wife of a IC Patient

[mitzie47]

My Hubby Terry wrote in this morning. I just thought since maybe most are women that are effected by this serious problem that hopefully there is a male out there somewhere that he could talk with. He is so much constant pain that I dont know how to help him at all , except pet his leg and tell him wish I could do something to help him . We do have a eur. dr that is trying to treat him with Phenazophyridine,Elmiron, Hyoscyamine,uroxatral, and he is on Ultram for pain. most of these med's he has been on for 4 months now . we are told it can take up to 6 months before we see any results. So geeeeezzz we wait . Hope maybe some of you all have tried some of these meds and can say if they took that long to help or if they are helping at all . We are tring to keep upper lips through this ordeal but it is a hard stuggle for him . :headbang: is sometimes what he feels like doing to himself , if u can understand that feeling . Thank you all very much for this site we have just discovered it.

[VickiB]

Hi Mitzie47,

Glad to have you join us!

There are some males on the board and I'm sure they'll come along and post to your husband's message. -They just seem to visit less frequently and don't tend to "yak" as much as us females!

Lots of the IC experience is like beating your head against the wall, -I've always thought that icon very fitting! All we can do is keep on keeping on. Eventually (hopefully) finding that magic bullet that works and brings relief. I can imagine your feeling of helplessness when it comes to Terry's pain, but can tell you that that touch on the leg from my hubby means the world to me when things are dark! I think it's wonderful that you are here, trying to learn how to deal with his IC too. So many spouses leave their other to deal with this totally on their own.

If you haven't already, please do check out the IC diet. It made a huge difference for me. A list of commonly offending foods can be found here:
http://www.ic-network.com/handbook/diet.html#list
I printed this and carried it with me in the beginning. Especially useful when shopping!

Again, welcome!

Vicki

[mayray518]

I feel so bad for your husband. There are a few men on this site that he can talk to and certainly us women also. It is a disease that affects both sexes and we all understand how it affects relationships. This is an excellent site to come to.

[SharonA]

Hello and :welcome: to the ICN to both of you.

Yes, there are men who come here every now and then. I am sure one will be around, soon.

Terry...Just because most of us are women does not mean that you are alone in this. We all understand what IC does to someone who suffers from it. We are here to help anytime you need us. We all have bladders...even if most of them are female ones. ;)

Mitzie...Your husband is very fortunate that he has a caring wife to support him. That is the best thing you can do. Hold his hand, pet his leg, give him as much love and understanding as you can. That kind of support is very important.

:) :) :)

[Trying2Cope]

My Hubby Terry wrote in this morning. I just thought since maybe most are women that are effected by this serious problem that hopefully there is a male out there somewhere that he could talk with. He is so much constant pain that I dont know how to help him at all , except pet his leg and tell him wish I could do something to help him . We do have a eur. dr that is trying to treat him with Phenazophyridine,Elmiron, Hyoscyamine,uroxatral, and he is on Ultram for pain. most of these med's he has been on for 4 months now . we are told it can take up to 6 months before we see any results. So geeeeezzz we wait . Hope maybe some of you all have tried some of these meds and can say if they took that long to help or if they are helping at all . We are tring to keep upper lips through this ordeal but it is a hard stuggle for him . :headbang: is sometimes what he feels like doing to himself , if u can understand that feeling . Thank you all very much for this site we have just discovered it.

Hi,

I'm a man with IC, and trust me when I say I feel your husband's pain. Some people respond differently to medications, but the Elmiron IS working for me. He will have to take it for awhile before it kicks in. Also, make sure he is taking it as directed. I had a hard time taking mine 3x a day and an hour before eating or two hours after eating, so I take two pills first thing in the morning before breakfast, and then another one in the afternoon between lunch and supper.

If your husband isn't doing the IC diet, he should. I have found several foods which set me off, as well as my tap water. I only drink spring water now, and it has to be a certain kind (NOT Dissani!). Also, if your hubby has constant burning, go to a health food store and find find some corn silk capsules. They are just capsules with corn silk in them, but for some reason they really do help with the burning sensation. Some people have luck with glucosimine condroiten (the stuff people take for their joints). That is also supposed to help with the burning. Drinking lots of water helps, but not TOO much water. He could run the risk of actually diluting his medication. I do fine with about six cups of water a day. Most doctors recommend eight.

When I was first diagnosed, I had some sexual side effects (failure to get or maintain an erection), but that was due to the pain I was in. As his pain eases, sex will become easier. He will just have to experiment with you and find out what feels best for him. I'm happy to say there IS sex after IC diagnosis, but it will be different, and maybe not as often as you would like. I have other suggestions elsewhere on this forum under the "Sex and IC" section.

By the way, I'm no expert. I'm currently in a flare because I ate chili dogs tonight. I knew they would bother me, but well....I LIKE chili dogs! LOL!

I hope your husband feels better soon. I used to feel like there was no hope, but I do feel as close to normal now as possible.

[mitzie47]

We want to thank all of you for your responses . You all have already been an encouragement to us both . ( and terry is finding out he is not alone with this pain.) Have any of you all tried a water filter system for the tap ,, we were wondering if that may or may not help the tap water problem , meanwhile we do buy botteled water and it seems to have helped some. We are willing to try anything anybody suggest to us at this point , Angain am so thankful we have found this web site and all of you all.

Terry and Anita

[ScottR]

Mitzie: I am a male with IC. Had 3 flares in 15 years with the last being the worst.
I took some acid breakers and found some relief. I have also changed my diet radically
and found some dramatic results in my suffering. I am also on CystoProtek. Have also added Aloe Vera Gel. The diet is a hard thing to follow and takes discipline but the alternative is not desirable.
A caring, supportive and understanding spouse, friend, or relative is just as important as all the medicine in the world.
ScottR

[Trying2Cope]

We want to thank all of you for your responses . You all have already been an encouragement to us both . ( and terry is finding out he is not alone with this pain.) Have any of you all tried a water filter system for the tap ,, we were wondering if that may or may not help the tap water problem , meanwhile we do buy botteled water and it seems to have helped some. We are willing to try anything anybody suggest to us at this point , Angain am so thankful we have found this web site and all of you all.

Terry and Anita

I tried the PUR water filter, but the chlorine in the water still irritated me. I find it best to use bottled spring water, but that's just me. Everybody is different. Also, I have had a lot of success using TUMS to reduce the acid in the foods I eat. Just make sure he doesn't use the fruit-flavored antacids, because they have citric acid in them.

[ScottR]

TryingTOCope:
You have to have an RO system for your water. I use a system that Costco sells made by "Watts Premier," that has a 5 stage filtration RO system that fits under most sinks. Sink top or non RO will not filter out clorine no matter what they claim. I have used this system for 7 years and it test very well.

Good Luck, ScottR