Skip to Accessibility Tools Skip to Content Skip to Footer

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • ruthie
    3 weeks ago

    I have had Crohns for over 70 years.
    Seems things have not improved a lot as far
    as treatments and possible cure are concerned.
    Dread having the enemas required for
    examinations and XRays because the area is so extremely sore. Have now given up
    as nothing can be done about the problem
    anyway.

  • tanyag
    1 year ago

    Wow this is exactly how I have been feeling. I live in Canada so the restrictions on pharmacies haven’t started here yet. But the college of physicians and surgeons have started penalizing doctors here. So far I have been very fortunate my doctor has been very good at providing me with pain control. I can’t believe government bodies are trying to take this away from patients. What right do they have. It is my belief that patient education is key to preventing abuse. I have been in charge of my pain control for 7 yrs I have never increased my dose. I believe I take it responsibly. I worry if I have been taking it too often that I may develop a dependency. This is always something I look out for. Thank you Marisa for all your wonderful articles

  • jleathompson79
    2 years ago

    Thank you for posting your story. I’ve dealt with this for 20 some years and was so tired of fighting and living in and out of the hospital with flares and side effects of the meds and dealing with all the issues of pain meds I finally admitted to myself and everyone else that I had become addicted to the pain meds. I’m now in a program where I live that treats both addicts and pain management people with suboxone. I know there are all kinds of bad things associated with this Med but trying to raise 5 kids and deal with CD was impossible for me. I now have a semi-regular functional life. I find myself having to defend my decisions almost daily but these people have never had to suffer like we have with this terrible disease. I’m a much better mother, wife and person because I can actually live now. I spent way to many years in the hospitals and bed.

  • Marla
    2 years ago

    Thank You for this post! I Agree!
    I have been saying & thinking this very same thing for years.
    In my experience, it’s difficult for doctors & people in general to understand how we actually feel, especially if we look “fine” to them…
    It amazes me doctors aren’t educated in how CD can affect their patients beyond the internal complications.
    Education in Disease Complications & Pain Management would be beneficial for All doctors treating CD patients & now government/politicians making laws regarding medication restrictions on doctors & CD patients.
    **Reading posts from patients would give them much needed insight into our life & daily struggles.

    **Invisible Illness needs to be recognized**
    CD: 33 Years

  • hopeforme
    2 years ago

    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.

    thank you for articulating how i have felt about the stupid media i get sooo angry when i see on the news opiode epidemic claiming record level of lives hello why dont u do your fact checking and say the truth heroine users ddying from fentanyl !!!!ahhhh

  • hopeforme
    2 years ago

    I felt relieved after reading your article i felt like for once i wasnt crazy.Ive basically given up when i have a flareup i lay in bed for weeks my Doctor is cruel when i explain my pain and suffering he refuses to be a doctor and to really understand what im feeling.The only way for him to feal my pain is to wish him my crohns disease which i wudnt wish upon my worst enemy which is my doctor today.Anus spincter sores uncontrolable spasms everytime i take sip of water or attempt to eat food.When I ask for a pain killer my doctor looks at me like im an addict .Ive explained my pain showed him my anus expressed what the symptoms are and he bust out the newest execuse today which was he watched a Netflix Documentary about people selling there prescriptions called PRESCRIPTION THUGS what hell .So i go home and I watch it and i was SPEACHLESS i was so embarrased discusted that my doctor thought of me when watching that netflix show.Anyways I used to work fulltime with a prescription for Supedol and live was good.My quality life was improved and I was Hopeful in the morning i took one 10 mg pill after sitting on the toilet for 15 minutes and my spasms in my spinchter would stop immediately and than i would drive to work and get through my day.Now im fully disabled laying in bed as we speak looking online for help and expressing my pain and sorrow to whomever is listening.Whom ever reads this i just want to say i feal your pain im with you

  • jennifpotter
    2 years ago

    I am fairly new to Crohns and have not gotten it even remotely under control (they are as unsure about the diagnosis as they are on how to treat me.) Humira and Methotrexate hasn’t helped, and I started them a year ago. I am in CONSTANT pain, the level just varies. I, too, am having a difficult time being prescribed the ONLY medication that allows me to eat and to at least function on a much, much lesser then level then I always have. The pain is severe and excruciating and nobody seems to understand it or believe it fully. Thank you for writing this article. I have already forwarded it to my husband and mother. It is so nice to know that I am not alone, hopefully, with enough people like us, we can get our voices heard and can get ACTUAL help and relief, which we deserve!

  • Butterfly girl
    3 years ago

    I totally agree with you, I have been doubled over with a bowel obstuction and been told to go home and take a laxative, I couldn’t believe it, needless to say I called my primary doc and he helped me, but point is when you look “healthy” they tend to say your drug seeking when infact your dying on the inside and might be putting lipstick on a pig to look and feel half way decent about yourself. Too many times I’ve said you can give me 5 pills and I will make that last a whole month, just something to help me when it’s really unbearable, just to be told no.I am so thankful now after 7 colon resections, reations to any and all biologics ,never being in remission to have an awesome doctor who knows and understands what crohns patients go thru. Don’t give up,as easy as it is, some doctor will hopefully understand. (Hugs) to all of us suffering with this aweful disease.

  • hopeforme
    2 years ago

    i had a bowel obstruction where i ripped off my toilet seat and towel rack than i passed out blood was comming out my rectum i called 911 i see my doctor a week after my ER visit he didnt care im like what is wrong with you why wont you help me ..?

  • 3 years ago

    This was a very good and true read. It’s so hard to get something for pain,due to the fact that people abuse it so much. But there’s people like me, who only want to just get that little relief to actually be able to have a normal life. It’s not that I need to take it everyday. I just need it when it’s impossible to get out of bed. Not only because of the pain from the crohn’s,but form all the other side effects that are caused from having the crohn’s. Like the joint pain,back pain the headaches that I seem to have everyday. And to top it all off you still have the pain from the crohn’s itself. From what I’ve seen from experience, it’s easier for someone to get the pain meds that have minor injuries,then it is for someone like me who has a chronic illness. Dr’s need to do there homework when it comes to giving pain meds to crohn’s/IBS patients. It’s not a joke it’s very real and it effects our lives tremendously. It gets very expensive to go the the ER every time you have pain. I mean thousands of dollars for a visit to get fluids and IV pain meds. I hope and pray that this gets looked into more and not just looked over like we’re just drug seekers. Not everyone should be labeled as an addict. I pray that everyone who is going through the same situation. One voice is hard to be heard,but a group of people that will express their voice can make a difference. God bless each and everyone of you that are going through the same situation. #thepainisreal

  • sbuckalew
    3 years ago

    I love it when I read something that reflects what is happening in my life. It somehow validates how I feel, think, or say aloud to others.
    As far as the issue with pain medications I am starting to get pretty angry. I know what I have been through trying to get what should be a simple solution to complex pain. Medication. But, like mentioned in the article I too was driving all over town trying to fill a prescription that no pharmacy wanted anything to do with. Suddenly I was a bad person for wanting these pills. I actually started feeling guilty because I was being treated like the bad guy. This has to stop!
    There must be a safeguard in place for those with a chronic illness who seek pain relief. Can’t we get something to show these pharmacies and healthcare workers that we have legit pain and should not be treated like criminals? A card maybe? A paper explaining my excruciating situation so, please don’t treat me like I am breaking the law? Clearly, I don’t have the answer, but just maybe we can find one together. Yes. The pain IS real!

  • Poll