Help!!!!

[Husbnd w/o wife]

Looking for some advice. My wife has had IC now for about7 yrs. She has tried many different things with apparently no success. Interstim, many drugs and pain patches ect. She has lost most of her teeth because she sucks on lollipops all day cause her mouth is dry. She hasn't worked in over 2 yrs.She is trying to collect disability to no avail. She sleeps on the couch 24/7. Does some light housecleaning and thats about it. She has not tried diet or exercise and she decided to start smoking even though she knows it is not good for her IC. We actually don't talk much anymore and sex is non-existent.I'm about @ the end of my rope here. Any suggestions???

[vm]

Oh, wow.... :( I think it's great you are researching and looking for some answers. Has she ever visited this site or talked to anyone with IC? That might help a bunch. This disease can be so isolating and when you feel hopeless AND like you are the only one I imagine the motivation to try things really slips away.

Bless you --- it is so hard to live with and love someone with a chronic illness. My husband had chronic back pain for a long time and I would go from feeling so badly for him to getting sick and tired of hearing about it all the time. Then I'd feel so guilty for thinking that way..... It is such a rollercoaster. :(

I think contact with other ICers might help her. I hope you have some outside interests that give you a bit of a break, too. I'm willing to bet she is at the end of her rope, too.... Have you guys ever tried counseling?

Best wishes and I hope you get some helpful feedback here,

[tigger_gal]

Dear Hubby,
Welcome to the boards, I am glad to see a hubby posting for help.. most of them don't or won't... I drink water, kool aid, all day for dry mouth.. too much candy is not good..... there are now aqua drops, not sure if there candy tho.... I never bought them.... I have IC too, and my hubby was about at the end of his rope with me.... so I kinda can relate....
the diet is very very important.. rule of thumb.. everything you east affects your bladder....
Wondering what meds she has tried.... here are some I know.. Elmiron.. urised/pyrdium, elavil, hydrozoxicen (spelling is not right) pain pills like vicodine... flexeril... others will answer with more :)
I hope your wife didnt get the interstim for pain.. because it is only for frequency and urgency.... I have one too, and still have pain every day....
I do sleep in my bed tho.... with hubby.... yes sex hurts.. but.. we have figured ways around the pain during... but the after pain .. only a heating pad and pain pills help....
You came to the right spot for support, these girls are great.....
IC can and will take a toll on your marriage..... If you let it.... I am guessing you can't possibley understand her pain.. which is understandable... but I bet she don't understand why you don't.... its a pretty tricky subject... took me along time to just give up explaining..
I hope your wife Joins us and reads our stories.. then she wil not feel alone.. Her she will have a whole family that understands.... I myself, was greatful to find this place I call my second home.....
hugs and well wishes
Brat

[Imustpee]

Hello Hubby...welcome to the board. Please ask your wife to join us and talk. There are alot of women ( And men) that know exactly what she is going through. It is very helpful to talk to others that understand. And believe me, we do.

[Ginny]

Sounds like some depression going on as well as IC. Many people with chronic pain benefit from antidepressents.

Ginny

[shennan]

my mouth is dry, too. i chew on some trident. sip water.
i have also been eating lifesavers. the sugar is terrible for ic.......
maybe she can try sugarless candy. i may try this.

have you tried getting some help form her family?

has she tried any antidepressants?

congrats to you for posting!

:) :) :) :) :)

good luck!!!

prayers for you and your wife.

:angel:

shenna

[Member has resigned]

It is hard to watch the one you love go thru this. Only suggestions is to ask her to join this board as well if she is not a member already.

Also do you have access to a very good urologist and pain management clinic in your area. These two have helped us alot. Although BCG treatment is relatively new and its hard to find a urologist or specialist willing to administer it, with a 75-85% success rate it cant be ignored. My fiancee is going through it and at least we have a light at the end of the tunnel. Pain management and therapy is extremely important as well as keeping up your self-esteem.

Be as supportive as possible yet if she is giving up, maybe be stronger for her until she can get up and going will help, do the research, take her to doctors visits go in with her. There is no reason to give up otherwise what is left. Diet is important ie: avoiding foods that cause flares, believe me its been hard for my wonderful, loving fiancee because she was brought up on spicey foods and such being from where she is from, but she would rather be better 24 hours than indulge in 10 minutes of something she will pay for in the long run.

As far as loosing teeth over sucking lolly pops, with good teeth care that wouldnt happen even if she had one all the time. She maybe suffering from other diet defiencies.

I think you need to find a good dr and pain management specialist. (if you dont think you have one already)

Feel free to contact me through email if youd like for support or whatever. Good luck sounds your very loving and patient

[Member has resigned]

I believe IC patients are suppose to avoid artificial sweetners!!! all kinds Right?

[ICNDonna]

Frustrated: Aspartame sweetener is an irritant for me, but I do fine with Splenda.

Husband: It does sound like your wife may be suffering from depression along with the IC. I encourage you to talk to a counselor, even if she won't go with you. You need some emotional support right now.

Sending warm welcoming hugs,
Donna

[work it]

:welcome: I am so glad you found all of us and sorry to hear that things on the home front are not well. You have received some good advice already. I would have to agree on the counselor just so you can be strong and understand some what. A good uroligist can make all the difference in the world so maybe you can let your fingers do the walking and call around in your area. Last but not least medication is very important not only for the IC but also for the depression.
Take care and remember you are not alone.

Teisha

[Sarojini]

I agree with all the advice you've gotten already -- first of all, contact with other ICers is really helpful, and I'd encourage your wife to join the boards here and/or find an IC support group in your area... however; I tend to like the boards best as they are available 24/7 and she can post her vents and triumphs here whenever she likes!! Also, there are generally people here to chat with at all hours, which is good too :)

I do agree that your wife sounds really depressed as well. I also think that seeing a counselor would benefit the both of you -- you need support right now as dealing with a chronic illness is really difficult. AND, she needs support and some new coping strategies! I know going to therapy helps because I see a therapist myself -- I also take Klonopin (an anti-anxiety med) and Zoloft (an anti-depressant), and these combined with talk therapy have made a huge difference in my life, so I'd really recommend this step :) Sometimes my husband comes with me to therapy, and sometimes I go alone -- it's not that we have problems with our relationship; it's just that we feel it's nice to go TOGETHER sometimes because it's a safe place to vent and then learn new coping strategies TOGETHER. We always feel closer after a session where he joins me :)