Pain killers

[Luciana]

What kind of pain killers do you take for you Crohns???

And how do you deal with the stigma of pain killers?

My fear is not being taken seriously by doctors if i ask for pain killers. That they might look at me like a drug addict.
So i often rather suffer. Or take Kratom and Marijuana. Which helps. But sometimes not good enough.

Thank you in advance for sharing

 

[Lisa]

I was never offered pain killers by my doctors - unless I was actually hospitalized with a flare. They are only a 'cover' for the problem in our case, we need to make sure that the cause of the pain is getting attention and treatment so that nothing gets out of hand.

I know there are times when something to help with pain is absolutely needed, I have a family member myself who is dependent upon strong pain killers to get through every day and night.

Make sure the doctors know exactly why you are asking, and are also working toward healing what is wrong so that you don't need to stay on them long term.

I fully understand the suffering.....For quite a while I would just suck it up and by the time I actually went to see the Dr it was usually a straight trip from his office to the hospital for a week or so stay......

 

[Bufford]

In my case what I have found is that by controling the pain helps to reduce the stress burden on the body that will help lessen the flare. Uncontrolled pain only makes my Chrons worse. Its hard to get pain relief these days given how politics has entered the medicine cabinet. I have a good doctor, and after having talked about it agreed to the percocet that has worked well for me, nothing else can even touch that pain. One has to respect these meds, and limit their use to keep them effective. I have been on them for close to 20 years, and my usage has not increased. I use no more than 2 per day on average, often splitting a tablet in half instead of taking the whole tablet.

 

[Luciana]

Thank you so much for your replies!!

I'm trying to make life as liveable and "normal" as possible, to keep functioning every day. But it's difficult.
Last three years i'm flaring a lot and trying medications after medications to try to control the inflammation.
Now i spend most my time in some sort of pain or nauseous state and exhausted. Pain is exhausting that's for sure.

Even when i had Lupus like syndrome from Infliximab/remicade, It was so painful i had to be in a wheelchair. They hesitated to give me something strong for the pain, they seemed more worried of the "addictive qualities" than how the continuous pain actually effects my body and my mental state.
I don't know which one is worse??
I've never been addicted to pain killers. So they're not even judging me for my own behaviour.
But i understand. I just wish there was another way. I just wish i had strength to do more with my life.

Controlling the inflammation is number 1. That's for sure!!!

I pray for better days

 

[CatLover63]

Hello, Sorry to read you are in constant pain.
I think that uncontrolled pain can affect not only the body but the mind. I like to be alert rather than groggy so have refused very strong painkillers over the years. I try to switch off from it as much as I can by concentrating on other things and taking my time with every day tasks.
Sometimes, the housework doesn't get done so what ? I was advised to "pace myself", alternating activity and rest. Arthritic, inflammatory, wear and tear back pain is affecting millions so we are not alone.

 

[my little penguin]

@Luciana what crohns meds are you on now ?
When was your last scope /imaging ?
Definitely talk with your Gi
As other have said pain killers are a bandaid for the bigger problem.
Pediatrics doesn’t really use them
So we push hard for the right medicine to control the inflammation
Have you tried exclusive enteral nutrition (formula only )? No side effects except for not being able to eat . In some as effective as steriods
Helps heal and gives the gut a much needed rest
Used a lot on kids

Ds was taught /shown
Meditation /visualization
Exercise daily especially when it hurts (releases endorphins which lessons pain )
Tens units
Massage
Water filled heating pads

anti spasmodic help sometimes as well
Neutrotin to less nerve pain signals

unfortunately pain killers slow the gut movement which can cause the opposite problem severe constipation which in of itself causes a ton of pain

third thing is hyper sensitive nerve signals
Your intestine has a gut brain axis so just like a tv remote button pushed too many times
When the inflammation is dramatically reduced the patient still feels high levels of pain since those nerves were over used during inflammation.
This takes a long time to calm down and hurts like the real thing

definitely check in with Gi
Figure out where you are in your flare
What maintenance meds are available
If een is available

hugs

 

[Luciana]

@Luciana what crohns meds are you on now ?
When was your last scope /imaging ?
Definitely talk with your Gi
As other have said pain killers are a bandaid for the bigger problem.
Pediatrics doesn’t really use them
So we push hard for the right medicine to control the inflammation
Have you tried exclusive enteral nutrition (formula only )? No side effects except for not being able to eat . In some as effective as steriods
Helps heal and gives the gut a much needed rest
Used a lot on kids

Ds was taught /shown
Meditation /visualization
Exercise daily especially when it hurts (releases endorphins which lessons pain )
Tens units
Massage
Water filled heating pads

anti spasmodic help sometimes as well
Neutrotin to less nerve pain signals

unfortunately pain killers slow the gut movement which can cause the opposite problem severe constipation which in of itself causes a ton of pain

third thing is hyper sensitive nerve signals
Your intestine has a gut brain axis so just like a tv remote button pushed too many times
When the inflammation is dramatically reduced the patient still feels high levels of pain since those nerves were over used during inflammation.
This takes a long time to calm down and hurts like the real thing

definitely check in with Gi
Figure out where you are in your flare
What maintenance meds are available
If een is available

hugs

When was your last scope /imaging ?
- Last week. Colonoscopy.

Definitely talk with your Gi
As other have said pain killers are a bandaid for the bigger problem.
Yes pain killers are definitely not the solution.
Sometimes i just wonder how much pain you are suppose to withstand?
I guess i'm just a little sad at the moment. Why i ask all these questions.

Have you tried exclusive enteral nutrition (formula only )? No side effects except for not being able to eat . In some as effective as steriods
Yes i have. And i also been on liquid diet for three months.

Ds was taught /shown
Meditation /visualization
Exercise daily especially when it hurts (releases endorphins which lessons pain )
Tens units
Massage
Water filled heating pads

I meditate and i do yoga. Sometimes i just don't have enough energy to do a lot more.
I use heating bottles. Take warm magnesium baths. Massages can feel like too much pressure.
What's Tens Units? And D's?

anti spasmodic help sometimes as well
Neutrotin to less nerve pain signals
I am not familiar with those. I will read up on it. Thank you!

unfortunately pain killers slow the gut movement which can cause the opposite problem severe constipation which in of itself causes a ton of pain.

Yes, i would never want to live or take pain killers every day. But when it gets really really bad. I cry because i am too ashamed to ask for help. because of the stigma.

third thing is hyper sensitive nerve signals
Your intestine has a gut brain axis so just like a tv remote button pushed too many times
When the inflammation is dramatically reduced the patient still feels high levels of pain since those nerves were over used during inflammation.
This takes a long time to calm down and hurts like the real thing

That makes a lot of sense!!

definitely check in with Gi
Figure out where you are in your flare

I am in a flare rigth now.

What maintenance meds are available

I am on Stelara 90mg / every 8 weeks
Prednisone - tapering (for almost 2 years) i can't seem to get off it without ending up in the hospital.

I've already been on Imuran, Remidace and Humira. But after a while they stopped working.

So i'm having a 2nd opinion at a new hospital tomorrow.
They will see if i can up my dose of Stelara to every 4 weeks instead of every 8 weeks.
Or another option would be to go on a trial of Ozanimod or Janus kinase (JAK) inhibitor.

My Little Penguin! Thank you so so much for your time
Hugs

 

[Luciana]

Hello, Sorry to read you are in constant pain.
I think that uncontrolled pain can affect not only the body but the mind. I like to be alert rather than groggy so have refused very strong painkillers over the years. I try to switch off from it as much as I can by concentrating on other things and taking my time with every day tasks.
Sometimes, the housework doesn't get done so what ? I was advised to "pace myself", alternating activity and rest. Arthritic, inflammatory, wear and tear back pain is affecting millions so we are not alone.

Thank you so much for your words. It's all about finding a balance. Wish you the best!!

 

[my little penguin]

Ds (darling son ) my son was dx at age 7
Now 17
He is on Stelara
Stelara at 90 mg every 8 weeks was not enough
He switched to Stelara every 4 weeks and in about 4-8 weeks he was so much better
Now no issues

he also takes methotrexate to boost Stelara
He has been on this combo for 3 plus years

tens unit
Is battery power that send electrical signals to your nerves to it blocks pain signals to your brain

https://www.medicalnewstoday.com/articles/323632
Ds was given one at age 7
So not dangerous at all
Sometimes takes the edge off

 

[Luciana]

Ds (darling son ) my son was dx at age 7
Now 17
He is on Stelara
Stelara at 90 mg every 8 weeks was not enough
He switched to Stelara every 4 weeks and in about 4-8 weeks he was so much better
Now no issues

he also takes methotrexate to boost Stelara
He has been on this combo for 3 plus years

Oh wow!! Ok that makes me very hopeful. Thank you for sharing. I hope this is an option and that it will work for me too!!! All the best for you and your son

 

[laneyoakley]

Has anybody asked there doctor about taking Sulfer? I have Chron's, and 15 years ago they put me on Sulfur a huge Dark yellow pill that was not coated. I can't remember dosage at the time. But I took it for 4 years faithfully had my colonosposy's regularly and after many abcesses etc. I went into remission. 17 years later I have become active Chrons agian unfortunately but that worked really for me. There has been so much that has come since then but it could worth a try for some of you. Just a thought.

 

[Jo-mom]

I believe you may be referring to the medication "Sulfasalzadine", which isn't the typical medication for people with crohn's although some people with mild crohn's or colitis might find it helpful.

 

[Luciana]

Has anybody asked there doctor about taking Sulfer? I have Chron's, and 15 years ago they put me on Sulfur a huge Dark yellow pill that was not coated. I can't remember dosage at the time. But I took it for 4 years faithfully had my colonosposy's regularly and after many abcesses etc. I went into remission. 17 years later I have become active Chrons agian unfortunately but that worked really for me. There has been so much that has come since then but it could worth a try for some of you. Just a thought.

I also used to take those dark yellow tablets ""Sulfasalazine" when i first got diagnosed and they did work!!
I think back in the days they were the first meds they would give to Ulcerative Colitis patients? But eventually i had to move on to something stronger, when they realised i had Crohn's and not U.C.
Wish i could've stayed on those tablets forever. 3 tablets 3 times a days. But i was a young teenager at the time and i thought it was annoying having to take medications at all, especially all day every day. Now i dream of those easier days

I don't know if other Sulfur products taken in other ways help?

 

[my little penguin]

Sulfanazine/5-asa (Pentasa asacol etc..) treat only the inflammation on the TOP layer of the intestine similar to a cream
This is why it’s used abd effective for some UC patients -UC typically only affects the surface
For Crohn’s disease the inflammation goes through the entire thickness of the intestine
So while the top layer looks /feels better. The layers underneath are left to simmer in inflammation
That is why the Cochran report does not recommend sulfanazine /5-asa as a monotherapy fir Crohn’s disease

 

[CatLover63]

Hello,
Some pain relief includes swimming in a warm pool, soaking in Epsom salt baths, applying heat, avoiding the cold, not walking for too long, having a pet like a cat to release endorphins, using essential oils for massage, not wearing tight clothing or shoes.

 

[Luciana]

Hello,
Some pain relief includes swimming in a warm pool, soaking in Epsom salt baths, applying heat, avoiding the cold, not walking for too long, having a pet like a cat to release endorphins, using essential oils for massage, not wearing tight clothing or shoes.

I love cats they are like a cuddly hot water bottle with feelings!!!
I miss my cat so much i will try to find a new one

I swear by Epson Salt Baths too!

Thank you CatLover63

 

[Bufford]

One of the best pain killers that I can think of is a cat that is warming my lap. The big orange striped one makes for a good prescription.

 

[Mountaineer01]

Not trying to sound harsh, but one thing I've found that's helpful is describing where the pain is and what it feels like. Medical personnel tend to pay more attention to someone who is able to give a good description and who seems serious about solving the problem versus asking for medicine for pain. The pain could be a symptom of something else underlying that needs to be addressed.

If you have a history of strictures or bleeding, they aren't going to give you anything in the NSAID or opiate categories. Since you mention you had issues with addiction in the past, it's probably best to avoid opiates anyway. When I was in the hospital with a kidney stone a couple of years ago, once they found out I had a history of GI bleeding and strictures, the only thing they would give me was Tramadol, saying it was less risky than the standard morphine or vicodin.

 

[HannahSmith]

Depression is an attempt to avoid feeling. A depressed person considers his character and personality essentially the result of years of self-destructive defense mechanisms trying to isolate him from painful or disturbing emotions. But emotions carry essential information about life. Trying to avoid them wastes our mental energy and deprives us of vital signals. In addition, we can't prevent only unpleasant emotions, so we miss out on the good ones as well. We anesthetize ourselves-and discouragement develops. Therefore, it is necessary to use good medicine