Doctors, doctors, doctors. . . .

[raindrop]

I had an intelligent, well respected physician for most of my years with Crohn's, which is now longer than half my life. I was diagnosed in 1986. I have experienced inept doctors, as well, in 26 years of IBD.

Nearly five years ago, I had to leave my good doctor of 20 years because my husband's career took us to a city far away. My good doctor recommended the new doctor who is very, very, very smart about IBD. Personality wise, he was more reserved, more distant, and I think we did not connect.

I had just begun Humira and was becoming well for the first time since my youth. So each time I saw this new doctor, my body was becoming more healthy, but my thinking hadn't caught up with it, yet. I don't know how to describe it other than I just didn't know I was healthier. It didn't sink in.

Further, when I was very sick, I had pain medicine in the house. I didn't often use it. But fistulas can really hurt and standing can really hurt, and taking one in the evening made it easier to fix dinner for my family and put the little ones to bed. I could tolerate the pain during the day but it was a relief to have a break from it.

I also used it for excruciating menstrual cramps and rare obstructive pains. I have had five surgeries and still have stricturing.

There was security in having it available, even if I didn't use it. It was about seven months into my relationship with the new doctor in the new town when I asked for a refill and tried to explain that it would be for partial obstruction pains if they were to happen.

He said to go to urgent care or ER if I have partial obstruction pains. In my experience with Crohn's, I've never gone to ER or urgent care for partial obstruction pains. I have taken pain med, took liquids, and waited. They've always resolved in a matter of 48 hours or so. ER and urgent care are expensive, and I fear I wouldn't have control over what would happen to me there or that more expensive imaging tests would be ordered.

My long-time GI doc had said that if the pain persisted beyond the pain medicine or didn't resolve, then go to ER, and I would have if needed, truly.

This new doc was unwilling to prescribe but gave a referral to a gynecologist (who did prescribe). I continue to use pain meds each month for wretched menstrual cramping and on very rare occasion for stricture pains when I've had too much fiber.

We have moved again for my husband's career. I am in a different state and will meet a new GI doctor next week.

I read the most recent doctor's notes recently with my medical records. He added a paragraph about my asking for Percocet and his not providing it. In a few places, he described me negatively. He also had several errors regarding diagnosis and surgical information.

I have enough pain meds to get through the next two cycles if I use them for only the very worst of it. I don't have a gynecologist, yet.

I don't know how to discuss this with the new doctor. I'm once bitten and twice shy now about talking to a doctor and wondering how much of what I say or how much of how the doctor perceives me subjectively will go into my medical record.

I am thinking that I will copy the letter my good doctor wrote on my behalf to the aloof doctor who didn't end up liking me much. This letter summarizes my medical history up until the point I began Humira in 2007.

I thought I would take a copy of the last colonoscopy report, last labs, and last CT Enterography report--all of which show a healthy me since Humira works like a miracle.

But I do not want this new doctor to talk to my aloof doctor. His name is on the recentl records. I would rather forget this man completely and have no association with him.

I'm rambling. Any insights, advice or thoughts would be welcome.

In the last 12 months, I have watched my husband try again and again and again to find a job (he was laid off in Feb 2011), watched our home go to foreclosure and auction, watched my husband accept a six-month contract for work in another state (no security but a lot of hope), and empathized with our 12-year-old daughter who has to change schools in 6th grade and leave her community behind--during all of this, I have had no trouble sleeping.

Reading a less than favorable medical record with negative subjective comments about me? Yes, I lost sleep. I think my personal integrity has been attacked, and that makes me mad. Resolving to correct my medical records has restored my good sleep.

I'm apprehensive about starting over with another doctor.

 

[SarahAnne]

I completely understand. I didn't move, but finally had to switch doctors because my GI was totally insensitive to my pain. I don't take pain meds often, they usually make me sick so I only take them when the pain is just too much. He would NEVER prescribe me pain meds, I got them from my urologist when I had to have 4 surgeries for a calcified stone. When I went to the ER a few months later with severe abdominal pains, he suggested it was ovary pain and told the hospital docs to take me off the dilaudid. He let me have liquid tylenol. Not Tylenol 3, regular old Tylenol. I was crying in pain.

Turns out I had pancreatitis. Point is, if you hurt, it shouldn't be ignored. I would be completely up front with the new doctor. Tell him you have pain at certain times, you only take pain meds then but you would like to have a small amount to have on hand. Be honest and tell him that your last doctor believed you were shopping for pain pills and it wasn't the case. I wouldn't hide the records from this last doctor, because you personally don't have anything to hide. Because of addicts, people in genuine need of pain medicine often get treated unfairly. Be honest and don't hide anything. A good doctor should listen to you and treat your pain if you have it.

Good luck with the new doctor. Starting over is hard, hope you find someone you can have a good rapport with again!

 

[raindrop]

Thank you.

And I don't think we should strive to never be in pain. A friend of mine used to think that way and eventually died. She had not wanted a colostomy but had tried multiple surgeries to correct what became a very large rectal/vaginal fistula.

Her doctors gave her tincture of opium to firm her stool since diarrhea burning through her vagina was so miserable and uncontrollable. She was on disability and had more narcotics than she could ever use in a 24-hour day. But she used to say, "You should never have to be in pain." And she died alone in her mid-50's with her small dog, likely of a heart attack.

Crohn's is painful. I think my friend was wrong. We have to accept a measure of pain and try to distract our minds from it with meaningful activities. It's not fair that Crohn's is painful. Not one of its miseries is fair. I think relief from pain is a mercy, but it's not one you want to have too often.

It's complicated.

I guess it's on my mind right now. This is such a large forum, there is probably a place where people write about their thoughts on this topic.

I agree with you that pain shouldn't be ignored. It's a signal that something is wrong. I hope your pancreatitis has improved and that you're feeling well today. Thanks for replying.