Pain and frustration

It is so frustrating when you are treated like a pill seeker. Every time I see my doctor he assures me that the pain pills I take are fine, and that I should take them when I need them and not hesitate. However, every time I call for a refill I get the run around like "this is the last time we can refill this." I just got out of the hospital with c diff and a uc flare. Dilaudid was the only thing that gave me relief. Now I'm at home and am following all treatment plans, but I still have unbearable pain. My doctor seems to have forgotten the severeness of my condition. He says if its that bad go to the ER. So should I go to the ER every other day? like I said I am taking all meds prescribed from my hospital stay. I am so so frustrated. Has anyone seen a pain management doctor? Would this be an alternative option to the dreaded call to the GI for a refill?

Thanks for your support. I just don't know what to do. I love my gastro but lately it seems he doesn't have time for me and a growing lack of understanding. he gave me his cellphone number bc he said his UC patients have special needs, but he can't live up to giving me that much time i guess. i went to the ER recently for a severe flare, and I was admitted because I also had C Diff and the pain level was unbearable. So, I am treating C Diff before I can have my next Remicade infusion. He is supposed to be my point person for my treatment plan, but he is not available. I need a plan! I don't think I can have Remicade while I am still on antibiotics. I'm just frustrated and ranting. Thanks for listening.

i'm on Lialda, too. I have been on Remicade since April. I responded very positively after the first infusion, but after my third or fourth there was no progress. My gastro and I were thinking it was because I had C Diff already. Thank you for the advice. Every time I visit the office, I ask him about getting the run around with pain medication and he assures me I shouldn't worry about it. Then when it is time for a refill......
If he calls me back, I will say something about it and how stressful it is. I think I will be in pain until I get Remicade (hospital GI staff said the same), and that won't be until I finish the C Diff antibiotics. When I talked to the nurse she acted like he didn't know this. I had called the office for several reasons and only got a response about the pain meds. I am on Wellbutrin, Zoloft, and Klonopin, too! I was on the Imuran, but it stopped working and had horrible effects on my body.

noticed you have a vegan diet. have you found that diet is better? I am a vegetarian and lactose intolerant (so not a lot of dairy), but do you find the vegan diet better? I tried to add fish in for the fish oil benefits and i just can't. i can't stand not being able to eat fresh veg bc i'm in a constant flare.

Thanks for the response. I guess i should add my meds to my profile. As of right now (2 weeks out of hospital) I am taking Lialda, Vycomidicen (antibiotic for c diff), almost done with prednisone, wellbutrin, zoloft, and clonopin as needed, as well as norco or percocet as needed for pain. Yes when I'm flaring even water sends me to the bathroom. i find cooked vegetables are easier for me to digest. i've tried a vegan protein powder in my smoothies and that does ok on my stomach. yes sugar for me too, and processed foods. my husband was just diagnosed with the beets, so now we are eating even less sugar and carbs (which can be hard when flaring...because saltines can be all a eat for days).

Amitriptyline is good for the pain with IBD. It will make you tired but that is a bonus if you take it at night and stops the pain from keeping you awake or waking you back up as much. it can make you a bit constipated but sometimes that is also a bonus if you need to slow your bowel down. The break for pain can be so welcome and it is not addictive. Hope you feel better soon.