Crohns for 28 years.

[Nighthawk]

First, let me introduce myself. I’m a crohns patient for the past 28 years. I was 28 when first diagnosed and I’m 56 as we speak. I had two resections of the ilium in 1985 and 1996. I’m trying to stay off a third and giving it my all. I refuse to go on biological drugs as the black warnings keep on growing. I do not take 6MP either as the issues that also cause. I do it may way. I take prednisone to keep me out of the hospital when a blockage is beginning or the flare is getting really bad. I do what I call the Poison Ivory regiment where I’m on for 12 days top and then get off. I also take entocort for 2 90 day cycles then stop then do on 4000mg of Pentsa for the rest of the time. I also follow the SCD diet the best I can as I stay away from refine sugar and bad carbs. I just had a bad partially blockage and was admitted to the hospital. I have to tell them to put me on intravenous of prednisone along with 4 to 6mg of HydroMorphone every 2 hours. The one thing I have fought for in using Oxycodone for the pain. I had a wonderful doctor who would prescribe until he got nervous. I go to a Pain Center for the oxycodone as I’m always in pain from crohns in which I’m high doses from 45mg to 90mg every 6 hours every day. I have gotten off pain meds by cutting down after my surgeries and it was easy. We are not drug seekers but we need pain relief as I’m sure all of you know crohns is very painful. I have to fight all the time to keep me on that dose that I have been on for 5 years with no increase in pain meds it always works. I believe once the drug works at a high level it stays that way no increase. Please fight for yourself you are not a drug addict. I would trade my pain meds for no crohns in a heartbeat. I hope in Mass they pass pot so I can cut down on the IR oxycodone. It will be lawful for crohns patients if it passes in November. Anyway, if anyone wants to talk about my experiences or if I can help with your pain fight with your doctors. I can share my determination on getting to live life in less pain.
Regards NightHawk “Ray”

 

[Trysha]

Hello Nighthawk,
Welcome to the forum.
Just wanted to say hello .I do not have the level of crohns that you do.
When I have bad pains I use heating pads and hot water bottles and if the circumstances are dire enough then some tylenol.
I try to avoid pain medications like the plague since my renal function is lacking.
Best wishes
trysha

 

[David]

Hi Ray, it's great to have you here bud Please let us know if there's ever anything we can help you with.

 

[Nighthawk]

Thanks for the welcoming!!! It's great to be on a site where we can share about crohns
Ray