No pain management

Sorry you are having such a hard time. What exactly is causing all the pain? What medications are you on to manage your Crohn'n? Is it the arthritis or the Crohn's causing the trouble? Do you have rheumatologist on board?

My primary pain concerns are my pelvic pain from bladder inflammation (cystitis), abdominal pain, frequent infections, and Crohn's arthritis. I have not been recommended at rheumatologist; I imagine because my arthritis is from Crohn's and is not rheumatoid arthritis.

I saw my surgeon again today for the JP drain removal and my PCP on Thursday. I tried seeing a GI last week, and the office made that appointment, but when I showed up with my father they turned us away, saying the GI couldn't see me because I saw someone else in the practice. This is one of many issues with that office's staff, and apparently even my surgeon's office has had the same trouble. The nurse at the surgeon's office tried to set me up another appointment at that office today, and you could tell she was getting frustrated, too. I am so angry at that office. They make me look like I'm noncompliant, which is ridiculous because I see all my other doctors just fine.

I took tramadol for a number of years, 200mg or less a day, prescribed by the same pain management doctor since 2008. It was never enough, but I dealt with it. I really couldn't live a normal life: I couldn't even go to the mall or the zoo without having to take frequent breaks due to lower back pain. But as my pain worsened, I tried to see that doctor more often and he knew of my trips to the hospital. But he didn't care. He didn't prescribe anything else, he was frequently late on refills and even rejected a refill two days ahead of time, right before he went on vacation. The month before that he was eight days late! And then the staff yelled at my fiance for calling them and leaving a message saying he was late and they hadn't returned my call, and we were tired of having to go to the hospital for my pain. The physician's assistant recognized the severity of my condition and we talked for a while, but the doctor himself acted like I was just fine, since my two abscesses were healed. Never mind I had just gotten out of the hospital again for fluid aspiration, a high WBC, and two new ovarian cysts which I had never had before. Since then, I have had another severe abscess.

The surgeon today refused to prescribe any pain medication for me. He just took out the JP drain, which went fine. He's pretty good at that. I like my doctors as people, but they just don't understand the severity of my pain. I can give them numbers, but how will they know how bad it is? I can say "I want to kill myself it's that bad," and I'm afraid they'll put me in a psych ward and declare my pain as mainly in my head. Nevermind my heartrate was 144 in the office today. 144! And no concern. Did they think I just ran a marathon? No temperature check, either. At least do that, and run a blood test.

I have been taking so much pain medication, outside of narcotics, to control this, and it's no use. I take at least 2g of Tylenol daily. I take Pyridium for my cystitis pain, which nobody even recommended to me, I just did research online. But I know I can't take that for more than a few days without asking a doctor, who will probably tell me not to take it anyway knowing them. Then I take ibuprofen, even though it is strongly contraindicated with Crohn's disease. I also take prednisone, which I have reduced to 5mg from the usual 10-15mg, and that I only took because of my pain. My PCP says I must stop it, and I am being difficult and have to follow their instructions, and I understand that, especially with the danger of taking prednisone for more than 3 months or so. But they are giving me absolutely nothing to help!

The PCP also refused to prescribe any pain medication, and instead said I must wait to see a new pain management doctor. Her office then referred me to a god-awful physician with several disciplinary actions against him and a lawsuit by a dead Crohn's patient's family. This is that doctor in his own words on his Youtube channel, in reply to a comment about pain during epidural injections (he said there is no pain): "depends upon who is doing procedure; we do over 2000 per year; we don't have time 'fussing' with patients and make our process pleasant for both patient and doctor." However, I was recommended another pain management doctor and have since been trying to set up a referral with him. He seems good; I only wish I saw him sooner.

Why do the GIs in the hospital never do anything for me? Even when my infections weren't as bad or perhaps not a problem, they could have started me on a medication right then and there! Why didn't they? What am I supposed to do to get help? I'm tired of this!

I want to add my sympathy for what you're going through Ninja. My rheumatologist is one of the only docs to give me pain meds (I only have Crohn's arthritis), so it may be worth it to make an appointment with one... of course, I realize every doctor is different, but why not try?

Personally, I would try to find alternatives to NSAIDs, which I know is hard, but it can really make things worse. I have chronic headaches and migraines and was taking Advil every day in the summer of 2012 to deal with them and then, bam, I started flaring (including stomach ulcers, which is one of the main concerns) and am still not in remission.

Another suggestion is to try acupuncture. I've thought about doing it for some time and I know several people who say it helped with their chronic pain significantly.

I have been having a lot of pain lately and, initally, my GI just gave me Percocet (lesser narcotic pain meds are ineffective on me) to shut me up. I then tried to get more about a year later and he told me no because it was just "masking" the symptoms and I shouldn't be taking it anyway. At that point, I was nice enough not to remind him HE was the one who gave me the meds in the first place!

He's supposedly a good doctor and is supposedly an expert in IBD and he does seem to know what he's talking about in terms of the known mechanics of the disease, but it just doesn't seem like he cares and going to him for anything other than a prescription change is useless. I tend to rely on my PCP A LOT.

After a really long time, the GI finally referred me to a Rheumy who dx'd me with Fibromyalgia on top of everything else. Turns out, all that time my GI was ignorng me, I was having a major fibro flare. The pain and depression and anxiety were so bad that I was put off work (by my PCP) and almost hospitalized for my mental condition related to the pain. Coincidentally, my psych started me on Cymbalta at the time and it has been a tremendous help.

Unfortunately, I still had/have some pain (hard to tell if it's CD or Fibro or both). I sent a message to the Rheumy about getting my pain pills refilled and she stated she doesn't handle that and to ask for a PM referral. I then went to my PCP and asked for a PM referral and she didn't think that I was at that level of need and that she could see that it had been several months since my last refill so she felt comfortable prescribing them for me. Most days, though I do try my best to go w/o taking any percocet, I take one perc and one Tylenol and I'm ok. Thank the medical gods for my PCP. She has been my doctor for several years, beginning when my disease was mild and has seen me get worse and worse over the years and thankfully understands this is NOT in my head.

I'm so sorry you're having this trouble. I know what it's like to legitimately contemplate suicide because of the pain. Just remember that it will get better and if a provider doesn't want to help you- find another! It's not in your head...this is real.

Also, be careful with the Tylenol. When my pyoderma flared a few years ago I was popping Tylenol like crazy to try and feel better. Turns out the pain from PG is well known to be very intense so my WOCN yelled at me for not mentioning it sooner and I was put on some narcotics which gave me so much relief. Previous to her yelling at me (not really yell, more like a scolding) I had no idea that there was a toxic level of Tylenol that can be fatal. I am so much more careful now. She told me that if your pain is bad enough to need several grams of Tylenol, then you need something stronger! Not that that's news to you.