New to forums, looking for some help.

[Bakabilly]

So for the last 15 years or so I have what could be considered Crohn's. Or maybe not?

I've seen 3 gi's here in town and after lots of money and trial and error my last GI diagnosed me with Crohn's. Lots of meds were tried but nothing worked (predict, reglan, belladonna, etc.) I was finally put on oxycodone which seemed to work wonders. Then was cut cold turkey. To keep active I started getting meds off the st. Which led to real problems. (Legal, addiction..)

So one ER visit a doc recommends remicade. I'm all for trying anything. But after a scope he tells me (angrily I might add) that I don't have Crohn's and implies that I'm lying about it and denies the remicade treatment.

I've been to the ER so many times and have always been honest with my opiate usage. Which has led to being on a "no narc list". Now when I go in they treat me as an addict. Offer to send me to detox and tell me my "flare" seems to be more withdrawals than Crohn's. Even if I've been off opiates for weeks/months, they don't believe me and usually discharge me in the same state I came in. Which usually leads me to "other" routes of help. Which don't really help in the long run.

Is there something they can do in the ER besides blood tests and CTs to actually see that something is wrong? I'm at my wits end. My GI won't see me anymore due to lack of payment. This disease has ruined me. I've lost my job, had to quit school and my QOL has dropped to nill. It's had such an effect that I'm at rock bottom. Homeless, jobless, friends and family members have all but given up on me. No ins doesn't help either.

Just not sure what to do or where to turn next. The cheap docs I see don't know much or what to do either. But maybe if I had a suggestion perhaps it would help.

Sorry for the long whine and cheese post. I'm just losing hope and I'm hoping some May have some ideas.

I've gone so far as to check into a methadone clinic for addicts. Lied to them about my drug use to get methadone. That worked great for a few years until they realized I was there for pain treatment and not addiction. I don't recommend anyone take that route or even try methadone as I've found it is quite possibly the worst opiate to stop. And I've tried many.

The hardest thing is seeing new doctors. I'm torn between being honest or not. On one hand I want to be as honest and upfront with any doctor I see. On the other when I am honest most doctors label me as an addict and write me off. I've had my share of dependency issues in the past as well as full blown addiction. But the docs don't see it both ways it seems. I've either got a health problem or a addiction problem. Never both.

Well I'm just going on and on. I'd really like to find something that I can suggest when I go to the ER that might help them see more clearly what my last GI saw. CTs, ultrasounds and scopes seem to be blind to my problem and just reinforces the idea they have that I'm just there to get "loaded".

Lots of pain, lots of soft BMs.

Steroids never help. Pain meds seem to be the biggest help with less side effects.

Medical MJ helped some in the beginning but not for extreme flares and sometimes seem to make it worse.

 

[afidz]

Hello
Do you mind telling me where you live? Knowing that might change my advice a little bit.
It is a shame that you are labeled as an addict. Crohn's is incredibly painful and hard to manage with out trying to find some type of pain relief (opiate or not).
Have you thought about trying to get on disability or get publi assistance or something? (not knowing where you live)
(depending on where you live) You may be able to find a free or close to free clinic or a doctor that is willing to help you figure things out. I have heard great things about the Cleveland Clinic (if you can get there).

 

[Jennifer]

Hi Bakabilly and welcome to the forum!

I'm sorry about everything you've been going through. Try contacting your local Social Security office to apply for disability (SSI and/or SSDI) and your local Social Services office to see what programs are available to you (Food Stamp, Cash Aid etc). If you do qualify for disability then you'll automatically qualify for Medicaid (free government run health care), yet very low income individuals also qualify for Medicaid so be sure to apply if you haven't already. https://www.healthcare.gov/do-i-qualify-for-medicaid/#howmed

Other tests you could try are an MRI, MRE (Magnetic Resonance Enterography), Pill cam and a Double-balloon enteroscopy (scope of the small bowel). Unfortunately these aren't tests that the ER can do. The ER is limited to blood work, stool tests, X-Rays, CT scans, and Ultrasounds. Depending on the day and hospital, sometimes they are able to do an MRI but it's not common. Hopefully you can find a new GI and honestly, getting your Crohn's under control is the most important thing so if it were me, I wouldn't mention the pain med usage and wouldn't ask for any either.

Keep us posted on how you're doing.

 

[Bakabilly]

I'm in Colorado. I do need to re apply for disability now that you mention it. Last time I took it to trial and everything was looking good, until I got denied for being a pot smoker. :/ it was medically legal but not by federal standards.

Thanks for the replies.

 

[Kero]

Sounds like quite the rollercoaster ride for you There are 2 doctors that work in the clinic I go to that have labeled me as a pill seeker, when I am asking for T3's....I have to make sure I see MY doctor or I am given grief. I can kind of relate to that

I don't think blood tests and CT are sufficient for seeing Crohns. I have had many many blood tests and 2 CT's and nothing showing up, but I am still in agony. I haven't been diagnosed with anything other than IBS (which was BS cause the meds the doc gave me made things 10 times worse). Next up is me being sent to a GI doc and an MRI done.

I hope you get some answers. I think it's kinda crappy for doctors to be labeling you for stuff that happened in the past. They should be trying to help, not just brushing you off

 

[UnXmas]

I've been in what seems like a very different situation, but I think it has some pertinent similarities.

My disease caused me to lose a lot of weight; as a teenage girl, doctors misdiagnosed me with anorexia. From that point on, I was plagued by doctors who wanted to explain every physical symptom I had as mental illness. I could not get help with my digestive problems because doctors just insisted I was making up my complaints of stomach pains and diarrhoea as a way to hide what they saw as the real cause of my weight loss (an eating disorder).

So I understand discrimination and how, once something stigmatising is on your medical record, that's all doctors will see.

A few things that may help:

Don't give them a basis for their accusations. Stop any illegal drug use or usage of drugs for the mental rather than physical benefits. Although I've no experience with drug use, I do know this is much easier said than done. But it will be much easier to insist that your problem is Crohn's and not recreational drug use if you really can honestly say that you are not using drugs inappropriately. Maybe you can find a doctor or other addiction specialist to help you detox who can then vouch for you - an expert who can write to your doctors and tell them your complaints of physical pain are valid.

Find a doctor who is sympathetic and stick with them. Building a long-term relationship with a consultant and going to that person for medication will likely be much better than having to seek help from emergency room staff who don't know you and who only go by your medical record.

Make a complaint. I don't know how the system works where you are, but I was able to get my medical records amended by going through the formal NHS complaints service. It gave me the opportunity to have face to face meetings with doctors and hospital/GP surgery administrators, and explain my situation. This was much easier than having to plead with a doctor to ignore my medical record whilst I was in pain or in hospital or limited to a ten minute doctors appointment or whatever. Again, get notes from the meeting down on paper to refer to in the future.

I hope this helps some!

 

[carrollco]

UnXmas. You can are one tough, tenacious lady. I'd give you a thumbs up if I could.

A Writer's Life Interrupted
www.louanncarroll.com
Crohn's survivor and advocate. Humira quit on me, tried the natural route that cost me 500.00. Will stay on SCD. Currently on prednisone, waiting an approval for Remicade. 6mp is a no go as it hurt my liver and I am allergic to aspirin which rules out mesalamine. Biologics and prednisone are all I have left.