Newly married with IC wife

[hogg297]

I've known my wife for years and we were just married last month. In early December she was diagnosed with IC. We are young, athletic, and active people. The news was very stressful to her as you can immagine.

We have educated ourselves on the disease, but right now she is tired all the time and in pain constantly. I try to reassure her as much as I can, but I afraid depression is going to set in soon because she is not herself.

Suggestions please or strategies. Thanks.

[vm]

:welcome: Has your wife visited the ICN at all? That alone helped me so much when I felt isolated and hopeless. If she hasn't, I hope she'll visit and read some stories from other people battling IC, too. :)

[SharonA]

:welcome: to the ICN...

Kim is right about this site helping you feel better. It was that way with me. From reading all the information about IC and reading the personal stories and posts, I found out that I am not alone and that there is help out there...and HOPE.

It is pretty common for people who are in constant pain to get depressed. You are doing so much to help by supporting your wife and learning all you can about this disease. Do encourage your wife to come here, get to know us and ask questions. I believe it will be of help to you both.

If it comes time that she feels the need to get professional help with depression, she should know that many of us here have done just that. There is nothing to feel ashamed about if that is what she needs. We all do everything we can to feel better and get back to life.

:) :) :)

[hogg297]

My wife became a member last month, and she is on the site several times a day. The site has helped us tremendous up to this point. It has been a very bad week. She is no stranger to pain or suffering. She has endometriosis as well. I have seen her through two bad knee injuries and some other surgeries, but I have never seen her this negative.

She feels she does not know how much longer she endure the pain, and she has almost stopped drinking to avoid the pain of voiding. She feels she has ruined my life and we will never be as happy as we were before IC. I've told that is a load of garbage!! All we have to do is figure out the new rules of life this way and play by them. To tell the truth I'm feeling why us? We had the perfect life until this. She is also feeling the same way.

I'm trying not to be selfish and put her first, but I sometimes I feel all alone in this. We have no familiy close, and no one outside the IC community will really understand anyway. I would do anything for her. I just don't know what that is.

[vickisue]

please just keep doing what you are doing-hanging in there and trying to find her help and reasons to believe it will not always be like this.as a wife with IC,i do understand her feeling that she has let you down-i always feel sorry for my husband becouse being intimate with him is hard on me.....and so i always feel guilty.
is she seeing a urologist she has a good repore with?that's important!
my daughter has endometreosis,and is engaged to be married in october.the pain she goes through with just that disease alone is very challenging on her and her fian'ce.

[karenmay]

hogg297, :welcome: that is great that you are so supportive and entering this IC network world too. That must encourage your wife greatly. I know I love it when my husband reads here too.
I was just diagnosed in November and my husband and I have had to learn to live completely different lives too. We are also very active people.
I can tell you this...it does get better! I'm not on any medicine yet. But I have noticed that by just being very strict with the IC diet and I have stopped running....I am not in as much pain this month as I have been before.
I rejoice in the small things. That is important to do.
We do need more rest than before....and to adjust to the kind of excercises our body can handle.
I can walk and I now join my husband at the gym on the stationary bike.
I'm not the same....but I do feel a bit better about life than I did before.
Baths are also very soothing and can be a safe intimate place to just be together.

I hope you two can find happiness in new adventures ahead of you and congratulations on your new marraige.
I wish you all the best!!


karenmay :flower:

[traceann]

Hey hogg297 :welcome: to the gang!! First let me say you are really wonderful for wanting to take an active role!! Kudos to you!

It's hard to feel rotten all the time. I remember when I was first diagnosed, I was literally in mourning for my old life. I felt guilty that my boyfriend (now husband) had to put up with it as well. It not only affected how I lived, but how he did too. It pretty much changed all of our "couple" activities. It was really hard, and there were some dark and tense times. I had a tendancy to forget he was affected too, and was also mouring what used to be before IC. But we kept the lines of communication open -- after learning the hard way what pent up emotions and frustrations could do! :biglaugh:

The best things he did for me was to lighten the load in all categories. He helped with the household chores, literally would send me to bed to rest and relax and he would clean house and do dishes (at that time he was only home on weekends, so he did 200% those two days! LOL). He would rub my feet (crazily enough, it would calm my bladder down -- so much so I hated to walk on them and undo all the relief he provided!). He would also field the friends too . If they wanted us to go out to dinner and suggested a pizza place, he would say "hey lets go to x, y or z instead!" so I wouldn't have to look like the complainer - again. He'd make sure we went some where I could find something to eat as well...

And he also provided a lot of tough love in the beginning, lol. He kept me in line...pep talks all the time, not the "oh honey, you'll be fine" kind of patronizing ones, but the "you are a strong person and you are letting it kick your butt. I know you better than that and I will not sit back and watch you lay down for it!" It really helped me keep "me" in perspective. I wasn't a wimp and he reminded me just what I was capable of. Also made me view it all in terms of I will get to better. I may have to take meds the rest of my life, but it's a small price to pay to feel good and get my old life back. And it definitely worked for me! It was way to easy to start the "I'll never feel good again..." way of thinking. Now, I have reached a point after 14 months on my meds of eating what I want, doing what I want -- and having sex when I want with no horrible consequences! ;) But, it I believe was all a combo of meds, diet and positive attitude.

I know how easy it can be to slip into depression due to IC, it's a very easy thing to do. If it weren't for my hubby, I have no idea where I'd be now. His support kept me going...and we took it on as a team. That was great. It wasn't just my problem, it was ours and how were WE going to handle it etc. Made me feel much better and less alone. He became my best friend in all of it -- he already was, but this just made it even more so.

Well, once again, welcome to the boards! There is a ton of info around here, so don't be afraid to ask questions, read posts etc. It's just amazing how much can be learned from these wonderful people!! :)

Oh and do encourage her to drink water -- and plenty of it. I know the first reaction is not to drink to avoid the voiding pain -- but dehydration can make it feel worse! Dehydration is a bladder irritant - ugh it's hard though, you don't want to go!! :toilet: But she's got to keep drinking at least the recommend amount of water... I am never without it.

Take care!

[hogg297]

I cannot thank you all for the good information you have given me!! Traceann your words of wisdom really struck home. My wife is by no means a quitter or let's a situation get the best of her. She has been through so much in her life as many other members I think to prepare her for this.

She was a competitive athleate in High School and College. She has an extremely strong will which is a good thing and a bad thing. Right now she does not want to face the reality of IC. She feels if she "gives in" to the IC lifestyle she has "lost". I've told her she will only loose if she let's IC control her instead of learning the new rules of the game and playing by them.

I've seen a lot of posts saying once the medicine regimen started working they could pretty much resume their regular lives. I wonder how true this is? I know the diet and medications are forever, but what worries me and her the most is our lives together. She is on elmiron and elavil now, but she has only been taking them a month and half. We both understand it takes several months for the meds to do their thing. The pain right now is what is getting her down. I want to be able to tell her the pain will bet better once the meds start to work, but I don't know if that is true myself. I want to be able to tell in 6-8 months we can have the sex life back we had when we first met. I know things will not be 100% the same, but I've seen so many people say it's pretty close just with new considerations.

Thanks so much for taking the time to help me and her out. You guys have been great!!

[ICB]

:flower: Hello:

Just a word of encouragement for you both. 80+% of IC patients find significant symptom relief via prescription medications, dietary supplements, diet, and physical therapy. The key is patience and persistance - it is vital to keep searching for the correct treatment option for your wife.

I could only get out of bed to go to the bathroom for the first year and a half after being diagnosed with IC - today, I lead a pretty normal life, I run a business, am an IC Support Group Leader and patient advocate, and have a very active life.

If you haven't heard of Pelvic Floor Dysfunction - your wife may want to have her healthcare provider check for that - it can make her IC symptoms appear worse, when in reality it's the PFD. PFD can be treated via physical therapy and prescription medications.

I suggest that you consult with your healthcare provider if you believe that the information above may be helpful; your healthcare provider will determine the appropriate treatment regimen for you.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes, ICB

[traceann]

I am so glad I could be of some kind of help! ;) It was hard to keep it all in perspective and my husband really helped a lot. I remember one time making a comment (about a totally different subject, lol) and said I was a wimp. He stopped painting the wall and said "you are NOT a wimp! Soft yes, (lol) but not a wimp!" I was a bit like, "um, ok ---honey -- whatever...." then he added that, all I had been through and what I dealt with I was certainly not a wimp, lol. It's so tough sometimes, I know how she feels -- even before I was diagnosed, and given Ditropan for my "spasms" I was having, I totally flipped out and cried for days, lol, all because it was something I had to be on the rest of my life, blah blah blah, and my hubby said, "well, would you rather take a med and improve your quality of life, or be with out it and be miserable?" Ok, he won, lol.

Yep, the pain can be a huge point to get you down. The diet in the beginning although boring as all get-out, was my best tool to use to my advantage. Wow. It sure made waiting for my medications to kick in, bearable.

I think my hubby and I went 2-3 months with no "intercourse", but there were other activities in there as the diet started to help things calm down. It honestly felt like going back to the "dating" phase, lots of making out, lol (some petting too, ;)) but no going all the way. I think we held that rule until the one day I finally felt in control of things enough to take it further. And he left it all up to me, which made me breathe a big sigh of relief -- I didn't have to worry about "performing" whether it hurt or not. I will admit I was terrified, but we took every thing slow, and it was wonderful. :) And happy to report we have gotten our old sex-life back. I tried to keep viewing it as a temporary abstinence. It was just something I/we had to do for a few months to help my bladder calm down. And as frustrating as it was, I am glad I didn't push it.

I personally kept my eye on the prize. Held onto to all the positive stories and thought if they can do it, I can do it. It can be that way for me too. There were some times when I had my pity parties, lol. It's hard to not think sometimes "oh my god, that's going to happen to me I just know it!" I cried in the beginning (hubby and I were still dating) "how am I going to work, how am I going to pay the mortgage, so of the girls can't work any more" and on and on..... He let me vent, then said, not worry about things that haven't happened yet, and may never happen. Every one is different and just because it happened to so and so, does NOT mean it will happen to you to. (thank goodness for him! ;) )

My one year anniversary of being diagnosed (I was diagnosed 11/2004), I made a comment to him on just how far I had come, and can't imagine and believe how miserable I was just a year ago,etc. He then started teasing me about how I was "certain" I'd never feel good again, and so forth. Told him it wasn't nice to tease the bladderly challenged, lol. Oh yeah, and sense of humor a HUGE help as well...I tease myself all the time... :biglaugh:

Take Care and keep on asking and we'll keep on helping! :)

[Glasshalffull13]

Hi. I'm a 6 month newlywed of a husband who has IC. It's been hard finding posts and info that I can relate to because IC is typically a female thing....But reading your post and the supportive responses was really encouraging. Thank you so much.

My husband too, doesn't want to "loose" to IC, and has had trouble managing the anger he feels. We've spent an awful lot of time this year in the hospital - including the honeymoon - for this and several other health reasons. Turns out that once the other complications started clearing up, he wasn't telling me he was in IC pain because he didn't want to upset me. The end result of our inability to communicate only meant I'd read into his frustration, thinking he was upset or irritated with me and left me feeling rejected or inadaquate. Plus, me with all these pre-concieved ideas of how I could be a "good wife", I've been trying all these recipes unaware that the ingredients were actually not helping. (I love all recipes with tomatoes...oops!) It's been a long road but we've recently just come out of a "dark period" and are now finding better ways to communicate. Thank goodness! :woohoo:

He's been networking to find better doctors & counselors to help us with this. The biggest thing that this web site has helped ME understand that this is something that goes "into remission" -- it doesn't get cured -- and that it is our responsibiltiy to manage the diet and meds to make that happen. I'm excited because my IC cookbook just came in the mail today, (got it from the IC store on this site) and I'm ready to jump in and shop at whole foods markets etc to find better alternatives.

I worry about my husband. He too will go all day not eating. He is extremely busy all day and would "forget" to eat anyway, (and overeat at night) but NOW that's magnified by being afraid of eating the wrong thing and he doesn't seem willing to try to change habits. Then he ends up with head aches because he's starving. He's having a real hard time giving up caffine. He resists bringing lunches with him, so I'm not sure how to help. I have done weight watchers and am used to keeping food diaries, so its not something that intimidates me, but my husband is a harder sell. I'm afraid he'll read my offering to help as nagging, so I'm really not sure what to do beyond trying to shop for "safe" foods that he might like, and wait for him to let me know what he finds out about new doctors.

Sigh - one day at a time, huh? Hang in there. Congrats on The wedding! I wish you well!

[traceann]

Hey there glasshalffull13! It was hard for me to come home for luches...ugh, I really enjoyed eating out at the local restaurant, or meeting there with girfriends etc. It was more about the socialization thing than the food. But now, even though I don't have to be as careful anymore, I enjoy eating at home...lol, who'd have thought! ;

My best advice is to just start cooking the friendly meals, even offer to pack a lunch for him if you can. Maybe just say what you said here, that you are used to food diaries and "special" eating, so it would be a snap for you to take care of that end of it for him - prepping the foods etc. It might make him more open to taking a lunch if he knows you will put it together for him and it's something he doesn't have to worry about. My hubby does the same darn thing, gets busy - forgets to eat. There is no way that would happen to me, lol. Then he gets crabby "for no reaso" ugh. So, I can totally sympathize in that area!!!

But anyway, hope you like the cookbook!! It should be really helpful for you both! Diet can (and is for most of us) a huge tool in managing symptoms!! :)

Hugs!!!