How to help an IC patient I love very much

[justwanahelp]

I am hoping that I can get some advice on here from people with more experience and knowledge than me. My wife is diagnosed IC. The instillations helped a little then stopped really doing anything so she stopped going. She takes mybetriq (sp?) for spasms and a lot of AZO. She had a lot of UTI's and was on a lot of antibiotics for them, then a maintenance dose for a while but stopped because Dr. didn't want to go too long term. I love my wife very much, we have kids both work and so our lives are very stressed. I try to do what I can to help her, doing housework laundry and whatnot. I don't do this just because she's sick of course, its my house too but I try to always be the one to run to the store if we need something or whatever I can to take as much of the load and stress off of her and to help her relax. I know stress is horrible for everyone but for IC patients the stakes are higher.

My main concern is that I don't know what to do. She won't talk to me about her condition and gets upset if I try to. I have read on here and other places of things to try, or of possible other causes of her pain like PFD (which I know can be an and not an or). I have read of things on here and elsewhere that have helped people ease pain, stop or prevent flares but when I try to bring them up she gets upset and I feel like a nag. She seems to be resigned to just dealing with it and expects me to just accept it as well. Problem is it doesn't just affect her as I'm sure most spouses of IC patients understand. I can't stand to just sit by and watch her suffer but my attempts at helping lead to arguments.

I would welcome any thoughts or advice. I am fully prepared to accept the possibility that I just don't get it and should be more patient, understanding and mind my own business or that I am a selfish nag but I really don't think I am. I hope and pray that I am not, but if that's what people think then please let me know so I can work on me and leave her alone if that's what needs to happen.

[icshorty]

Re: How to help an IC patient I love very much

I am sorry for you guys-IC is a tough one. I got to a point where I just didn't want to talk about it anymore & preferred to suffer in silence (of course by then I was fairly depressed too).Some thoughts-have you both watched the IC Network videos by ICN Founder Jill Osborne RN? They are found on the front page of the IC Network-accessing them is easy,but their existence there is not obvious. The videos about the 6 steps of IC treatment established by the AUA and another about the sub-types of IC are especially informative. Your wife has many more options for treating her IC and having the AUA guidelines may help her discuss options with her urologist who may not be thinking outside of his or her own box. Also,regular use of AZO is not recommended-I believe it can be hard on your liver. In Canada it is available only by prescription because of this.Is your wife following the IC diet strictly? The diet can be such a big part of managing IC. And yes to exploring the potential relief that PFD PT can offer. My uro thought I did not fit the profile for a PFD patient,but Iasked her 3 times and she finally gave in-I am a new person thanks to it! Lastly,you might consider a session with Jill on the phone - she is a wealth of information since IC is her focus (oh,and she has IC too,so she "gets it"). I got as much from my consult with Jill as I did from the first 2 appointments with my uro. And she's the one who encouraged me to ask for pelvic floor PT again-(and then I could say the IC Forum RN told me I should try it.). But maybe before you try any of these ideas,you need to seek counseling with a person who is familiar with families dealing with chronic illness. They could give you some tips on how to make progress- who knows,maybe even could lead to some couples counseling sessions. This must be a real crisis for you to stand by and watch your wife suffer. She is lucky that you care so much and support what she needs to get better.Now,if you can only get her to have hope and try! Hugs,shorty.(ps,when my husband Mr IC expert suggests things to help,it ****** me off too) oh,ps look up d mannose here,lots of people take it to help prevent recurrent uti's)

[Mothergoose]

Re: How to help an IC patient I love very much

It is quite sweet of you to show such concern for your wife, I hope she appreciates you, sometimes with IC it overwhelms you and All's you can do us exist.

It is hard to process that you are often young and have to deal with this life long, some people need to take time to get used to this idea.

The thing is with IC there are treatment's, it is worst in the beginning, finding out what you have then finding the right treatment for you can take time, our bladder heal way slowly, I often hear how people feel something doesnt work example the diet, but the diet can take months, people want quick fixes, so they want to give up if what ever you are trying dosent work.With IC everything takes time.

I have had IC all my life, it got bad about 17 years ago, and I started looking for treatments. I remember lieing on the bathroom floor, b/c I peed so often it was not worth trying to get out of the bathroom. I cried it hurt so bad, I didn't sleep which gave me migraines. I could not see the light at the end of the tunnel.

I felt I let my husband and kids down, not being able to do what I normally did. I felt no one understood the pain I was in or how I felt.

Over time little by little my symptoms improved. The biggest help was following the diet, really learning the diet. For me now I know what I can and can't eat. I can cheat with just about anything in small amounts, but nit everyday. I found a couple if medications that helped along the way. Treatment is so different for everyone, and each dr wants to do it a different way.

What was a big turning point for me and my husband was he started coming to all my Dr appointments. My doctor would explain everything to him, it helped him to understand what was happening to me, what meds we were trying, expected outcomes and side effects to watch for, when to increase dosage etc. I didn't have to come home and try to explain it all.

My life is pretty much normal now, I still get flares but that is just part of my life. I go out to eat, I go to other people's houses. I sometimes eat before I go, or take my own food. You just have to be happy to be able to go be with friends and out and about, give up on food being the focus of social gatherings. I guess food and drink.

Another big one us to drink water, it is hard to find other things to drink, some people can drink some herbal teas, some can drink some juice, some can drink low acid coffee. Your wife might not be able to drink any of theses to begin with, but maybe able to once her bladder has healed some.

I drink lots of water it helps me, I drink Disani and Aquafina, and bottled Sam's club.
I don't do well with filtered waters, I have reverses osmosis at home, I can not drink this. Some bottled water is city water filtered I can't drink though's, but people differ with water too.

Well that will get you started