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Frustrated and ready to throw in the towel...

Wed, October 09, 2013 1:48 AM

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.
Last week 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. Now I am showing signs of severe dehydration and am frustrated with the medical field that does not seem to listen or care.

tracy3808
Joined Oct 9, 2013

Tue, December 17, 2013 7:31 PM

Reply posted for tracy3808.

Amen!!!

I hear you - and I understand! I feel like you captured my feelings very well! While I truly do love my GI, and he has been working with me for 7 years now, I often feel like I am constantly fighting an uphill battle... I've never, ever, ever, had a completely pain free day... And I'm okay with that, but when my pain spikes - I know something is up and getting the ER docs or even MY doc to believe me and follow through with testing is always difficult! I've had 2 resections (in '07 and '11) and an open adhesion removal (just 3 weeks ago) ... I've been on remicade infusions since 2009. I had to take 2 years off of work because my surgery in 2011 had so many complications and i had so much pain/fatigue... I hear you! Please feel free to email me at any time to chat further - if you do, I can give my cell # and we can chat/text... its so helpful to have support from someone who truly GETS IT! (Kristi.h.lang@gmail.com)

kristibeaner
Joined Dec 21, 2011

Tue, October 29, 2013 2:25 AM

Reply posted for kirihu.

Hi Kiri.

I would love to chat with you, but am not sure how to connect through this site (if possible).

My email is thacy3808@gmail.com if you are interested.

Thanks,
Tracy

tracy3808
Joined Oct 9, 2013

Sat, October 19, 2013 8:11 PM

Reply posted for tracy3808.

Tracy--I wish you all the best. I understand your frustrations and your suffering--I went through a surgery nine years ago. It was an ordeal, but it helped a great deal--although I've had my ups and downs since then, it has never been as bad as it was before the surgery. Please keep in touch--if you want to send me an email, my address is wkman350@gmail.com.

kman484
Joined Apr 15, 2013

Sat, October 19, 2013 7:05 PM

Reply posted for kirihu.

Thanks for taking the time to reply. Have been in hospital for 8 days facing possible surgery for blockage. Would like to get to know you after I start feeling better.Hope you are doing well.

tracy3808
Joined Oct 9, 2013

Sat, October 19, 2013 7:03 PM

Reply posted for kman484.

Thanks for taking the time to reply. I am not normally so negative, but had been quite sick. Although new to the area, I believe I have good specialists. Have been in hospital for 8 days facing possible surgery for blockage. Would like to get to know you after I start feeling better.

tracy3808
Joined Oct 9, 2013

Sun, October 13, 2013 3:34 PM

Reply posted for tracy3808.

It sounds to me as though a large part of your problem is the quality of the specialists you have been seeing.

The problem is that inflammatory bowel disease has no known cause or cure, so different doctors will often take different approaches to treating it. Also, GI docs, as is the case with any profession, vary in competence and smarts. I would therefore strongly suggest that you consider getting a second opinion from the most authoritative gastroenterologist you can find. The best way to look for one is to go to the Castle Connolly top doctors database, which ranks uses extensive polling of medical professionals to rank MDs. Here is the Web address: http://www.castleconnolly.com/doctors/ . Just type in your ZIP code and then, from the dropdown list of conditions, choose "Inflammatory Bowel Disease." You will then get a list of the top GI docs in your area. Your best bet would be to make an appointment with one of the docs on that list, have your records and colonoscopy film sent over, and see what he/she says. When you call, you should stress how dire your situation is so that they will not make you wait long for an apponitment. Good luck, and keep us posted on your progress. (The CCFA list of GI docs is of dubious value, since any doctor who pays them a fee can get listed, and there is no vetting for quality or reputation.)

kman484
Joined Apr 15, 2013

Sun, October 13, 2013 10:56 AM

Reply posted for tracy3808.

i know exactly what your going i am going through the same thing right now in cyprus everything you said i am also going through it, i am waiting on a ct scan on tuesday to say if i have a complication or not even tough last december the ct showed narrowing due to scar tissue on my ileum, the said if there is a complication they will operate if not i have to stay like it and wait another 3 months for approval for another drug to use, i have already worn out all drugs with no remission, mine has been active since diagnosis 1 1/2 years ago. i dont understand this madness as i am suffering and my docs dont care at all they just see my condition and not the person living with it and the fact that it is affecting all aspects of my life personally and professionally.

would love to chat and complain write me back if you wish would be nice to have someone who is going throught he same as me who understands it all

kiri 25years old

kirihu
Joined Oct 4, 2013

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