I am in the middle of a flare-up, the first since I had my surgery in November. I was in the hospital for a weekend about a week and a half ago. Imaging didn’t show much in the way of significant strictures. Alkphos was about 600, but dropped to 400 before I went home. I was on antibiotics and had pain meds to help manage while the antibiotics did their thing. Well, pain meds are gone, alkphos is still about 400 (fairly normal for me.) But I’m still in pain. Lots and lots of pain.
I live in a rural area, and doctors are thin on the ground. My GI is good, but even for a follow up, I can’t get in to see him until mid-July. My soonest appointment with primary care isn’t until June 10. In the meantime, being a stay-at-home mom with a rambunctious one-year-old is very rough without pain management.
Is there anything other than prescribed pain meds that I can try to help bring it down a notch? Anything that works for you guys? Tylenol does nothing, and I can’t take ibuprofen.
Hello, I’m sorry you are having so much pain. Could you call the doctor on call tonight, or leave message on the MD’s nurse line. All practices are required to have a back up plan which may be emergency room. Without knowing more about the characteristics of your pain, I could not offer more than encouraging you to find away to inform your MD when pain is not well managed in spite of their last recommendations. I pray you get relief quickly.
I called and asked, but the only back up plan they have is the ER. Which, thankfully I live close, should it come to that, but I am not quite at ER levels yet. I would like to avoid that if I can... Bluh. Thank you anyway. :)
Dear Anna,
I trust you know yourself best. Just a gentle reminder that pain unmanaged can lead to complications, and is harder to control again once it gets out of hand. I don’t know your circumstances around the pain, but…physicians usually prescribe enough to see you through, and if it doesn’t they want to reassess because something could be amiss in your condition, or they want to make adjustments to the plan. I hope you have some help with the baby, as you may be doing too much also.
Also Anna…you said it’s about a week and a half after antibiotics, infection could be building again. Think of how you felt before antibiotics, and compare. Especially note, increasing abdominal tenderness, fever, and chills. Side note: it’s possible to only notice chills.
When I’m sure it’s not infection, I have some relief with a heat pack across my upper abdominal. Sometimes it’s very comforting. But, if you have signs of infection, I wouldn’t do that. Maybe start taking your temperature regularly, incase you have a low grade fever. Also, hydrate well, and eat very light to rest your Liver, and whole GI system.
Pain meds have helped my husband through many rough patches. I agree with an earlier response that if you let it go too long it can be so hard to manage in the ling run. I know it is difficult with a small child but maybe even at night if you could get some relief from pain meds that may help some. Good luck. Thinking of you.
Milk just messes with my stomach. Bad idea when I’m in pain.
I have considered going to the ER. Especially because it gets so much worse at night. But we can’t afford for my husband to miss more work. We do have some family support, but nobody available to care for my son 24/7 while I am in the ER/hospital.
I have not noticed any chills. I absolutely have abdominal tenderness. Almost can’t touch it. Movement or exertion is very painful. At the very least I guess I call again tomorrow and see if they can get me a phone consult. If it gets unbearable I will go to ER and just deal with the rest as it comes.
Thank you for your help, everyone.
Every day and every night I have pain; from many years ago I tried to found best way to decrease pain.
I experiment many ways. Finally I understood milk can reduce pain better than other ways. When your pain started or you woke up at night because of pain you drink a mug of milk and after 5 min you will bring relief.
Try it .
My PSC started from 3 years ago and I do much treatment.
I am lactose intolerant, so aggravating my bowels doesn’t sound like it would be worth whatever benefit it could offer. Regardless, I am now home from the ER with pain meds. Now as long as I can get in to see my doctor within that amount of time, I have at least some hope of riding it out. Thanks, all.
Hi Anna
My pain routine includes a warm bath with Epsom salts - to relax the muscles that go into spasm along with the pain. It just soothes the rest of my body.
Also, EFT can help (the tapping thing). If all else fails, Imdo the pain meds, but I stay away from the highly addictive stuff.
Hope you are feeling better today!
Ruby
"Pain management" has been my biggest challenge for the 20+ years I have had PSC (and Ulcerative Colitis).
I was constantly arguing with my GI/Liver Specialist about my pain. According to him though, I "wasn't in pain." He once told me (while I was splayed prostrate on a gurney getting prepped for an ERCP) "You're not in pain! The liver is an organ; it can't FEEL pain!" Hmmm. Perhaps he should READ a bit more, or LISTEN to his patients.
It was my GP who finally sent me to a pain specialist at our local University hospital and together, we got my pain under control after many, many months of trying one drug after another.
The answer for me was a combination of NARCOTICS and ANTIEMETICS (but remember, each of us is different). A HEATING PAD was beneficial for a very short time and a fundamental change in my DIET has also been helpful. I should add that ACUPUNCTURE was showing tremendous results. But because the cost is not covered by our healthcare, it became just too expensive.
Of course this info is only helpful if you have access to a pain specialist within a reasonable amount of time. In our city (in Canada) we are blessed to A) not have to pay for most healthcare and B) have access to a facility that houses all of the medical specialties under one roof: Pain Management, Diet, Blood, GI Clinic, research, surgery, transplantation . . . THE EDMONTON CLINIC
What seemed to work for my mom was acupuncture and massage. The acupuncture helped with the nerves that were firing and the massage helped with the muscle spasms in and around the abdominal area, stomach and low back. We also tried to use oils from a company called Young Living. They were effective towards the start of the pain, and took an edge off the pain when it was full blown, but it did not get rid of all of it when it was that bad.
A major change in diet helped her episodes to reduce in frequency.
She tried pain meds, but her alkphos went up, so they had an effect on her liver and she could not use them anymore.
I wish you good luck getting the pain under control and will send you prayers for this flare up to subside. It is hard to be upbeat for your one year old when you are hurting so much. I will keep positive thoughts for you that you get through this flare up quickly!