/the doc, it may be time to search for another.   After all, the cure hasn't been unveiled yet so we'll have to keep going for a bit longer.  You did the right thing by joining this site, there are lots of nice people who are always willing to lend a kind ear.  

Be well,

Lizzies Mom