Frustrated and ready to throw in the towel...

[tracy3808]

I have Crohn's and I am frustrated...
I am frustrated at doctors who do not initially find the issue and say I am over-reacting
I am frustrated at being told I do not have a physical problem, rather an emotional problem
I am frustrated of doctors who do not listen
I am frustrated at having to wait months without meds
I am frustrated when those around me tell me I am not sick
I am frustrated that I have to defend my pain and fatigue to friends and family
I am frustrated at constantly being exhausted and in pain
I am frustrated that I cannot sleep
I am frustrated that my doctors do not seem to care

I was diagnosed with Crohn's in 1992 at the age of 12. It took a while for doctors to diagnose me and even longer to get control of my symptoms. Was a very difficult time in my life with trying to understand the disease, my family in crisis, abuse and so much more. Finally it went into remission and I have not had any major outbreaks (few mild to moderate episodes during stress times) until recently.

This past year has been off the charts stressful for me, so I was not surprised when I had a major episode. Was recently admitted to the hospital for 4 days due to excessive blood in stool. The doctor gave me Pentasa and also gave me a script for Anxiety and told me to follow up with specialists. Went to my primary and got the referrals..... the only problem is that they cannot see me for months. I have run out of both medications by the time I see the specialist I will have been off Pentasa for 6 weeks and the anxiety meds for over 12 weeks.

Recently I went to ER with the tell-tale signs of moderate dehydration, but was told that I was over reacting and making symptoms up for attention. Less than a week later I was showing signs of severe dehydration. Went to ER and was admitted for 2 weeks because of a narrowing that might require surgery. Now I am frustrated with the medical field that does not seem to listen or care.

 

[Jennifer]

I'm sorry you're going through all this tracy3808. :hug:

Are you able to have either of those prescriptions filled by your regular doctor until you can see the specialist? I know my regular GP prescribes anxiety meds but I don't know if they would prescribe Pentasa, worth a try though since you already have a diagnosis.

The ER is always hit or miss. I've had awesome and terrible doctors in the ER but when its needed, you gotta do what you gotta do. If there's another hospital in the area then you cold try switching between hospitals. I don't like having to do it myself but its one of the few ways that we can take our health into our own hands rather than being told its not a big deal and to just go home.

Also can you contact the specialist and let them know that your symptoms are severe? They may try to get you in sooner and if not then you can ask to be put on the cancellation list in case someone cancels.

We're all here for you. Keep us posted. :ghug:

 

[Nims22]

I'm sorry to hear that Tracy. I share the same frustrations. And then on top of that my insurance wants to constantly deny everything I am prescribed.

You really need to get into a specialist to get those prescriptions. Call every specialist in your area and keep asking if they have cancellations and can stick you in somewhere and keep telling them how bad you have been. I know when you are sick and exhausted it is hard to do, but you need to be taking something to help.

It may be worth it to see a nutritionist or dietician... Or even a holistic doctor to get some kind of direction towards relief until you get into the specialist. I take medication but I also eat very strict and healthy and take supplements. I think the two things together are better than nothing.

Good luck!!!

 

[machelle]

I am so sorry that they are treating you so horribly! I know how frustrating it is to be made to feel that "it's all in your mind" You know your body and when something is wrong so take back your power. I make it a point to select a good pharmacy. Not WalMart, cvs etc. Not that they aren't good, it is just that they do such a high volume that you are just a number. I go in and introduce myself to the pharmacy staff. Your pharmacist can call and get refills much easier than you can. Explain your circumstances to pharmacist, especially the anxiety meds. Some of those you can't go off of without withdrawal symptoms. See if that works. If not, call your insurance helpline and see if they can put pressure on doctor. Good luck! Sending you a hug! Hang in there and know that you are not alone. We all are here for you and love you!

 

[tracy3808]

Thanks for the responses and advice. I finally got into the specialist (new to the area, so first visit took a while) and things are going better..... ER doctors are still annoying, but with a specialist the trips to the ER are much fewer.

I am glad I found this site and there are people who understand the frustrations of this disease.