Pain management for Pancreatitis

Leanne-

Looks like AZ could use some help in the PM area.  I live in Tucson and am having the same problem.  Luckily my PCP and everyone else at Carondelet have been wonderful.  Last Tues, the 20th, I made sure I made contact with her office before the Thanksgiving holiday because I'd been taking hydro about every 6 hours since Sept. and it was starting to not work.  I haven't been eating and am down to 96 lbs and the only thing I was looking forward to on Thanksgiving was football.  I give thanks every day and will have turkey soon. 

Got a call back the same day and was put on the morphine sulfate extended release but have the hydro just in case.  I didn't even have to see the doc, just go in to pick up paper script because it's a narcotic.  I did end up calling the pharmacy that night because I wasn't told there could be withdrawals from the hydro.  Felt like a sudden case of the flu.

I have just started eating again and haven't had diarreha but haven't been "regular" for a while.  Luckily cheese and veggies don't bother me too much so far.  What have you been eating?  One of my favorite things is Rice a Roni Four Cheese or Broccoli Au Gratin with either baked chicken or tuna and, as always, 3 Creon 10 for an appetizer.  It's so hard to get proper nutrition without something happening - pain or little absorption by the body.

Wish I could help more but I would definitely be on the phone to the doc first thing Mon. morning.  Till then, pamper yourself and try and have some time to yourself. 

Big hug, no stress, no pain!

Kubladi 

 

Thanks for the info, I just got home from the hospital today. I have been in there for 8 days, came home with a PIC line and I am now on TPN. Hope that you are doing well.

Take care, Leanne

Thanks for your help. I just got home from the hospital today, have been in there for 8 days. I now have a PIC line and I am on TPN. My Doc switched me back to Viokase so I hope it helps with the pain. Hope that you are doing well.

Take care,
Leanne

This is in reply to Pippy’s message about the doctor saying that if it is “acute” pancreatitis there shouldn’t be any pain…MY DOCTORS have never said that to me. Mine is still classified acute because I don’t have constant pain like those with CP have…and I feel bad saying that because I know that a lot of you have more struggles than me.
With that being said, although I have Acute pancreatitis - I can have very severe pain at times. But, not all of my flare ups are as bad as the last one, etc. By far, the one I had in late October was the most painful one I have ever had, my whole body was buzzing. Thankfully, after a week of water and being bed ridden (I stayed at home under careful watch of my saintly mother) - I was able to feel a little normal again.
My docs treat me with enzymes, a daily acid reducer, anti nausea drug (as needed) and T3’s. And, I watch what I eat too. There is a learning curve with that, it takes some time to figure out what is best and I think it is a little different for all of us.
I had a different GI doctor at the beginning of this experience. He refused to believe me that I wasn’t a drinker. He wouldn’t get past it. I had a wise old friend tell me that if you don’t like your doctor, you should find a new one. I went back to my internist, and she found me a great doc!!

Leanne,

You are now on TPN. My doctors do not believe in TPN as a form of
therapy for CP. Can you tell me your history of Pancreatitis and CP
and how the doctors decided that you should be on TPN? Can you also
let me know who your doctors are and where they practice? Thank you so
much.

Anyse

Hi Anyse,
Just read your previous message and was surprised that your drs don’t believe in TPN as a form of treatment!! With my daughter (we live in Pa. but go to Hopkins for her specialist) ANY GI dr will put her on that in either hospital we go to. She of course hates it, but if she asks for it to rest her pancreas for a couple of weeks they always give it to her. Here at our local hospital we are lucky(?), if you call it that, that the GI dept follows whatever she wants because they so rarely see hereditary pancreatitis-they also don’t know what to do about it either, so when it gets out of control we have to head to Maryland. I too assume since they all have been seeing her since she was 12 (now 19) they know her case so well. Last year she was on TPN for a month and it didn’t help her at all-pain never came down, that’s why she had Puestow done.
It does keep weight up and very important to have with this disease-I hope you don’t have to fight too hard to get TPN. You shouldn’t have to explain to any dr this-they should be listening to you more. I hope you are doing better and enjoying the holidays. Thoughts and prayers are with you-please take care.
Terri

Anyse,

I have had Pancreatitis for a little over 3 years. My husband and I actually think it has been longer, there were many times that I went to the hospital and they told me that I had the flu. I have idiopathic Pancreatitis, no rhyme or reason. This time when I went to the hospital I was suffering from malnutrition. I have not been able to keep food in for about a month. I live in Phoenix and there are no specialist here, so I go to a regular GI doc. Hope that gives you some info.

Take care,
Leanne

Hi!!! I just had my appt. with Dr. Goldberg and I thought of you. We decided to lower my patch dose and stay on the pain pills. When is your appointment? How have you been doing? Pain wise I have been doing some better. One thing that I decided to try/do on my own is vitamins. I think like most of us we have very poor diets. I don’t eat meat, fresh fruit or veggies, limit my dairy, and very low fat. So I take a 1 a day, iron, B complex. I noticed a difference after a very few days. I am not as tired and lethargic. I’ll probably post this info some where because I wonder if anyone else has tried vitamins or anything else that has helped.

I’d love to hear from you. My home e-mail is LKnisley@carr.org and I can always e-mail from work (M-F) L.Knisley@BWIDistribution.com

Wishing you well!!
Leslie
(aka Ponigirl)