Actually just being there, supporting him, understanding and learning as much as you can about
this to help advocate on his behalf with the doctors is a big help. When they are in major discomfort it is hard to focus and concentrate so your research here will be of great assistance.
As my husband's UC got worse and we were trying different things, different meds I kept and do keep an up to date listing of meds - each time you update it be sure you have a copy of the prior listing and date so you can refer back. I have a detailed listing of the darn prednisone from day one. The different doses, tapering etc.
He has 5 different doctors for different specialties - keeping everything straight sometimes gets me crazy. I am trying to keep detailed notes of every test, labs, and be sure to get copies of everything from the doctors to have for your files. The better notes you keep it helps if the insurance or billing gets messed up too.
Depending on how much discomfort he is in - if you can accompany him to the doctor appts and take notes and bring your list of questions or concerns and write down the responses. It is amazing how you can walk out the door and forget what was said to you 15 minutes before. I do most of the driving so he doesn't have to contend with it.
A sense of humor is so very important. Regardless of how lousy things may seem to be there is always something funny to relate to. I let him have the bedroom until I am ready to go to sleep. The bed is motorized and he likes to watch tv with it raised. So when I come in to bed there is usually things to talk about
usually from this forum. It's amazing how we are lying there and most of the conversations end up with a funny twist and we are laughing like crazy about
something. We are both by nature very upbeat anyway so we can find humor in most things.
Another thing that really helped him alot when he was flaring was a good back rub and rubbing his neck and head. It just kind of took his mind off the discomfort and helped to relax him. Some nights it was more effort than I liked but I'm the lucky one who is not sick with this.
Last but certainly not least - mood swings or personality changes depending on the meds, pain and discomfort try to ignore it. If his nature is such that his behaviour
is out of character then you know it isn't him - it's the UC making him act that way. That's not to say that I haven't flipped out a little myself when he was being a jerk...lol. A few times it was necessary and he quickly realized what he was saying and was sorry. Thankfully that is over and done with and I also know when to suggest something or basically keep quiet if it looks like he is not having an easy time of it.
Good luck............take each day as it comes and keep the communication
open to be able to cope and deal with it together.
60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided ulcerative colitis now & fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07 July 07 starting to feel somewhat normal 75mg Imuran 40 mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs Morphine Sulf 15 mg twice daily)Colocourt enemas at night.