Hospitalized every 3 months. Drs. say it's my fault?!

Hi all, I could really use some advice.
I agreed to my first CD surgery and had it done November 2011 with promises of remission and rainbows. I was then hospitalized for 4-8 days at a time every other month until April and then every 3 months since. Up until the last two hospital stays I was admitted for pain control with doctors assuming it was adhesions/ scar tissue pain. I was told to stay on top of my pain and not let it get out of hand...meaning take your Hydrocodone as prescribed NOT when you can't tolerate the pain any longer. I have stayed on clear liquid graduating to full liquid diets for months at a time and still end up hospitalized like clockwork. The doctors assume that I'm lying to them about my diet and even though I have D a majority of the time and go the bathroom 4-5 times on most days they like to tell me I'm in pain due to constipation...
The last two stays...July 7 days & December 10 days were actual blockages w/ the surgeon shadowing me until it cleared. This last time they blatantly said "You are doing this to yourself because you take too much Hydrocodone." and the surgeon gets up to leave my room (seemingly upset b/c my obstruction cleared making him unnecessary) and says "Lay off the narcotics" I find this amusing since the last few times I wasn't taking enough. And every doctor lectures me about eating fast food, fried food, meat and nuts... I eat absolutely none of these things and haven't for 4 years... longer w/o red meat.
There's nothing like being starved (NPO) for 8 days and having GIs come in and tell you you caused this. My GI doesn't have privileges at the hospital my insurance makes me go to but still he has no solutions or answers. He says my CD is in remission. If this is remission I want my pre surgery/ pre ugly scars continuous flare back
My question is do you guys have post surgery experiences like this? Are doctors this mean to you?
Here's some background:I'm prescribed Hydrocodone 10/325 1-2 pills as needed every 8 hrs I take no more than two a day when I get off work in the morning unless my pain feels like it will put me in the ER. I recently moved my Remicade infusions to every 4wks and take 100mg Azathioprine (Imuran) I took Hysoscyamine .375mg for 3-4 months until it made my vision so blurry I couldn't read or drive at night.
My pain (abdominal cramping & stabbing/ severe back & joint pain/ Migraines/ Headaches almost constantly) NEVER goes away...ever. There has been no such thing as a "Good Day" for me in over a year.
Prior to and ER visit I will endure sharp stabbing pains for 8-12 hours crawling to the bathroom to vomit just to see if it will maybe just maybe go away. At the ER it's Dilaudid 2mg- if they start w/ 1mg it takes 4 rounds w/ 2mg it takes 3 rounds for pain to release. Phenergan/ Zofran and if they're smart and listen to me adding Ativan helps the Dilaudid work better. They pump me full of contrast and send me for a CT scan. I always get admitted but the last two times have included a VERY painful NG tube (the tubing is as large as my pinky and I have a very small face). NPO (not even ice chips) for 8 days w/ a picc line since they busted all my veins. Small Bowel Series, KGB and July they forced a Colonoscopy on me.
I apologize for the length. I have officially run out of friends/ family to discuss this with. I made an appt. at UTSWs Crohn's & Colitis Program to get a third opinion. My GI dropped me on Thursday because of the records request. I have lost my dance career and am unable to teach my acro classes I love or participate in any of my regular activities like yoga or ariel class. I am so weak after each hospital stay getting and keeping my FT job as a sleep tech is nearly impossible. I am so tired and I hurt so bad and I am so confused. Any advice is greatly appreciated.

~pixi

Thank you 73monte! You're absolutely right; I need better care. Problem being I work for a hospital and our insurance states that you must use their facilities for procedures/ tests/ admissions if you so choose not to coverage drops from 80-100% all the way down to 50%. 😱
I've just come to the realization after 7yrs that I am over my GIs head. My case is too complicated for him to figure out. My infusion nurse has been baffled as to why he doesn't increase my remicade dosage if I'm still symptomatic and still so sick. My hospital system is good if you're issues are mainstream. Crohn's is NOT a speciality of anyone from surgeons to GIs. So on a good but very expensive note I have a consult w/ the UT Southwestern Crohn's & Colitis Program which has a multidisciplinary approach to care. I'm very excited but scared to death. At this point I'll pay/ go into more medical debt for a chance at healthier life and answers instead of hurtful misguided blame.

Thanks stereofidelic89... You'd think since I work there they'd be more respectful but I think when some doctors can't find an answer they choose to blame the patient. If I had stabbed myself repeatedly w/ a butcher knife I'd understand buuuuuut I didn't soooo. Jerks. Ugh. I tried to refuse CT scans asking for the blood test instead but the ER docs don't know that procedure. I adamantly refused a colonoscopy in July and they basically threatened me w/ death by sepsis.👿
Diet modification yes I am very careful about what goes in my kitchen where I eat, organic, generally free of gross stuff. I can't do supplements or vitamins they either hurt or cause extreme nausea and/ or dizziness. I tend to be on the weird side as fresh fruits, veggies, bread and sugar are all my safe foods. I've manipulated diet a million ways but my safe foods work. This year nothing works I have tried believe me. The inflammation is gone since my surgery so they attribute the severe pain (when there's no obstruction) an vomiting to scar tissue on the outside of the intestines causing temporary strictures... These of course are theories. Last two hospitalizations I was obstructed and bowels distended. In July after 5 days NPO fluids IV antibiotics & pain meds it miraculously (don't ask me why this surprised them??) disappeared. In December it took 8 days + in hospital Remicade. For now I know I need remicade Imuran and pain control I hope one day I'll be able to keep my CD in control solely through diet but for now that's just a dream...

Hi!  I am sorry you are going through this.  I agree with the above, it does not sound like you are getting very good care, at the very least your GI should be exploring other reasons for your pain if you are truly in "remission".

How long have you been needing the hydrocodone every day?  I have gotten myself in a dilemma where I was taking it daily and it was actually causing more pain than it was helping.  Obviously I felt better when it was in full effect, but once it wore off I would feel worse because of how it slows the gut down.  Narcotic pain relievers can cause stomach pain for people who use it for non-gastro reasons as well.  I know it may be difficult, but would it be possible to save the pain meds for the really bad pain days when it is keeping you up at night and see if that makes a difference?  Or try another pain med?  I really can't tolerate the narcotics, but find that low doses of tramadol are helpful and do not have as bad side effects.  Some people find relief with certain antidepressants as well.  Just something to consider.

No matter what you decide, I hope you find relief soon!

I am new to this forum, but just wanted to tell you I am so sorry you are going through this. I have heard great things about the SCD diet--most everyone on it goes into remission. Also, I am understanding that gluten can also affect Crohns. The SCD diet is difficult to follow. I did it for several months religiously, but that's about all you do--it's work. I did experience good results with it. I hope that you find an answer. I am so sorry that you can only be treated under your insurance at the place where you work. I was over my doctor's head's as well after a total colectomy for colon cancer/long standing IBD. They referred me to Cedars Sinai where there is a fantastic IBD Specialty Clinic. I was on remicade for 4 years there after a follow-up bowel reconstruction because the VA who performed the original surgery screwed it up. I eventually developed a severe reaction to the remicade and had to go off it. Before landing at Cedars, I was put through hell with the doctors who chastised and blamed me, patronized me and told me to "try not to wipe so hard" when I was bleeding. I was sent to psychiatrists as they thought I was a mental case, who then thankfully sent me back to the doctors and told them I wasn't. Dealing with some of those doctors can certainly make you feel crazy though. And Crohns is notorious in that we often aren't taken seriously, but thought to be addicts or hysterical or some other crazy thing. Crohns is kind of like, "now you see it, now you don't" thing. It is tricky, elusive and takes a caring, committed medical team who listen to you and take you seriously--I got lucky after years of being abused by doctors. And I have an atypical kind of Crohns, so it is extra difficult to track down and treat. In any event, I am sorry you are going through this. It's good to have friends that understand.