New UC wife - Needing advice...

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FosterDad's Wife
New Member


Date Joined Aug 2007
Total Posts : 1
   Posted 8/17/2007 9:23 PM (GMT -7)   
My husband has just been diagnosed and is having extreme feelings of guilt with how this has been and will continue to affect our family.
 
I have already tried to convince him that somehow everything will be okay and that whatever happens, we will work it out. I don't want to make him feel like I am trying to be a "Get Well Hallmark Card"...what has helped you in regards to support from your spouses?
 
Any advice, comment will help. Thanks!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/17/2007 10:05 PM (GMT -7)   
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.


flash123
Regular Member


Date Joined May 2007
Total Posts : 34
   Posted 8/18/2007 2:50 AM (GMT -7)   
Hi There
 
After i noticed i was rectally bleeding, i was diagnosed with Ulcerative Colitis back in February of this year.  I also noticed extreme changes in bowel habits.
 
My partner has been so understanding, but he is a very calm and loving man anyway.  I often get very bloated feelings, together with aching joints and severe tiredness.  I find it hard to sleep now because i get severe temperature increases in the body and the worst part of UC is that you never know when you need a toilet and sometimes it is very hard to have a bowel movement for days.
 
My doctor put me on Sulfasalazine tablets which seem to have improved the number of flare ups i have and i have started to take cod liver oil capsules and calcium tablets to help with the joint problems.
 
I often feel i have mood swings and actually took a bit of time off work because i was depressed and felt out of control with my own body.
 
I think all you can do is be there for your husband and tell him that your feelings for him are exactly the same as before he was diagnosed.  Because of the nature of the illness, it is quite often embarrasing and it gives such an insecure feeling.  Accepting the illness takes a while and i have only just begun to come to terms with it. 
 
You are obviously a very caring person and i am sure, given time, he will begin to accept things because you are prepared to learn and support him.  Good luck and i wish you well.
 
Julie

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 8/18/2007 5:18 AM (GMT -7)   
Hi and Welcome! I just think it is awesome that you are posting here. While my husband is understanding I know he doesn't fully get my conidtion. I think the key is to be supportive and to encourage him to take his meds. If he has a big doctor's appt. you may consider going with him. I always got so overwhelmed at the doctor and would forget half of what he said! Feel free to ask any more questions you have! We have lots of spouses and parents of UC kids that post here.
Tabitha

100mg Azathioprine, 2 Fibercon, Colazal-9 a day (attempting to cut this down to 6 by slowly tapering), acidopholis pearls, just added Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum

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