Pain Management with IBD
Pain management for inflammatory bowel disease is something many patients struggle with, myself included. Pain is challenging, especially for someone who has a chronic illness. If it was a short term problem that could be visually seen by a physician, it would be a different story.
Oftentimes people who suffer from Crohn’s Disease or ulcerative colitis deal with other medical problems as well. For example, in addition to my inflammatory bowel disease, I have chronic migraines and pyoderma gangrenosum. Some people with IBD tend to have arthritis or another autoimmune disease. Even if you are someone who has inflammatory bowel disease ONLY (and that is enough!!! :) ) you probably have a complicated medical history.
Point being, Crohn’s Disease and ulcerative colitis patients tend to have trouble finding adequate pain control. The reason for this is plentiful but there are some things that have been on my mind that I wanted to share.
With such intensely complicated people (like myself) it is hard for doctors to fully understand the reason for pain. Oftentimes, nerves are damaged during surgery that aren’t shown on any imaging tests or blood work. I have lived with on and off back pain and after many doctors, physical therapy and tests concluded that because my stomach muscles are so weak, it puts extra pressure on my back. That isn’t something that would show up on a test since thankfully there is nothing wrong with my back. But, it is something that prevents me from being able to walk on many occasions, miss out on things, sleep, etc so… I should be able to have the option for pain control, as long as I am under the care of a trained physician. There are many more examples of things an IBD patient goes through that can cause pain, but not necessarily in a way that is evident or makes scientific sense to a physician.
Below are some barriers I see regarding pain management...
Doctors Are Frightened
With all of the new pain medication rules and regulations, doctors are under a microscope. Many feel paralyzed to help their patients without fear of severe consequences. They have also been programmed to not trust because prescribing the wrong thing to someone you thought you could trust could very well cost a doctor their license and everything they have worked and dreamed about becoming their entire life. Those things are not to be taken lightly by anyone and I cannot blame a doctor for worrying about this. I do blame the people who put physicians in such a terrible position.
The Media
The media talks constantly about how everyone is dying from opiates/narcotics without any backstory about most individuals who have passed or were hurt. But, when talked about constantly, it really gets in people’s minds that narcotics are evil, awful medications that NO ONE should be on unless maybe you are dying. While no one wants to take these medications or fooling themselves into believing they are good for you, there is a very real reason for them in society.
But the media will compare people who use pain medication to people who are addicted to heroin. Seriously. It is offensive. It is not even close to the same thing and just creates a stigma against these medication that doesn’t need to exist. This can oftentimes make a person who is really in need of relief feel badly about getting the treatment they need to survive in this world. It also causes a lot of family and friends of someone with a chronic illness like inflammatory bowel disease to pass judgment because they are just being fed information that isn’t always accurate.
Pharmacies
Pharmacies also have to comply with new rules and regulations. I have had many issues filling a prescription for pain medications because the government now only lets pharmacies order a certain amount in order to limit the number of prescriptions filled. I, or usually a loved one, have had to run around (because they never will tell you over the phone) to so many different pharmacies just to see if they had certain medications in stock. And while if a pharmacy does not have a medication in stock, they are usually able to order it… that is not the case with pain medication. They are allowed to re-order when the government says they can.
After my recent surgery, I crawled out of the hospital on the early side because my PTSD would not allow me to be there anymore. I asked to be taken off of IV pain medication as soon as there were bowel sounds because I wanted to see if I could handle the pain at home. And although it wasn’t ideal, I was able to leave… except it took five pharmacies and my family driving around while I was in the car in tears before a place finally carried what I needed. They also won’t fill a partial for these medications. Meaning, if you bring them a prescription for 30 pills and they only have 10 in stock at the time, they will give you the ten but then the prescription is void. As opposed to with other medications, you can then get the remaining pills once it is in stock.
Invisible Illness/Lack of Education
There is also such a lack of understanding and education when it comes to a chronic, invisible illness. It doesn’t help that most of us have perfected putting on our phony smiles as though nothing is wrong. It takes a special doctor to be able to see through all of the superficial stuff - appearance in every form (clothes, hair, makeup, weight, etc) The whole invisible illness part makes getting a doctor to believe you that much harder.
The Reality
Narcotics/opiates also allow someone to be able to do housework and chores which makes them feel like they are contributing to the household and helping his/her partner. These medications could be the difference between a person being at his/her kid’s little league game and having to miss it - which is devastating for the parent and definitely impacts the child.
The inability to be able to get out of bed and to do basic things to help yourself and your loved ones puts an enormous strain on many relationships, whether they be romantic, with a child, parent or sibling, a friend, community member, etc. When someone has a little break from unrelenting pain, they are able to feel a little more hopeful. They are able to see a life outside of pain and they are able to feel good about themselves for being able to accomplish certain things.
It also allows for more patience - when you are in a ton of pain, it is hard to be sympathetic to others. Sleeping is a problem for many, hence the name “painsomnia.” Sometimes narcotics/opiates can be helpful in just allowing someone to sleep a little because their body finally feels like it can. And as most of us know, not sleeping is a recipe for disaster for anyone -but having continuous days of pain you cannot get rid of, with no break for sleep, is truly a crisis waiting to happen.
I think you get the idea.
I also want to be very clear in that I am not negating the dangers of these medications. Trust me, I am fully aware what many have gone through with narcotics/opiates and the enormous downside to them. That is not to take lightly and I never do. I hope anyone reading this doesn’t either.
I just wonder….
When did the way we decide to go about our lives and deal with our debilitating chronic illness become anyone's business but our own? Who gave the DEA (Drug Enforcement Agency) or any other part of the government the right to scare doctors out of helping people? If someone has a valid prescription, isn’t it a good thing if you care about people that a pharmacy has it in stock? All that is doing is preventing someone in severe pain, who has done everything by the book in terms of being under a physician's care and obtaining these medications in a legal way, from getting what they need. Allowing a pharmacy to do what is needed for their customers (ex: ordering the medication if it is not in stock within a reasonable amount of time, not when mandated by the government) could save a person {and often their loved ones} from another night, day, week or even month of absolute misery. This also causes people to go to the emergency room for pain control which costs a ton of money, can be traumatic and often comes with anxiety given you have no idea what you will get when you go to the ER.
I plan to delve into this topic more as time goes on. I get so many messages and read so many of your comments about not being able to get adequate pain control that it breaks my heart. It breaks my heart because I have not only been in your shoes (and still am to a degree) but I also want more than anything to help you and change how things are done and how we are treated.
Crohn’s Disease and ulcerative colitis are such challenging diseases to navigate on their own. It would be nice if when/if we were experiencing something painful that we were able to get the help we needed without fighting. I understand there are GI side effects that come with opiates/narcotics. Again, I am not naive to that fact. Constipation, blockages, motility problems just to name a few. That is why every person should be looked at as an individual.
I don’t know about all of you but I am sick of fighting for things I know should NOT be a fight. If you're someone who has tried this type of pain management and it causes you side effects, why would you want to continue and make yourself worse? You wouldn't. But, if you are someone who has had experience with this type of treatment and know it has only been beneficial, why shouldn't you have a right to relief when needed?
I am sick and tired of having to try and convince people of things. I just want some things to be easy for us.. Or easier. We are ALL entitled to the best quality of life possible. As long as we are being safe, we should have the right to handle our lives the way we wish. Whether that be never putting anything in your body that isn’t 100% natural to try and improve pain/increase quality of life, or taking pain medication when you need it… that is your choice and should be between you and your physician only!
If you've been struggling with this aspect of chronic illness life, you are so far from alone. Together, I know we will make a difference! With time, I know it will come. Let's continue to share our stories and support one another with whatever choices are best for them.
As always, I'd love to hear some of your experiences and thoughts about pain control for inflammatory bowel disease.
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