woman curled up looking down

Pain Management Frustrations

Last updated: April 2022

A little while ago I wrote an article about pain management.

I will be honest and say that I am literally writing this article in tears after crying to my dad on the phone. I want to crawl under the covers and not come out until things have been resolved. But instead, I thought I would write something because I know if I am feeling this way, there has to be at least one other person suffering from Crohn's (or any chronic illness) that is as frustrated as I am.

Suffering with pain for years on end

I want to start with something my boyfriend shared with me yesterday. He has chronic back and neck pain that requires extensive surgery. This would mean he would be completely out of comission for two-three months. Between needing to work (and be present at the office) and having two kids, one of which has Crohn’s disease, and just flat out not having anyone who can kind of "take over" for him while he is recovering, he has been unable to have this surgery for years. It has been about seven years since he has been suffering.

I personally feel awful that I cannot help him right now, but I am trying to remain hopeful that one day, he will be able to have things corrected and I can take over a lot of the things he worries about. But I digress.

New regulations around pain medications

He thankfully has had a wonderful and very understanding internist who was providing him with some pain control when needed. His doctor had to stop because of the new regulations a few years ago. At his appointment yesterday, his doctor told him that by law he is not allowed to prescribe opiates for more than five days and that is for very severe cases. Basically, unless you have cancer or are on the verge of death…

His internist, who is a true human being and also understands IBD (Crohn’s disease and ulcerative colitis) very well told my boyfriend flat out how upsetting it was to him that he couldn’t help his patients sometimes. He even gave an example of how he prescribed pain medication to one of his patients for two weeks and received a phone call from the pharmacist saying that it could not be filled.

He actually yelled on the phone (and rightly so!) about how HE was the doctor, that this was needed for HIS patient, and it is the pharmacist's job to fill what is written. It wasn’t like it was an illegal script or something! Obviously, there are those who are just looking for medications (aka drug seekers) but it has been awful for this doctor, and many others, to not be able to help those patients who have been seeing him for a while and who he knew he could trust.

Limiting access to medications for those who really need them

While I know these new regulations for pain medications are there to protect the public, they are HURTING THOSE OF US WHO TRULY NEED THEM.

I am not even just talking about IBD in this article. It seems as though unless you have cancer, no one takes pain seriously. Almost as though, a person cannot possibly be in THAT much pain unless they have cancer. (I am in no way trying to mitigate the seriousness of cancer but rather, make a point.)

And the insane part is... Those people who are truly drug seekers will find a way to get these medications. It is like prohibition. However, people like myself and most of you reading this who truly need them for legit pain control, don’t have friends off the street who you can get pills from. Plus, I would be too afraid even if I did know someone because you never know what is in random pills when it isn’t being regulated.

I have a friend who suffers from Crohn’s disease who also told me that her hospital doesn’t allow ANY inflammatory bowel disease patient to receive pain medication. Instead, they give Tylenol. Before anyone thinks I am naive to the risks of opiates and the fact that they can wreak havoc on motility, etc... I just want to say I know the risks very well, as stated in my previous article on this topic. But, ARE YOU KIDDING ME????

Each situation when it comes to pain is different

How is that a blanket rule for everyone? Crohn’s disease and ulcerative colitis are rated #3 and #4 of the most painful diseases out there. INCLUDING CANCER. And there are laws in place that don’t allow doctors to treat a patient properly? It is sickening to me. Every situation is different and every person is unique.

Also, as I have stated before, most IBD patients are petrified of the ER and want nothing to do with the hospital. So, if we are in need of assistance outside of our doctors office or we can’t bear it anymore at home, it is because we are truly suffering and need help. I am sorry... I mean, DESERVE HELP.

Plus, as long as we know what is going on and not band-aiding a potential problem, having oral pain medications available in our home would probably mean less trips to the wretched ER or hospital. It would allow us to feel like we could be a little more in control of our lives and not at the mercy of hospital staff all of the time.

We did not do this to ourselves and it is outrageous to me that people who don’t live in chronic pain get to decide our treatment plans.

My doctor can no longer help me

I had one doctor who knew me very well tear up and tell me that because of the new laws, he could no longer help me. This doctor who I had been seeing for over a decade hugged me after we had a very honest heart to heart. I could see the pain in his eyes that he was no longer able to help me in the way I needed. I never saw a lot of emotion from him before but we both ended up crying at the end of the appointment.

One of the doctors I currently see told me that he loved going to other countries to practice medicine because he did not have to deal with the all the red tape he has to while practicing in the United States. He said, and even wrote an article about it, that it was amazing to be able to help those people who were truly suffering in the way he knew was best... without worrying if it would cost him his job.

I feel bad for everyone involved. Both physicians and patients. Doctors are afraid to lose their license and patients in chronic pain cannot get help to improve their quality of life. Since these new laws have been in place, more people who live in chronic pain are committing suicide. And who can blame them?

Pharmacy reactions to pain medications

In addition, even if someone is lucky enough to get a prescription for pain medication, chain pharmacies like CVS and Rite Aid always give you the stink eye when you come in to fill it. I would get so nervous even bringing a valid script into a pharmacy because of the way they looked at me and treated me. I don’t know if they do that because on the outside I look fine or that is how they treat everyone.

Either way, it is not a pharmacy's job to judge what medication someone is receiving. If there is an interaction possibility or a question, they should always feel free to contact the prescribing doctor but other than that, pharmacists do not know a patient's history. And it only makes people who live in chronic pain feel even worse for needing these medications.

I did not choose this condition or to be in pain

I feel awful that I need pain relief. I am 30 years old and should be out and about living my life without medications. But, I was stricken with a disease that also wreaked havoc on other parts of my body, that has required 15 open surgeries, caused nerve damage, extraintestinal manifestations, etc, etc and I cannot help it. If given the choice, would anyone WANT to be taking pain medication? I suppose some but the majority would give anything to never need those pills again. I know I would.

I apologize for venting so much in this article. As I said earlier, I am so frustrated and upset. I feel like I am not in charge of my own life. I feel like I have to fight the system so much. I also know that many people who have had surgeries for their IBD do not absorb medications the same way.

You are not alone if you're dealing with this

I could write a book about this topic - and maybe someday I will. But for now, I just want anyone reading this who may be in a similar position to know... You are not alone. It is not fair that you have to suffer for a disease that you had zero control over. And that disease comes along with other extra-intestinal manifestations that you also have zero control over.

You are not alone. The system is broken and we are the ones falling through the cracks.

As a side note, I mention all the downsides to giving pain medications to IBD patients in my previous pain management article so please don’t think I am naive to any of the negatives. And there are plenty of them. However, people are killing themselves because of these new laws. People are unable to work, even part-time, because of these new laws. People are unable to be present with their families. Parents are unable to be there for their children because they are in too much pain and don’t want their little ones seeing them suffering.

It is not fair.

One of my goals in the future is to fight hard against these new laws. We deserve better. Our families and friends deserve better. People who live in chronic pain have enough to deal with. We shouldn’t have to fight so hard.

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